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

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

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

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

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

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

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!

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.

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

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!

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.