I have been seriously slacking on this blog! Things have still been pretty busy since the wedding and getting the house. A has been doing great since coming home!!! I am now back into working up on his blended diet and so far he is doing great. We really need to try and get some weight on him as his dietician is a little bit concerned. A year ago A weighed 24.7lbs and right now he is 24lbs right on. For some reason he is just not gaining weight and it is beginning to be noticeable. I have added in some flax oil which is great and sausage for his breakfast which is a nice 130calories for a small piece! I was very excited about a week ago when I found a soy nut butter however his body doesn’t seem to agree with it. His last feed of the day ends at about 7:30pm and at 10pm his belly still had way too much food. I cut out the nut butter two days ago and last night his belly was fine. I may try to add it again later but I will wait a little bit. I was hoping he would be okay with it as it is 140cals per tablespoon!
He has been doing wonderful in his therapy and is really enjoying colouring. He insists that he does it on his own however which usually leaves him covered in markers. My independant little man. Physio, well not so great. The last few times when she comes he is NOT happy. Last week he screamed and cried through the entire session and it was actually kind of heartbreaking. I think he is really starting to associate things together. So he knows when he sees his OT and PT that he has to work. As well, when the nurse has come the last two times he goes from being the happy boy he is to the pouty boy who won’t let mommy leave the room. I think he knows that when the nurse comes it is bedtime and boy, this kid does not always want to go to bed! This does make me happy though knowing that this is all part of his great development and understanding!
On another note we were at Mac last week to see my absolute favorite doctor, Rosenbaum. He is growth and development and this man is amazing. He absolutely adores the kiddos that he sees and takes great interest in their lives along with worrying about the parents.
I finally got up the nerve to ask him about the domperidone issue that A had in the NICU. He told me that he was going to talk to two of his friends who are also docs to see what they thought and to see if they would have any info for me. Well he sure does follow up quickly as two days later I had a response. We may be onto something here!
Well we are still a pretty sick household here! A is on day 11 and mommy is on day 6. I never understand how we get sick because I am constantly washing my hands and using sanitizer. But it just goes to show that you can’t kill every germ that comes your way!
I had to post these next two pictures because they are just way too cute! Now anyone that knows us, knows that the dogs are NOT allowed on the furniture. They are very good about not getting up but lately Cujo has been doing some sneaking. I have come home a couple of times to find hair on A’s blanket. Well the other day I came in and he was sound asleep so I had to grab the camera…
Yesterday A had his two year check up with growth and development. The doctor that he sees is absolutely awesome and I always am happy to go and happy when I leave. He was very happy with A and the progress that he has had since he last saw him six months ago. Of course, six months ago he didn’t have his cochlear implant and that has brought him so much further.
The first thing that he always says is “so….brag about A.” I have gotten good but I admit the first time that I met him and he asked me I started crying.
I admire this doctor because he is honest and to the point. I was asking him his thoughts on ABR therapy and hyperbarics and he said “if it sounds too good to be true, than it probably is.” I am always looking for ways to improve A’s life and have done tons and tons of research into many different things that I would like to maybe try. However it is hard when some of these things are huge amounts of money and there is no guarantee that it will benefit him.
The power wheelchair was brought up again and it looks like he really will be going into one next year. I will be calling kidsability to get A into the seating clinic for this as well as trying to find him a suitable seating device for in the home. I am having a heck of a time with him now that he is older and wants to go, go, go. The only place here that he sits properly is his swing, however he is getting to the point where he is almost too big for it. With hip and spine issues with kids that have CP I have to worry about his posture constantly.
I told him that I really worry about the future and what A will be like. I always wonder if he is going to be the kid with CP but totally there and right on target with his friends or if he is going to be the kid with CP that is 15 but at a much lower age level. I know that he can’t tell me but I admit that is one of the things that I think about all of the time. That is the one thing that really sucks about cerebral palsy. The waiting game….
All in all it was a great appointment. I had a call the other day from his secretary to remind me about the appointment and to add more time because we would have to do the Bailey’s test. I was not impressed. I think that these tests to see where your child is developmentally are just crazy to do for a child that has cerebral palsy and is deaf. At the end of the appointment with him he said he would see us next year. I asked about the Bailey test and he said “nope, you are not doing it.” Right on!
We headed up to the NICU to see if one of A’s nurses was on, but of course no luck again. We haven’t seen her in a year! If you are reading this Marg, we try and see you all the time and miss you! We did get to see Joyce although A was upset with her for leaving him. hahaha
We really miss having Joyce around. She is absolutely amazing and one of the most caring, loving nurses that I know.
And now for my little man. As you can see the sickness doesn’t stop this kid from smiling!
Well today was our trip to Mac to meet with A’s growth and development doctor, Rosenbaum. The last time that we saw him was in October. It wasn’t as in depth as the last two seemed but that is obviously because they know his history now and are just following him as he gets older and progresses.
A was being his normal happy self. Smiling and cooing like crazy at this doctor. He was very happy with how social A is and how he interacts in general. When I mentioned his eyes (because he didn’t have glasses the last time) he was kind of shocked at him being a -7 in each eye. He said that he is a -9 and he is basically blind without his glasses. I think it is always hard for me to imagine what it is like for A because I don’t wear glasses and can see fine. I do know that within the past two weeks or so when A sees me taking his glasses out of the case in the morning he smiles. Definitely a sort of sign from him that he likes to have them on.
When he asked me to brag about what A does that is always hard for me. I have to stop myself from getting emotional. I love A to death but it is always hard for me to think of how he has changed. With me being around him all of the time it is harder for me to notice the different things that he is doing. When I look back over the past year it is like not much has changed. But yet when you look at it in a big picture there are things. Just not as noticeable as a child that progresses at the “normal” rate.
I told him about A rolling from his tummy to his back, which he was happy to hear. But at the same time that is the easiest way for a baby to roll. I however am ecstatic that he is doing this!
The most difficult and exciting topic was brought up today. He said to me “have you thought much about A getting an electric wheelchair?” WOW I have to admit that I was a little thrown off. (Another moment of holding back the tears for sure) I think what was so much more difficult was because this was the doctor who “refused” to say that A had cerebral palsy. Wanted to just keep an eye on him and see how he progresses.
So in my head I am thinking how A is not even two yet and that would be years and years down the road. Nope…he said he would like to see A getting into one at the age of three, maybe four. For real?! Yes he was for real. I have to admit that I have NEVER even really thought about the whole wheelchair issue. I have known deep down that A would most likely not walk, but thinking of wheelchairs is hard for me.
As for an electric wheelchair, well that would have been the LAST type I would have thought with A. He said they have done studies with kids and it shows how much more they open up with being able to manipulate what they are doing on their own. How much it opens up their worlds. He said it is something that even *I* would notice with A. His behaviour and attitude. But three, four years old? I didn’t know that was possible. He believes that A is brighter than we think he is and that he would be one of the “ones” that could use an electric wheelchair. Can you imagine my little man in a motorized wheelchair at the age of three/four?! His world will be so much bigger than it is now!
So I left this meeting with Dr.Rosenbaum with my dad and A feeling happy and sad. Happy because A is the most amazing kid in the world and sad because once again reality hit me in the head. Don’t get me wrong, I am not sad that A WILL need a wheelchair, it is just always hard to hear docs tell you things that you already know. Makes it “real”.
Anyhow I will end this post with a few pics of my little man last night. I had gone for coffee with my brother because J wanted to finish watching the Leaf game. I told him to put A to bed and I wouldn’t be long. I told my brother that I could bet him any amount of money…A would NOT be in bed. I was right! He was sleeping on the floor on his pillow. Too cute!