Am I ever happy that A’s nurse was here last night! He had a pretty rough night with vomiting bile, a nose full of boogers and just plain irritability! I did hear him at 2am at which point he was up until about 3am. Then from 5am until 7:40am she had to sit in his rocking chair and hold him. By the time she left at 8am he was back asleep so I decided to cancel his physio for today that he was to have at 10am. Good thing I did because he didn’t get up until about 10:15am. He actually doesn’t seem to be that bad right now except for sounding a bit congested. This whole thing brought me to thinking about the RSV shots that he has received for the last two years. I really didn’t think he would qualify this year as he isn’t on oxygen anymore and he hasn’t been hospitalized with pneumonia or anything of the sort. I called his doctor this morning and he is on the list! This is awesome news and can help me relax a little bit!
On Saturday I took A with me to go and meet a photographer that Lisa had recommended to me. I was FINALLY able to walk away knowing that this IS the one that I want there on my wedding day! Her work is absolutely amazing and there isn’t a doubt in my mind that I won’t be extremely happy having her do our pictures. So thanks Lisa for helping me make one of the biggest decisions for my day!
Saturday night we all just settled in and watched a movie. Or should I say tried. LOL A is constantly wanting to go and doesn’t just sit on my lap anymore when I want him to. The happiest place for him is the floor! He loves the freedom of being able to move around and not have any boundaries. However with his feeding tube this is difficult at times to do!
Here he is being the little monkey that he is…
Yesterday was a typical Sunday around here. Just hanging out and not doing much of anything!
Still no word on the MRI from London. I called there on Friday and got ahold of the secretary and she told me that he was in a meeting until 4pm (when they close) but that she would have him call me. Nothing. And still nothing from he respirologist at Mac either.
It has been a VERY busy few days around this place! Tina came down on Thursday night from Windsor to come with me to look at three different places for the wedding. We looked at two on Friday and one on Saturday and I think I have my mind made up on which place I would like it. It was so exciting to go into these places that were set up for weddings and knowing that one day it will be my wedding! It was so nice to have another opinion so thanks Tina for coming down!!!! It is very greatly appreciated! And thanks Shelly for coming to watch A for the day on Friday so that we were able to get things done!
The one place that we went to was the Pines in Cambridge. It was absolutely gorgeous, but the lady that I was supposed to meet with didn’t show up! I was very disappointed because she wasn’t very nice on the phone and therefore I had said that she would really have to step it up at the viewing. Well no show means no go for me! It is too bad too because it was soooo nice. I would have been pretty upset had that been my wedding set up and there are people walking around inside unattended. After about fifteen minutes of wandering around with no one to be seen we found the chef in the kitchen. He helped us a bit but it didn’t make up for the owner not showing.
Yesterday was definitely a lazy Sunday. Everyone needs those once and a while though. Today made up for that. We decided to take A to the CNE in Toronto. I was really looking forward to the air show however we were stuck in traffic for a LONG time to get to the parking lot. We left at 12:30pm and didn’t get out of the car at the Ex until 2:30pm. Our friends Shawn and Karen came with us along with their kids Payton and Riley. We got to see the planes but not from very close up. It was so loud and really something to see! I was surprised that A was okay with the noise but he did look a bit confused. The rides were pretty noisy and the first one we stopped by A was pretty scared and pouting.
It ended up being a VERY hot day and not really expected. It was almost too hot to be walking around for that long but A did well. However he did have tons of vomiting which I think was due to the heat and the sun. But as you can tell by the pictures he was still pretty happy.
This picture was from the other night but it was very cute how he was copying sticking out his tongue…
A on the merry go round! He wasn’t too sure what to think at first when it started moving but he did well.
Payton and Riley driving…
I wish I knew what he was thinking sometimes…
J took Payton on the graviton. She had never been on rides before but didn’t have any problems getting onto them!
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!)
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….
Well I have some very exciting news! On Tuesday night I was giving A a bath and he rolled from his back to tummy for the very first time! YAY! He is so active in the tub and it happened so fast I couldn’t believe it. I went into a bit of panic mode considering he was face down in the water but I quickly grabbed him and turned him over and he was laughing! So at the age of 25 and a half months he did yet something new to prove that he CAN do it!
So yesterday he was back to his normal self after having a fever on Tuesday and being pretty cranky. However today he is back to the fever, gagging, vomiting and just being plain out fussy. I really don’t know what to think is happening but hopefully it is something that will clear on its own.
Yesterday actually was kind of funny because A was just plain old bored. I could tell by how he was acting that nothing was pleasing him. I had him in my room while I cleaned and he didn’t want to be there. I had him in his room and he didn’t want to be there. I took him for a walk which was okay for a while but not long enough! Finally I decided to pull out his swing which he hasn’t been in for ages! And voila, look at what it did to him!
After a nice little nap he was happy! YAY for the swing. So I have decided to keep it within reach. Funny how after a while of not using something they are really interested again.
Shelly was here today to play with A. He wasn’t really into playing today and just didn’t want to do much. I of course had a doctors appointment so I thought getting him out for a bit might help him. He was not happy! I got through my checkup fine, needle included! LOL I do however have to go and get my eyes checked because I find myself squinting a lot of the time when I am watching TV or reading from afar. Should be interesting.
After coming home I tried to get A to sleep because he was SO tired but he just wasn’t comfortable. I gave him some advil thinking that might help him but it didn’t either. It is so hard when he is sick and I just don’t know how to make him feel better. Finally I took him to my bed and laid down with him. He went right to sleep! What a little stinker. It’s okay though because he isn’t EVER in there at night and I wouldn’t start that habit.
So I can also add to my list of things that I have noticed since A has had his implant activated. Lately he is very pouty and scared of things that he never was before but he also gets upset when I walk away from him. He can be content when I walk into his view but as soon as I walk away he starts fussing. It is kind of cute because I always wondered if he really knew that it was “me” and now I know! He also does this at night when I go into his room. He is fine until I walk away and then he has his pout and cry that just make me want to cry too! I just have a hard time understanding why all of these new reactions were not there without hearing. Seems kind of strange to me.
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!
Well I thought I would do a post before J and I head out for the night!! Yes, the night! Grandma and grandpa are taking him and the dogs until we are back tomorrow!
So we have already gotten good use out of A’s bike trailer. We have had him out almost every night for a ride and he seems very content in it as long as it is moving. It is really nice to be able to do things as a family that we probably never thought that we would be able to do at one point.
Friday Dawn was here (A’s PSW) and she brought him some new toys that she had found while she was out and thought that he would like! She found this little cat that makes the “meow” sound and he LOVES it! Very nice of her to do for him.
So A has started with his vomiting again. Very frustrating for me to understand because nothing has changed since he had this new tube put in. Mind you, it isn’t at the amounts that is was a month ago but enough that it is affecting him. I really wish that there was something that I could do to fix it for him.
Speaking of reflux, that has been a “hot” topic in a group that I am part of. A lady had asked a question about reflux for her daughter and a few of us replied. She had wondered if it could also affect the childs breathing. I wrote back stating that it definitely would cause issues with breathing and the upper airway along with pain and discomfort. I had also wrote how A has had life threatening events related to his reflux and that I wish there was a cure for it. Well it all began there. I had another mom tell me that “there is a thing called a fundo and that cures reflux.” Are you kidding me?!
Now, anyone that knows me knows that I do a TON of research on all of A’s issues. There is NO CURE for reflux! This is a very sensitive topic for me because I have been dealing with it now for a very long time. If there was a cure for reflux then there wouldn’t be babies/children/adults suffering every single day. There wouldn’t be babies/children dying from this nasty diesease. And most importantly, if this WAS a cure then A would have had one a LONG time ago!
Don’t get me wrong, I do know moms from my reflux group that I am part of that have had great success with the fundo. BUT and this is big BUT there are way more kiddos that have had one done and now have more issues than they did before. And that is not something that I am willing to put A through. Plenty of these kids have had to have the wraps redone. Some three, four times. Some kids have retched so bad (retching can be a side effect) that they end up with their feeding tube out of their mouths! One little boy was retching so bad he spit out a staple. Why on earth would I want to take these chances with A?!
Anyhow, I am off to get ready for my night of partying!