Dennis Developmental Center

     Today was Ians long awaited appointment at Dennis Developmental Center. I was highly anticipating it because I thought we MIGHT get some answers on some things. So let me just start off saying this place is awesome and the staff there are phenomenal. They are so understanding and because I know they are so used to seeing kids like Ian I didn't have to worry about "what if he has a full blown fit here? They are not going to understand" I think Dr Fussell is a God send, and her nurse Lindsay too! Anyways...we get there and sit and talk to the nurse for a good 15 minutes just telling her where Ian is at, what its like day to day, how he is improved, and what hasn't  She then asked us "Well how are YOU guys doing with this?" I got a BIG lump in my throat, I almost couldn't answer the question. Talk about catching me off guard. I have never been asked by any Dr, nurse, etc how I was doing under all this stress. I managed to get out "ummm its very stressful" she seemed genuine and it really meant a lot to me. She gave us the opportunity to ask any questions. So I asked about Autism. I got some interesting information. First IF he is autistic we are doing everything we would be doing anyways so its not like we are losing time or doing anything wrong. So we then met with Dr Fussell and talked about starting PECS in his speech therepy. PECS is a way to communicate using pictures. Here is a cool video of a kid with CP and autism using PECS  http://www.youtube.com/watch?v=OKQdMH7Wiok  We got about 6 different pamphlets from parents night out for parents with special needs children to more clinics he needs to go to. It was a lot of information!  SO no big life changing answers but I think it was a good visit and Ian had a good time. If anyone knows about PECS or has had experience please let me know, Im very curious!



Here is Ian waiting for Dr Fussell

Autism?

     First post for 2013! Well nothing too terribly exciting. Mostly this will be about some things I have been thinking about, and maybe even gets some of my readers thoughts on the subject? And the subject is ........AUTISM. In the very beginning of this journey (late summer 2011) I had a tiny little thought "is he autistic?" I brushed it off. When we took him to the Dennis Developmental Center in Aug to have him evaluated they immediatley excluded autism because he has good eye contact and is very "touchy". The thought has come and gone over this past year...maybe he is, maybe he isnt. I finally got the nerve to research the different types of autism and see if he had any of the characteristics. He does. Yes their are autistic kids that are cuddly and will look you square in the eye, and not all of them are musical geniuses  Anyways I am going to to list the behaviors I see in Ian and maybe someone who knows anything on the subject can give me some insight:

1. Flapping arms when excited

2. EXTREME tantrums that sometimes come from nowhere

3. speech delay (says MAYBE 3 words)

4. excessive spinning wheels (he will spin wheels on a car pinwheel or anything for as long as you let him)

5. fascinated with water                                                   

6. fascinated with ceiling fans and light switches

7. HATES HATES HATES getting dressed

8. Seems happier alone sometimes
9. When upset he will throw whatever is in his hands then cry for it back just to do it again

    Theres probly some more that will come to me later but those are the main ones. He goes back to Dennis Developmental Center Feb 12th. I will be very interested to see what they think of him now. I have several friends that think he is, but I have been very careful I dont want to label it just yet but then again if he is on the autistic spectrum we need to know ASAP and learn how deal with that. If somebody has experienced this first hand or knows a lot about the subject please feel free to e-mail me chastity_16_99@yahoo.com

    Im not sure if I posted on the last one that Ian will have new tubes put in soon and while they are doing that they will go ahead and do a hearing screen while he is sedated. He just doesnt like anything touching his head or ears and completley freaks when we try to do a hearing screen awake.  So thats all for now!! Thanks for reading...really.

MRI #3

      So Ians third MRI was yesterday. Scott could not go because of work so I had my best friend come with me (Amanda). It worked out well. She kept me in high spirits and distracted me when usually I start letting my mind wonder. We checked in at 8:30 and I think by 9:00 we were down stairs in the MRI "suite" Ian had the same nurse he had last time. I wish I could remember his name but he was really great at his job and it was nice to see a familiar face. We were down there maybe 30 minutes and they were ready for him. Of course he screamed and fought and it went exactly like it has in the past. When the MRI was over they called us back before he had woke up. I was so thankful for that so I could be right there when he woke up. I think we were walking out of Childrens by 11:30! It felt like we were in then out.

    Today was Ians appointment with his neurologist Dr Rogers. He had the results of the MRI. He said that everything looked consistent and pretty much the same as the last MRI. There is no talk of surgery on his tethered cord right now since he seems to be really progressing in therapy. There is also no talk of surgery for his Chiari 1. That will probably happen but much further down the road. My favorite part is when he told me Ian wont need another MRI in June! Woohoo. We might actually go a whole year without a MRI! Thats great news.

      Next appointment is Dennis Developmental Center. . Everyone have a Merry Christmas and I will of course keep everyone posted!

MRI and hearing screen

     Well its been an exciting time around here lately. I saw with my own two eyes Ian walk at school. Not just a few steps but like 6 feet! He barely picks up his feet and he looks very stiff but I think its because he is sooo scared of falling. In time he will get over that fear and I will get to put that walker up! He doesn't walk at home on his own. He much rather use his walker still, and I let him because its stressful for him and I know they push him pretty hard in therapy everyday. I want home to be his safe haven. He has been saying hi and bye a lot more too! These may seem like little things to outsiders, but to me its a huge victory!

      Ians third MRI is this coming Monday. I am dreading it in a MAJOR way. He has to be asleep for the MRI so they gas him, and typically I hold him until he is knocked out. Its a terrible feeling to feel his body go from wailing and screaming and crying to limp and and completely knocked out in a matter of seconds....its creepy and very very sad. I usually hand him over quickly and walk out as fast as I can without looking back because its so emotional. When he wakes up he is usually HIGHLY upset but Im feeling better at that point, and then its up hill from there. So please pray this Monday that Ians MRI shows no changes or even improvements with his Chiari 1 would be great!!!! Also pray for my nerves as I will be alone.

   Ian also is going to have his hearing tested in the near future. He hates anything touching his head or ears and just will not cooperate during a hearing screening. So he is going to be sedated and we are going to try it that way. They will also go ahead and put new tubes in his ears while he is under. Hopefully they give him Versed like they did last time :o)

      Well thats everything in a nutshell for now. I will most definitely post the MRI results on here and facebook as soon as I find out. I have family all over the place and this is just the easiest way to keep everyone updated. Thank you in advance for the prayers for Monday.

   

     

3 BIG steps!!

I said I wasnt going to post again until closer to Ians MRI in Dec.....unless something remarkable happened. Well guess what!? It happened! Yesterday I went to go pick Ian up from Pathfinders, and when his teacher saw me she gave me the biggest smile and said "I have great news". My heart started pounding, Im thinking oh did he pull himself up again or say something?She got really giddy and said "he took three steps". I was in disbelief. I was unsure what she meant. "What do you mean...like all by himself? How??" She then told me during physical therapy they had him standing up and slowly got him to let go of the therapist so he was standing on his own. They said he was really upset and anxious (because he isnt used to this) but then he calmed down a little and took THREE STEPS to the therapist. Just like that! We all knew he could do it, its just mind over matter now! Now that doesnt mean he is a walker now but maybe by Christmas! It means he CAN do it we just have to help him build up the confidence to do it. The teacher said "I wish you could have seen it". I told her I would have been a blubbering idiot and I dont mind TOO much that I missed his first steps. I pretty much knew his first steps would be at school. So I had emotionally prepared myself for that. So now those reoccurring dreams I have been having of him walking are finally coming to life. Well I have to go write in Ians baby book now!!!

relatively normal

So its been a while since my last post. Thats because everything has been relatively normal! Ian hasn't had a Drs appointment for at least a month. It is so nice to get a break from that place. The biggest thing that has happened around here is Ian finally got his walker. He got it November 1st. He loves his walker, and when he gets sick of walking around he will just sit on the floor and spin the wheels lol. He does really well with it! He is pulling himself up more and more from higher and higher places. Any progress I see I get really excited about. I think about it like this: If today Ian stopped progressing he would still be able to walk with a walker and communicate with some signs. There was a time in my life I wasn't sure if I was even going to get that. So anything I get now just feels like bonus! Dont get me wrong I have expectations from him and they are not low at all they are just different. 

Something new I have to get used to now that Ian has a walker is THE STARES. I have only taken Ian out in public with his walker a few times. I usually just let him roam the house in it and that kind of thing. Well this weekend we went to Chuck E Cheese for a birthday. He was having such an amazing time just running around checking everything out. With that walker it definitley makes him stand out. He doesnt look like a normal 1 year old who cant walk. When he is tanding strait up and running around with the walker he looks older and of course its obvious he has some disability. Funny thing is I did not mind the little kids asking questions or the adults saying things like "he gets around good with that" or whatever, but just standing there staring at my son with a sad look on their face REALLY bothered me. Its not sad, and if you have a question ASK!I know I am going to come across this more and more and I bet I get used to it. I just dont want anyone to look at my son and have pity. He is not pitiful. He is amazing! So thats all for now. I will update in a couple weeks when his MRI gets closer. (Unless something really remarkable happens :0)) Please keep him in your prayers. I believe he WILL be a WALKING and TALKING miracle

                                                               Ian playing skee ball

just some details

    Well we had our semi annual conference at Pathfinders this week. What usually goes down in these meetings is this : We meet with all of Ians therapist, teachers, director, even the nurse. They go through all of Ians goals they have set and tell us which ones he has met and which ones still need work. They tell us at what age equivalency he is at in occupational, speech, and at a physical level. I never leave in a good mood from these. Its hard to look at a piece of paper that tells you "Ian is at a 11 month old level" or "Ian is 48 percent behind". I hate it I hate it I hate it. I would be more than glad to never go to one of those things again! It just makes me super sad! I usually get a little choked up and get a big knot in my throat at some point and I quit listening to what everyone is saying and I just focus on not getting emotional and getting myself together. Having a child is hard...having a child who is "different" "special" whatever you want to call it is REALLY HARD! I dont even have a way to label it. I cant quickly explain to a stranger my 2 year old look and acts like a 1 year old and I dont really know why. When strangers say "oh he is so cute. How old is he?" and I say "He is 2" then I get a look of confusion from the stranger and I have to go through this whole explanation of "He is small for his age and developmentally delayed" and basically tell his whole life story.... then they look at me like Im pitiful. UGH! Sometimes I think he is autistic, sometimes I thinks he has a sensory disorder, but most of the time I REALLY DONT KNOW. What I would really love at this point in our journey is to have a name for whats going on with him. If your confused reading this and thinking "I thought Ian had Chiari 1 and tethered cord and thats whats wrong". He does! BUT his doctors dont think that this diagnosis is whats causing ALL the delays....it MIGHT be causing the walking delay but the talking and the other motor skills they cannot explain. Ian had a genetic test done last year. I was so sure he had some sort of genetic disorder. To my surprise it came back normal....well mostly. They ran it 25 times. 24 of those times it was normal one of those times the DNA was switched up a little. They considered it a fluke and dismissed that one time. 

    

     Ian had a hearing screen done this week and he failed it....again. So we will be going back to the ENT this month and see whats up with that ( that would explain the speech delay)  He had tubes put in last spring and I could really tell he could hear better after that. He doesnt SEEM to be hearing impaired but who knows. When I worked at the hospital and did hearing screens on the newborns they failed all the time and 99.9% of the time it meant nothing. Ok Im exhausted. Thanks for reading :)