Well first things first. On Thursday I went out for a bit while grandma was here with A. When I came home she was very excited to tell me that A said TRUCK twice!!! She said she was SO excited and ready to cry hoping I would come in the door that minute. She was playing with a truck and just kept saying it over and over and then boom he said it!
Well last night I was sitting on the couch holding him and he was very focused on me. I kept saying CAR and he was really really watching my mouth. Then he said it!!! Probably about six times in a span of five minutes! J was sitting next to me and it was so amazing to hear him finally say something that you KNOW is purposeful!!!!
And my last bit of excited news, is that A slept in his big boy bed last night for the first time. He was VERY excited when we laid him down at 11:30pm and I didn’t think he would go to sleep but he did. I thought that I was going to cry as this is a HUGE step!!
Look at the head control!!!
Bonnie, his EI was here to help out by blowing bubbles during physio…
Using a joystick switch control for the first time and doing great! Of course it has to be a bubble blower! hahaha
A is his big boy bed for the first night! He looks SO small now!
Think he likes it?!? hahaha
Night night buddy!
And this morning I heard him moving around so I went in there with my camera and he was starring at the wall…
And then when he turned and saw me!
Way to go little man, mommy is SOOOOO proud of EVERYTHING that you do! You definitely are my amazing little man!
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!
And no, this scare wasn’t A this time. Grandma was here today and I was running out for a little bit to get something off of my dad at work. I took their truck and got two minutes down the road. I was turning right at a light but was stopped as the car in front of me was waiting to turn after someone crossed. I happened to look to my left and there was a car coming straight for me. His arms were straight on the wheel and he was doing about 70 coming straight for my side. Within seconds I stepped on the gas and turned the wheel to the left a bit and moved up. I held my wheel tight as I thought for sure that he was going to take the back end off. I knew there was a lady walking with her baby coming from behind and I looked back and he ended up missing me by an inch, swung hard to the left, went up over the curb and missed her and the baby by an inch! He came to a dead stop on the other side of me between a house and a pole. This happened SO fast. I was so close to death I could taste it. I kinda paused and watched him. He got out of the car, looked at it and got back in. Didn’t even say anything to the poor lady! When she walked up by me I asked if she was okay and she just shook her head. The guy put his blinker on and it kinda freaked me out so I left. I got about two minutes down the road and it hit me. I had to pull over and call my mom collect from a payphone. All I kept thinking was “Oh my god, how am I still alive? A almost didn’t have a mommy.” It was SO scary. There was definitely someone watching over me because honestly there should be NO way that I am still here.
To make things a little more freaky, I just finished reading a book last night called “Suzannes Diary For Nicholaus.” Anyone that has read this knows why today freaked me even more. I started the book Sunday night and finished it last night. Two days and then this. I think I was meant to read it considering I had it here for over a year and hadn’t touched it.
Now for some GREAT news. So A has rolled over twice which I had posted before. Well yesterday I was in the kitchen grabbing his med and came into the room and he was on his belly! About ten minutes later daddy was sitting in here with him and I heard him say “good boy!” Well turns out he missed it because he was watching a show. I grabbed the video camera and started to tape him. And I got it on video!!!! I still haven’t really looked how to download onto the computer but I could watch it over and over and over!!!!
This is how I found A the other morning in his bed…
Hanging in bed with daddy…
Okay now these are exciting! His physiotherapist lays him down on his belly and brings him up so he is on his knees. She supports his head and then puts pressure down on his hands. When she lets go of his head he normally cannot hold it up at all because of the angle that he is on. Well look at my little man!!
Such an amazing kid!!!!
Well first I want to start this post off by saying that A has been wonderful since Saturday evening!!!!! He went for a nap on Saturday and when he woke up it was like he was back to himself!!! I didn’t even realize until about 10pm that he was not whining, not crying, not fussing! I can’t really say WHY things happened like this but I am sure not complaining.
I think it may have to do with me lowering his calories and doing the 10-8am feed and slow feeds in the day. He was always on 30cal/oz and I put him up to 37cal/oz when we came home. However I did talk to a few other moms that said their kids took a while to get up that high so I went down to 33cal/oz. The only thing that stinks is that he is on feeds throughout the entire night but I guess we have to do what works for him best!
Since Saturday night he has also not required oxygen at all and sits above 93. Of course he still has his ton of desats but at least he isn’t requiring the oxygen to stay above 90. I can’t explain this either but it is great. I had put him to bed Saturday night with the nasal prongs on, hooked him up to the monitor (no oxygen on yet) and he was at 97. I decided to leave him off the oxygen for a bit and for almost an hour he didn’t drop below 88 so I left him off it. And it has been that way since.
I do think there are going to be times that he requires oxygen but I am just so happy that it isn’t something that he needs every single night.
Physio and OT came on Monday and he did great. I really wasn’t thinking that it would work out anymore because of how he has been but it was nice to see him doing things that I haven’t seen him do in a while. He has been put on the waiting list for the seating clinic so that we can work with them to get him into a wheelchair probably within the next year.
It is so nice to see my little man back to the way I remember him. It has been a while. He isn’t without the gagging, odd vomit or blue spell but he is HAPPY and that is what matters to me the most!!!
Now for some long overdue pics of my little man!!
Yesterday we were back to our regular busy schedule around here. A had his dietitian come along with his OT and PT. His PT Monique was here first so she started to do some work with him but he was NOT happy. Shelley then showed up (OT) and he was just getting way too upset for me to let them continue. He was going very off colour and I was worried that he was going to go into one of his spells. Liz showed up so we got A naked (his fav!) to get his weight. Well after about 15 minutes on the scale we could NOT get a weight on him. He was way too excited and just wouldn’t sit still long enough for it to read his weight. So by watching it and guessing he is the same as he was a month ago. Fine with me!
He then went back to trying his work with PT and OT. He did great!!!! Look at my amazing guy!
It was great too because daddy was here and was helping them while I talked to his dietitian. He never gets to see what A does and how great he is for them. He was actually doing VERY well at being on his knees and hands (with three peoples hands of course!) Monique is always so amazed with him and told us yesterday that she does not know very many kids that have such severe CP but yet are able to open their fingers and hands to grasp things. That’s my boy!
Daddy and I had some running around to do yesterday and then we headed over to see Sean and his mom Mary. She brought out Sean’s first wheelchair and it is SO cute!!
So after seeing how well A sits in it Mary said that she is going to get some new tires for it and that we can borrow it!
Sean absolutely loves seeing A! It is so funny how he worried about everything with A and what he is doing. Mary was holding A but Sean sure didn’t miss a thing! He kept telling her to be careful because of A’s back (the arching) and his implant kept beeping so he would tell her that it wasn’t working. He is a very curious guy and always has lots of questions about A. Like why he goes blue. Why he doesn’t talk. Why he shivers. So cute.
Well another busy week is over! Wednesday A had his PT and OT here together because we finally got him a benik to try. I have been asking about this for a long time but I find that sometimes people really haven’t done the research or learning on things that help kids. Anyways, his new OT happened to have one at home when I brought it up again last week so she brought it over. I wasn’t really able to see what he did for them with it on because his dietitian was here so we were chatting while they did his physio. However I did definitely notice some more stabilization of his trunk when I put it on him that afternoon. The only problem is, this kid is the hottest, sweatiest kid EVER that it just makes it ten times worse. He weighed in at 24lbs 7oz so up three ounces which is fine with me. I am so past the gain and gain idea because I have realized that if the child LOOKS healthy then they most likely are getting enough nutrition.
Here he was on the scale. Kind of funny that he was so happy as usually he goes very stiff and starts to scream. It took about five minutes before we were finally able to get his weight as he wouldn’t stop moving he was so excited!
So here he was sitting in his chair with the benik vest on underneath his shirt. He loves this slinky and anyone who knows A knows that holding this with BOTH hands is a HUGE accomplishment! Go A!
Thursday grandma and I headed to Kitchener with A to go to Toys R Us. That store is SO overwhelming! I did find a few things for A and I am so excited for Christmas to come! This will be his first Christmas here at home and I am looking really forward to it!
Friday I took A to his ped to get the other half of his flu shot. He didn’t like it too much but he is a tough little guy so he got over it quick. I was speaking a bit more with his doctor about the spell A had a few weeks ago (he was the one that came to the ER and told me he thought it was a seizure) and anyhow he said that the more he thinks about it the more he doesn’t think it is. This was after I told him about the echo last week and how A’s sats were so bad after only a whiff of nitrous. Ugh talk about being thrown in all directions! I have some telling me seizures (funny though because THREE neurologists that have said YES this was a seizure have all said DIFFERENT types) and some tell me airway and some say reflux and some say they don’t know. Where is my Doctor House?!?! LOL
This is what I am greeted to every single morning when my little man wakes up…
Today we had a pretty lazy day. A didn’t get up until 10am and then by 11:30am he was fussing to go back to sleep. I however kept him busy and up until about 1pm and he slept until about 3:00pm. His naps lately have been AWESOME! Although yesterday he skipped his nap for the day and that is probably why he got up so late today.
HE ALSO SAID ‘DADA’ AGAIN TODAY!
Daddy got home about 4pm and we got ready to head out for the annual Christmas gathering that we go to with my parents and their friends. Uncle S, Auntie A, Aunt Shorty and Rob all came this year too though which was a first.
I had a “moment” tonight there. Funny how things creep up on you when you least expect. There was a girl there that had two kids. I can’t remember how old the oldest is but I would guess about 18months. The little boy was a new addition and as I walked by to the kitchen I stopped and asked how old he was. The answer I got “he is 5 months old….he was a preemie though.” So of course I am curious and say “oh really how early?” And then she says “five or six weeks…I can’t remember. He weighed 5lbs 2oz and spent two weeks in the hospital and it was so hard on me. It is all such a blur to me now but I was exhausted. He has to have a surgery too for a hernia.” So I of course am blown away because of the fact that she is going on and on about this when she KNOWS my story. I eventually stepped away and when I saw my mom I started to cry. I went into the bedroom and I was just angry. Now I TOTALLY understand that for ANY mom who has a child early and spends ANY time in the hospital this would be a big deal. But when you are telling this to a mother that you KNOW spent nine months in the hospital with her baby that weighed under two pounds it gets to me. And when you know that her child has severe disabilities…when you know her child is deaf…when you know her child doesn’t eat by mouth. I just don’t get it. Do people not see past themselves?! These people really need to realize just how lucky they are. How their situation might have sucked in the beginning but really in the big picture it is so tiny. Anyways I don’t want to go on and on about it but I know that most of you who read my blog understand this.
Here is my little man holding his bells! (By the way, I would say about three months ago he couldn’t even come close to holding this!) He is funny now too, because when he sees you going to give him something he opens his thumb up…its really cute.
Well it has been a crazy few days here! I haven’t blogged in a while so I have a bit to update on. First, still no luck yet with getting A covered for RSV season this year. I have a couple of calls to make today that will hopefully get me somewhere.
Thursday night was a nightmare here as A once again had a pretty rough night. I am not too sure what is wrong with him when he does this, but he is VERY fussy and just not comfortable. I really can’t wait for this sleep study! I think he might have had an upset tummy because his tube site was bleeding and Thursday night before going to bed he had been vomiting a lot of formula. At one point it looked like a whole entire can. I diluted his feed for about 24hours when he was acting better and had not been vomiting. But thankfully it never turned into anything more and he is fine!
Saturday grandma and grandpa S came down to spend the weekend. They got here just after noon and we headed over to Uncle S and Andrea’s house for their housewarming. A was pretty tired but had a hard time sleeping as there was way too much going on.
After leaving there we all headed over to grandma and grandpa C’s for dinner. We had our “wedding talk” and have some plans in place. Now I just need to get my butt in gear and start making deposits and reservations! I can’t believe how fast time is going and cannot wait until the day that I get to walk down the aisle!
Sunday, A went to the Storm game with daddy and grandpa and grandma S and I headed to Kitchener to the wedding show. I was glad that I went because I found an awesome photographer, a fabulous cake decorator and even got some great ideas for things that I want to do!
At the game…
We got back around dinner time and then we all headed out to eat at Shoeless Joe’s. Grandpa and grandma S then headed back home and we came home to head to bed. A had other plans last night and decided he wanted to stay up until 11pm! I am happy to say that I only got up ONCE with him last night and I actually had to wake him up this morning for physio and OT.
I couldn’t resist these pictures before waking him up!
So we started the breathing treatments with the nebulizer for A on Friday night and they are going well. The first time that he had one he was pouting and didn’t know what to think. This morning he actually didn’t need me to sit and hold it for him and he just watched the TV. I can’t say that I really notice a difference with the treatments yet compared to the puffers, but I do know that he is getting more of the meds this way than the other.
This morning A had Monique and Shelly here to work with him and he did VERY well!! Check out these amazing pictures!
After physio and OT A had his nutritionist here along with his speech therapist. Yes it has been a crazy house already and we still have his auditory speech therapist this afternoon!
Anyways, A now weighs a whopping 24lbs 1oz!!! That means he has gained 22 pounds and 8 ounces since he was born! That also means he went from 710 grams to 10,931.58 grams! WOW! She also measured him today and he is 80cm which is 31.5 inches. At birth he was 10.5 inches or 26.67 cms!
His speech therapist David and I decided we are going to wait on the feeding study to decide when he will be coming back.