So I have some very exciting news to share with you all! A has gained weight. Yes, you read that right. We have been really struggling with A to gain weight for an eternity. To be exact, about two years he has hovered around 23-25 pounds. It has been very frustrating for me to say the least as I was getting as many calories into him as I could. I have been working SO hard to do the blended diet with him since his gj tube was changed to a g tube last February when he had his fundoplication.
On October 22nd A’s dietician had come to weigh him. He had gained about two pounds since we saw her on October 8th. This was VERY odd to me because Ashton had been sick and was on just formula for the whole week prior to her coming here. As well, instead of the usual 1700calories per day he was getting on blended, he was only getting about 1200calories per day. This seemed VERY odd to both of us. So I agreed to continue with just formula until she came this past Thursday. Low and behold, he gained TWO more pounds! So my little man is now 28lbs!!!! We are not really too sure what to make of this but I am continuing as we are now to see what he will weigh when she comes on November 19th. I told her that if we EVER hit 30lbs I am going to have a huge party! A was 28lbs at one point last August from her notes, however it was one of those times where we didn’t really believe it.
A few thoughts go through my head about this. It seems that obviously A’s body does not use the blended food probably to do what it needs to do. Problems with digestion. Not absorbing properly. Who knows. I feel kind of bad because for so long we have been doing the BD and now I know that obviously he wasn’t getting what he really needed on a day to day basis. I feel like this past 21 months of doing BD and working so hard has been a waste. It sucks when you think you are doing something wonderful for your child and then it doesn’t work out. I really really wanted this BD to be successful because I really don’t like the idea of A eating out of a can every single day of his life. I guess I am just going to have to do what works and what is best for him though right now.
J said to me the other night that he could tell A was gaining weight. And when I really looked, I can tell too. You can’t see his ribs anymore like you used to. Makes this eating out of a can seem worth it!
An update now on Auntie A. She is still in Toronto at the hospital. It will be two weeks tomorrow that she had her LVAD placed. I have not been down there to see her since October 27th when I took J down to see Metallica. When I saw her that night, she was in a lot of pain and really tired. It was really hard to see her like that. However that was expected as she was only two days out of having a MAJOR MAJOR surgery.
I spoke with her last night. First time we have REALLY talked since she has been taken to Toronto. She sounds very shaky when talking and she thinks it is the LVAD because it is always running and it does run at almost 9000 RPM. What a trooper she is. Amazing.
She is pretty scared to come home, as I can only imagine! My brother took her outside yesterday and she said that was really scary. I can’t imagine how she will feel when she does go home. Home is a long way from the hospital in Toronto! It is even scarier for her because the chances of EMS or firefighters even knowing what an LVAD is, is scarce. So if they have to call 911 because they need help, really it probably won’t be of much help. She told me that just down on another floor in the same hospital they had NO idea what an LVAD was.
They practiced yesterday changing the device which is always attached to her. It sounded pretty scary. Basically when you unattach her, the blood flow stops until she is changed to a new one. Then when you start that one up it gives a “bump” feeling in the beginning when it starts up. There is so much for her and my brother to learn!
She is not back on the transplant list yet as it has only been two weeks, but I imagine that she will be shortly.
I just can’t believe what one family seems to go through. My brother is very strong and I am so glad that he is such a big support to Auntie A.
Keep up the prayers for them both!!!!
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!
Sorry that it has been so long but things have been very busy around here (what else is new?!) and I have gone over my limit of pictures on my blog so I had to erase some older ones and will be buying some new space for more!
So whats new? Well A is still being A. I am on my way working back into the blended diet as I do not think that any of the foods were causing his issues. He still continues to have episodes of going off colour in the day and being fussy at night. Not sure what is going on at all. I have been chatting with the team at sick kids and I finally got an answer from them YESTERDAY of what the teams thoughts were on the video I had sent. Well she said that they feel it is the same thing he was doing inpatient only with teeth grinding and that mixed with breath holding makes things like this happen.
Well I emailed them back saying that what he is doing is NOTHING like what he was doing before at all. I also told her that I did not want to hear the saying “breath holding EVER again”. What A is doing is NOT breath holding and never has been. The doctors know my feelings on this. She also said they wanted to do botox again in his saliva glands. I am not for that at all either because it did not do anything the first go around. So anyways that is that….
I cannot wait to get this kid a new bed!!! I am getting so frustrated with how he moves so much at night and gets his legs and arms caught in the crib. Half of the reason I think he wakes up at night is because of this so in a month this little man is going to have a big boy bed!!
And now for some tear jerking exciting news! The other day his EI worker was here to play/work with him. At the end of every session she colours a picture with him. She gets the paper ready and then will hold up two markers and make him choose what one he wants. Then she will put it in his hand and hold his wrist while he moves it around. Normally he isn’t even paying attention to the colouring at all and is trying to pull the marker back to put it in his mouth. Well this time he coloured ALL BY HIMSELF! She wasn’t even holding his hand AT ALL! I grabbed my camera and snapped some pictures and then I grabbed the video camera and taped him. He is SO amazing!
Well things around here are getting pretty busy/crazy. We have so many exciting things going on I thought I would update today. Well first, I am excited that I got my blender last week for A’s food. He is not on any formula now during the day but just blended REAL food! The past two days have been kind of off for him so I don’t really know if it is the food or him not feeling the greatest. I am thinking it is the oatmeal in the food so I am taking that out today and see how it goes. He has been having a lot of blue episodes and just not acting himself. He is fine in the morning, has great naps and then wakes up and is just very upset with tears and all. I cannot tell what is bothering him, but something sure is.
Now these next two pictures are hilarious. I was feeding him his food which I do in 50ml intervals and I only have small 10ml syringes left. So I am pushing in the food and the syringe flies off and it sprayed all over him and everything around. I must have laughed for like ten minutes straight. His face was initially priceless and once I laughed he started.
Now for exciting news, we FINALLY got his pony!!!! He does SO SO SO much better than when we trialed it last August! Yes, it took almost ONE friggin year to get! I cannot wait until we move and he has tons of space to move around!!!