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!