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 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.
So today is the day that A would have been 2 years old had he of waited until his due date. I still can’t believe how many people ask me if we use his “real” birthday or the birthday he should have had. I mean what sense would it be to celebrate his birthday on a day that means nothing now?
It’s funny too about this whole actual age and corrected age. In the past people would ask how old he was and I would say “well he is 5 months old or 1 month corrected…or he is one but 8 months corrected.” But now that just seems to be a thing of the past. The corrected age doesn’t mean anything to me anymore. I know that the doctors still use it but I don’t see the sense.
Today isn’t a great day though. A is still pretty sick, has the fever now and will be going to the doctors tomorrow. Physio was here this morning with OT but he didn’t do very well. A lot of blue spells and crankiness. Nutritionist was here as well. He has actually lost a full pound!
Now some reminiscing…
My journal entry from October 1st 2005:
Well sweetheart today was the day that you were supposed to come! You are 16 weeks old now or full term. And you are still so tiny.
I am exhausted and really need to sleep. I must have been last night too because I didn’t even write about your upper GI yesterday! It went good and you handled it well. This is good because I was up all night worrying about it because Danielle said she thought you would misbehave. But you didn’t! So the results show that you have severe reflux and I am not sure yet what they are going to do for you. There is some talk of a stomach tube to feed you but Marg told me that it won’t stop your reflux so we will have to wait and see.
Today went good for daddy and I. We got our new apartment and we both love it! It is really nice and I can’t wait to move all of our stuff in tomorrow. I am really excited though because we finally get to do your room!
Janice was on with you again today and you were doing well every time that I called to check on you. I miss you and can’t wait to see you to give you kisses! I love you sweetie. You will have a good night because Kris is on with you. Makes me more comfortable too knowing that you have great nursing while I am here in Guelph! Oh and you were 1989 grams tonight!
And from October 1st 2006:
Well this morning we drove daddy to work and then came back here and you had a nap. I had to wake you up at 10am to get you ready for your music class. You actually were really good there today for the first time. Both of the other times you were tired and fussy. You were full of smiles. Then grandma came and picked us up at 1:15pm and then we went and got grandpa from work. We were in Hamilton for 2:30pm for the meeting. It actually went really well. Dr. Meeny did admit that he believes that the domperidone had something to do with your problems but went on to say that he believes there is something else as well. He was very impressed with me and my knowledge of everything. He was also impressed about how supportive grandma and grandpa are. Dr. Sant’Anna is going to book you for a swallow study and a ph probe study to see how bad your reflux is. If it is better then we are going to change your gj tube to a g tube. And then we can work on more oral feeding and hopefully get you off the tube altogether. I am just really nervous about you having spells again. But maybe since you are older and your reflux is much better with the prevacid you won’t have a problem. She did also talk about the surgery as well. It is called a fundoplacation. She said normally the g tube is done with that to help the reflux even more. Dr. Mesterman is going to step back now since you aren’t on medication and just let Dr. Rosenbaum deal with that. She said that it is basically the same stuff that they deal with. So we’ll see how things go with him next week. She also was discussing your CP and her along with Dr. Meeny aren’t comfortable saying that it is CP. So that is frustrating. Hopefully Dr. Rosenbaum gives us some better answers when we go next Wednesday. We went upstairs afterwards and saw Rosemarie. She hasn’t seen you since you left. She couldn’t believe how big you were and how good you look. It is nice to see people that we haven’t seen in so long that were so great with you.
Oh it is so funny to look back at some days…..just shows me how much I have learned even in this past year. Not cerebral palsy? Domperidone? Fundoplication?
I love you little man.
So we had a great time the other night at the stag and doe in Stratford. We went over to J’s cousins place when we got there to have a couple of drinks before heading out for the night. Here are some pics that I took…
Aunt K…don’t ask!
We got back to Guelph yesterday afternoon about 3pm. A was awake sitting in the middle of grandma and grandpa’s floor in his bouncy chair as everyone worked around him. (They are redoing their great room.) He wasn’t up for long before he went down for a HUGE nap! He didn’t get up until 11am for them either!! We all had dinner together before we headed home to get some much needed sleep. Well for my much needed sleep!
Today was a crazy day around here. Grandma was here for 10am, Liz and Monica were here at 1pm and Dawn was here for 2pm. A is back to gaining good weight and is now 22lbs 5oz. Monica did a little bit of work with him and I told her today my frustrations with people coming here that are supposed to work with him that don’t. I just feel that it is a waste of my time and A’s for them to come and do a couple silly little things with him. Therapy is to work the child and help them strengthen muscles. The work that my mom and I do with A is MUCH more valuable to him than what she gets paid to do. So I am hoping that next time she is going to step up or of course I am just not going to have her come anymore.
Here are some great shots that I took of A today. I LOVE LOVE LOVE the first one!
Well the last couple of days around here have been pretty quiet for a change. His dietitian and OT were here on Tuesday. Liz, his dietitian wants his feed up a little bit because he didn’t really gain any weight in three weeks. Seems kind of strange to me since he hasn’t been vomiting now for 11 days! He is now an even 22 pounds. OT did some work with him, but if she doesn’t step it up soon I will be asking for a new one. I don’t have them come here to chat with me and make friends and I feel like that with her. She doesn’t do much work with him at all because she is always too interested in just talking. So when she was here the other day I stayed out of the living room and talked to my mom so that she would have to do SOME work with him. Even Liz said to A that Monica(OT)wasn’t working him very hard and she said that she leaves that for Monique to do. Monique is his PT. This is not the way that it is supposed to work though at all. They both need to work hard with him considering that I only get them every two weeks!
So A has still been doing great with his sleeping. Yesterday morning was another 11am for him and today was 9am. Joyce was here last night and this morning said that he wasn’t like he was the last night she was here (where he slept RIGHT through) but definitely better. His naps the past few days have also been great. Tuesday was 3pm-6:15pm and then I woke him up. And yesterday was 3pm-5pm. This is wonderful for A!
Daddy and I took him out the other night to try and find a bike trailer. Of course no luck again. He would be fine in the one we tried the other night if he didn’t have to wear a helmet but he needs to so it is tough to find one. However, yesterday on the Internet I was looking through them all and I found one that has a reclining back with a hole for where the back of the helmet would be! So I am excited to go and look at this one and see if it will work. Maybe tonight if daddy is home soon enough for us to go and see it.
Anyhow, some pictures of my little man from the other night and last night with Joyce.
Look at how serious he is! He LOVES books now and you can tell that he is really thinking…so cute!
Today was a great day around here. A didn’t get up until 9am so that was a nice treat for me. He also slept pretty good last night which was also a nice treat. I don’t want to jinx it so I am not going to say too much about it!
He had occupational therapy today but he had just woken up so wasn’t really in the mood to work with her. Deb, his AVT ended up calling to cancel because she didn’t want to drive from Kitchener in the weather so we only ended up with the one appointment.
For some reason lately I have been really tired around dinner time. It was very hard for me to even keep my eyes open tonight. Maybe all of this sleeping in is making me feel like crap. LOL
You know, I also wanted to say how sick and tired I am of people in this world that just have no respect for anyone. I talk to many moms of preemies/special needs kids and it is the same thing for all of us. Why do people think that it is a bad thing to have a child with special needs? My favorite one has to be “punishment”. Are you kidding me?!? A isn’t punishment to me in any way, shape or form. He is perfect in my eyes. There is not one single thing that I would change about him at all. He has taught me so much in life and given to me what I would have never got with a “normal” child. Everything happens for a reason and I could come up with a whole bunch that could explain A being born at 24 weeks. And as everyone knows, having him early wasn’t really a huge shock to me. I knew for weeks before he came that he was going to be early. The night before I had him I read a little booklet on preterm labor!
What I think is “punishment” is the people that think this way having children of their own. I feel so sorry for those kids. They will have to grow up in an environment that isn’t healthy in ANY way. This is why it is so sad to me that some people cannot have children and they would be wonderful parents; loving, kind. Then when you look around in this world there are so many people that just should NOT have kids.
Why do people feel sorry for special needs kids and the parents? There is no reason to feel sorry for them. They are people just like everyone else. When you raise a special needs child the same way you would raise any other child they don’t even know the difference. I remember talking to one mom who has a daughter with athetoid cp. The little girl can’t talk, walk or do anything for herself. Yet her mom said to me “Shannon, she doesn’t even know that she is disabled!” I have to admit that I was a little thrown by this at first but after seeing watching her daughter for a bit I just saw a pretty, happy little girl.
You know, there is a saying that everyone learns growing up. “If you can’t say anything nice then don’t say anything at all.” Some of us still need to learn what this is and take the advice!
Anyways all in all I am just saying that having a child with needs is not a bad thing. And anyone who knows A (actually I don’t even think you need to know him, you just have to look at his pictures) knows how happy he is. He knows that he is loved and I am so lucky to be able to call him my son!
Anyhow I am off to bed. Here is just one adorable picture of my little man and daddy!
Well I have received a few emails wondering if everything is okay and I just wanted to say yes! I was unable to use my Internet for a couple of days but I am all hooked up now! I had just over 100 emails and of course have missed writing in my blog daily.
So this week has been pretty boring anyhow. I still am not feeling the greatest. I went to the walk in clinic on Monday because of my ear and sure enough it was infected. I was started on antibiotics but have to say that I still cannot hear out of my ear and it still is irritating!
A is doing good. He has not caught my cold or anything! Thank God for hand sanitizer! He had his therapy with Monica (OT) on Tuesday and she is very happy with him. Being relatively new to A it is nice to hear considering she is just getting to know him. I was supposed to go to a parent group for children with special needs with my friend Vickie that night as well but we both weren’t feeling good enough to go.
Yesterday A had his teacher from the deaf school (Valerie) and I was irritated to no end! I don’t really know what it is with her, but I just can feel my blood boiling when she is here. I think I really need to look into putting it on hold with her until A is closer to getting into school. He also had Deb (AVT) come over in the afternoon to work with him. She was very pleased to see how much more interactive A is with his toys. He gets very excited lately with toys and really wants to play like a normal baby!
I also talked to her about him hearing certain things now. If you clap loud enough he will look and certain sounds I do he will look as well. She said it is learned behaviour and that he recognizes those sounds now. This will help when he gets his implant because he will at least have some sense of what sound is.
We also did a testing scale for A because of what I was told at his appointment last week with the specialists in London. The doctor was pretty much dead on. A has all of the requirements in the 1-4 month range and a few in the 4-6 month range. Definitely opened my eyes to where he “should” be and where he is. We have to take into account his hearing/seeing obviously so hopefully once he gets his implant we will be able to see all of the 4-6 month boxes checked and higher.
So something new this week with A is his vomiting. He never used to vomit unless he was sick and it seems to be a daily occurrence now. It isn’t formula, but instead is thick/white mucus or bile. It is a bit concerning to me because of how often he is doing it and how much there is when he does. During the night I also hear him dry heaving a lot and gagging during the day for no apparent reason. In a book that I am reading I read that vomiting excess mucus can be the body’s way of getting rid of something harmful. It then goes on to say that the body is made to receive a diversified diet and that there is something called the “rotation diet”. It requires to use four different formulas and change them everyday from 1-4 and then continue. Interesting to read about since I have never heard such a thing. But if you think about it, it really makes sense. A has been on this enfamil now for 14 months. The first six months he was on breast milk. That is a long time to be on one formula that is concentrated to 30cals as well. So when I see his dietitian this week I will talk to her and see what she thinks.
Well tonight we went to the Storm game because they were playing the rival team London. Those are always great games to go to. Storm lost in overtime.
Today I was up at 8am when Joyce left. A was still in bed asleep so I tried to lay down again but just couldn’t go back to sleep. So I got up and did some dishes, made coffee and read yesterdays paper. It is always nice to have that little bit of time in the morning to myself to relax. A got up just before 9am and as usual was the happy little boy that he is every morning. I’ll tell you, there is nothing like going to get him out of bed in the morning and seeing that smile! He makes my day every single morning!
At 10am he had a visit from his OT. Her name in Monica and this was only the second time that she has been here. Hopefully she will be around for a while. I always find it frustrating when you just get to know one and they get to know A and then they leave to go somewhere else. So anyhow, she was very happy with what A was doing and cannot get over how tolerant he is with everything! (You can basically do anything with him and he doesn’t care!) We talked a lot more than she worked with him because there was a lot of things to go over. She got a call from about his stroller and there were a few minor problems with the funding from ADP but hopefully she will get them fixed. So hopefully we will have it soon!
Monica also couldn’t believe how “sane”, “calm” and “realistic” I am. She said most of the parents that she sees are very stressed out and don’t know how to deal with a lot of things going on. I had to laugh because this isn’t the first time that I have heard these comments. I gave her the short version of how I knew I was going to have the baby early, how I have dealt with all of his issues and continue to fight for him. She told me that she definitely thinks that I have A for a reason and that I am an amazing mom. Always nice to hear that!
I think I have been able to deal with things so well with A because I am very realistic about things that have happened with him and how he is progressing. I will never give up hope that he will do certain things, but at the same time I know by what he does now that he probably won’t do many things that “normal” children do. I believe that a lot of parents have almost too much hope for their children with special needs and then when they don’t accomplish what they thought they would it becomes disappointing.
A few pictures from last night with daddy…