We headed to Chatham for a surprise visit with grandma and grandpa S on Sunday. They were both very surprised to see us and we had a great time! The weather was great so we were able to spend lots of time outside. Great grandma and great grandpa also came to see us and had dinner on Monday.
A had lots of fun spending time outside in the nice weather. It is so nice to finally be able to get out and enjoy being outside instead of hanging around inside all of the time!
Monday afternoon he did have a pretty scary beginning of one of his big episodes that he hasn’t had since calling 911 in November. He was just waking from a nap and went into the beginning, dropping to the 30s and pulling his arms up. However just as I was about to yell to grandpa (daddy and grandma were out) to call 911 he took a breath. I did have to suction a bit but within two minutes he was fine. I told him that he is not allowed to scare me like that anymore!!!!
Well it has been a busy few days around here. A was sure happy to be back home after spending a couple of days at Sick Kids. Saturday was so nice that we went out for a walk.
A getting ready to go out for a walk…
Sunday we decided at the very last minute after my sister said that she would watch the dogs to head to C-town. We didn’t end up getting there until about 8pm and grandma and grandpa were ready waiting for us to head out to some fireworks. I was excited to take A because he has never gone before and I knew that he would like them. It was FREEZING out that night but I brought a bunch of stuff and had him all bundled up! He could barely even move he had so much stuff on!
First time seeing a sparkler!
Watching the fireworks with daddy…
Cuddling with mommy trying to stay warm!
Yesterday was MUCH nicer out! A had a great nap and then we headed outside to relax in the sun. Aunt K came down early in the afternoon when she found out that we were down.
Flirting with Aunt K…
After eating dinner we headed back home. We didn’t get in until almost 11pm and A decided that he was going to stay up for a while because he had about an hours sleep in the car.
Today A and I packed up and headed over to grandma and grandpas. He ended up going down for a nap around 12:30pm so I headed out to grab some groceries. He didn’t get up until about 2:30pm and we came home to drop off the food. We then went back out to buy some flowers from the nursery! Got home about 5pm and daddy came in soon after that. We ate dinner and just got back from a bike ride so I am ready to head to bed!
NOW for the best news of the day! I got a call from Toronto Sick Kids this morning to book A’s pre-op/meeting with the surgeon next week!!!!!! I was a little confused as to why they would book the “pre-op” without getting a “yes” for A being a candidate. But I figure that he is for them to be booking this. His MRI has not been read yet so I guess that would be the only thing to stop it now. (If it wasn’t structurally possible to do the implant.) I am sooo excited and nervous! My little man is FINALLY almost at the end of this journey. Only for a new journey to begin post surgery.
So we had a pretty great weekend with A! He is doing even better than he was if you can believe that! I am happy to report that he has maybe vomited four times in the past eight days (since I pulled his tube out)! I am soooo happy! And it is very obvious that he is much happier. We had started him on 30mg of prevacid after about four weeks of his non stop vomiting (about 15 times a day) in hopes that it would help him. Of course it didn’t. So I am thinking now that he has the new tube and the extra medication that it is really helping him. I am so frustrated that I am never listened to, as I told them from the start that the tube wasn’t right.
Anyhow, A’s sleeping is also better. On Saturday he actually went down for a nap at about 12:30pm and I had to wake him up at 4:30pm! Then Saturday night he went to bed at 10:30pm and did not wake up once ALL night until 11am! Yes, you read that right, 11am!
Grandma and grandpa S came down for the day on Sunday and we had a good visit. We went for a walk with A to timmies since it was so nice out. We then headed over to grandma and grandpa C’s for a barbecue. Uncle S and Andrea were also there. We got a nice surprise when we got there from Uncle S. He went out back and told us to come out there. He had bought A a bicycle trailer! He said that is what uncles are for when I told him that he didn’t have to do that. However, I do not think that the one he bought is going to work with A. I tried him in it today with some padding and so on and he just didn’t sit right. And that was without a helmet on. So when you add in the helmet his head would be too far forward, and he has problems breathing that way. It was a very nice thought though! I will be checking out the place in Guelph that makes the trailers and see what they can come up with for him.
So we had a great dinner and a good time with all of us together. Grandma and grandpa S headed out at 9pm and then we left shortly after to come home. A had been up ALL day yesterday! He did fall asleep in the car just as we were pulling into the parking garage, but I had to wake him to give him his puffers and put on his pj’s. I had put him into bed about 10:30pm, but he did not want to sleep. After about thirty minutes of him fussing unless I was standing in there I just brought him back out into the living room. He was finally in bed asleep just before midnight so I went right to bed. He did well last night too with his sleep and was up this morning at about 9am.
Well it has been a busy last few days and I haven’t posted anything recently. Today was A’s FINAL hearing test for the cochlear implant program! Grandpa came and picked us up at 7am and we didn’t get to the hospital until 9am! The traffic is just absolutely crazy. We went and had a coffee because his first appointment wasn’t until 9:30am.
The hearing test today was done with his hearing aids on at first. They had never done this before so it was nice to see the difference with than without. I got to sit in front of him today for the test because there wasn’t someone else available to help out. It was nice though for me because I can tell when he does hear something and react. When a sound is played in the right ear he would turn and then there are puppets and lights in a box that start going off. Same thing on the left. He just thought it was hilarious! He definitely liked the “ba ba” sound the most as he is used to me doing this with him.
Ruth (the audiologist) then took turned off the hearing aids and hooked them up to tubes for the testing without the aids on. It was very obvious that he wasn’t hearing what he does with them. When she was done she showed me the results that she had got. Basically it is consistent to show that the aids do help bring him up to the “speech banana” but only at the bottom level of it. So he is hearing sounds, but not enough for him to learn more or to learn to talk. The implant should bring him up above the speech banana.
So we left there and then met with a speech and language therapist. She did two different scales of testing. They were just a bunch of questions and then she will add them up and score A. The tests are based on kids that can hear so she said not to be discouraged because it is obvious that he isn’t going to be at the 18 month level (they go by his corrected age). When you add in his motor skill issues it makes things even harder for him to do what the average 18 month old does.
We left there and stopped in to see grandma and have a bite to eat. I was starving. I was also very tired and was having a hard time keeping my eyes open so when grandpa dropped us off at about 2:30pm I took A into my bed and we both had a good long nap. It was about 5:30pm when we got up!
So I am very excited that things are progressing now with the implant program. Now all we have is his MRI and CT scan in May to make sure that structurally the implant will be possible. We will then meet with the surgeon who does this amazing surgery and talk to him about what will happen and so on. Then the team for the implant program will all meet and discuss A and what they all think. They will come to a decision of yes or no for the implant and then let me know. Once we decide if it is what we want to do (which I have no doubts about at all!) then the surgery will be scheduled. A will only have to be in the hospital for one night after surgery and then be able to come home. About three to four weeks later we will take him back to have the stitches taken out and the implant will then be turned on. The speech therapist said that a lot of kids cry when it is turned on because it is so new to them. She also said that some do nothing. I could feel my eyes tearing up just thinking about the day that A will have his implant turned on. It is going to be so emotional for me!
Anyhow here is a picture of my little man in bed tonight. He is just exhausted!
Here are a few pictures from Sunday. We met up with grandma and grandpa S in Cambridge for the day. We went to the mall first for a while and then headed over to Kitchener to get A’s big boy car seat. Of course they didn’t have any in stock. I was so frustrated. We made it just in time to go into Costco to get a few things. A got a little body glove wetsuit that has floating pieces in it for swimming this summer. Maybe I’ll try it in the tub one day. LOL
They wanted to take us out for dinner and J said Red Lobster so I agreed. Normally I wouldn’t have but I really didn’t care because I was so hungry. I had steak and shrimp and it was so good! I even tried lobster and crab. They weren’t as bad as I thought they would be but I don’t think it is something that I could order to eat.
We had a great time and A was such a good boy for the entire day. We were away from home for almost twelve hours.
Well last night grandma and grandpa S stayed again for the night. I was hoping to get a good night sleep considering that I didn’t really have a good sleep on Saturday. But A had other plans for me! I went to bed and turned on the monitor and within two minutes he was fussing. I left him for a while but after about twenty minutes I heard him gagging so I got up. He is still throwing up quite a bit and I have no idea why. So after finally getting him to sleep I went back to bed only to have to get up two hours later to change his feed. And as soon as I was done filling his bag with formula he wakes up. Wide awake! 4am! What a kid I’ll tell you! So I just flipped him onto his back, turned on his mobile and headed back to bed. All in all I think I got about four hours of sleep.
A’s tube site is really bad too right now. I used silver nitrate last night on it and he was not a happy boy with me. It looks VERY sore and it doesn’t look any better than yesterday. So I gave him some advil and hope that will at least help him a little bit.
Grandma and grandpa left around lunch time and I went down for a nap. I could barely keep my eyes open and didn’t feel too great. I actually slept for about three hours so that was nice. I am almost ready for bed again. A has already been in bed for an hour so I want to get SOME sleep before he decides to get up!
Well J and I are back! Grandma and grandpa S came down yesterday morning so that we could go away for the night. It was a surprise for J and we had a great time. We went to Toronto and stayed at the Courtyard Marriott right on Yonge Street downtown. We then went for dinner at the Pickle Barrel and headed to the Kool Haus. We saw Econoline Crush, Black Stone Cherries and Hinder!! It was really good except for the fact that we were standing for five hours straight! After leaving the show we couldn’t get a cab because of all of the people so we ended up walking for a while, catching a cab and getting out way too early. We saw the Tim Hortons on the corner so told the cab driver to stop so we could get out and get a coffee (thinking it was the one by the hotel). However come to find out we were only at about 100 Yonge Street and had to go to 475! It was freezing cold and by the time that we got to our hotel we were both frozen! I was very impressed with everyone that we came into contact with in Toronto. The hotel people were great, the cab drivers and the lady at Tim Hortons that let us get french vanilla and tea even though they were closed! Very impressed considering you never really hear anything good about Toronto. I have to say that the walk from the club to our hotel was a little nerve racking but we both just knew not to look at anyone and keep on walking.
Today we checked out at noon and then headed to the downtown Eaton Center. We did some shopping and then came home around 5pm. A had a great weekend with grandma and grandpa. There are tons of great pictures that grandma took but I can’t get them on my computer to post them. So I will have to do that at some other time.
It was so nice to sleep in my own bed last night! Even though I wasn’t in it much it was much nicer than sitting on a plastic fold up chair! A didn’t sleep the greatest and had two cases of diarrhea last night again. None today so that is a good thing.
Grandma and grandpa S came down today for a visit. They haven’t seen us since just after Christmas when we left there. A was asleep for a while when they first got here but decided to wake up and socialize. We had a good visit but it never seems long enough for anyone. I got to have a little nap while they were here so that was nice. I am still exhausted from the whole ordeal at the hospital. I feel like I could go to sleep for a whole 24 hours.
Well we have a very busy week coming up. Lots of appointments! I don’t forward to weeks like this. But I do what I have to do. And when it comes to A I would do ANYTHING.