Well a week ago we headed to McMaster to see Neurology. We have not seen this neurologist since January 2007! The last time she saw A he was tiny and still on oxygen, so needless to say he has changed a lot in two years!
When we used to see this doctor way back and the discussion of A’s “episodes” came up she always felt that they were reflux related. We would see his GI and she would feel they were neurological. I felt pulled in all directions and didn’t know what to think. However today after giving her an overview of the past couple of years since she has since him, it has become very clear that these “episodes” are not reflux related at all. That in my mind is the only thing that has been ruled out with what could be going on with him.
She agreed that she did not believe they were seizures but that we should have another extended video EEG. Of course nothing happens quickly and she didn’t think that it would be until Spring!
So all in all not an appointment that seemed to get us anywhere but I didn’t expect it to. She did tell us that there was one little boy who she remembers that there were no answers for. It is tough for me to think this about A but at the same time all I can do is continue to do what I am doing and advocate for him and his needs.
So the past few weeks I have been trying to put A in his Pony walker. It is quite funny because initially he HATES it and screams but once he realizes that he can move he is fine.
He has not figured out how to turn it or back up so he does get frustrated when he hits something and can’t push through it! haha But lately his thing has been going into the kitchen. Maybe this is because he doesn’t ever go in there so it is exciting for him, but nonetheless it is adorable! He gets SO excited and starts babbling away as he is entering the kitchen and then he heads right to the back patio door. As you will see in the pictures at the bottom, it is priceless. I can’t even look at those pictures without tearing up. The things so many of us take for granted and yet a child who can’t just walk to a door and window and look out takes so much pleasure out of it.
We headed to grandma and grandpa S’s Saturday night after daddy got home from work and didn’t end up getting there until after midnight. A had finally passed out about a half hour before getting there and when I took him out of his car seat and put him on the bed inside he didn’t even budge…
Sunday morning…the day of the bridal shower. Daddy went golfing with the guys and A stayed with the girls to open gifts and have fun! (Notice his shirt?)
Liam smiling for the camera…
Aunt Shorty taking a nap with A. He had kind of a rough day on Sunday which put a damper on my day for sure. He has been off for about a week but Sunday he was just NOT happy. A ton of times going off colour and just fussy.
Daddy and I got SO much more great stuff and it was great to have so many people that we care about there to celebrate our upcoming day with us!!!
Wes…an amazing kid!!! I have said it before, but he is what ALL kids need to be like. If everyone was like him then kids like A wouldn’t have to worry about trying to fit into this world because it wouldn’t be an issue. He is SO great with him and the best part of it, is that it doesn’t even matter that A is different!
We came home on Monday night pretty late but the car ride home was good and A was a good boy.
Last night we took A to the fireworks for Canada Day. He was very unhappy and I was ready to pack up and leave because he was so upset and going off colour so much but daddy took him and walked around until it was dark enough for the fireworks. We met up with Shelly who is A’s worker in the summer and her boyfriend Jeremy and their two kids.
As soon as the fireworks came on Ashton was is awe and wouldn’t look away!
Well this weekend was very busy but VERY fun!!! On Friday night we had our stag and doe which went amazing!!! We made a TON more money than we even thought which will really help us out around here. The turnout was great and everyone had a good time. Here are some pics from Friday night…
My bridal shower was on Sunday at my mom and dads place. There was so many people and so many great gifts!!!! I don’t have any pics yet uploaded from then so I will post those in a couple of days.
I had a nice surprise visit today from my friend Vickie and her two daughters Sophia and the new baby Ava. Hopefully we can get together with all three soon…been SO long since we have seen Alina!!!
I’ll tell you, I could not get over how small Ava was and she is about 12lbs!!!! I don’t even remember A being that little. He wasn’t too impressed with mommy holding a baby. And when Ava cried there were a few pouts. He better get used to it because hopefully one day he will get to be a big brother!!!
Well things around here are getting pretty busy/crazy. We have so many exciting things going on I thought I would update today. Well first, I am excited that I got my blender last week for A’s food. He is not on any formula now during the day but just blended REAL food! The past two days have been kind of off for him so I don’t really know if it is the food or him not feeling the greatest. I am thinking it is the oatmeal in the food so I am taking that out today and see how it goes. He has been having a lot of blue episodes and just not acting himself. He is fine in the morning, has great naps and then wakes up and is just very upset with tears and all. I cannot tell what is bothering him, but something sure is.
Now these next two pictures are hilarious. I was feeding him his food which I do in 50ml intervals and I only have small 10ml syringes left. So I am pushing in the food and the syringe flies off and it sprayed all over him and everything around. I must have laughed for like ten minutes straight. His face was initially priceless and once I laughed he started.
Now for exciting news, we FINALLY got his pony!!!! He does SO SO SO much better than when we trialed it last August! Yes, it took almost ONE friggin year to get! I cannot wait until we move and he has tons of space to move around!!!
Just some exciting news that I now have A up to 8 hours off of his feeds a day! This is a HUGE accomplishment and as long as he allows I will continue to try and increase it. He also managed to take 12 bites of sweet potatoes the other night as well. These are both VERY exciting!
A is a busy boy lately and keeping me pretty occupied during the day! He is constantly moving around and thinks that he can do ANYTHING! This kid sure moves his legs now and I only wish that he would move them like that in the pony because he would be flying around the place. The only time he isn’t crazy is in the pony! haha
Tonight daddy was holding him up and he was moving his feet like crazy around the room. If he didn’t need to be held, he would have been running! I have it on video but I still cannot figure out how to get the videos on here because they take up so much room when I try to download them.
A has also been doing really well at reaching for things now that he wants to play with and holding onto things. I don’t really know how he so quickly got onto this but it is great! Here he is today with a spoon that I had…
He is so proud of himself when he does things. It really shows that he KNOWS exactly what he is doing!!!
Just a little article that really made me day! Thanks to Billie!
I am so amazed at how much A is hearing with his implant. He has always been a big TV fan but I see now how much more he pays attention to it. Especially when there is music playing. This is something I had always dreamed for him! When I found out that he had cerebral palsy my hopes were that music could guide him in life. However we then found out he was deaf and my dreams were crushed. I wondered how on earth he would find his place in the world. Well now with technology and his wonderful cochlear implant my dream is starting to happen! Just look at the concentration this kid has!
Thursday A went and spent the day with grandma at her place. With the heat as crazy as it was I just knew he wouldn’t be happy here. Daddy and I headed to Orangeville for the afternoon so that he could do his final drive test.
Friday I met with a mortgage specialist to see what J and I are able to do. He was very nice and helped me think a lot about what we are able to do and not what we WANT to do. I have to admit that I always find it a bit odd when people ask “what is wrong with him?” (Meaning A of course.) I told him the basic “he was born premature and has cerebral palsy.” Of course not everyone knows what cerebral palsy is and I have to remember this. He then wanted to know why he was wearing glasses and what was on his head, meaning the implant. So I told him. He said to me “oh that is so sad.” Of course many think this but they do not know A. It isn’t sad. A isn’t sad. It is just a different way of life. It angers me when people pity me and feel sorry for A. This is one reason why children LIKE A have such a hard time in this world. People don’t realize that they are just like everyone else except that things have to be done differently.
He then went on to ask about the future. Like, “what about in 20 years from now? Most people have kids and then they grow up and move out….” Well I said “I try not to think of the future but rather live for the day.” Hmmm no response. Now everyone that knows me, knows that I worry A LOT about the future however I have never really thought as far as 20 years!!
The last comment that blew me away was “well you could just have another one.” I took this as having another one would kind of “replace” A. I could never replace A. He has been through so much and has come so far and amazes everyone around him. Of course I would love to have another child but I want to wait until I know that A is more “stable” if that is the right word.
It angers me that he said all these things to me (and you special needs mommies know EXACTLY what I am talking about) but at the same time I have to realize that my life isn’t the normal life. There are so many people in this world that don’t even realize that things like this go on. I mean this guy had to be about 50 and yet he didn’t understand prematurity, cerebral palsy and all the needs that come with it. And if he has never been around it how can I expect him to understand? I can’t. All I can do is try to educate as I go about my days.
Anyhow, yesterday was a great day. A and I went out and did some running around that needed to be done. Then I decided to take him to Chapters to buy him a new book. This kid absolutely LOVES books now and it is so awesome to be able to read to him now and know that he is hearing everything I am saying! I always have read to him but the feeling now is just overwhelming.
I ended up buying him a few books and we have already read them over and over and over. I think I can read most of them now with my eyes closed!
We did some more time in the Pony. Of course with us having carpet it makes it difficult but it is still good for him to stand and put weight onto his legs and hips.
On another exciting note, A is LOVING when you stand him up holding him. He now even moves his legs to walk towards you!!!! He gets SOOOO excited! I have it on video but I don’t know how to put them on here yet. I cannot believe that he KNOWS to move his legs/feet to walk. My little smartie pants!
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!
Frustrating Doctors, Wonderful Respite Worker, GREAT Implant Tuning, Day 5 Of Hearing Age & My Amazing Little Man In His Pony!!!!
Well it sure has been a few busy days around here! Wednesday was just absolutely stressful and crazy! I must have spent about two full hours on the phone dealing with Toronto Sick Kids and McMaster. I received a call from A’s peds nurse from Sick Kids. She said that she had called over to McMaster because his referral for cardiology cannot be finished until they receive all of the information from Mac with tests and so on that they have done. However they wouldn’t send anything over. I called the health records at Mac and told them who I was and what I needed. She said that I had to write this detailed letter and mail it to them before they would fax over any information. So I then called Sick Kids back and she was VERY frustrated as well. I almost feel like when I call Mac this red flag pops up when I say “A”. So now in all my spare time I have to write this letter requesting the information that I have EVERY right to, for them to fax it to the docs I will be seeing at Sick Kids.
I then received a call from the neurology department at Toronto Sick Kids. Now, I had asked A’s ped here to send a referral there way back in October. I never heard a thing. I then had Ashton’s GI from Mac do a referral a few weeks ago and heard nothing. The referral was sitting there in neurology, however the referral has to come from A’s prior neurologist. Had I not phoned AGAIN I would never have found this out. Why didn’t they call and tell me that I needed the referral to come from Mac?!? Anyhow I then called Mac to tell his neurologist there that I needed a referral to Sick Kids. The nurse told me that it didn’t make sense to her. I won’t go into detail, but I can say after some tears and major frustration the referral was FINALLY done!
Shelly who is A’s new respite worker was here that day (thank God!) and today. She is absolutely AMAZING with him and I am so comfortable with her already. She really takes interest in him and makes him do things on his own too instead of her doing everything for him. He needs someone that is like that because he is so used to just having things done and needs to learn that he CAN do things on his own. (I am talking about toys and things of course.) I have to sit back and smile/laugh because she is not afraid to be a big kid herself. I am very lucky to have found her.
Wednesday A also had a new lady come to see him from CNIB for his vision. When I had spoken to her on the phone I explained his situation with his eyes and said that I was frustrated because I didn’t understand how he reacted the same to things with and without his glasses. Well I don’t think she was really listening to me because when she came she was very shocked to see how well he uses his vision. She said that most kids that she sees don’t see some of the toys that she brought. And the one was this huge circle with colours. Kind of looked like a big lollipop. Man, this kid would probably see it across the street! Anyhow, she gave me a form to call and make an appointment with a doctor in Waterloo. haha just what we need!?
Yesterday grandma, A and I headed down to sick kids again for his implant to be turned up and tuned some more. Ruth was playing a bunch of sounds and you could tell when it went louder that he knew because he started to tense his legs. (We couldn’t hear these beeps as they are played right from the computer to his implant.) After she had all of the sounds and probes set she unhooked him from the computer and told me turn on his implant. I was holding him at the time and the minute I turned it on he jumped! He jumped so much that my mom thought that I had pinched him by accident. He immediately got this HUGE, and I mean HUGE pout on his face! I haven’t seen one that big out of him EVER! He must have had the same face for about two minutes. I was laughing SO hard along with grandma and Ruth and then he started to laugh! It was so nice to see the obvious reaction. Of course I didn’t take my video camera with me because I didn’t think that there would be much to it.
So it seems now that every time that I turn his implant on he smiles. It is obvious every time that he is hearing! I am so excited for him! Last night at grandma and grandpas he had some pouting happening with sounds and toys. Something he has never done before.
There is one more program that Ruth put on the computer of his implant so I will be turning it up probably Monday. We don’t go back to Sick Kids now until August.
Today Shelly was here and Dawn as well. Lucky to have so much help today so I can get all my packing done that I need to! And with A there is TONS to be done!
Anyhow, I will leave this post with some pictures of A in his pony. He isn’t seeming to like it very much because it is hard work for him. Today he was screaming at the top of his lungs so I took him out. Of course then he is fine. What a kid. He is lucky I love him so much!
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.