HOW ABOUT MEMPHIS

This should be an email forward, but never will be!

2010-01-03T16:49:00.003-05:00

I borrowed this from a blog I follow about another special needs boy.

You know you have a special needs child when...
* your kid's medical file is held inside several 3 ring binders
* the doctors at the ER know you by name
* friends don't ask you to watch their children - because they're afraid they'll have to return the favor!
* you're praying he has a brain tumor - because the anything else would be devastating

faux pas...
* being overly nice to my kid
* ignoring my kid
* treating my kid like there's nothing wrong
* Yes, that's right you CAN'T win!(Sorry, but I'm the crazy mom of a SNK - are you uncomfortable yet?)

the sunny side of having a SNK...
* a SNK is a bad-friend filter
* you get to take vacations to many big & exciting cities - like Detroit (Children's that is...)
* you truly appreciate every developmental milestone your child hits
* you begin to understand the essence of unconditional love - and strive to give it

Home for New Years

2010-01-01T13:06:00.014-05:00

After spending three days at our favorite insurance paid for accomidations, a.k.a Children's Hospital of Michigan, Memphis and I are home. We got released yesterday at around 12:30 and hit the road running. When the doctors did their morning rounds and said they would do the discharge orders that morning I started packing. Amazing what 2 people can accumulate in three days, even if one of them only weighs 30 pounds and has no clothes other than a hospital gown :) Thanks Grandma for bringing the items requested from home, we sure appreciate it.

So when Gary, the best male nurse on the 6th floor, came in with Memphis's walking papers, he was already in his going home PJs, ready to be strapped into his car seat, which was strapped to one of the wagons that CHM has for patients to use. See ya later, gator!

As to why Memphis and I spent 3 dyas at CHM, well that is a long story. Memphis had a seizure at 6:45 am on Tuesday. Memphis has not had a seizure since March when we tried to wean off the Keppra, so this one came as a surprice, but the sounds of Memphis's seizures are unmistakeable. Tuesday being my day off, I was sound asleep and Brad had already left to go clear snow. When I heard him yell I flew out of bed, across the hall and in the time it took me to do that, his seizure was over. So I took him back to bed with me and we both went back to some semblence of sleep. At 8:15 he had another seizure, again very short and no yelling this time, just stiffening and the head turn and rapid eye movement. Needless to say no more sleep that morning. We got up and attempted to do breakfast, which he promptly threw up. By that time it was 9 am and I could start calling doctors. I left a message at the neuro office and made an appointment to see the pediatrician that morning at 10:50. Memphis threw up another two times, had a loose stool and 3 more seizure by the time we got to the doctors office. The neuro nurse called back and said to let her know what the doctor thinks is going on, like an ear infection or something and then they would see about possibly adjusting meds.

While sitting in the peditricians waiting room Memphis had a sixth seizure, again very short in duration. By the time I could tell the receptionist and we got back to the exam room it was over. The doctor came right in and said he thought Memphis was Status Epilepticus, which is basically the brain remaining in a constant state of seizure, without becoming post ictal or fully recovering from the preceding seizure and I now know can be life threatening. The Dr said we should go to the emergency room, which is only a mile from his office and he would call and tell them we where coming.

When we arrived at the ER in Lapeer, they took us right in, faster than we have ever been served before, which should have clued me in on the seriousness of his condition. Upon getting into the exam room, the nurses started trying to get an IV going. The dr looked at Memphis's ears and throat and well as eyes. While trying to get an IV going Memphis threw up yet again, the fourth time and out his nose, whic really pisses him off and also had diarrhea right after we gave him rectal diastat, so of course that did not work. After several attempts and I mean several, to get an IV started they decided to do an IO, which is an intraosseous IV. I did not know what and I was and have since found out it is an IV that is inserted through bone into the marrow. Now when they brought out the gun that puts this thing in I asked the person who seemed to be the head nurse what it was. Keep in mind there is still a nurse trying to fish an IV into poor Memphis's little wrist and he had already been poked 4 other times. He was pissed and is being held down by three nurses and ER tech and his mommy. The nurse told me it was an IV that goes in his bone marrow. I must have gotten an awful look on my face and turned my head away. She continued in a very calm voice to tell me he had to have an IV and the was the best way right now. I was not arguing, I just was not going to watch while a Dr shot a needle that looks like a puch pin through my son's shin bone to get an IV started. In the mean time Brad had come into the room and I almost told him to leave when they did the IO, since I did not need him to pass out there. I know how he handles needles and if he had been any closer would have probably been in the bed next to Memphis. But after a loud pop and one yell, it was all done and Memphis had the IV he needed. They immediately started saline and then pushed some Ativan to break the seizure cluster. The dr ordered a dose of Rocephin to fight any infection that might be causing his seizure threshold to be lowered and said he thought he had slight ear infection. After a few fitful moments Memphis settled down and slept. At that point I could change him and get him cleaned up better from when he threw up. As he was laying there, he opened his eyes, looked at me, then turned his head to the right and his eyes started the rapid moevemnt again. I told the nurse who was in the room he was having another seizure and she immediately got the dr to order more Ativan. After the second dose my little man was pretty snowed.

After what seemed like an enternity the dr came back in the room and said that he wanted Memphis to be observed overnight, which I figured. And since we live in a rural area and Lapeer hospital does not have a peds unit it was off to Hurley, Mott at U 0f M or CHildren's, my choice. So my accomidations of choice was Children's since that is were Memphis's other doctors are at and if more testing had to be done I wanted his neuro in on the decision. When the ambulance arrived, we decided to give Memphis another dose of Ativan, since he was fighting to wake up and was extremely agitated. For those of you who have had a child strapped into a car seat who did not want to be in there, think about three times as bad, but half high as well. Not so much fun for the 90 minute ride to Detroit. So off to Ativan lala land again it was for the little man. When they went to load him into the ambulance, I went to side door, found my seat and buckled myself in. The EMT said, looks like you know what to do. I said I ridden in the amublance more times than I ever wanted to.

After arriving at CHM it was like a freak show, having a child with an IO IV. Seems as though those are not that common. Again, the ER nurses tried to get another IV started in his foot. Ever wonder how many times you can stick the foot of a poor two year old. Evidently 5 is the limit for one foot. By this time he was half waking from him Ativan land and was again agitated and pissed. So the ER doc decided to give him yet more Ativan, evidently you can give a little person Ativan each hour, because believe me, I asked. Back to be in lala land again. Then the IV team came in and actually got an IV started in his arm. The dr came in and said that she has spoken with neuro and they said to up his Keppra to 4ml 2x daily and to admit him to the 6th floor as a pediatric patient with neuro consult. Ok, sounds fine, but when I had talked to the neruo nurse that morning she said he was close to the top dose of Keppra and I again confirmed the dose was OK and was told yup, good to go with 4mL for Memphis's weight.

By this time I had told our story to the pediatrician, the neuro nurse over the phone, the ER nurses, the ER doc in Lapeer, the EMT, the intake nurse at CHM, the ER nurse at CHM, the physician's assistant at CHM and then the ER doc at CHM. And I would tell it again to a new nurse and doc ever tweleve hours while staying at our chosen accomidations. I was also forced to tell nurses, docs and nurses assitants what his seizures look like and to explain that he was not have seizures when they would take his temp and BP every 2 hours, he just does not like to be messed with when he is sleeping. He gets that from his dad.

While waiting to go to our room, the nurse came in to check Memphis's sugar level, since I mentioned that he had not eaten all day and had thrown up what little he had eaten that morning. It was a little low, so they gave him a glucose solution. The nurse came in and was saying over she shoulder to have another nurse note in his chart that he was getting 500mL for 21 kilos of body weight. I stopped the nurse and said how much did you say he weighs? She said 21 kilos. Now I am not good at metric conversion but I do know there are 2.2 pounds in a kilo and I KNOW Memphis does not weight 42 pounds, he weighs 28-29 pounds. I told her this and told her that he would not be getting a higher dose of Keppra until someone checked with Neuro again on the dosage level for his correct weight, because I know there is a fine line between the upper doses and toxicity, which is very bad. Evidently there was a miscommunication between the EMT and the admitting nurse in the CHM ER and the wring weight got written down. The dose of his Keppra was double checked with Neuro and adjusted to the correct weight.

So after a long day, we settled into our room on the 6th floor. I would be remiss if I did not mention how impressed I am of the nursing staff at CHM every time we are there, which thankfully has not been too often. We got transferred from the ER to our room at around 7:30 p.m. We had arrived at CHM at around 3:00 but did not get upstairs until late because the floor nurses do not like it when the ER nurses send a patient up to them who is in lala land from all the Ativan. Imagine that. We spent a pretty uneventful night in room 606, a private room no less, since so many kids at CHM had the flu and Memphis's nasal swabs said he did not. Which is good, better for sleeping when you do not have room mates.

On Wednesday morning he woke up groggy but happy. We snuggled in the chair for a while, until he threw up stomach bile. Yuck, what a way to start a morning. Then it was meds time, which he kept down. After the meds had settle I tried to get him to take a sippy of Pediasure, which he drank 6 ounces. After about 45 minutes I tried some peaches and cereal, which he took three spoonfuls and firmly closed his lips. About 5 minutes later he gave it all back, peaches, cereal and most of the Pediasure. Over the next hour he gave more of the Pediasure back. I told the nurse, who was surprised. I said, he threw up four times yesterday, I have been telling everyone that since we went to the ER in Lapeer. The doctors made rounds and the neuro doctors said they thought it was combo of him having an ear infection and outgrowing his med dosage. They would leave it up to peds to discharge us if they thought it was OK. The peds doctors came in and said that they would leave it up to neuro to discharge us. OK, who get to make the call?! Then I told them that he was still throwing up. What, throwing up? Yes, puking, vomiting, barfing, whatever you want to call it, he was giving back all of his stomach contents. I told everyone this yesterday. Was he having diarrhea? He had some yesterday, but when you don't eat for over 24 hours then throw up whatever you do eat it is hard to have diahhrea isn't it? By this time I am getting a little frustrated. So the peds doctors say, maybe he has a stomach bug and that helped to casue the seizures as well as the med dosage. I ask about the ear infection that all the ER docs have talked about. Ear infection they ask? OMG I am going to murder the next doctor who asks a stupid question. So again I explian what three doctors and nurses say they have seen in his right ear and that he had a swollen lymph node. Oh, maybe they should take a look. Ya think. Now I should tell you that I have the utmost respect for the doctors at CHM, but as a parent I am the advocate for my child and I know that something caused these seizures and I will push the doctors until I am satisfied with their explaination and diagnosis. I know that their major concern was getting the seizures stopped but my major concern is making sure they do not come back and if something besides Memphis growing is causing them that I want that treated and I mean right now.

So all the doctors leave, saying that if Memphis can keep down some fluids today then we can go home late in the afternoon. Well about an hour later, around noonish Memphis throws up again and this time there is some red bloody looking mucus in the puke. I tell the nurse and then when the resident comes back to check Memphis's ears. Yeah, his ears, which she says the right one is pretty red but not bulging so maybe the antibiotics administered in Lapeer have begun to work on the infection. Oh, ear infection huh. Amazing I said that yesterday and I did not go to school for a million years to become an MD or DO. I tell her he threw up again and that there was some blood in it. Of course this requires another night in room 606 to make sure he can keep food down and that he does not have a torn esphogus or stomach. Well, I think he threw up 8 times in 2 days, maybe his throat is irritated but I would rather stay than go home and have it be something serious and take this roller coaster ride all over again. I must say that the docs at CHM are not afraid to keep a kid an extra day if they are not completey sure he is ready to go home, unlike some other hospitals I have dealth with who just want to open up the bed for someone else. So because he kept throwing up they give him something to settle his stomach, Zofran, which worked great. We started feeding him 2-3 ounces of Pedialyte and had to practically pry the sippy from his mouth. After he kept that down he got another 4 ounces and all was well. So that evening he got 8 ounces of Pediaure over a three hour period and kept it all down. He was one hungry little bugger.

The next morning we started with meds, then 8 ounces Pediasure and 3/4 cup cereal and applesauce, which he devored all of it. I have never seen Memphis open his mouth for food like that. It was like as soon as I said open he opened his mouth and kept it open until he was sure the spoon was in there. He drank another 16 ounces Pediaure before they came with our discharge papers and we wheeled our way out of the hospital to celebrate New Year's Eve by going home and going to bed early.

(I do have some photos of Memphis at CHM, since Grandma had her camera in her purse. The camera is not one of the things I thought to grab when left the house Tuesday morning.)

Its Been A While

2009-12-18T10:10:00.002-05:00

I have not posted for a while, for a lot of reasons, but there is much to catch up on.
So for thew next few days I will try to tell you about all that has happened with Memphis in the last two months. So look for posts on...
Getting his AFOs
Christmas tree and the walker
PT and OT
and much more.

Therapy Swing Fundraiser

2009-10-29T08:15:00.002-04:00

So, a couple of weeks ago my family (Competitive Fred) held our annual charity fundraiser. The back story on this is that my family participates each year in some sort of charity fundraiser and each year a different person picks the charity and organizes the events. This year it was my turn and I chose to raise money for NB elementary to help them buy a therapy swing for the Early Childhood Development and cognitively impair students to use. The fundraiser was a success and we have raised almost $800 so far and I will be meeting with a couple of local civic groups to ask for their support as well. So hopefully we will be able to raise the total amount needed to get the swing system.

So I met with the teacher during Memphis's IEP and we got to tour the room were the therapy swing will be located and after she explained what she had in mind and what the general needs of most of the students are, I realized that what she really needed was a swing that could do more than just be a swing. So did some research and found the Class Champs Indoor Gym. You can use it with several forward/backward attachments and even add a climbing wall, or you can take all the other swing attachments off and use it with one single 360 degree swing. The swing costs around $1600 and it is $600 for delivery. Either way, if we raise it all or just some of it, the school will be that much closer to getting a therapy swing and Memphis will be using it next year when he goes to school.

Sick Days

2009-10-28T17:10:00.004-04:00

Someone once told me that you got to work when you are sick and use your sick days when your kids are sick. That is so true. I am home with Memphis today, who is still sick. He has a pretty good cough, but it is not coming from his chest which is good. Means no pneumonia. Still fighting the stuffed up nose and drainage too. Just an old fashioned cold. So today while home from work with a sickly kid, I cleaned and degremified the house. I know I cannot protect him from all germs but I can control them a little in my house and I can hopefully cut down the chances that Brad or I will have to actually use a sick day because we are sick.

Wordless Wednesday

2009-10-28T08:53:00.001-04:00

AQUA THERAPY

Memphis loves the water and he is so relaxed. His therapist says she can get so much better stretched from him without him fighting her or crying. They have been working on pushing off the walls with his legs and his hands, as well as balancing and hanging on to the noodle and even splashing. As you can see, he loves it.

Urg, sick!

2009-10-27T19:53:00.008-04:00

I am hearing about a lot of sick kids and schools closed due to the flu. Well, I guess we are all in the same boat except Memphis does not have the flu, he just has a cold, but sick is sick and it sucks with any kid much less one that cannot tell you what hurts and how to fix it. I have been off work the last two days and we cancelled all Memphis's therapy on Monday and Tuesday and have stuck close to home. He is getting better and woke up this morning with just some congestion. So I'm thinking as long as tonight goes OK and we both sleep well, that I will be able to go to work tomorrow without to much worrying.

Then the school were Memphis gets his physical and occupational therapy called. The director of special education wanted to tell me that a student that gets PT and OT at Ed-tech is the hospital with H1N1. The real kicker is that the sick student had therapy either right before or at the same time as Memphis last Tuesday. Yeah, great, just awesome. Well, Memphis got his first H1N1 shot on Thursday, two days after he was exposed to it. Woohoo for karma. I calmly told the special ed director that I did not think that Memphis has H1N1, just a cold and he just asked that we keep them informed of how Memphis is doing. So then I hung up and proceeded to have a minor freak out. I called the Dr. and asked when I should get worried about Memphis and H1N1. They told me that he does not have H1N1 as long as he does not get any new symptoms, like vomiting and fever. OK, so he has not fever or vomiting so that is good, but we are supposed to take him to the Dr. at the first sign of fever or vomiting.

So then tonight during our nightly meds ritual Memphis decides to have a gagging fit. He does not, I means, HATES, the claritin and will gag whenever it hits his tongue. Then he gags on all the rest of the meds he has to get each night, i.e. seizure meds. We try to give him the claritin first and then let him settle down before we do any other meds. Tonight it did not matter and he gagged on his Topmax sprinkles and proceeded to throw up all of the meds. Awesome, sweet potato orange vomit with cold medicine smell and Topamax sprinkles mixed in. My favorite.

So after a quick change of wardrobe for Memphis, a high chair and floor clean up, we tried the meds again and I guess second time is a charm. So off to bed for all of us, so that if tonight is OK and everyone wakes up feeling well, it is back to our version of normalcy.

2009-10-17T21:41:00.007-04:00

I just had my first true WTF moment about someone's opinion of Memphis. My husband had an encounter with someone we know and it is a good thing it was him who had this conversation because I would have blown a gasket and totally belittled this person, not that I don't think they deserve it.

Brad overheard someone we know talking about their baby and telling a family member that they are glad that he is doing good and that they had been scared that he would be like Memphis. She saw that Brad ahd overheard an he was very diplomatic about it and his reaction was that he hopes that no one has a child who is like Memphis, who has to work so hard to just to do simple things that other people take for granted. I on the other hand took it like this:
You don't want a a child like Memphis? Not retarded like Memphis, not disabled like Memphis, not a boy with a brain malformation like Memphis, not a boy stuck in a body that won't do what the tells it because of cerebral palsy. That is what she sees when she looks at Memphis and she knows us. She knows Memphis, she knows his smile, his laugh, his personality. She does not see that he is a happy two year old, who is pretty smart, with loads of determination that will help him to overcome his physical limitations. If someone who knows Memphis cannot see past all of the other things to see who he really is what will people who don't know Memphis think and see?

Brad thinks I am totally over reacting to this and we have agreed to disagree to keep peace in our house. But I know that I will now have a hard time not saying something to her in the future. Sure, everyone who is expecting and baby wants their child to be healthy and normal. We wanted the same thing. We did not ask to have a child with a genetic deletion that only one other person in the world has been diagnosed with. We did not ask to have a child who would have to work so hard just to do things that most people just learn to do. What we did hope for is to have a child who is happy, a child who has a smile that can light up a room, a giggle that will make your heart melt and we got that and so much more.

Finished IEP

2009-09-26T11:05:00.009-04:00

Memphis and I went to the school yesterday to "finish" his IEP. He was very excited to check out the early childhood development classroom with all the bright colors and the cool ABC rug. I on the other hand was not so excited. As you may remember we tried to do Memphis's IEP on 9/11 but they did not have all the information from the therapists and no one knew how to run the new easy IEP program. The meeting did not start out well because the teacher was 15 minutes late to the meeting. She has been consistently inconsistent before on her arrival times for visits in the past so this did not surprise me. Irk me yes, surprise no. The teacher is kind of flaky and that has been confirmed by other parents of children in her classroom and school personnel. I have also been told she is VERY good with the children in her classroom and that makes me feel a little better about sending Memphis to school next year, but a not a lot. I do not want someone "flaky." I want someone who is organized, on point and an eagle eye watching over my child. On the other hand, I want someone loving, caring and understanding with him as well and she is all of those things.

The content of the IEP is pretty bland. Memphis will continue get PT, OT, ST and the teacher will come to the house as well. We will see how next fall's IEP goes, as that will be more in depth as he will be starting in the ECD classroom and the school will have to make provision for him and his needs. I have heard horror stories but North Branch seems to be pretty good.

There was one snag. On the 11th the teacher was doing her assessment, which consists of asking me if Memphis can do a certain thing and circling that thing on a chart if he can. This is how she makes he goals for the coming year. So she asked all her questions and was telling me how happy she was that Memphis had learned so much and how excited she was she could circle so many activities. Then she says something that completely took the wind out of my sails. The teacher said "Memphis is doing really well, he is functioning at the 5 month level right now." I felt like some had just punched me in the stomach. So all these thoughts start going through my head, "Only at the 5 month level, really. I know he is smarter than that, I know he can do a lot more than what your silly chart says. Then the teacher asks me what my concerns are and at that point I kind of break down and a few tears escape. I explained to her that no one had ever told me an age equivalent before and it was kind of a shock. I told her that my biggest fear is that I know Memphis is smart and understands a lot and that he cannot communicate it. That he will be trapped inside because his body will not cooperate. That is my biggest fear.

IEP Yuck!

2009-09-15T09:08:00.006-04:00

I have heard a lot of parents say that they hate going to the IEP meeting and doing IEPs. I have only done one before and it was a pretty good experience so I really had no experience as to why other parents hated the IEP meetings. No I understand.

For those of you who may not know, an IEP is an individual Education Plan. All children who need special assistance from the school have one, or should have anyway.

Well, I went to Memphis's IEP meeting last Friday. Needless to say things did not start well. When I took Memphis to therapy last Tuesday I was told by his Early On coordinator that his IEP expires that weekend and we needed to get one done ASAP. Well guess what, it is not my job to know when it expires and make sure he gets a new one done. They immediately called the teacher, who is the person who has to make sure his IEP is up to date and in effect to start the process. She called Wednesday at 3:00 to set up a meeting for Friday. I called her not longer than 10 minutes after she called me and she had already left for the day. I hate it when someone does that. She wanted to set up a the meeting for Friday, but in the middle of my work day. Well, since I commute and hour each way to work that wasn't going to be easy to do and I would have to basically take the whole day off and for any parent using a sick day up on something that is not important is a big sacrifice much less a parent of a child who sees multiple Drs, those sick days become precious. After doing some checking to reaffirm that the IEP meeting has to be done at my convenience, I called back to set it up for either 8am or after 3 pm so I would only have to take a couple hours off. We settled on 8am.

When I arrived at the school, first I was in awe. That was the first time I had been in the new elementary and it is really nice. I met with the teacher and we sat down in the principals office, as the principal was going to sit in as well. Memphis's PT was there as well. They explained there is a new computer system for doing IEPs that should make this easier. Yeah right. It is only easier if someone knows how to work the program. Most of the meeting was spent trying to figure out how to get the program to work, not talking about Memphis's needs. They also did not have all the information they needed from the speech therapist or the occupational therapist, since the meeting was put together on such short notice. So basically, I spent two hours watching the teacher try to make the computer program work and still did not get the IEP completed due to not having all the information available. So now I haveto go back for another meeting later, when all the info is available. Needless to say I was very frustrated when I left there, I cannot tolerate people who waste my time by being unprepared and unorganized.

More on the content of the IEP to be posted in the future.

A Bit of a Rant

2009-09-10T14:07:00.005-04:00

Lately we have come across a lot of people that want Memphis to say hi to them or look at them when they say his name. Often he will look but rarely does he say hi to just anyone, especially if he does not know them. These people act like he should sit up and beg, i.e. do whatever they are saying, just becuase they ask him to. And when he doesn't they just keep saying "Hi, Memphis, can you say HI?"

YESSSS! He can say hi, but he does not have to just because you ask.

My son is NOT a dog, nor is he a paid circus performer. He is a little boy. He is a two year old, with a personality and mind of his own and if he does not want to say "HI" that is ok. He does not need to say hi to every person who thinks he should, even if he does know you and especially if he does not know you. So stop treating my child like you would a dog or someone from the circus. Just because he has CP does not give you the right to treat him any differently then you would any other two year old, so just stop.

When he wants his voice to be heard he will let you know. Just like yesterday Brad and I went to Home Depot and Memphis was styling in his new MiaModa stroller (love it by the way). Brad and I were discussing deck stains and trying to figure out what to buy for our deck. We had been conversing for several minutes when Memphis all of the sudden burst out with what sounded like "Yeah that one". It was rather comical, but again he was making himself heard.

A bit of a rant, but it feels good to get it out.

Bowling Fundriaser for Therpay Swing

2009-09-05T10:33:00.004-04:00

Each year my family does some sort of fundraising for a charity and our "team" is called Competitive Fred. We have done fundraising and events for MS, Lupus, breast cancer research and this year it is my turn to select the charity and plan the event. I knew a long time ago what I wanted to do, but have finally had the time to put it all together. This year Competitive Fred and friends will be raising money to help North Branch Elementary Early Childhood Development purchase a vestibular therapy swing.

What is a vestibular therapy swing you ask? Below you will find a picture of one. Therapy swings can have many interchangeable attachments to suit what ever a child's special needs may be. These swings are beneficial to all children with special needs, especially those with ADD, ADHD, Autism and Sensory Integration issues.

Why does NB elementary need a therapy swing? As moms and teachers everywhere know, kids have a lot of energy. They need to move and play to get that energy out. This is true of all kids but this necessity is taken to a whole different level when dealing with kids with special needs. Children with ADD, ADHD, Sensory Integration issues, and Autism all benefit from daily movement and stimulation. Although each kid is different, occupational therapists often use various kinds of swings and swinging techniques to help these kids regulate their bodies. Swinging therapy helps kids focus and increases a child's body awareness.

Occupational therapy is a key component to a successful program for kids with Sensory Integration Dysfunction (SID). Swings of various kinds are used to help regulate the vestibular system and some can provide proprioception for calming kids down and increasing body awareness. Often times parents find carrying over occupational therapy techniques into the home a daunting task. Many parents turn their family rooms in an OT clinic but not everyone has the skills or ability to hang swings from their ceilings or cover their floors in mats. The best solution for most families is an indoor swing that has a variety of attachments and a solid support bar.

Camping

2009-09-01T21:11:00.008-04:00

We took Memphis camping for the first time this summer. Of course we had to go on the hottest weekend of the summer. Actually, the only hot weekend of the summer. We also took Memphis swimming for the first time too. He enjoyed it, so we plan to try to do more. Maybe even an indoor water park this winter. As you can see, he got in some cuddle time with Grandma and his cousin Nevaeh got to practice her reading skills, in preparation for 1st grade, and read a couple of books to Memphis. Hopefully all the planets will align and I will have some time off next summer and we will be able to do some more camping.

Toys for Children with Diffabilities

2009-08-27T14:04:00.004-04:00

Way to go Toys R Us. It is nice to see that a major children's retailer recognizes that children with diffabilities need play time and toys too and they need to be economical. Even though these toys are regular, off the shelf toys, it is nice that they are all compiled in one place, separated by skill set and that I do not have to spend precious time (better spent on therpay or playing with my child) to figure out which toys would do what and how they might benefit Memphis. Youc an see the completed guide by clicking in the picture to the left and be sure to check out the video by Whoopi Goldberg as well.

What is the Toys"R"Us Toy Guide for Differently-Abled Kids?
As a company committed to all kids and families, Toys"R"Us, Inc. has a long history of supporting the special needs community. For nearly 20 years, we have published the annual Toys"R"Us Toy Guide for Differently-Abled Kids, an easy-to-use resource featuring specially selected toys that aid in the development of children with physical, cognitive or developmental disabilities.During the past several years, Toys"R"Us has worked with various personalities who have served as the "face" of the Guide. Among the many celebrities are Meredith Vieira, Maria Shriver and Marlee Matlin. The 2009 cover features Whoopi Goldberg, mother and grandmother; Oscar, Tony, Grammy and Emmy Award-Winner; and child advocate. Click here for a complete gallery of all Guide covers. This complimentary, one-of-a-kind guide speaks to a child's individual needs and offers qualified toy recommendations based on research from the National Lekotek Center, a nonprofit organization that evaluates all of the toys featured in the Guide.

What does "differently-abled" mean?
We use the term "differently-abled" to stress that all children have unique skills and abilities.

Why was the Guide created?
Toys"R"Us founder Charles Lazarus heard from customers and store associates about the challenges of finding appropriate toys for the special needs children in their lives. As a result, in 1994 Lazarus spearheaded the creation of the Toys"R"Us Toy Guide for Differently-Abled Kids. Since then, Toys"R"Us, Inc. has published the Guide every year, distributing it in stores and, since 2006, making a digital copy available.

Who uses the Guide?
Anyone who knows and loves a child with special needs will find the Guide to be a valuable resource. Since its inception, thousands of parents, relatives, friends and professionals have relied on the Guide to help them determine which toys are suitable for a child's particular abilities. The Guide also offers the National Lekotek Center's "Top Ten Tips for Buying Toys," which encourages relatives and caregivers to ask pertinent questions before purchasing a toy for differently-abled kids, such as, "Will the toy provide a challenge without frustration?" and "Can play be open-ended with no definite right or wrong way?"

What do the symbols represent?
Because all kids are unique regardless of ability, toys are not categorized by disability or disorder; nor are they categorized necessarily by age. Instead, symbols are assigned to each toy so parents can find those that promote different skills, such as auditory, language, social, creativity and more. In this way, the Guide helps parents of all children choose toys that help build or reinforce a variety of skills. All toys in the Guide have been designated with at least two or more symbols. There is also an easy-to-use toy selection index that lists toys according to the skills they help develop, so parents can quickly find toys that most benefit their child's development and learning.

How are toys selected for inclusion in the Guide?
Toys"R"Us works with the National Lekotek Center, a nonprofit organization that evaluates hundreds of toys based on specific criteria during therapeutic play sessions to identify toys that best contribute to the development of children with physical, cognitive or developmental disabilities. The National Lekotek Center carefully reviews hundreds of products, selects those with exceptional qualities and writes descriptive copy highlighting the features that make the items suitable for children with special needs. For nearly 30 years, the National Lekotek Center has provided therapeutic play services to thousands of children in dozens of centers across the United States. As a result of this expertise, the organization has become the leader in determining appropriate toys for children with unique abilities. You can learn more about the National Lekotek Center by visiting http://www.lekotek.org/.

Are there Safe Play Tips specifically for children with special needs?
At Toys"R"Us, nothing is more important than the safety of your children. Safe Play Tips, created with guidance from leading safety and special needs organizations to help parents and caregivers avoid playtime injuries, are included in the 2009 Guide.

Where can I buy the toys in the Guide?
All toys featured in the Guide are available at Toys"R"Us stores nationwide and online at Toysrus.com/DifferentlyAbled. Toys featured in the Guide are everyday playthings suitable for children of varying skills and abilities.

Where can I get a copy of the Guide?
Copies of the Guide are available at all Toys"R"Us and Babies"R"Us locations nationwide. If you represent a special needs organization or are a special needs educator or therapist, you may e-mail DifferentlyAbled@toysrus.com to receive copies in bulk for redistribution. A "flippable" digital version, as well as a downloadable version in both English and Spanish, can be found by clicking here.

How can I get on the mailing list to receive the Guide next year?
The latest version of the Guide is available every September. You can e-mail DifferentlyAbled@toysrus.com to be added to next year's mailing list. For a more environmentally friendly option, click here to receive an e-mail alert when the latest Guide becomes available online.

Wordless Wednesday

2009-08-19T09:04:00.009-04:00

Above: Memphis is trying to get his eye patch off. Great use of his hands, even if it is counter productive to helping his eyes.

Right: Birthday cupcake for the new two year old.

Below: Memphis in his "new used" jumper. We shortened the springs and made it taller and he loves it.

Hello Melanie

2009-08-18T20:59:00.003-04:00

Melanie-
I just wanted to tell you that I hope your DE-FUNK-IFYING process is going okay. I get in funk mode too but I have not been at this as long as you have so I cannot say I know what you are going through. What I can say is that you, Daniel and your family have been a great tool for me and mine. I read your posts, I see what Daniel is doing and it gives me hope for Memphis and what he will be able to do too. I know we both have a long road ahead but keep in mind that you love your child and no matter what he loves you too. Just do the best you can and know that it is enough. Daniel knows it is enough and that is all that matters.

Timelines

2009-08-11T22:09:00.006-04:00

My cousin sent me a message on Facebook about a medical school lecture she heard from special needs parent. That parent, who has a downs child, said "We did not lower our expectations, just extended our timeline." I think this is so true, with most special needs parents. I believe that Memphis will walk. I know he is really smart and understands a lot, just can't tell us he knows. I see a beautiful, smart little human when I look at him and I just hope that everyone else looks at him the same way.

Fair Time

2009-08-07T10:52:00.002-04:00

We have been at the fair all week. (I will tryto post pics soon). Well, I have been at the fair all week and Memphis comes with me, when I do not have other duties to attend to like the pig show or the auction. It has been a good week and it is almost over. So today at the fair I will be taking Memphis to the circus. yes our county fair has a circus, all be it a small circus, but a circus just the same. Memphis has seen a lot of things this week, but so far his favorite is the cattle. We watched the beef show and he really got excited every time the cattle came into the arena. We don't have cattle at home and I don't really plan on having cattle, but I think I can manage to take Memphis to visit some friends cattle if he continues to like them so much.

It also never ceases to amaze me the people who "know" Memphis. We live in a very small town, less than 1000 people live in town, so it is easy to say that everybody knows everyone. All week at the fair I have had people come up and talk to Memphis or ask me about him. Seems as though he has quite a fan club and he graciously accepts everyones cooing and telling him he is adorable with great aplomb. All in a days work.

Updates

2009-07-29T20:21:00.003-04:00

Memphis went to the 4th of July parade in NB. He liked most of it, but petered out right before the fire trucks and fell asleep. This is a photo of him at the parade in his fishing hat.

Memphis is doing very well. He has been eating well, sleeping good and doing well at therapies. His OT from early on is very impressed with his "munching" skills and he is showing a lot more interest in food. Not only his baby food, but big people food. Grandma was feeding him teddy grahams and his day care lady fed him toasted coconut marshmallows and he liked them. His balance is getting better each day and he even sat up for almost two minutes by himself. That is really good. Last week at therapy he was "playing" with switch toys, that when he hits the switch it says "Blow bubbles please" and the therapist blows bubbles. The speech therapist was having him try to hit the bubbles with his hand. I said pointer and he brought up his index finger and hit the bubble. The speech therapist was very impressed. She was shocked he knew what pointer was and that he knew to use it when I asked for it, even if he sometimes doesn't get it straight or out at all, but he did that day.

Snapshot Tuesday

2009-07-21T09:21:00.011-04:00

Sometimes photos say things better than words.

This photo was taken about a week before my Grandpa passed away. Grandpa was always concerned about Memphis. As soon as Grandpa would get him in his arms Memphis would settle right down and be still. I think they shared a pretty special bond that was not communicated with words.

I've got two of the best looking guys in town.
You can really tell who Memphis got his eyes from.

Even though I do not like having my photo taken, I think this one turned out pretty good. Memphis can sleep anywhere.

He will be sadly missed.

2009-07-12T10:41:00.003-04:00

Lee Kreiner

Husband, Father, Grandfather and Great Grand Father

He touched all of our lives and hearts and will be sadly missed.

Treasure Remembered
© James M. Carr
For all the stories that were never to be told,

Back to a time when I was a boy so long ago,

I knew a man whose kindness touched the hearts of many,

And he would often be the first to lend you his last penny,

Yes his heart was pure gold forged from out of love,

Right from the hands of the almighty who sits high above,

There were times I must of drove him crazy as if he were my toy,

With all my “want to’s” and “why not’s” when I was a boy,

He loved and cared for all those that he knew,

His family, friends and most of all you,

Many happy memories I carry within my heart,

Vowed never to forget and never to be apart,

As a boy I would look up to this man with great awe,

For you see he was my friend and he is my Grandpa.

Good Dr Visits

2009-07-12T09:56:00.009-04:00

We went to see Dr. Chughani, the neuro dr, last week and had a good visit. I really like Dr. Chughani and his nurse, Ruth, is the best. They listen to you and I mean really listen. It is like you are the only other person in the world at that moment and they really care about what you are saying about child. This is really refreshing when we see so many nurses and sometimes doctors who just want to get your information into the chart and don't really listen.

We asked about Memphis's "startles" which I have mentioned previously. I had asked about them at our last visit in Feb. and the Dr requested we get them on video, so after a few failed attempts we did. I showed the Dr the video and Memphis actually had one when the Dr was watching him. The Dr then told us that he thinks they are mycloinc jerks, which are common with central nervous system disorder, like CP and epilepsy. Dr. C said unless they become more frequent and more steady not to worry. It even explains why Memphis gets the hiccups a lot. So that is really good news, since I was worried they could be some new form of seizure. Here is what I found out about myclonic jerks:

Myoclonus is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign and, generally, is not a diagnosis of a disease. The myoclonic twitches are usually caused by sudden muscle contractions; they also can result from brief lapses of contraction. Contractions are called positive myoclonus; relaxations are called negative myoclonus. The most common time for people to encounter them is while falling asleep (hypnic jerk), but myoclonic jerks are also a sign of a number of neurological disorders. Hiccups are also a kind of myoclonic jerk specifically affecting the diaphragm. Also when a spasm is caused by another person it is known as a "provoked spasm".

Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, Subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD) and some forms of epilepsy.

Dr. C was also happy with how Memphis is doing on his other seizure meds and that we will not be changing his meds unless we need to because of breakthrough seizures. It would be nice to wean Memphis off the seizures meds but if his body is not ready right now it is just not ready.

Other good news is that Dr. C wrote a script of Memphis's pediasure and he has made notes previously about Memphis low weight on the growth chart so that should get the ball rolling again on getting the authorization from Medicaid for the pediasure. Ruth, the nurse, is also going to recommend that the dietitian Dr. C works with to contact us. I guess I am Ok with that. I am a little wary of adding new doctors or specialists to our list. We have been doing pretty good narrowing down the number of doctors we are seeing. Plus I do not want someone telling me how and what to feed my kid. It just feels like a bunch of people who do not know me or Memphis trying to tell us what is best for him and us. One more thing that they are trying to take control of. But on the other hand, if they have ideas that may help, I guess talking to someone may not hurt and I can always say no. So I guess we will be giving the dietitian a try.

We also went to see the eye doctor and she was happy with Memphis's improved focus. But we have been noticing that when Memphis is tired his eyes have been drifting again and she saw a little when we were in her office. We have been seeing them drift in and she said she saw some drifting out on the right eye. Keep in mind this is more prevalent when Memphis is tired and we had been keeping him awake for the eye doctor for almost an hour while we were sitting in the waiting room, so if she only saw a little that is pretty good. But she recommended that we start patching again. This involves putting a patch, made out of band aid material, on the strong eye to make the weak eye work harder and get stronger. So Memphis wears a patch on his left eye for 2 hours a day now.

The funny thing about patching Memphis's eye is that he uses his little hands to rub his face until the patch sticks to his finger or thumb and comes of his eye. So the other day at the babysitters he was wearing his patch and rubbing to get it off. He got it off once or twice then the sitter put a ring toy around his arm so he could not get his left hand to his face. So the little stinker started to rub his face with his right hand. Which other than being annoying is pretty cool that he can figure out that is using the left is not working so try the right. I will take some pictures with Memphis and his patch to show how cute he is.

Sometimes It Is So Hard To Keep Fighting

2009-07-03T10:26:00.005-04:00

I am so sick of fighting with insurance and providers to get Memphis the things he needs. Not the things I think he needs or would be good for him, but the things his Doctor say he needs. Don't get me wrong, I am really grateful that our government, state and federal, provide funding for Medicaid to cover some of the extra expenses of having a special needs child. But the programs have become so complicated and convoluted that it is almost a full time job to keep track of it all.

right now we are fighting to get Memphis's Pediasure covered. This is the third time we have had to do this, so I should be getting good at it, right?! Wrong, each time something minor changes in the program or a Dr didn't use the right code or something and we have to start all over again. Of course it takes 4-6 weeks for Medicaid to tell you something is wrong with the original request then another 4-6 weeks to approve it, if they are going to approve it. In the mean time, we have been buying Memphis's Pediasure, which amounts to around $5 per day plus his other food. That really starts to add up after a while. The Medicaid contact person made it out like I should have done something different, that I was supposedly contacted in December and I should have appealed then. Well, excuse the hell of of me, but does she have a child who has special needs? No she does not. Does she know what it is like to have to juggle all of these things and still have a job and maintane some sort of normalcy for yourself and your family. No she does not. So if I forgot to file some paperwork or make a phone call then I should be cut some slack. Then the Medicaid lady said she thinks we may need to see a Nutritionist. Great another Dr. Well, until his primary care or his GI says so I don't think we will be adding a nutritionsit to our aresenal of Doctors.

Of course, in the grand scheam of things it seems like this expense and not getting the Pediasure is minor, and it is, but when you are dealing with it, at the time, it is not. It is one more small thing piled on top of a lot of other small things. What worries me is that we will be doing this for a long time, possibly for the rest of Memphis's life and that it will never end. That is so daughnting.

Back to our version of normal.

2009-06-16T13:20:00.004-04:00

Memphis is no longer sick. and is doing much better. He did turn out to have a touch of viral pneumonia. No idea were he got it but it is now gone.

Sunday when I was giving Memphis his bath and we were playing with his boat, which plays music, he said boat. Well, it sounded more like MMMMOOAATT, but I knew what he meant. Of course I could not get him to say it again. He also thinks it is hilarious when we try to get him to say daddy. The surest way to get Memphis to start laughing is to say dadada daddy.

I will post some pics soon.

Ugh! Sick

2009-06-06T12:01:00.003-04:00

Well, Memphis is sick. It all started on Thursday with a little congestion and then late in the day he started with a little cough. Nothing major. Then he threw a tantrum during dinner and proceeded to trow up some of his milk and food. Well, is very resourceful and can throw up food out his nose, which I am sure hurts like heck.

Friday he still had the little cough but nothing to worry about, until he woke up at 10:30 screaming and with 100.9 fever. We got the fever down with Tylenol, but it took us until almost 12:30 to get his settled down and back to sleep. For a typical child a fever of 100.9 would be cause for concern but nothing too major, except for Memphis, fevers lower his seizure threshold, which means he is at greater risk of having a seizure. The worst part is not knowing why he had a fever. Was it an ear ache, a sinus infection, the flu? Don't know.

So now we are on fever watch. If it comes back and itis over 101 degrees we will be taking him to the ER so he can get IV antibiotics, but if it is below 101 then we wil go to the urgent care clinic.

Catching Up

2009-06-02T14:21:00.002-04:00

I have not posted in a while and I apologize, but sometimes life gets in the way.
Memphis is doing well. I actually got to take him to therapy last week and see Miss Vivica. He did so good on his four point (hands and knees). He held himself up for quite a while with only someones hands on his hips to catching him if he fell. He has been doing really well with therapy and with stregthening his trunk and head control. So if the four point keeps being so strong, hopefully next will be crawling. He has started to try to scoot on his back and almost rolled from his back to his front a couple of times a week or so ago. He has made DRASTIC improvements with tummy time and holding his head up. He is actually happy to be on his tummy for extended periods of time and doesn't cry.

He then did this again on Saturday when we went to visit Memphis's cousin Ezra for her 1st birthday. Although we got there late (damn work) and missed all of the relative and even Ezra's parents (who split for a night out, gotta do it when you have grandparents available to babysit), we did get to spend some quality time with Aunt Gail and Uncle Wayne and Memphis go to pay with Ezra. Actually I think Ezra was more into playing with Memphis and his toys than he was with her. She really liked his ball. But he got to use her walker, a Jeep walker no less, and it was pretty tall and fit him good, so I think we may get one, since Memphis is getting to tall for a lot of his other sit in toys. Ezra was ok to share for a little while and then she wanted her Jeep back. It probably didn't help he was having some pretty good athetoid movement and accidentally hit her in the head with his arm. She only whimpered a little until we distracted her with the ball. Ezra is so very cute and looks a lot like her momma. She is so petite and small. I think Memphis's hands and feet were bigger than hers when he was born and she just turned one. I will see if I can get a picture of Ezra nd Memphis together.

Physical Medicine

2009-05-23T11:21:00.005-04:00

Well, Memphis and I went to a physical medicine and rehab appointment. This is the first time we have seen a physiatrist and I had a lot of questions, the first of which is what does a physiatrist do? Well in basic terms this is how it was explained to me: Rehabilitation physicians or physiatrist are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move. By taking the whole body into account, they are able to accurately pinpoint problems and enhance performance without surgery.

My main concern was making sure that we are doing all the right things with Memphis's therapy, especially his PT, to help him walk and function fully. The physiatrist, Dr. Pelshaw, (who I really liked by the way) said we need to concentrate on Memphis getting better control of his head movement and trunk (torso) stronger before we worry about him walking. So basically keep doing what we are doing and Memphis may outgrow the $6500 walker we just got before he really learns how to use it fully. Yeah, great! He also said the our goal for Memphis in the next six months should not be to get him walking. Boo! But he did not say Memphis would not walk, just probably not in the next six months. For lack of a better analogy, you have to crawl before you can walk type of thing.

I also asked about AFO's for Memphis's legs and he said Memphis does not need them and his legs are pretty loose right now and this is a time when we should be expecting them to tighten up so loosening is good. Dr. Pelshaw also said Memphis does not need splints for his hands or wrists, to help him keep his fingers from contracting, since he can relax his hands when he wants too. He also said that this is also the age/stage when athetoid movement (uncontrolled movement, like mild flailing) may increase but Memphis's in decreasing so that is encouraging as well. He did prescribe a Benik vest, which we are currently borrowing from the ISD. This helps give proprioceptive input and to provide support. Basically it is a neoprene vest that feels like a full body hug and helps with the athetoid movement.

The scariest thing about the appointment was that Memphis had one of his "startles" while the Dr. was in the room, and that is the first time he has done it with a Dr. watching. He has been having more "startles" in the past few months and it concerns me. So I asked the Dr. if he thought it could be a seizure and he said it could be and to tell Dr. Chugani, the neuro, about it and tell him that Dr. Pelshaw saw it. Dr. Pelshaw thought Memphis may have had some postictal (after seizure blank out) state after the startle, which he usually does not, but I am not sure it was postictal or just the fact that Memphis was having a pretty limp rag kind of day and had his nap schedule all jacked up after spending almost the whole morning playing outside. I had asked the neuro about these "startles" and they did not seem to be concerned but they have not seen one and said I should try to catch it on video, but they are only a second long and come out of nowhere. So I guess now that another Dr. saw it and thought it may be of concern I will just set up the video camera on my day off and video Memphis all day to see if I can catch one. I really do not even want to think about these being another form of seizure, especially infantile spasims. The "startles" do not have the typical characteristics of IS, do not come in clusters, do not cause jacknifing, etc. But Memphis's seizures scare the crap out of me now and I know they are controlable. Infantile spasisms are a whole different animal and can cause brain damage and reversion to an infantile state and the meds are really harsh. Hopefully no IS.

Therpay Pics

2009-05-15T14:05:00.008-04:00

I talk all the time about what Memphis does at therapy and I am not sure anyone ever knows what I am talking about. So I finally remembered to take the camera and get some photos. This photo is of Memphis rolling down hill on a mat. This helps him to learn how to use his arms and legs to push himself so he can roll. He likes this exercise and if he gets enough momentum built up he does not have to do a lot of work coming down. Of course the PT makes him "roll" up hill too and that is a lot more work.
Finally, I have a photo of Memphis in his new walker. I have been told that Memphis has the Cadillac of walkers, even though his face may not look like it here. He has figured out the art of whining and he was getting tired, so he was in full force whine mode. But you notice he is standing straight up with only minimal support. Yeah!

Swinging with the PTA. This helps with movement and body control as he has to react to the movement of the swing to keep his balance. The swing we want to help the school get is a lot like this but bigger and better.

Here is Memphis in his theravest. The vest acts like a upper bug hug and helps with his athetoid or uncontrolled movement. He was sitting up so nice and tall and leaning on his arms when he would start to tip. Next step is sitting by himself. I am also looking into getting a chair like this for home.

To all Mothers, escpecially Special Mothers

2009-05-10T06:50:00.003-04:00

The Special Mother I borrowed this from Life of Logan and Kerri.
Something worth reading:

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. 'Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity.' Finally he passes a name to an angel and smiles, 'Give her a handicapped child.'

The angel is curious, 'Why this one, God? She's so happy.''
Exactly,' says God. 'Could I give a handicapped child a mother who does not know laughter? That would be cruel.''

But has she patience?' asks the angel.
'I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy.''

But, Lord, I don't think that she even believes in you.'
God smiles, 'No matter. I can fix that. This one is perfect. She has just enough selfishness.
'The angel gasps, 'Selfishness? Is that a virtue?'

God nods, 'If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.''

I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.''

And what about her patron saint?' asks the angel, pen poised in midair.
God smiles, 'A mirror will suffice.'

Author Erma Bombeck

New walker, the dentist chair and a haircut!

2009-05-08T09:40:00.007-04:00

I have been remiss and have not posted in a while and there is much to tell. Memphis has gotten his new walker, it is all shiny and a sleek blue. We have been playing with it and when I say playing I mean that it has so many adjustments that we had to wait a week to take it back to the therapist to have them adjust it correctly. I did watch the DVD it came with but it was still pretty complicated. We have been putting Memphis in it to get him used to being in it and he seems to do pretty well. Until we got it adjusted he was pushing himself backwards and he does not throw a crying screaming fit when we put him in it. It is kind of funny though, sometimes I think my child has grown extra arms and legs. If you have ever tried to a put a cat in a carrier you know what I mean, they seem to have eight legs and can do a really good job making it difficult to get them in the carrier. That is how Memphis can be when he does not want to do something, like get in him walker, excersaucer or high chair. I will try to get pics of him in him walker posted really soon.

Memphis and I also visited the orthodontist/dentist on Monday. Now let me tell you it has been a battle to even get him to the dentist. His craniofacial Dr wants him to see a dentist that she works with and she recommends him highly. We had an appointment for good Friday, but the Dr office cancelled it, so we rescheduled for this past Monday. So off to Children's we went and we had to be there at 8am. Needless to say, I HATE traffic and am so happy that my commute goes east not south. Anyway, we did not see the orthodontist that we were supposed to see, because he got called into surgery. But we did see a really nice orthodontist and Memphis did really well. He got his teeth examined and cleaned and he didn't bite the dentist. I had visions of biting, screaming and tears, but we had only a little whining. I was so very proud of him. They said his mouth is kind of small and his jaw is a little out of alignment, but that they really cannot do anything until his permanent teeth come in. So another waiting game.

After the dentist we stopped in Lapeer and had lunch with Brad. We commandeered a few suckers from the restaurant and I took Memphis to get his haircut. He did so good and as long as he had the sucker in his mouth he was pretty happy. Nothing like trying to clean up a kids with sticky sucker and hair stuck to his face. But he once again has a big boy haircut and it is short for summer.

Wordless Wednesday

2009-04-29T08:48:00.003-04:00

Look at me now! This is the walker he has used at physical therapy. His walker was delivered yesterday and I will post pics and maybe video soon. he did really good in it last night. My baby has wheels!

My two favorite guys! Someone at work said Memphis looks just like me, then I showed them this pic and they said nope, just like dad.

Stupid People

2009-04-27T15:18:00.004-04:00

Well, it never ceases to amaze me the things that some people say and they don't even realize how incrediblibly stupid what they are saying is.

Example: Today at work a guy who I don't know very well but I think is a know it all pushed his way into a conversation I was having with another person. This conversation happen to be about the words that Memphis can say, which are Momma, Hi and No. Then the guy told me his son could sign really well when he was two. I told him Memphis signs a little because we have worked with him on it due to his CP. He asked me how bad his CP is and I said the Dr. really cannot predict something like that at his age. At which time he says.... You know they have treatment for that now.

My first reaction is to just stare blankly at him. Like I don't know they have treatment for CP. Believe me as the parent of a child with CP I have research treatments, experimental and otherwise. We take him to speech, physical and occupation therapy twice a week, every week. We do therapy at home. We have modified our lives to include Memphis's "treatment" in everything we do. So what I told him was "Yes I know there is treatment, but there is no cure" and I walked away. I will save my energy for Memphis and not waste it on some stupid person who thinks of a second that a parent of any special needs child doesn't know just about every treatment and exercise that will help their child.

Party Crown Giveaway

2009-04-22T12:32:00.005-04:00

If you are looking for something cool to do for someone else, like your mom, or for your little someone for fun or a birthday here is an idea. (I know a little girl named Ezra who will be turning 1 very soon who would look gorgeous in a pink frilly crown).

Daniel's mom makes these cute custom crowns, which can be made to order. All the proceeds are used to help pay for Daniel's ABR therapy.

Check out Betterthannormal.org for more info on how to order a crown ort check out Daniel's blog for more info on the give-away.

http://danieljohnmaxwellspranger.blogspot.com/2009/04/win-it-80.html

If we win, I want to order Memphis a reversible crown with farm animals or race horses on one side and his name on the other. That way he can wear his crown over his helmet when he is riding the horses with me. Or maybe I will order a crown with his name on it and removeable numbers, one for each birthday. The possibilities are endless. But I do think I will be ordering crowns for all the babies first birthdays from now on.

“All human wisdom is summed up in two words - wait and hope” Alexandre Dumas Père

2009-04-22T12:13:00.002-04:00

That pretty much sums up what we have been doing with Memphis's walker. Wait and hope. He is fast outgrowing all of the "toys" we have for him that allows him to be upright and active, like his excersaucer, bumbo chair and has long outgrown the baby walker we had for him. So hopefully soon we will hear about when his walker will be coming.

On another note, he is getting much stronger, mush more alert about his surrounding and has become quite a chatter bug. His therpaist said he is to spend time each day in his Standing Dani, so now we are working with his nanny to have her use the Dani as well.

We have been enjoying the nice weather (til it rained for the last three days). We have been using his swing set, playing in the grass a little and even letting him put his feet in the mud.

Happy Keester, Oops Easter!

2009-04-12T08:00:00.001-04:00

ALL I NEED TO KNOW ABOUT LIFE
I LEARNED FROM THE EASTER BUNNY
Don't put all of your eggs in one basket
Everyone needs a friend who is all ears
There's no such thing as too much candy
All work and no play can make you a basket case
A cute little tail attracts a lot of attention
Everyone is entitled to a bad hare day
Let happy thoughts multiply like rabbits
Keep your paws off other people's jellybeans
Good things come in small sugarcoated packages
The grass is always greener in someone else's basket
An Easter bonnet can tame even the wildest hare
To show your true colors you have to come out of your shell

The walker is on its way!

2009-04-11T14:34:00.008-04:00

Monday we got a letter saying Memphis's walker had finally been approved, after only a five month wait! He had to be remeasured since he had grown quite a bit since the first part of November and I did not want to have them order a walker that was too small after waiting so long. He was remeasured Tuesday afternoon and I talked with Wright and Fillipis on Thursday. They said they are hoping to hear someone about the order on Monday and maybe we will have it by the end of next week. Yeah! I can't wait, he has outgrown almost all of his other activity toys, like his excersaucer (he is getting way tall for it) and he really wants to move around. You can see it on his little face that he wants to get down and go, for lack of a better term. And I think getting him in the walker will help. He has done well with it at PT and with all the hardwood floors at our house it should be pretty easy for him to push it along with his feet. I am really excited to see him in it and moving around our house!

Sippy, Sippy, Sippy

2009-04-04T09:09:00.005-04:00

Memphis has begun using a sippy cup. Yeah! You would think I would not be so excited over the use of a silly sippy cup, but for Memphis and Mom & Dad, this is the first step to us not having to hold his bottle or cup. How did this come about you ask?

Well, I have bought every kind of sippy I could find, with soft spouts, hard spouts, transitional spout from a nipple to a sippy to a straw, sippies with handles, little sippies, big sippies, expensive sippies and cheap sippies. But alas, Memphis emphatically said NO to the sippy. So occasionally I would try the sippy or the transitional sippy to see if he was more receptive, which was met with a lot of sticking out of his tongue and shaking his head. Until last week, when I tried the transitional sippy and took it to PT at the ISD with us. He tried it and even seemed to like it, but it was slow going. The OT said, just give him the choice of the sippy or the straw and take away the bottle. So when we got home I tried the sippy spout and Viola, he liked it and has been using it ever since and he seems to be doing better with the sippy than he was with the bottle. He can suck down 8 to 10 oz in no time with the sippy, which is usually followed by what I like to call a man burp. Funny!

It is also funny when you child, who is still drinking from the bottle, bites the nipple, pulls back with his head and them lets the nipple go. Milk or in our case Perdiasure (toddler crack) goes everywhere. Thankfully, he did not ever bite the nipple off the bottle and now we are on the more sturdy sippy cups.

Also, sorry for not posting for a while. It seems that the US government does not want its employees to be reading or posting to blogs while at work, so those few minutes I used to steal to update everyone on Memphis's progress, have been fewer and further between. But alas, I have found a workstation at work that I can blog on! Don't they realize this is for my mental health and will make me a better employee? Somehow I don't think that will fly with the higher ups and the IT guy.

Waiting on the Walker, STILL!

2009-03-29T10:04:00.002-04:00

Well, we finally got word that Memphis should be approved for his walker soon. Last we heard they said within two weeks and that was two weeks ago, but we have had to call the equipment company and ask them to come out and measure him again. It has been 5 months since we put in the request and you know, shocker, kids grow, a lot, in 5 months. In Memphis's case he has grown from 28 inches to 33 inches, so about an inch a month.

We have been using an older Pacer Walker at therapy at the ISD and depending on Memphis's mood, he does really well in it. Last time he pushed himself backward more than forward but from what I have heard many kids do that in their baby walkers before they go forward. Also, it is kind of funny, but the madder he gets about having his hands strapped down, the more his feet move and the further he "walks". I have pictures but they are not available for download right now and I will add them soon. I hope to be able to post pictures of Memphis with his own, shiny, new Pacer.

More CP Facts

2009-03-26T15:25:00.001-04:00

In the industrialised world, the incidence of cerebral palsy is about 2 per 1000 live births. The incidence is higher in males than in females; the Surveillance of Cerebral Palsy in Europe (SCPE) reports a M:F ratio of 1.33:1. Variances in reported rates of incidence across different geographical areas in industrialised countries are thought to be caused primarily by discrepancies in the criteria used for inclusion and exclusion. When such discrepancies are taken into account in comparing two or more registers of patients with cerebral palsy (for example, the extent to which children with mild cerebral palsy are included), the incidence rates converge toward the average rate of 2:1000.
In the United States, approximately 10,000 infants and babies are diagnosed with CP each year, and 1200–1500 are diagnosed at preschool age.
Overall, advances in care of pregnant mothers and their babies has not resulted in a noticeable decrease in CP. This is generally attributed to medical advances in areas related to the care of premature babies (which results in a greater survival rate). Only the introduction of quality medical care to locations with less-than-adequate medical care has shown any decreases. The incidence of CP increases with premature or very low-weight babies regardless of the quality of care.

Prevalence of cerebral palsy is best calculated around the school entry age of about six years, the prevalence in the U.S. is estimated to be 2.4 out of 1000 children
The SCPE reported the following incidence of comorbidities in children with CP (the data are from 1980–1990 and included over 4,500 children over age 4 whose CP was acquired during the prenatal or neonatal period):
Mental retardation (IQ < 50): 31%
Active seizures: 21%
Mental retardation (IQ < 50) and not walking: 20%
Blindness: 11%
The SCPE noted that the incidence of comorbidities is difficult to measure accurately, particularly across centers. For example, the actual rate of mental retardation may be difficult to determine, as the physical and communicational limitations of people with CP would likely lower their scores on an IQ test if they were not given a correctly modified version.

Apgar scores have sometimes been used as one factor to predict whether or not an individual will develop CP.

Memphis's apgar score was normal and his CP is the result of having a sponstanious genetic deletion (non-hereditary) that affected his brain formation in utero.

Athetoid Movement

2009-03-25T14:27:00.001-04:00

Anyone who knows Memphis has seen him in movement. He is constantly moving and at no fault of his own. This is one of the symptoms of his type of CP. He has what is called athetoid movement, were it is very hard for him to control some of his movements and he has to concentrate really hard to make himself do something, like hold an object or touch his face. He is getting better with his athetoid movement and we will continue with therapy and with special equipment to help him control his athetoid movement.

Athetoid or dyskinetic is mixed muscle tone—sometimes hypertonia and sometimes hypotonia (Hypotonia will usually occur before 1 year old; the muscle tone will be increased with age and progress to Hypertonia). People with athetoid CP have trouble holding themselves in an upright, steady position for sitting or walking, and often show involuntary motions. For some people with athetoid CP, it takes a lot of work and concentration to get their hand to a certain spot (like scratching their nose or reaching for a cup). Because of their mixed tone and trouble keeping a position, they may not be able to hold onto objects (such as a toothbrush or pencil). About one quarter of all people with CP have athetoid CP. The damage occurs to the extrapyramidal motor system and/or pyramidal tract and to the basal ganglia. It occurs in 40% of all cases.

Quick CP Fact

2009-03-24T13:14:00.004-04:00

Another quick fact:

Spastic cerebral palsy is by far the most common type, occurring in 70% to 80% of all cases. Moreover, spastic CP accompanies one of the other types in 30% of all cases. People with this type are hypertonic and have a neuromuscular condition stemming from damage to the corticospinal tract or the motor cortex that affects the nervous system's ability to receive gamma amino butyric acid in the area(s) affected by the disability. Spastic CP is further classified by topography dependent on the region of the body affected; these include:

Spastic hemiplegia (one side being affected). Generally, injury to muscle-nerves controlled by the brain's left side will cause a right body deficit, and vice versa. Typically, people that have spastic hemiplegia are the most ambulatory, although they generally have dynamic equinus on the affected side and are primarily prescribed ankle-foot orthoses to prevent said equinus.

Spastic diplegia (the lower extremities are affected with little to no upper-body spasticity). The most common form of the spastic forms. Most people with spastic diplegia are fully ambulatory and have a scissors gait. Flexed knees and hips to varying degrees are common. Hip problems, dislocations, and in three-quarters of spastic diplegics, also strabismus (crossed eyes), can be present as well. In addition, these individuals are often nearsighted. The intelligence of a person with spastic diplegia is unaffected by the condition.

Spastic quadriplegia (all four limbs affected equally). People with spastic quadriplegia are the least likely to be able to walk, or if they can, to want to walk, because they are too tight and it is too much effort to do so. Some children with quadriplegia also have hemiparetic tremors, an uncontrollable shaking that affects the limbs on one side of the body and impairs normal movement.
Occasionally, terms such as monoplegia, paraplegia, triplegia, and pentaplegia may also be used to refer to specific manifestations of the spasticity.

Memphis has spastic diaplegia, but his is very slight. He has some tightening in his legs (hamstrings and ankles) but with excerise and stretching it is controlled.

Cerebral Palsy 101: Quick facts

2009-03-23T13:05:00.004-04:00

March is Cerebral Palsy Awareness Month, so I have decided that I will be trying to post some facts about CP on here this week. I know, it is March 23rd, so I am a little late, but better late than never.

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious conditions that cause physical disability in human development.

Cerebral refers to the cerebrum, which is the affected area of the brain (although the disorder most likely involves connections between the cortex and other parts of the brain such as the cerebellum), and palsy refers to disorder of movement. CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy (about 75 percent), during childbirth (about 5 percent) or after birth (about 15 percent) up to about age three. Further research is needed on adults with CP as the current literature is highly focused on the pediatric patient.
It is a non-progressive disorder, meaning the brain damage does not worsen, but secondary orthopedic difficulties are common. For example, onset of arthritis and osteoporosis can occur much sooner in adults with cerebral palsy. In addition, motor disorder(s) may be accompanied by "disturbances of sensation, cognition, communication, perception, and/or behavior, and/or by a seizure disorder"
There is no known cure for CP. Medical intervention is limited to the treatment and prevention of complications arising from CP's effects. A 2003 study put the economic cost for CP sufferers in the US at $921,000 per case, including lost income.

I don't even want to think of the ecomonic costs, but I do think that the amount quoted above is grossly under estimated. I think we have probably spent over a quarter of that on Memphis is than last 1.5 years (thank god for insurance).
It is sad to say that there is not enough research beind done on CP and its causes, because it is an "umbrella" term and that it can be caused by some many things.

Cereberal Palsy Awareness Day is TODAY!

2009-03-20T13:14:00.001-04:00

Today is Cerebral Palsy Awareness Day.
You are supposed to wear a green shirt in support of CP awareness day, but always have been a little different in our house, so Memphis is wearing his green via green whipped cream.

Before Memphis was diagnosed with cerebral palsy I thought that the only cause of CP was lack of oxygen to the brain during or right after birth. Boy was I under informed. That is only one cause of CP and only 20% of people with CP have it due to birth trauma. When Dr. C said Memphis has CP, I must have had a horrified look on my face because he immediately started to explain about CP and that it is much more common than one thinks. He described it to me in the simplest terms I think possible (disclaimer: I do not necessarily agree with Dr C's description but it got the point across at the time). He told me Cerebral means brain and palsy mean weak or weak movement. The dictionary definition of CP is as follows:

Spelled Palsy, Pronunciation [pawl-zee]
–noun
1. any of a variety of atonal muscular conditions characterized by tremors of the body parts, as the hands, arms, or legs, or of the entire body.

Spelled Cerebral Pronunciation [suh-ree-bruhl, ser-uh-]
–adjective
1. Anatomy, Zoology. of or pertaining to the cerebrum or the brain.

Add the two words together and this is the definition:
Cerebral Palsy
–noun Pathology.
a form of paralysis believed to be caused by a prenatal brain defect or by brain injury during birth, most marked in certain motor areas and characterized by difficulty in control of the voluntary muscles.

I do not, on any day, believe that Memphis has a weak brain. I do believe that Memphis has a body that does not always do what his brain tells it to do and that since his brain is not shaped the way yours or mine is, his brain has to work harder to make the connections needed to do certain things, but he has always been intelligent and here are some examples:

He knows who momma, daddy, Memphis, and Grandma are and can find them with his eyes and will ask for them in his own way.
When we started to feed him solid foods I would say open then touch his lower lip and he learned in a matter of days to open his mouth when someone tells him to open.

He can purse his little lips and will not open his mouth when he does not want something put in his mouth, usually medicine.
He laughs when someone else laughs and has the best manipulative smiles.
He will whine when he does not like something or does not want to do something, say therapy or fall asleep, and as soon as you stop doing whatever he doesn't like the whining stops.

He knows when something is going to happen, he hears running bath water and knows it is bath time, he will whine before stretching therapy even starts or the therapist even touches his neck, because he knows it is going to.

What I can tell you is that even though we don't know what Memphis's diffabilities will end up being, he is a beautiful, happy little boy, who is daily stealing the heart of everyone he comes in contact with and that he has a family who will help him be whatever or whoever he wants to be, different or not.

A few facts about CP:

The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Ever wonder what a child with CP looks like? They look any other child, with wide eyes, a big smile and a warm heart.

These are photos a Daniel (left) better than normal, Logan (right) life of logan and Memphis. All three of these adorable little boys have CP, all caused by different medical reasons and all live in Michigan. CP is not one face, it is many, oh so many.

Wordless Wednesday

2009-03-18T11:49:00.003-04:00

First and Fourth Generation

They look kind of similar, both with only 6 teeth and a goofy smile.

Love you, great grandpa.

It Takes a Village

2009-03-13T15:22:00.006-04:00

Whoever wrote it takes a village to raise a child must have had a special needs child in mind.

With me changing my work shift and Memphis getting a new nanny I just realized what a whorl wind of activity the last year has been and how much of a merry go round we have been on and it never seems to stop. What made me realize this you ask?

Well, Memphis started with his new nanny last week and she has offered to help take in to some of his appointments. Of course I have retained the specialist appointments and I would like to continue to take him to PT/OT at Full Circle, but she is taking over PT/OT and Speech at the ISD each week, when I am working. She is also going to be with him when the school teacher comes to the house on Fridays. Most people with special needs kids may ask, how can you let someone else take your child to therapy? Well, I have to work and it is better for our whole family unit that I work the day shift. I worked afternoons (4pm to midnight) for 16 months and it was a tough time, without near enough sleep most of the time. Also, I feel that if she is going to be with Memphis for almost 10 hours a day, if she knows the excerises and what the therapists want Memphis to be doing and she is willing to help him do those things than that is even better for Memphis.

If you wonder what a weekly schedule for Memphis is like see below:
Tuesday: PT/OT and speech at the ISD (2.5 hours)
Thursday: PT/OT at Full Circle (1.5 hours)
Friday: School (1 hour)
Throw in an average of 4 Dr appointment per month and you have one busy little boy (and busy parents/chauffers).

So there is no way that Brad and I could both work (which we have to) and do all of teh things that Memphis needs to do without something else suffering. So we rely on Grandparents and his nanny to fill in when we can't.

Meds, Meds and More Meds

2009-03-11T11:25:00.002-04:00

We tried weaning Memphis off the Keppra (for seizures) since the Dr said it was OK and he had not had a seizure that wasn't fever induced in over 4 months. Well, it went good for about a week and them, wham, another seizure in the middle of the night.

No fever, no sickness, just a small, less intense seizure. It only last less than a minute, which is good, since the old ones lasted much longer and where much more intense, with lots of rhythmic movement and angry yelling. This one was much "better" if a seizure can be better.

Memphis only has seizures when he is sleeping and I have never seen a completed seizure from start to end, except his first one, which was less than 30 seconds and over 6 months ago. Last Sunday, I did see one from start to stop. We were in the car, driving to Grandma's house and Memphis was sleeping (this is the day after he had the seizure in the middle of the night). We had just parked and out of the corner of my eye I saw Memphis's head come up so I turned to look over my shoulder and his eyes were wide open and he had the horrible seizure face. (Memphis makes the most horrible, angry face when he has a seizure and for those of you who know his, you know that is not normal.) Then his eyes started darting around and I knew he was having a seizure again. We got him out of the car and he only yelled 2-3 times (he also yells angrily during a seizure) and then it was pretty much over. It only lasted maybe 1 minute. Again, much less intense and much shorter, but crappy all the same.

So we upped his meds back to the normal dose and called the Dr on Monday. I asked about his meds and they said keep him on the original dose of Keppra and to keep him on the new dose of Topamax. I am not happy about that since he is now on more meds than ever and I don't think he needs then. He needs to Keppra and he needs to Topamax but I don't think he needs to Topamax at that level and I am going to call back and ask if we can back that down to the dose he was getting before. I hate having to give my kids meds all the time, especially meds that can change his moods and can be hard on his little organs. Whenever we mess with his meds by increasing them, he is sleepy for a couple days and his therapy suffers, since his body doesn't cooperate as well as usual. He also gets frustrated more easily and when he gets upset he stays upset longer. So that is why I will be calling the Dr again.

My neice asked me what I wished for when I blew out my borthday candles this past week and I didn't have the heart to tell her I wished for Memphis to not have seizures.

Cool Website for Parents of Special Needs Kids and People with Medical Needs

2009-03-05T11:41:00.002-05:00

Check out this website. It is a website to put people in touch who may have a need for medical or special equipment and those who have it and wish to donate or sell the equipment. It is pretty cool and I plan to use it when Memphis grows out of some of his equipment or no longer needs it.
http://www.atxchange.org/v3/home.php

My brother heard about this site on NPR (national public radio) and told me about it. Also, for parents not from MI, google assistive technology exchange and there is a national website with state specific exchanges listed.

Support World Epilepsy Day: Wear Purple

2009-03-05T11:35:00.004-05:00

On March 26th, people all around the world are encouraged to wear purple in support of Epilepsy Awareness Day. Get involved and show your support!!Here are a few important facts about Epilepsy:

Approximately one in ten people will experience at least one seizure during a lifetime. A single seizure, however, is not epilepsy. Epilepsy is a condition that is defined by multiple seizures.

Seizures cause a change in function or behavior. A seizure may take many different forms including a blank stare, muscle spasms, uncontrolled movements, altered awareness, odd sensations, or a convulsion.

An estimated 50 million people worldwide have epilepsy. That means approximately one percent of the general population has epilepsy.

First Aid for Seizures

Generalized Tonic Clonic Seizure
In convulsive (tonic-clonic or grand mal) seizures, the individual loses consciousness and falls. The body is initially rigid (tonic phase). In the clonic phase, the arms and legs jerk or twitch rhythmically. Consciousness is regained slowly.
Stay calm.

Time the seizure – Usually there is no need for a trip to the hospital, unless the seizure lasts longer than five minutes (not including the postictal phase), the person has more than one seizure in a row, or if a person is injured, pregnant, or has diabetes.
Remove objects that may cause harm - clear the area of sharp or dangerous objects.
Do not hold the person down or restrain their movement.
Do not put anything in the person’s mouth: it is not possible for someone to swallow their tongue.
Turn the person on his or her side as the seizure ends to allow saliva or other fluids to drain away and keep airway clear.
Do not offer food or drink until the person is fully alert.
Stay with the person until they are fully alert and thinking clearly. Reassure the person when consciousness returns.

Complex Partial Seizure (Memphis has multi-focal complex partial seizures)
For someone with disturbance of consciousness and undirected behavior, such as mumbling or random movements including head turning or pulling at clothes:
Speak calmly.
Do not restrain, but gently guide the person away from danger.
Stay with the person until he or she is fully alert.
Please note, the seizure and post seizure confusion may last as long as 20 minutes.

Absence Seizure (Petit Mal)
For momentary lapses of attention (absence or petit mal seizures) no first aid is needed; the seizures only last a few seconds. The individual may appear to be daydreaming. Because these seizures are so mild looking, they may go undiagnosed. If you suspect someone of having absence seizures, bring it to the attention of an appropriate person.

There are many types of seizures from the ones listed above to absent seizures, tiny twitches to infantile spasms. Regardless of the name of the seizure, they are all scary to see and even more so to experience.To find out more about Purple Day and what it means, visit the site by clicking the link. Here is another cool kid, Cassidy Megan who is making a difference in this world.

This post was borrowed from Daniel's Blog.

Therapy Swing for School

2009-03-02T11:47:00.003-05:00

Last week at PT and Full Circle we ran into a member of the school board, who has MS. He is also a member of the local wheelchair sporting group, as well as the NB Lions club. I approached him and started to tell him about wanting to raise the money for a vestibular therapy swing for the school. He was very interested, said that maybe this was something that could be purchased with the economic stimulus money and if not then the wheelchair group might be able to help out, as well as the NB Lions. So I am on my way. This week I am going to work on putting together information packets to give to these local groups, in hopes they will be willing to either make donations or to help set-up a fundraiser. He also gave me a new idea. He said that medical equipment retailers often have gently used equipment in storage that they cannot sell as new, but may donate. So I will be contacting the local medical equipment retailers to see if they have a therapy swing they may be willing to donate or if they can offer a discount on a swing. Now my goal is to get the swing by the end of the school year.

Equipment Update

2009-03-02T11:30:00.005-05:00

Memphis's bath seat has been approved, finally. It has only taken 4 months, but we should have it within the next two weeks. It was quite a process and Children's Special Health Care wanted more information at least twice. The good things is that CSHC will pay for bath seats and hygiene equipment, because most private insurance will not.

We are still waiting to hear about his walker. We submitted the original request the first part of November and heard back in early January that CSHC needed more info. Since my private insurance changed at that time we had to deal with that as well. The man from Wright and Fillipis said it takes 8 weeks to get the equipment if all goes well. The request was resubmitted with the additional info on the 23rd of January and it takes about five weeks to get the denial or approval, so we should be hearing soon.

Last, I bought Memphis his own vibrating toothbrush. He loves the Z-vibe at therapy and I still intend to get one for him, when I take him to the dentist I hope to get a script for one. (Yes, Memphis will be visiting the dentist). But I found a vibrating toothbrush that is not to string or loud and he loves it. He will curl his little fingers around it and try to put it in his mouth and rub it on his face. We bought the battery powered Colgate 360*

Life is full of Changes

2009-02-27T08:51:00.018-05:00

Life is full of Changes...
That statement is so true and even more so for the my family. It seems like whenever something happens and I think things will settle down and be "normal", then something else happens and there is a huge chain reaction and I am thrown off balance again.

This past week has been full of changes, twists and turns. So good, some not so good.

First, I started working on the day shift this week. So needless to say the transition is stressful for me, Brad and Memphis. It has been 16 months since I have worked the day shift permanently and Memphis has been in daycare for over 1.5 to 2 hours per day. Now he is in daycare from 7am to around 4pm (9hrs). Being in daycare all day also threw the Dr. and PT/OT schedule up into the air and made it come back down all jumbled up. Grandma has graciously agreed to take him to PT/OT at the ISD on Tuesdays, when I cannot. Dad will be taking him to PT/OT on Thursdays after work. And I will continue to take him to his Dr appointments as needed. The school teacher will be seeing him on Fridays (at home or at day care) as well. I thought I had it all worked out and my stress and anxiety level was reasonable low. Then...

When I told the daycare lady (who he has been with since he was 6 weeks old) on Tuesday morning that Grandma P. will be coming to get him on Tuesday for 2 hours to take him to PT/OT and that the school teacher would be coming on Fridays, the daycare lady got a confused look on her face. Not good. She then told me she did not think she would be having kids on Fridays. The schedule for all the other kids parents changed and Memphis would be the only one there and it just was not worth it. Great thing to know that your daycare person doesn't think your child is "worth it". WTF. It is Tuesday, when did she plan to tell me this, Friday morning when I show up at 7am to drop him off. Needless to say I was upset. So Brad and I started calling pretty much everyone we know to see if they could at the minimum watch him this Friday. We did not find someone until 9:30am on Thursday. I did not sleep at all on Wednesday night and was fully prepared to call in sick. So with that taken care of my anxiety level again went down. Then I am on my way home from work and Brad calls to tell me that I need to call daycare, because Memphis did not take a nap (he was up for over 9 hours) again and the daycare lady did not think she could handle him not taking naps (did not nap Monday or Tuesday) and he fussed and woke up some of the other kids. Remind you, this is the first week he has been at daycare full time and he does have a tendency to get over stimulated and not nap when there are lots of things going on, like 5 other kids there. So, I called and we talked and I gave her some tips to get him to go to sleep (I am telling the the woman, who raised 4 kids, 1 with downs and has been doing daycare for 27 years how to get my kid to go to sleep?!?) and told he to see how it goes next week and if he does not nap we will work something out (i.e. find a new daycare person).

By now I think I should just keep my anxiety level ratcheted up all the time and I would fell better, not like I am having highs and lows.

Well, maybe something really good can come from all of this. The person we found to watch Memphis today, happens to be the woman who watched Brad and his brother and sister when they were in early elementary school. She said it was easier for her if she comes to our house and that she has been doing private daycare (i.e. nanny) for the last 8 years and has done child care for the past 26 years. She came over to meet Memphis, check out were we keep his stuff, etc. She told me this morning that she could take him to Dr. appt. (non-specialists), playgroup, PT/OT if needed and will give him his meds and do whatever we need her to. OMG, where has she been all Memphis's life. I called Brad after I left the house and told him that when he gets home today to hire her full time if he can. So maybe something good will come from all of this. I will let you know if we become a family with a "nanny", next we are interviewing chauffeurs and grounds keepers. ;)

We went to see Dr. C on Wednesday. It was a good visit. I really like Dr. C and his head nurse Ruth. Both are very nice, speak to your level and make sure you can understand what they are saying. I have never had problems asking a Dr. for clarification or to explain something, but I am really at ease with Dr. C and Ruth doing so. The change that came with that visit is Memphis can now start to wean off the Keppra seizure medicine). He will be totally off the Keppra in 6 weeks. The Dr. does not think that he will see any increase in tone, which is good. We are hoping that getting off the Keppra will increase his focus.

Trying to allow comments

2009-02-19T17:22:00.002-05:00

Usually I don't like the comments I get from strangers about Memphis but I am trying to make it so that the readers of Memphis's blog can comment.

I usually think I am pretty tech savvy but this process has me stumped a little but I think I have figured it out (with a little help from Melanie).

So this is a test, to see if now comments can be left on the blog.

Veggie Stixs and other snacks

2009-02-18T18:41:00.007-05:00

Memphis's OT from the ISD has been working on him getting better about chewing and eating new foods. So this week we tried veggie stix, which are basically vegetable based fried sticks, like potatoes chips but in strips. But don't believe that just because they are made from vegetables instead of just potatoes that the veggie stix are healthier, becuase I don't think they are. But that really does not matter when you are feeding your kid over 750 every day in his drinks to get him to gain weight. He seems to like them and even bites into them. But today when we where practicing he bit me. Well, I stuck my finger in his mouth to help moved the food to the side so he could chew it but he bit me. I guess that is the normal thing for a 18 month old to do.

We have also tried the freeze dried fruit pieces to our snack list and he seems to like those too. So now we have yogurt bites (freeze dried yogurt that look like chocolate chips), puffs (much like cereal or cheerios), veggie sticks and fruit twists (like fruit roll up for a toddler) as part of our snack time routine.

We also tried a therapy suit at the ISD this week. He looked so cute, like a little super hero in the suit. The suit acts like a big, continuous hug, that gives proprioception and feedback to his body all over. It is basically like a full body thin neoprene suit. His athetoid movement (uncontrolled movement of his arms mostly) was greatly decreased (which is good) and he did really well with his standing and walking in the suit. But when he was sitting he bent his head really far forward, kind of tucked into his chest, which is not normal. The PT and OT think that may be due to keeping his back straighter therefore he tucked his head for balance. We will be trying it again next week and see how it goes. right now we are borrowing another little boys who has outgrown the suit to see if we want to order one ourselves. I will try to get some pictures next week and show you how cute he is.

We have also been working with a Z-vibe, which is basically a small vibrating toothbrush. Memphis really likes this. As soon as he feels it in his hand he closes his hand and will hang on to it for a while. He also smiles and laughs when you put it in his mouth. We use this to get him ready to do more chewing and to reduce the sensitivity to having things in his mouth. I am hoping to get one of these to use at home as well.

We also got a letter last Friday telling us that his new bath seat had been approved. So hopefully soon it will be delivered an we can start using it. Now we are just waiting on the walker.

Botox is Over

2009-02-10T17:47:00.005-05:00

Memphis had his second round of botox injections last Friday and the Dr said his neck was pretty soft before she did the shots. That leads me to believe that once he gets better motor control that the torticollis will no longer be an issue. But the botox injections worked. He is holding his head up straighter, sleeping in his car seat more in the midline (with his neck straight) and is overall doing well with the torticollis. And this is in spite of having the pukey gunk that has been going around. Usually being sick he would have a sever head tilt but not this weekend.

He had been throwing up off and on for a few days but I thought it was due to weaning off the reflux meds. Then on Saturday he was sick, projectile puke and then Sunday the diarrhea started. But by Monday he was much better. It is a challenge with him when he is sick because he cannot tell you what is wrong, he has to stay hydrated (to keep seizures away) and it is bad if he pukes up his meds. But we managed and his is almost back to normal. But this thing is going around, both the PT and OT from the ISD were sick today, so we did not go to therapy, but I was not planning on taking him anyway, since I do not want to spread this stuff around and he is not 100% yet.

On a good note, Friday was the first time Memphis has had a procedure and not needed to be intubated (tube in his throat) to protect his airway. The anesthesiologist thought his airway is strong enough not to need it and they would try it without the intubation. He did well and did not need the tube, so what we thought would be an all day thing was only a couple of hours. It is good that he will not need to be put out for every little thing now. That means if he needs sedation for EEG or another procedure they can do it with just a mild sedative and not have to put him out. Yeah, progress.

New Ideas

2009-02-05T18:44:00.007-05:00

After Memphis has his Botox injections on Friday, we (his PT and OT) will begin using Kinesio Tape to help him keep his head in midline (straight on his shoulders instead of tilted). Kinesio Tape is especially designed tape uses a uniquely designed and patented tape for treatment of muscular disorders such as torticollis. The Kinesio® Taping Method involves taping over and around muscles in order to assist and give support or to prevent over-contraction. The first technique gives the practitioner the opportunity to give support while still maintaining full range of motion. This enables the individual to participate in his/her normal physical activities with functional assistance. (this photo is not of Memphis but was the only one I could find to show what I am talking about) We hope this along with the Botox and PT will help him to control his muscles enough to make them stronger, therefore allowing him to hold his head up all the time. He only tilts when he is not thinking about holding it up, mostly out of habit, but a little bit due to muscle control. You may also have seen Kinesio Tape at the Olympics, specifically on Kristy Walsh of the US womens beach volleyball team. See the blue tape on her shoulder.

We have also had an intensive PT/OT program recommended to us called Euro Peds and I think we are going to research it and see if it is right for Memphis. This is the only program of its kind outside of Europe and it is located in Pontiac, so we are within commuting distance. Memphis would need to be 2 years old because that is when they feel that a child can handle the intense program, up to 4-5 hours per day of PT/OT up to 5 days per week. It was recommended by a person that Brad knows from work and she said that is where her granddaughter learned to walk, so that is pretty powerful. It is kind of nice to know there is something this close to home that we can access and that BCBS will pay for as well. I plan to contact the clinic and get a tour as well as talk to an on staff PT or the clinic coordinator. We would have to apply and be accepted into the program before we could start and we have at least until July as that is when Memphis will be two. I also want to discuss this with Memphis's neurologist.

We are also looking into getting Memphis a Benik vest or TheraTogs to help with his athetoid movement (movement Memphis cannot control, looks a little like flaling). Basically, these suits are like Memphis getting a continuous hug, which gives him stability in his trunk and helps him to make his movements more purposefully. This was recommended by the OT from the ISD and we are in process of borrowing one from another child who has out grown his and no longer uses it. We want to try it out before we buy one. We also want to discuss this with the neurologist.

(Benik vest on the left, TheraTogs on the right)

Which brings me to my last topic. No update from the neurologist visit today because we did not actually see the Dr. We went to the clinic, all the way in Birmingham and when we arrived found out that I had written the wrong day on my calendar. His appointment is on 2-25 not on 2-5. So we will go on the 25Th of February to see if he can get off his one med, ask about all the thinsg we have questions about and show him how good Memphis is doing.

Memphis and Aunt Carly

2009-02-03T08:00:00.001-05:00

Meds, Meds and more Meds

2009-02-02T18:56:00.007-05:00

We have had a couple of appointments in the past week and all went good. We have been weaning Memphis off of the reflux meds and his is doing well. That is a really good sign. Hopefully weaning off meds will make his body work better too, like with the constipation and focus. You may be saying, what is she talking about, well...

Psychotropic and anti-convulsants, like seizure meds can cause problems with focus, which affects fine and gross motor movement. They can also affect appetite and other things too. All of Memphis's side effects are pretty mild, but they are still side affects that as a mother I would like to see go away.

You mayhave seen when someone is in the hospital that they have to have a bowel movement before they can leave and that getting up and walking helps this. Well, Memphis can't walk, but spending time in his ExcerSaucer or StandingDani helps. Gravity does wonders sometimes. You may also know that taking some types of meds can also compound this problem, like his meds for reflux and one of his seizure meds. So getting off of these drugs is really going to help on so many levels.

On the hand I am a little scared to take him off the Keppra, because what if he starts to have seizures again, will we have to go through all this again. More EEGs, more visits to ER, etc. I am also worried that his hypertone (tight muscles) will come back as well. That means more therapy, more stretching and it being harder for him to make his muscles work properly.

Hopefully as we continue towards weaning Memphis off of the meds, all will go well but it is scarely none the less.

Progress

2009-01-27T19:37:00.005-05:00

We visited the gastroenterologist today and got good news. Memphis is doing really well. He now weighs 23 lbs 4.5oz and is 33 inches long. That is after a weight lose of over 1 lb when he had pneumonia in Dec. He also is at the point were we can start to wean him from the Prevacid, which he has taken for the past year for reflux. About 20% of babies have reflux and it is especially prevalent in preemies and babies with dev. delay due to poor muscle control and muscle development. If you know someone with a "colicky" baby please have them find out about reflux and talk to their Dr. It can make a world of difference for them and their child.

Memphis has been taking the same dosage of Prevacid since he started on the meds and has done very well. So today I asked the Dr if we could wean him off and he said yes. My feeling is the less meds the better, but if he needs them OK. so for now he will get his Prevacid one every other day.

On another note we went to therapy again today at the ISD and Memphis is continuing to improve and I am learning new ways to work with him to stretch his muscles and teach him to do new things. I actually like working with the ISD and with Full Circle. Kids of gives two perspectives and he gets another set of people who have already fallen in love with them.

I also contacted the guy who is ordering Memphis his walker. The initial request was sent back by one of the insurance companies for more info. So I had not heard anything in a couple of weeks so I decided to call. It does not hurt to call and remind them that you are waiting. Both requests for the bath seat and the walker were resubmitted last week and now we just wait. Last time it took 5 weeks to get a response. so back to the waiting game.

For Daniel

2009-01-24T22:43:00.003-05:00

Please keep Daniel in your thoughts, as his family goes through another medical trial. Daniel is the little boy who has the blog http://danieljohnmaxwellspranger.blogspot.com/ that inspired me to start one for Memphis. Daniel and his family are from Michigan and see the same neurologist. Daniel has begun having infantile spasms again after not having them or being on seizure meds for an extended period of time.

It is scary to think that we could get Memphis to the stage were he does not have to take seizure meds any more and then he could start having them again. Memphis does not have infantile spasms but that is just another form of seizure.

Please keep Daniel and your family in your thoughts as I know this must be devastating for them.

Update on Inchstones

2009-01-19T18:48:00.004-05:00

New Inchstones:

He was sitting Indian style in front of the OT and she gently pushed him to the side to prompt him to catch himself. He did, he caught himself, put his hand down and pushed himself back upright. Then he did it two more times the next day. Yeah!

He uses his index finger to touch things a lot more now. We play a game were I touch his nose with his finger and say nose then I go "BEEP" and then I touch my nose with his finger and go "BOOP". He laughs and we do it again. Lately when we have stopped the game he tries to touch his nose with his finger. He doesn't always get it to his nose but at least it is on his face.

We are going to the neurologist on the 5th and the OT from the ISD says that if we can start to wean him off the Keppra (seizure med) than she thinks that we will see his focus and fine motor skills improve. So with the improvements he is making now that would be really cool.

Hands and Fingers

2009-01-19T18:38:00.009-05:00

Memphis is starting to use his hands more and has figured out that he can put stuff in his mouth with his fingers. Both of his occupational therapists have suggested playing with food. Sounds funny huh, you send years teaching your kid not to play with food right. Well, I spend time teaching mine to play WITH his food.

We do not play in our food very often because it requires all of the stars to be aligned to work out.First, he needs to be hungry, so doing it right after breakfast or dinner is out. You need to find something he likes, is bright colored and will stick to his fingers. He needs to be in a good mood. And there needs to be time to give him a bath after he is done (see what I mean).Today we played with whipped cream that I put green food coloring in, so it was easier to see. His accuracy is not the greatest but he gets an A for effort, plus he had fun.

The green does wash out but it is a little hard to get out of the nose and ears. By the way , his tongue was green for the rest of the day too.

Botox: Not just for frown lines

2009-01-17T18:01:00.006-05:00

We went to see the craniofacial Dr last Friday and she said Memphis's head is continuing to grow on his own curve. His head circumference is not on the normal scale for babies or toddlers due to his microcephaly but the Dr said it is growing and at a consistent rate so that is good.

Memphis will also be getting his second set of Botox injections in his neck on the 6th of Feb. He had his first set on June 24th, 2008 and they helped a lot. I know you are probably thinking that Botox is for frown lines and crows feet for rich middle age women, but that is not true anymore, it can be used therapeutically for children with CP. In basic terms, the Botox is injected to help the muscles in his neck to relax so he can keep his head upright. See below for more info on Botox and CP or click the link. The Dr was impressed with his range of motion and his head control but thinks that the tightness that is still there plus habit may be causing him to continue to tilt his head to the right. The good thing is that the Botox injections only take a couple of seconds and that they may be able to piggy back with a ABR hearing screen while he is under.

When most people hear the term botox, they automatically assume that the impending use will be for some celebrities wrinkled, aging face and their last stab at beauty. However, few are aware of a more important use for botox, and the connection between botox and cerebral palsy.

Botulinum toxin type A, or botox, is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. Botox is produced from the bacteria that causes food poisoning and provides relief for muscle stiffness at the site of injection. Though high doses of botox can be deadly, the very small doses used in cerebral palsy cases. Over the past ten years, the use of botox has shifted from wrinkle reduction to successfully treating muscle spasticity in children with cerebral palsy, making botox and cerebral palsy a hugely successful match.

The marriage of botox and cerebral palsy may seem odd at first, but is actually quite practical. When prepared for therapeutic use, botox is injected in small amounts into the spastic or stiff muscles. It begins to take effect by blocking transmission between the nerves and the affected muscles. The injection stops the signal between the nerve and the muscle, relaxing the muscle and reducing stiffness. Botox only affects the muscles that are injected and once the muscles are relaxed, therapists are able to stretch the muscles and stimulate normal growth.

There are several benefits associated with botox and cerebral palsy. Botox injections can offer many benefits including ease in stretching, improvement in child’s range of motion, tolerance to wearing braces and developmental improvements in crawling, standing, or gait changes.

Back to work for Memphis

2009-01-08T21:44:00.005-05:00

Memphis is back to work at therapy. He is going to see speech, OT and PT every Tuesday and PT./OT on Thursdays.

Now that we have switched from the HMO his PT and OT will be covered again at Full Circle. We have a limited number of visits (70 combined per year) so the therapists have worked out a way to stretch out how many visits he can get so that he can get the most benefit. We had our first appointment at full circle today and they have not seen Memphis for over 6 weeks. They were very impressed with how well he is sitting and standing. He can sit for almost 30 seconds by himself, sometimes longer. (Good inchstone).

We also had a visit to the ISD on Tuesday and saw Speech, OT and PT there as well. It works out well since it is all in one place and cuts down appointments from 3 days per week to one. They have not seen Memphis since before Christmas and were also impressed with how well his is sitting and standing. They're also working on the information for getting his walker. (Hopefully soon.)

Some of the things we will be working on at home and in therapy are:

more work on his four point (hands and knees stuff) so that he can learn to crawl
eating more solid foods (magic bullet blender works great)
eating snacks to desensitize his mouth and work on tongue control
holding objects for prolonged times to desensitize his hands
working on getting him used to progressively colder objects, so he can eat ice cream, yum
of course, standing, walking and talking

We are going to Detroit to see the craniofacial Dr tomorrow and I thing she will prescribe another round of Botox for his trap, which should again help his balance and head control. We will find out tomorrow.

No More Be-spectaculed Little Man

2009-01-05T22:09:00.005-05:00

We went to see the eye Dr. today. It was a long appointment. First let me say that we see the Eye Dr. in Clinton Twp at the Stilson Center (a clinic owned by Children's Hospital) because it is closer and the wait is much shorter generally. We were scheduled to see a different Dr today than normal because Memphis's normal eye Dr is on maternity leave. Today we walked in and the waiting room was full. Not a good sign. We signed in, gave them the new insurance card (new insurance started on the 4th of Jan. so no more HMO, YEAH!) and took a seat. We waited an hour before we got called to the exam room. The tech said his tracking was much improved and man was he locked on her. I told her how he fights his glasses now, shakes his head and tries to get them off. She said they would dilate to see if he needed new specs. Not something we planned for today, but OK, whats another 30 minutes in the waiting room. While we were waiting we went into the eye glass shop attached to the clinic and picked out new glasses for Memphis. We (I) picked out these little blue glasses made of hard rubber but completely flexible, good for learning to walk. Then we got called back into the exam room and saw the Dr. The Dr said Memphis's vision is much improved, he still has a little bit of wiggle in the right eye but the Dr thinks that will improve with increased muscle control and motor development. He also thinks Memphis trying to get his glasses off may due to sensory issues and him not wanting things touching his face, kinda like he acts when you put his hat on. But the biggest news is that the Dr said:

Memphis does not have to wear his glasses anymore, unless something changes.

No More Milestones

2009-01-03T19:01:00.006-05:00

I have decided that we will no longer be having milestones in our house, but instead we will be counting things in inchstones. You may be thinking, what is she talking about, is she finally loosing it? No, I have not lost it. Milestone is the common term everyone uses when measuring a child's development and I am talking about counting the little progresses that Memphis has made lately instead of focusing on the big things he is still working on. Since miles are such long distances and he is still working on making the big leaps in development (walking, standing alone and feeding himself) we will now be counting the things he can do and that most parents take for granted, I have decided to call them inchstones. Some of Memphis's inchestones are:

Using his pointer finger, on purpose, to touch things

Putting one or both hands on his bottle, a lot

Keeping his balance more when he is standing

Holding his head up more when he is standing

Sitting by himself for a few seconds

Paying attention to the TV

Babbling a lot and making new sounds

Some of the things we are still working on:

Actually holding the bottle

Getting his hand to his mouth with food in it

Pincher grasp

Catching himself when he falls over when sitting/standing (he thinks it is fun to fall)

Keep in mind 1 mile=63360 inches, so it is a long journey but we are up for it.

New, Year New Layout

2009-01-01T10:37:00.004-05:00

I was getting a little bored with the layout of Memphis's blog so I changed it up a bit. I am not totally satisfied with it yet and I think it may be a little to adult now. Don't be surprised if you check back and see that it has changed yet again.

Happy New Year and Bah Humbug to Insurance

2009-01-01T09:50:00.006-05:00

When I got home from work yesterday I saw that we had gotten a letter from the company who we ordered Memphis's pacer walker through. It was just a copy of a denial/request for more information from his Children's Special Health Care (CSHC) insurance. I remind you this is the Medicaid insurance for kids with disabilities to be able to get and pay for the things that private insurance will not. We have already received a letter from my private insurance that they would pay for 50% of the walker (which is what my plan pays for in medical equipment) but they do not provide hygiene equipment so the bath seat is out from private insurance. CSHC wants more info on both products and to see if there is a "economical" alternative for the bath seat.

Well, we have a bath seat and it does not work all that well and when Memphis's legs are tight it is uncomfortable for him, not to mention hard to get him into. He needs a bath seat with some support around the middle (i.e. a strap) since he cannot sit up on his own yet and he thinks that falling over is fun, not a good thing in the bath.

For the walker they want to know if a stander would be better and more economical. He is using a stander now (see the Standing Memphis post) and he often tries to "walk out of it". CSHC wants to know how far he can walk on his own. Duh, if he could walk on his own he wouldn't need a walker, would he!

They company we ordered the product through has sent copies of the requests to our PT that works with Early-On, but since it the holidays the PT is on vacation since the school is closed. It took 4 weeks for private insurance to approve, which has got to be some sort of speed record and CSHC took 8 weeks to request this info. We were supposed to have the equipment by now not be sending in more paperwork and the letter says that resubmissions are treated as new requests. What the H**l, you asked for more info, not me, why is that a resubmission. Also, my insurance through work is changing and I am sure we will need to have the new insurance approve the walker and start this process all over again. So now I am sure it will be another 8 weeks minimum and Memphis will probably be to tall for it when it comes. Maybe by the time they get off their A** and decide that he actually needs this equipment he won't because he will have learned to walk on his own and be graduated from high school.

I do plan to call Lansing and talk to someone from CSHC because they are inherently slow on everything. I don't know if this is the way they do things with regular Medicaid because I have not dealt with that before but I hope people who are acutely sick and need something get it and do not have to wait this long, they might die. I thought this CSHC would be great since it was designed for children with disabilities but it is no differnt that any other insurance, except that mine and your tax dollars are going for someone to sit in Lansing, look at a piece of a paper and decide what is best for my child, that they do not even know, have never seen and never will.

Almost One Year Ago

2008-12-28T17:14:00.002-05:00

On my way home from work last night it occurred to me that it has been almost a year since we found out Memphis's MRI was abnormal and he had a brain malformation. That was January 10th, 2007. I think the hardest thing about being given that diagnosis was that we did not expect it at all. Neither did the Dr who ordered the MRI. We knew that he had other issues, like reflux, plagiocephaly and torticollis, because you could see the physical signs of those. But up until 5 months Memphis was progressing normally in his development and so the diagnosis about the MRI was a shock.

On that day almost 1 year ago a dream died. Our dream that Memphis would grown up a normal little boy and do normal things. The dream that he would be just like everyone else's child and we would be normal parents. I still grieve that dream. But now we have a different dream, a dream that Memphis will be able to normal things and that he is an intelligent child we just need to figure out the way to let him express that intelligence. By no means and I saying that life with a special needs child is all peaches and cream but that we are very lucky that Memphis's special needs are very mild and that I still have great expectations for him.

For those that ask when we will be having more children. My reply is usually that we need to know what Memphis's needs are going to be first. I refuse to have another and not be able to meet that child's or Memphis's needs. It is just not fair. My silent response is that I am afraid to have that dream again. I know that the Dr told me that there is almost 100% chance that we would not have another child with the same genetic deletion, but what if it is another Chromosome, what if another child was born with autism or downs? For me right now that is too many what ifs added to the not knowing about Memphis.

Standing Memphis

2008-12-27T16:50:00.001-05:00

Memphis has been given the use of a Standing Dani. Basically a Standi Dani is like a wheelchair but kids stand up in it. The PT and OT from the ISD in Lapeer had the Dani at their facility. It was another little boy's who passed away and never used it. His family donated it to the Early On program at the ISD. Memphis is the only child they are currently working with that can use it. So they have given it to us to use until there is another child who needs it and then we can share or order our own. He really likes it and it helps with a lot of things. It stretches his legs, builds his trunk control and stregth and allows him to play with his toys on the activity tray while supporting his body. We are very greatful to the Early On program for loaning it to us and are really excited to be going to PT and OT at their facility at the ISD. Memphis reacts well to outside stimulus and he did really well there on our first visit. We have seen a lot of progress with Memphis in the last month or so (even with being sick) and hopefully good progress to come in the new year.

Chirstmas Tires Me Out

2008-12-26T23:23:00.005-05:00

It seems like Christmas snuck up in me this year and that even when I was driving home from work at midnight on Christmas morning I did not feel ready. But when Christmas morning came around it was nice to be able to be home with my family and have a loose schedule for the day. I was lucky enough to get "excused" from work for the day (which means I was given the day off with pay). Memphis, Brad and I all slept in a little in Christmas morning, which was a gift in itself. Below you will find an overview of our day in pictures.

Memphis is tolerating the reindeer antlers.

Wrapping paper is kinda cool, it crinkles.

Worn out after a long day.

Welcome to Holland

2008-12-22T23:38:00.004-05:00

This is an analogy written by a mother about what it is like to raise a special needs child.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands, the stewardess comes in and says "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

written by Emily Perl Kingsley

Wordless Wednesday

2008-12-17T19:17:00.003-05:00

MERRY CHRISTMAS

He is soooo Cute!

2008-12-16T19:00:00.002-05:00

This is my favorite from Memphis's photo session in November.

We had Memphis's photo taken in Novemeber at a local portrait studio, that is located in a department store. This was a challenege because he cannot sit up by himself but is still active enough to move around and get out of position. I don't think we will go back to that studio. It was expensive, the props were ok but not great and I think we only got half of the good smiles we could have. We did get some good photos and the one above is my favorite.

Sick, Sick, Sick

2008-12-15T18:32:00.017-05:00

Memphis has been sick, that is why I have not updated for a while. I took him to the Dr. last Monday because he had been stuffed up and on Sunday developed a cough. Diagnosis was sinus infection, take antibiotic and allergy med and he should be fine. He woke up Tuesday and hacked up a bunch of gook. Yuck! Wednesday he had a low grade fever which broke with Tylenol. Wednesday night, when I turned in the driveway after work I noticed the lights were on in the house and that is never a good sign. Everyone was awake and Memphis still had a fever. He had just gotten Tylenol and was seriously mad. I got him calmed down but it took him over an hour to go to sleep. Every time he would calm down and quit crying he would cough which would cause him to cry again. Finally about 2:30 a.m. he went to sleep. Then at about 3:00 a.m. he had a very minor seizure but a seizure just the same. After the seizure broke he went back to sleep until around 4:30 a.m. with a fever. He went back to sleep at 5:30 until 7:00 a.m. From 7:00 a.m. till we saw the Dr. he was a limp noodle but alternating whining, moaning, crying and coughing. I called his pediatrician and we went in around 9:45 a.m. Dr sent him for chest X-rays to rule out pneumonia. By this point Memphis was no longer whining and slept a little. After the X-rays we went back to the Dr. and he said Memphis had the start of pneumonia in his right lung. He prescribed a nebulizer and another, stronger antibiotic. While waiting for his meds from the pharmacy he had another seizure (again mild). I called his Neuro to ask how much Diastat he could have in one day. The nurse called back and I told her that I did not want to adjust his seizure meds again while he was sick, because by the time he was better he would be so doped up he would not be able to function and she agreed. I asked what is the amount of Diastat he could have and she said he could not have any more, but also asked if he had been drinking, which he had not. The nurse from Neuro said that being sick lowers the seizure threshold, having a fever lowers it more and being dehydrated lowers it even more. We needed to get him re hydrated ASAP. So I turned around (I was just leaving Lapeer after getting his meds) and went to the ER. They were really cool in ER. I told them about the Dr visit in the morning, the X-rays they had on file and what his Neuro nurse said. They agreed and the ER doc said he was pretty dehydrated, which gets worse when you have a fever. His hands and feet were pretty cold, which means his body was not circulating blood to them but rather to his vital organs. They started an IV (on the third try, he has little veins, like mine, that are deep, like Brad's and he was dehydrated). The lab tech came in and poked him again to get blood for labs, so my little man looked like an ad for Band-aids. After 350 mL of fluid and IV antibiotics we could go home. Hehad a fever again that night and again in the morning but none since. Friday was a battle getting him to drink and take his meds. He would stick his tongue out as soon as you put anything near it, thinking he was going to get more medicine. Finally on Sarurday he started to drink pretty good again and by Sunday he ate pretty normally. Today we got the first smile out of hime for the last week and he played. He still wears out pretty easy, but he is almost back to normal. Now we know that if he quits drinking or we think he is dehydrated to make sure he either gets more fluids or to take him in. I feel like rasing kids is such trial and error and last week was a bunch of error.

Demons in the Night, Clowns during the Day

2008-12-09T18:58:00.008-05:00

When you put your child to bed you hope that they sleep well, don't wake up in the middle of the night and have good dreams. You probably never hope that they are not visited by demons in the night. Well, sometimes Memphis is visited by demons in the night. That is the only way that I can describe it when he has a seizure in the middle of the night. His seizure behavior is so out of the ordinary for him that it is unmistakable and scary. It can wake me from a dead sleep in no time and I know exactly what is happening.

Needless to say, Memphis had another seizure early Monday morning (3:30 am). It was a short one but still lasted a little over three minutes so we gave him Diastat and back off to the land of nod he went. Then he had another seizure, at least we think it was a seizure, when he went down for his nap on Monday. But this one was not a demon, it was a clown, a very scary clown. He was giggling in his room when he was supposed to be sleeping. Now let me say that this is not uncommon for him to laugh and talk (babble) when he is supposed to be sleeping and is still awake. But this lasted a little to long and then he started to do his squeal, which he does when he is really laughing or being tickled. So I went to check on him and sure enough, his right arm was straight as a board and twitching, with the other arm bent and his head turned. When he would quit laughing for a little while he would look at me and track me but his arm was still twitching. Then he would laugh harder or squeal and his head would turn again. So the conclusion was seizure. About the time I was going to call the Dr to see if he could have more Diastat he quit seizing and "woke up". At least his seizures do not seem painful to him and he wakes up from them happy and not disoriented.

I had already called his pediatrician to see if he could come in because he has had a cold for over a week and developed a cough on Sunday. The last time he got sick (had a ear infection) he had a seizure and his neuro said that when he is sick his seizure threshold is lowered. So his Ped said he has a sinus infection, yuck, and prescribed Zythromax and said we could give him Clairitin to help with the congestion. He is also getting Tylenol for sore throat. So now my kitchen counter looks like a pharmacy and I feel awful because I could have started him on the Clairitin earlier and maybe avoided the seizures. I did not give it to him because he was only a little congested when he woke up and the Clairitin says it is for allergies and I hate putting any more meds into his little system than I have too. Every time we add more meds he sees to loose focus a little and to have some minor side effects, but none as bad a seizures. Well next time he will get the meds as soon as I notice he is congested and maybe I can help him fight the demons and the clowns.

A Swing for School

2008-12-09T18:27:00.008-05:00

I tried to post this last week but Blogspot was having technical issues and it crashed the whole blog. The original post was lost so I am rewriting it and posting it now.

As part of Michigan's Early On program Memphis has a school teacher who comes to our house once a week to work with him. Her name is Ms. Patti and she is great with Memphis and all the other Early Childhood Development children that attend school at NB. She teaches 3-5 year old with special needs at the school 4 days a week and sees 0-3 year olds in their homes 1 day a week. I was talking to her about NB's new school and if she liked her new classroom. She was telling me about the Early Childhood classroom (which Memphis will go to when he is 3) and that NB has a gross and fine motor skills room, with a PT and OT who work with the kids at the school weekly. She was so excited and animated when she was telling me about the classrooms and the equipment. Everything is new, the classroom is ideally situated and even has its own bathroom. The one thing she did say that was cut from the budget at the last minute and she wished they had was a therapy swing. So that got me to thinking, how much does a therapy swing cost? How hard would it be to raise the money to get one? So I started doing some research and pricing things out. I have found that I think a swing with most of the attachments will cost about $5000. I think I can help the school raise that money. I have experience raising money and know what it is like to work on less than a shoestring budget (I spent 5 years working for MSU Extension, talk about tight budgets). So I asked Ms. Patti the last time she was at the house if it was Ok to help raise the money for the swing and she was really excited and said she would get the specifications of what they had originally hope to order to help me.

My plan of action is to contact the principal to make sure she is Ok with me doing this, and then send a proposal to the school board outlining how I plan to raise this money.
Here is a basic outline:
Contact Lapeer Wal-Mart's community giving coordinator and ask for a donation
Contact local civic groups, like NB lions and Masons as well as our local wheelchair athletes group
May have a dress down for a donation day at the school for teachers
Possible host a scotch doubles bowling in the spring
As well as possibly solicit donation via Pay-Pal
I have also researched and identified two grant options I may pursue as well

Here is the website for the swing and attachments. This site is not the cheapest but is the easiest to look at. Below is a little info why swings are good for kids.

As moms and teachers everywhere know, kids have a lot of energy. They need to move and play to get that energy out. This is true of all kids but this necessity is taken to a whole different level when dealing with kids with special needs. Children with ADD, ADHD, Sensory Integration issues, and Autism all benefit from daily movement and stimulation. Although each kid is different, occupational therapists often use various kinds of swings and swinging techniques to help these kids regulate their bodies. Swinging therapy helps kids focus and increases a child's body awareness.

Occupational therapy is a key component to a successful program for kids with Sensory Integration Dysfunction (SID). Swings of various kinds are used to help regulate the vestibular system and some can provide proprioception for calming kids down and increasing body awareness. Often times parents find carrying over occupational therapy techniques into the home a daunting task. Many parents turn their family rooms in an OT clinic but not everyone has the skills or ability to hang swings from their ceilings or cover their floors in mats. The best solution for most families is an indoor swing that has a variety of attachments and a solid support bar.

Hippotherapy

2008-12-01T18:07:00.005-05:00

I am going to start Hippotherapy and therapeutic riding with Memphis this spring. I am excited because this is something Memphis and I can do together and it will help him to get better motor control too. Here is a great link to find out more about Hippotherapy.

Hippotherapy article and video (video is in small box on the right of the article)

What is Hippotherapy?

Hippotherapy is a strategy for improving strength, balance and posture used by physical and occupational therapists that utilizes the movement of a horse. Used in Europe since the 1960’s, hippotherapy has been used in the United States since the 1970’s in combination with traditional treatment strategies. The goal of hippotherapy is to improve active postural control so that performance of functional motor tasks off the horse is improved. “It is hypothesized that the stretching, facilitation, mobilization, spatial orientation and tactile reactions that are required of the child during hippotherapy will improve posture, balance, mobility or function in daily living” (Casady and Nichols-Larsen, 2004). The excitement of working with a horse creates the enthusiasm and motivation needed for the child to be an active participant in therapy, which improves the outcome of therapy.

During hippotherapy, which is prescribed by a physician, children typically sit on a pad rather than a saddle to better feel the horse’s movement. The surface of the horse moves three dimensionally. During hippotherapy, the child learns to anticipate and make the postural adjustments necessary to remain upright. The warmth of the horse coupled with this rhythmic movement is thought to be useful in reducing high muscle tone and promoting relaxation in the rider who has spasticity. During hippotherapy, the movement of the horse is controlled by the therapist. This differs from therapeutic horseback riding where the child uses a saddle and the goal is for that child to learn to ride independently and experience the physical and social benefits of riding.

A Little Sunshine in the Snow

2008-11-29T23:04:00.006-05:00

Even though the snow has melted over the last few days here in Michigan, it will be a long winter, with lots more snow to come. So I thought I would share this little ray of sunshine. Here is Memphis last fall, with his BabyBanz. He likes the outdoors and the wind, but not cold wind. We will post more photos of this winter on his sled. Yes, Memphis has a sled, but no snow pants yet (maybe Santa will bring some).

A Little Bit if a Rant

2008-11-24T18:20:00.006-05:00

There are days I feel like telling people something really sarcastic or throw out a quick comeback when they make a comment about Memphis but I just don't. I don't know why, because there was a time in my life when I would have told anyone whatever I thought, or the first thing that came to mind. But I guess we all have to grow up sometime. Or else I just do not have the energy to waste on people who will not get it anyway.

One of the hardest parts about Memphis having CP and his other issues, is that other people just don't get it. So I have compiled a list of the ten stupidest things I have heard since finding out Memphis is special needs:

1. I watched a woman tell Memphis he needs to get better so he can play with other kids. DUH! This is not a cold, he is not going to "get better" and everything will go away. I wish it worked that way but it doesn't.
2. I should make him walk so his legs get stronger. Again another winner from shopping in the superstore. It's not that he chooses not to walk, he can't (yet)!
3. A woman said this to me at the fair this summer: "We went through the same thing with our son, but it turned out to be mono" Mono is not the same thing, your son got better, go away!
4. He'll be fine once he goes to school. Yes, he will be fine at school, but again, there is no quick fix for CP.
5. He was perfect when god made him. To God: Obviously the person who told me that is not perfect, but my Memphis is, not matter why he is a special needs child.
6. His therapy is hurting him. This comes mostly from the older folks who go to therapy too and hear him whine (which to an untrained ear is like crying) while he is getting stretched. Really, therapy does not hurt him.
7. It's time to wean him from the bottle. I wish, but he can't hold a bottle or a cup and a cup makes much more mess so for now it's the bottle.
8. I should go right to the fabric store and make him a pillow to help him sit up in the shopping cart. Mind your own business.
9. He doesn't look like he's retarded. Oh my god. What does retarded look like?
10. I know just what you are going through. No you don't! Unless you are afraid to let your child go to sleep because he might have a seizure, your child can't walk or talk when he should be, your child has been put under more times in 1.5 years than most adults in their lifetime, your child spent 7 months vomiting and screaming, couldn't see your face up close until 6 months and had sleep apnea before 6 months, then NO YOU DON'T and don't think that you do.

Fear of Seizures

2008-11-22T19:41:00.004-05:00

I don't think I have been more afraid of anything in my life than Memphis continuing to have seizures. I hate the feeling that I can do nothing to keep it from happening and really nothing to stop one if it starts. After he has a seizure it is like walking on pins and needles, waiting for the next one, since he usually has multiple in one day if he has them. They are always when he is sleeping too and being afraid to put your child down to sleep is a terrible feeling. Sleep is supposed to be peaceful and a time when their bodies can repair themselves and grow, not a time to have seizures. The Dr said he has them when he is sleeping because there is a lot of frontal lobe activity when you coming into and out of deep sleep and that Memphis is having frontal lobe seizures.

He did have one that was caused by an ear infection that we did not know he had. That brings on a whole new fear. The fear that he will have febrile seizures (seizures caused by fevers) now and that I will not know if he has a fever or infection to keep him from having a seizure. At least we have an explanation for the seizures cause by fever and can give him antibiotics or medicine to stop the causing agent from continuing. Click here for more info on febrile seizures. But I hate being the parent to who has to run to the Dr every time my kid sneezes because I think he may have a cold and it will result in an infection.

Thankfully he has been seizure free (except for the febrile seizure) for 6 weeks now. The Dr also said that if he can go without having a seizure for a couple of months (Oct to Feb) until our next Neuro visit that we can start to wean off the Keppra. Which is good. He is currently on the max dose of Keppra in combination with Topamax. The addition of the Topamax seems to really help. Check out the Keppra website (see link above) it has some great info, including personal health cards, personal health records, babysitter card and other useful stuff.

Coming to Full Circle

2008-11-21T18:52:00.009-05:00

Memphis has been going to the same physical therapy clinic for over 13 months now and today was our last visit until the new year starts. We cannot go there anymore because our insurance says that they do not pay for PT/OT for chronic conditions but only to restore the loss of activity due to illness or injury. But the kicker is that when I called the same insurance company to request a case manager to help coordinate Memphis's care and make sure he gets the services he needs, like PT, the insurance company told me they only provide case managers to people who have chronic conditions and Memphis did not qualify. Well, is it chronic or not? seems it is when they want it to be and not when they don't. So needless to say now that it is open enrollment time for insurance selection at my work we will be going with a different company. The only reason my current carrier (not mentioned due to possible liable and slander issues) is at all appealing is that their co-pays are cheaper but they have doubled co-pays to specialists, pediatrican, PT/OT and pretty much all others. So there is no appeal now. We will be with another company who will pay for PT/OT for Memphis (I checked) as well as pay for his PediaSure, his walker and all his other needs.

We are starting up PT/OT with Early-ON (our local early education program) to come to the house once a week in the mean time but I am truly pissed at not being able to take Memphis to Full Circle PT. I thought both his OT and his PT were going to cry today when they realised today was the last day for the next 6 weeks. We will be going back to Full Circle in January once a week and still having the Early-On come to the house once a week too. That way we get two sets of eyes and opinions and get to maximize the number of visits we can go to.

First Haircut

2008-11-17T18:11:00.008-05:00

I am taking Memphis to get his haircut this week for the second time. Here are some pics of the first time. He sat really good and did not cry at all.

Pre-cut with around 6 inches of curls on the top.

Post haircut. No longer a baby but a little man.

A special gift for not so special people

2008-11-17T17:48:00.007-05:00

Sometimes I look around and see people who have no idea how lucky they are to have "normal" children. By this I mean people who have ignored prenatal care, like smoking, doing drugs or drinking, etc and still have a healthy, happy baby. I saw this last night with a mother at my work who was found to have a small amount of pot in her car. She also has an 8 week old baby. She told the officers that the pot was for her personal use and then proceeded to ask if there was somewhere she could nurse her baby in private. I wanted to scream, then ask her if she knew what she was doing to that special gift she had been given, how lucky she was. Or a parent who has a "normal" child who they ignore and chose not to be a parent too. I don't understand how you can just ignore your child, normal or special needs. It makes me want to shake these people and tell them how lucky they are and to get their S**T together. That there are millions of people in this world who cannot have children and would love to be parent to their child. That there are millions of parents out there who do did everything right and did not have "normal" children for whatever reason.

I have wondered why we were chosen to have a special needs child. It can be really frustrating when you have done everything right, got married, waited a while to have a baby so you could afford it, live in the same household, had good prenatal care, an easy pregnancy and labor. Then BOOM your baby has a spontaneous genetic deletion, one that has only been found in one other child to date and that the Doctors cannot give you a prognosis because they just don't know. But I know that Memphis was given to me and Brad so that we can give him opportunities to do whatever he can and wants to do and that other people in this world would not give him the same.

Medical Alert

2008-11-14T21:32:00.014-05:00

Just a couple of things I have in my control to keep Memphis safe and healthy.

Soon Memphis will have a medical alert bracelet. Mostly for him having a seizure when I or someone who knows his medical info is not with him. I have found two styles I want to try.
The Velcro one allows you to put his info on the inside and has a medical alert symbol on the outside and the silicone one you can have info engraved like a phone number on the inside.

It is sad to think that your one year old will have to wear a medical alert bracelet, maybe for the rest of his life. Unfortunately this is one of the realities of having a special needs child. But is also cool that someone has designed and makes a medical alert bracelet for children.

I also bought a medical ID card kit from DARE that can have his photo, his info, including medical treatment authorization and emergency contact info on it. This kit can be updated from birth to 18 years of age and all you have to do is pay the S&H. Cool huh. I am glad he willhavethis when he goes to school whne he is three. That way if something happens they can get treatment and EMS will have his medical info and how to contact me.

You can order a medical/emergency id at http://www.nationalemergencyid.com./

I got mine from DARE in Lapeer but I am not sure if they are still selling them.

Daddy's Little Boy

2008-11-13T19:39:00.000-05:00

Brad is a great Dad. He missed a lot while he was is North Carolina but he is making up for it now. He has Memphis pretty much every night, because I STILL am working afternoons. Brad may not do everything like I do but it gets done and Memphis sure loves his Daddy. Brad holds Memphis in his lap pretty much every night, watching TV or reading a book and Memphis fall asleep. He just can't say Daddy yet or I am sure that everyone would hear that more than he says Momma.

A Happy Little Man!

2008-11-08T17:20:00.006-05:00

"Did I do that?"

This is from Memphis's 1st birthday party in July. I don't know if it was the blue frosting, the candle or what but he really got into eating his cupcake. That was the first time he really fed himself.

By the way, the blue frosting came out of his clothes and off his face just fine, no staining at all.

Another Struggle

2008-11-07T17:31:00.005-05:00

This struggle is not about Memphis but for Memphis. He has been going to physical therapy for over a year for one thing or another. Last spring we added occupational therapy to help with vision, hand coordination and working towards mobility. We have insurance that I get through my job and we pay a lot for it, but when it comes time for the insurance to pay its time to put the breaks on.

Recently our insurance company contracted an outside business to oversee the approval of therapy. Basically they hired a company to say no so they would not have to be the bad guy. Since then it has been an ongoing struggle to get any type of therapy approved for Memphis. This means countless hours on the phone and filling out forms, then waiting. The waiting is now over for a while. Yesterday I got a letter from the insurance company in regards to a grievance I filed about getting PT for Memphis for his tightening of his wrists and ankles. Big surprise DENIED. They do not approve therapy for chronic conditions, such as cerebral palsy. Well isn't that just peachy. Now I have to figure out a way to get them to pay for his PT or go to another clinic that takes medicaid (which involves driving 25 miles one way twice a week). The kicker is that the same insurance company told me that Memphis did not qualify for a case manager because they only provide those for people with chronic conditions and they did not consider his "conditions" to be chronic.

The guy who came out to measure Memphis for his walker told me the easiest and quickest way to get it paid for by insurance is to have my private insurance deny it and then have Children's Special Health Care pay for it. That makes me wonder why I pay over $450 each month to have insurance.

The hippocratic oathe for insurance should be: You'll pay but we won't!

Mind Your Business

2008-11-05T18:55:00.007-05:00

I love that phrase. I wish I had the courage to use it more. I am sure all parents get the looks and the comments about how they should do this or that with their kid, but it takes on a whole new meaning when you have a SNK (special needs kid) because conventional things often don't work. The other day Memphis and I went shopping and it was the first big shopping trip we had taken since he grew out of his infant car seat. Infant seats are great because you can just take it and plunk the thing down in the seat of the cart and off you go. But shopping with a kid who has a difficult time holding his balance and sitting up is at best comical and at worst difficult. Never mind the nosy people who think you should be doing something different and tell you that. The strap made to hold a child in the seat of the cart hits Memphis right under his arm pits, which is OK as long as it is not too tight. He sat like that for a long time. We went to three stores in 3 1/2 hours and he was a trooper through it all and only on a short nap while Brad and I had lunch (45 minutes). It was the end of the trip and we were checking out. I had just finished giving Memphis a bottle (still working on the sippy thing) and he was sitting sideways in the seat area of the cart. He was strapped in and had a sweatshirt as a pillow so he was pretty comfy. He started to slide down a little when I was putting the groceries on the belt and the lady behind us said she thought he was tired. I said he probably was, that we had been going all day since when he went to physical therapy. She asked what we went to therapy for and I told he for his ankles and his neck to help stretch them. He was smiling at her and even talking, in his own way. She said she thought he was uncomfortable because his legs were crunched up. Which they weren't, they were just bent at the knees. I told her had just finished a bottle and he doesn't sit up really well yet so it was kinda hard for him in the cart, plus he was tried since he had not had a long nap. At this point I am thinking why am I explaining this to her. Then she says to me, "Well, if I was you I would go to the fabric store and make a harness to help him sit up". I told he I was thinking of using a travel pillow and again she says "I think I would just go to the fabric store..." and which point, thankfully I was paying for our stuff and thinking, to myself of course, well you do that. You go to the fabric store, make your harness and call me when it is done. Again, mind your business.

One month and counting

2008-11-05T17:59:00.014-05:00

Memphis has been seizure free for over a month now. Let me qualify that. He has been unexplained seizure free for a month. He did have a seizure on October 19th, which the Dr. believes was caused by an ear infection we did not know he had. His neurologist is very happy with his progress, his activity level and how well he is reacting to his seizure meds. He said that we can start to wean Memphis off one of his seizure meds if he can stay seizure free until we go back in February. Let hope that happens. From the research I have done, I found out that 70% of kids who get their seizures under control within the first year of onset can eventually go off meds all together. Check out http://www.epilepsy.com/ for more info. Memphis has multi-focal complex partial seizures, which broken down is:

partial seizures start in one part of the brain and spread to the whole brain, the spreading is the complex part

multi-focal means that they can make him do slightly different things each time, like sometimes he looks and turns his head to the left and sometimes right

On another note, I can't wait to see the new elementary school that just opened this week. From what I have been told the new early intervention classroom, which is where Memphis will go to preschool when he is three, is awesome and is right next door to the fine motor skills classroom. Our small town school has a fine motor skills classroom. Pretty cool. You can find more info about the new building at North Branch Elementary

From Baby Equipment to Bigger Equipment

2008-11-02T17:41:00.019-05:00

Memphis's PT and OT from the school and the clinic both think he is ready for a stander or walker to help him get more weight bearing time and mobility. I think he is ready too. The PT from the school says he has really good balance and is strong for a child with CP so she made an appointment to come to the house with someone from Wright and Filipis to get Memphis some equipment. He is outgrowing his baby stuff so now on to bigger equipment. It is shocking how much this stuff costs. Thank God that the regular insurance will pay for some of it and the Children's Special Healthcare will pay for the rest. Some of the equipment we are considering is the Rifton Gait Trainer, the Standing Danny and the Snug Seat Minnow bath seat. It is impossible to comprehend how much these things can cost. The Minnow bath seat alone is $270. and is made of PVC and mesh. I think that as soon as you market something for special needs or as adaptive the price triples.

(Top to bottom: Standing Dani, Rifton Gate Trainer/Pacer Walker, Minnow Bath Seat)

Memphis tried out the Standing Dani (top) today. The PT from the school brought one to the house today for him to try. Unfortunately we could not keep it for a while since it is the only one they have and they are made specifically for each child. It fit him good but not perfect and he really seemed to like it. We also got him measured for a Pacer Walker (middle) and a bath seat (bottom) which will hopefully be here around Christmas (takes about 8 weeks). The guy from the equipment place said to order what you want the most, the Pacer, and then try to get the Standing Dani after we have gotten the one we really want. Sometimes insurance will pay for both sometimes not.

New to the blogging world

2008-11-01T21:05:00.017-04:00

I am new to the blogging world but I thought this might be a good way to let people know how Memphis is doing, share his accomplishments and his challenges. I will not promise to keep this extremely current, but I will do my best. I also have to add a disclaimer that I am not a good proof reader and if I am in a hurry it is even worse so ignore any spelling errors.

Another reason for this blog is that I was inspired by a blog I found about another little boy in Michigan, named Daniel, who has some of the same challenges that Memphis does. He sees the same neurologist at Children's Hospital of Michigan as well. That blog made me feel like Mempis is not the only one out there facing this unique sitaution. I know, I know, it is obvious that Memphis is not the only child who has ever been diagnosed with cerbral palsy or microcephaly, or any of the other medical things we are working on, but the geneticist has only found one other child who has a similar deletion in Chromosome 14 and to have some to identify with is very helpful.

For those of you who may not know, Memphis was found to have a deletion in Chromosome 11 and 14. Chromosome 14 is partial responsible for the formation and development of the brain and an MRI has shown that Memphis's brain is abnormal. He has subsequently been diagnosed with the following (all or partially from the deletion):

Cerebral Palsy
microcephaly (small brain and head)
multi-folcal complex partial epilepsy (seizures)
GRED (reflux)
far sightedness
strabrismus (weak eye)
torticollis (wry neck)
plagiocephaly (head is not round)
trachiomalasia (weak cartiledge in his throat)
failure to thrive (due to his height to weight ratio)

I think that is all but I may have missed something. Most of these things are treatable and his is doing very well with medicine and therapies. Obviously some of these conditions are not treatable or fixable, but can be improved with therapy as well. Some of the treatments are:

Physical and Occupational Therapy: Cerebral Palsy, torticollis (wry neck)
Medication: multi-folcal complex partial epilepsy (seizures), GRED (reflux)
Glasses and eye patching: far sightedness, strabrismus (weak eye)
Shaping Helmet: plagiocephaly (head is not round)
PediaSure: failure to thrive (due to his height to weight ratio)

Memphis no longer has to wear the helmet or the eye patch, so that is good. It is funny, you can take a kid into the grocery store with a helmet or an eye patch and people will smile and ask what happened or why he is wearing it, but put the two together and they don't know what to do or say so they just turn and walk away.

This is Memphis with one of his therapists. He has been going to therapy for over a year now at the same clinic. He likes it there and the people there love him. We plan to stay there as long as the insurance will pay for it. He is making good progress and the goal is crawling by Christmas.