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.
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.
Well it has been a very busy week around here, but to start here are the pictures from A’s playdate with Olivia & Avery.
Monday A had physio which he did very well at. Monique is always amazed with his attitude and ability to do things. This summer A has made great progress with a lot of what he is doing and is able to do. Things aren’t always noticeable to me, but when I look back on videos and pictures the change in him is just incredible! I am so proud of his determination to do things and his incredible attitude with WANTING to do things. This is only going to help in in life progress more than many thought that he would.
He also had auditory verbal therapy on Monday with Deb, and she hasn’t seen him in at least three weeks. She was amazed at his progress with his hearing and was VERY happy to say the least. I think that he has gone further with that already than thought before the implant. Last night I was holding him saying “where is daddy?” and he looked over at J twice! I don’t know if it was a coincidence or what but it was WAY too exciting either way.
Tuesday Shelly came over to play with A so that daddy and I could go out on a date. We went and saw Halloween at the movies and it was great! The last movie that we saw together was in August of 2001! And I can probably count on one hand the amount of times that we have had “us” time since A was born.
Wednesday Ashton had Bonnie, his EI here to play with him. She had a really cool toy that spun and had a blue light in it so the string that was going around would light up. I thought for sure that he would LOVE it but he didn’t like it at all. It is a switch toy and right away he was pouting. I told her to try again because I thought with it being new that might just be his problem with it. NOPE he wanted nothing to do with it.
His nurse was supposed to come last night as well but she was sick. I don’t think I have told you all that Ashton has a new nurse. She has been here twice and will be doing once a week. She is very nice and good with him.
Today Ashton had Sandi here from CNIB to work with his vision. Do the appointments ever end?! haha probably not. I have a hard time with her as well because I have never thought that Ashton had issues with his vision. We were all pretty surprised when we found out that he needed glasses and was very close to be considered legally blind. I have a referral in to see Dr.Wiggins in Waterloo and I hope that he will be able to help me better understand what Ashton is seeing and so forth.
I have been waiting to hear back from Ashton’s doctors in London about his MRI. They had left a message on Friday that sounded pretty urgent and said they would call me Monday. Never heard a thing. I have left two messages and still nothing. I have also not heard from the respirologist from last week that told me that she would call on Tuesday. SO with tomorrow being Friday I am expecting two important phone calls!
I am happy to report that FINALLY I have an appointment with a neurologist at Toronto Sick Kids. I have been trying to get this referral since October of 2006! My countless phone calls, my attitude and persistance has finally paid off! It is not until December but I am excited to speak to someone new that doesn’t know Ashton.
I have also been really busy with wedding plans! Wow I cannot get over how much work it is and how many decisions need to be made. I wish I had more people around that would help me with what I am doing!
Well it has been a crazy week around here! A’s tube that he had placed in London just does not want to stay in the spot that they marked it and it is driving me crazy! He has had a lot of vomiting of thick mucus and a couple of times he had projectile bile. Really gross stuff and frustrating when I don’t know why. I can only assume that his gut is irritated from having the new tube placed.
Wedding plans! AHHH I feel like I don’t have enough time to do everything and it is still so far away. The date is set and I have three places that I am looking at next week. My mom and I are also going to a bridal show in September so hopefully I will be able to book the DJ and the photographer then. I am SO excited about this day and I can’t believe still that it is going to happen! J and I have also picked out where we would like to go on our honeymoon so that is just one less thing to worry about. This day has to be absolutely perfect and I know with everyone involved that it will be just that!
So A has been impressing me this week with yet something else that is new. He now will sit in his swing and look at his feet! There was also one night that he was actually trying to get them and it was so obvious my the determination in his face! I was almost jumping up and down as this is a HUGE step if he was to start touching his own feet! I couldn’t catch a picture of it, but here he is in the swing…
Monique his physiotherapist was here the other day and she just cannot believe how well he has done over the summer. He is getting so much stronger with pulling his head forward, holding his head up, standing nicely, sitting nicely (supported) and just everything! She also told me that I am in the 1% of parents that she sees that are totally into their kids, advocating for what I believe is right and the knowledge that I have. So that was a very nice comment from her. I guess it just isn’t something that they see all of the time.
So today I took A to meet Darcy Tucker at the Future Shop that just opened here. For those of you who don’t know who he is, he plays for the Toronto Maple Leafs. I had also written him a letter and wasn’t sure that they would take it, but they did. My mom told him that it was a very special letter from Ashton and he smiled and said okay. We stood in line from about 10:45am until 1:30pm to meet him. It was raining when we first arrived but then it cleared up which was good.
Waiting patiently with grandma…
Smiling at grandpa…
Still waiting patiently, but almost there!
The line moved quickly because he was just signing his name…no pictures with him or anything specific being written…
Looking at A…
Signing A’s hockey stick…
Grandma telling him about the letter…
Grandpa getting another stick for me signed…(my letter is under the sunglasses!)
So our holidays are over now. We headed down to C-town on Friday to spend the weekend with grandma and grandpa S. Aunt K also came down to visit with us. It was great weather and A got to go swimming again!
On Saturday morning Aunt K and I went for pedicures. It was my first time ever getting one and it was so nice!!!
A in his pony walker and getting kisses from Cujo…
On the car ride to C-town…
A sitting outside looking as cute as ever!
Hanging out with grandma…
Pony walker time!
Aunt K entertaining him…
A and Rocco…
Being the silly little ham he can be!
A absolutely LOVES bath time and grandma LOVES to give him baths! He had water everywhere and grandma was a little wet too. 🙂 Grandpa helped out on this one too…
A trying to rock his chair…
We got back late on Sunday night and A went right to bed. Yesterday A was back into his regular busy schedule with appointments and workers.
Playtime with Shelly…
Today was also the first time that he had his auditory verbal therapy with Deb again. She had seen him last before his implant surgery and now we are back at it. With having the implant now, we have to sit around the table with him so that we can all take turns making the sounds or singing to A. He wasn’t feeling the greatest but did a great job. He started to run a low grade fever and his vomiting was starting.
Therapy with Deb…
Burn Rubber baby!
Last night was pretty rough for A. He was up vomiting a lot and it is obvious that he just isn’t feeling well. He had physio this morning and pretty much the whole time he had his eyes closed and was fussing. Liz was also here to weigh him and he is 22lbs 9oz, so down one ounce from the last time. This is the second time in a row that he has lost weight. Not too concerning to me though as he looks very healthy. We also measured him and he is 31 inches! That means that he has grown by two inches since last time!! Could also be the reason he isn’t gaining. Not to mention the fact that this little guy is constantly moving around! I cannot get over how active he is during the day now. If he could get up and run he would!
So the implant was turned up to the next program on Sunday. He has done well with it and isn’t jumping when it is turned on. Deb was very pleased to see how well he is doing with turning to sounds already. I cannot get over how much his being able to hear has changed his personality. He pouts a lot now and can even act scared of toys or different things. This was something that he NEVER did before!
At day 16 of hearing age I am very impressed. I was thinking that I wouldn’t notice anything for a long time but I already can. Recognition and imitation is going to take much longer but hey that is okay because all that matters is that my little man can hear now! I am so amazed at what this has done for him!
What a great couple of days it has been around here! Wednesday A had physio and I brought up the Pony to her to see what she would have to say. To my surprise she agreed that A could try it and that it might work for him. She said she loves how I am so into what is good for him and that I want to try things that aren’t even suggested to me. I have my CP mom group and reflux mommies to thank for that!
So Wednesday night daddy and I decided to pull out his exersaucer and try him in it. He has not been in it since Christmas and back then we had to stuff things around him to hold him in and it was just not comfortable. WOW we were shocked how much better he did in it! I am always saying that I never notice much change with him, but this was amazing!!! There was a couple of times that his head would fall back and then he would bounce forward and bang his mouth off the front so daddy decided to use the cushion in front of him. It was definitely a lot of hard work for him!
Now for Thursday! Leanne, the rep that I deal with for A’s equipment came over. She was bringing me the one stander to try again and she had the Pony with her!!! Physio had called her and she was able to grab one for us to try. I was sooo excited! A was just getting up so I got him ready and then we tried him in it. I have to admit that when I saw it right in front of me I wasn’t too sure. There is no place for head support and knowing that A doesn’t have the greatest head control I thought it might have been too much. To our surprise he did great! Leanne said even from what she sees that he did very well. He was even able to move it a few times, but it is going to take much more for him to figure out how and what he is doing. We also found that when we placed our hand behind his head very lightly, that he would push back on it with his head and was then able to move much more efficiently. So Leanne said that she will bring me a headrest and then see how he does then.
Of course when grandma came over to watch A we had to try him in it again!
Grandma and grandpa were here to watch A so that daddy and I could go to the concert we have been waiting for! Uncle S and Andrea came with us too. It was kind of depressing because we ended up completely missing the first two groups (Puddle of Mudd and State of Shock) because there was NO parking anywhere!!! By the time we did park and walk all the way over to the park Chris Daughtry was almost done also. However we did get to see a couple of songs by him.
Then came Nickelback. J and I have seen them once before but they were just as good as last time. They put on an awesome show!
And for the best picture of the night! As we were out around where you buy food and shirts and stuff J said “hey, there’s Lukas!” I was looking around and then saw him. So I hurried over, threw J the camera and asked him if I could get a picture. WOO HOO!
Quick update from today’s appointment at Sick Kids…we saw the ped from there and she was great! Very open to my thoughts and concerns and listened. Some doctors find this task very difficult. Long story short, she is setting up an appointment with respirology, cardiology and neurology. So I guess that is a good start! She also said she would like to do a feeding study. I thought this was an upper GI but she explained the difference and seemed surprised that he has not had one. I also asked for her opinion of fundos and she said it should be an absolute last resort. Thank you, someone that agrees!!!! And a fundo without a feeding study, swallow study and other meds first?!? Anyhow, we are on the same page….that is good enough for me right now.
So the weather around here the past couple of days has just been WAY too hot and humid! I am really not a heat person and I am not looking forward to the summer if the past couple of days are any indication to what lies ahead!
Yesterday A had some physio with Monique and did very well. She is impressed with his head control and his sitting with assistance. It is so difficult for me to really notice the progress so it is nice to hear it from those who don’t see him that often. We talked about doing physio now every week instead of every second week. I am happy with this because I feel that he has needed it once a week for a long time. And Monique is really great with him and works him how he should be worked. She definitely takes her job seriously and I am lucky to have her as his physiotherapist.
After therapy I decided to pack him up and take him to the Special Olympics that were happening in Guelph. Grandma was volunteering so she met us across the street. WOW, I could not believe the amount of people there! I don’t think I was really expecting what I saw happening. It was so great to see all of these kids out there having fun! I felt myself having to hold back tears a few times. Seeing things like this really makes me think about A’s future. It is so hard not knowing what he is going to be capable of in life.
Anyhow, here are some great pictures!
This is Monique and her brother with A. My mom used to work with Monique a few years back and wow has she ever grown!
This is Sean with A. My mom has worked with him for a long time. He is a total sweetheart and from the very first time meeting him he always brings a smile to my face. He has cerebral palsy as well.
This is Mady, another student of my moms. She is eleven years old and has athetoid cerebral palsy, the same type that A is said to have. I met with her mom a while back when I first got A’s diagnosis of cerebral palsy. It was nice to be able to talk to someone who has been through it already.
Mady makes me think a lot about what A will and will not be able to do seeing that she has athetoid cerebral palsy. Her mom said that she used to do what A does now as well and it wasn’t until time went on that they realized how much she wasn’t able to do.
Mady and A playing frisbee!
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!
Well it was another fun day around this house. A didn’t have too bad of a night for how crappy he is feeling but he sure did not wake up happy. I took his temperature this morning and his fever was back. Not too bad, but enough that it was noticeable to me. We cuddled on the couch for a bit because that was all that he wanted to do. I tried to call the ped just before lunch but I couldn’t get through so I thought I would wait and of course it was closed for the afternoon. I will be taking him for sure tomorrow.
Andrea was here for 12pm. She is the new social service worker that will be working with A. He had just gone to sleep at about 11:30am so we just sat and talked. At 12:30pm his physiotherapist came over with Leanne from motion specialties. They brought the one stander for us to try with A! It is the buffalo stander which I wasn’t too keen on but willing to try it out and see how I like it. I guess it will be better for us to compare two standers and then decide anyways which one that we want.
I was so excited to get him in it, but he wasn’t thrilled at all. It was so obvious that he did not feel good to everyone that was here. Anyhow we did get him in it and they got it all set up for me so I just have to put him in it and do all the straps up. The pieces that are beside his head are actually laterals that are supposed to go on each side of him, but his head would sway back and forth too much. If we were to get this stander then there is a custom headrest that would be made for him to go on it.
Leanne and Monique didn’t end up leaving until almost 2pm and A was ready to go to sleep again. I did some laundry and cleaning while Andrea was here. She left at 4pm, wow how times flies!
Oh and on an exciting note before I forget, A took a whole entire bottle of sugar water!!!! That is 90mls!!! I wish he would do this ALL of the time and then we could be on the road to getting rid of the feeding tube! But for some strange reason he ONLY does this when he is not feeling well. I think it is because his mouth gets so dry and he is thirsty. Still this is very exciting for me! It was so nice to sit and have him bottling in my arms….I really miss that.
Daddy actually got home early for a change. It was about 4:30pm. I put A in his stander again and with daddy there he was okay for about three minutes and then wanted out. I even tried bubbles and the fan but to no avail.
We decided to go out to grandma and grandpa’s to BBQ since the weather was so nice. We picked up Aunt Shorty and she came as well. Uncle S was also there so we made burgers for all of us.
A passed out at about 8:30pm and when we went to leave he barely woke up while I dressed him and put him in his car seat. Such a cutie!
Well I feel like things around here are back in order. It seems so crazy for a while after we have been away for a couple of days. A has been doing great and is continuing to roll over. He has been so happy lately and doing so well with his physio and workouts I have him do.
Today was the same old Sunday. Up with A (8:30am woo hoo!), dishes, walk dogs, laundry, formula, playtime. I wish daddy would start getting up to enjoy some of A’s life with me.
So back to our crazy life tomorrow. Monday has never been my favorite day of the week. A has occupational therapy and auditory verbal therapy tomorrow. Grandma usually does Mondays but she won’t be coming until the end of the week this time around.
I am happy to also report that A has been doing well with his change of formula. Tomorrow morning he will be on full nutren junior! I am so excited that I won’t have to sterilize bottles and water anymore! I have been doing the same old routine now for just over a year and it is going to be so strange not having to do it!
Well now for the pictures….
My little man fast asleep in the playpen…
Grandma S, A, Great Aunt Bev and her grandson Liam
Great Aunt Bev’s other grandson Wes joined in….
My smiling boy…
Tonight A and I headed to Waterloo for dinner with Andrea and Uncle S. It was a nice treat to have dinner made for me. Just a few pictures sitting like a big boy on the couch with Uncle S.
Another busy day in this household! A was up at 8am which was fine with me because I was already up. For some reason I just couldn’t stay in bed. Grandma got here just after 9am this morning. She agreed with me that his glasses aren’t really fitting him properly so I took him tonight to get them adjusted a little bit. Just after grandma got here he decided that he was going to be a big boy and lift his head!
I did some laundry and cleaning and then A had physiotherapy with Monique. I talked to her today about trying out the stander that I have been looking at so she is going to be calling them to set up a time to bring one over for us to use for a bit. I am so excited! I hope that it isn’t too long, because then with it going through ADP it can take forever. We still haven’t received the stroller that we ordered in November! I hope we get that soon because he is going to need it for his therapy with Deb once he gets his implant. It would be nice to start doing the therapy in it now just so it isn’t totally new to him.
So he did well with therapy today, as always. Monique can never get over how tolerant and well behaved he is. Always nice to hear!
So as Monique was leaving, my aunt and two cousins came over for a visit. Nicole always loves to see him when she can so it was a nice visit!
Daddy had gone over to a friends house for a couple of hours so I laid down and had a little nap before we had to take A to get his 18 month needles. He did really well with them too. His pediatrician is very happy with A’s growth (although he only weighed 19lbs3oz) because he is getting up there on the growth chart. I also spoke to him about being eligible for RSV next year and he kinda winked and told me that we would figure something out. So that made me happy. I also had to get a note from him today to discontinue oxygen therapy. I have been calling and calling the company to come and pick up all of the tanks that we have here and finally today someone tells me that they won’t/can’t until I have a doctors order! How crazy is that? He has been off of it for almost three months!
Anyhow, after his doctors appointment we took him to have his glasses readjusted and then daddy took him to the fish store. He said that A was just looking around there like crazy! All day today we have definitely noticed that he REALLY can see the world around him! His attention span is so much longer! (He already had a great attention span to begin with!) There is just absolutely no doubt in my mind that these glasses are a great thing for him!
Well Joyce is here tonight and I am off to bed! YAY for sleep!
Today was a busy day for A. Joyce left at 8am and then I had to actually get him out of bed for his physio appointment at 9:45am! Monique hasn’t worked with him in quite a while because of him being sick so much. She was VERY pleased with what he was doing for her today! She could definitely tell the difference with his head control and upper body. He wasn’t in the greatest of moods today for some reason. Not too sure why. I think that his tube site is just bothering him because if you move him a certain way he isn’t too happy. Anyhow, here are two pictures from physio with Monique. This exercise that he is doing in the pictures is one that he was never very good at and didn’t like. What a difference! (He is smiling at grandma…)
So after physio was his auditory verbal therapy with Deb. He did pretty well with her considering that I had to wake him up because he was sleeping and he was pooped out from his physio. Deb was also amazed with him today! It was so great for people to tell me what they notice because I don’t always see the changes. I have however noticed the changes with his head control and the way that he is interacting now. Even with showing him pictures now he smiles or studies them. You can tell when he recognizes someone in the picture.
Deb was happy to hear that I feel that A is hearing some sounds. I believe that the sounds are very slight for him but just enough to notice. And certain ones, like “ba, stop, bop”. They have to be done pretty loud for him to give some sort of reaction. She said to just keep working with him how I do and hopefully it will all help him out in the long run. The more sounds that they are “aware” of before implant only make it easier for them to learn post implant.
I also got a nice compliment from her. She told me that normally auditory verbal therapy is once a week. (She has been coming here every two weeks.) She said this is because she knows how hard I work with A, and that she doesn’t need to worry that he isn’t getting any sort of therapy. So that was nice. I guess all of these workers that come here see all kinds of things out there.
So tonight we decided to finally take all of the gifts that we had bought for the babies in the NICU at McMaster. I had bought them just before Christmas to take them in then but with A being sick that never happened. Then I had planned on doing it for New Years and once again A was sick. So, finally tonight we did it! I was hoping to see Danielle, but she had to leave. Another time.
Just a picture of my little man sleeping after we got home…..awwww