Well for starters the weekend was pretty good. Daddy and I were able to take our little man out of here yesterday on a day pass!!! So we left here about 1pm and headed home. He really didn’t know what to think about being in the vehicle…but after three months who can blame him? When we left here his shoes would not even go onto his feet! LOL So we know he has grown!
I’ll tell you though, I was more nervous leaving here yesterday with him than I was the day we left the NICU after eight months! I was so afraid that he was going to have an episode in the car but thankfully he didn’t.
It was very cute to see how he reacted when we got home. As soon as we pushed his buggy into the living room he was going nuts!!! And of course daddy got him a big huge TV so that was put on right away for him and he thought it was great!
We got ready to head over to my aunts for Easter dinner which was nice because we have a nighttime routine of Ashton having a shower. He loved it! When I was drying him off he started to gag and went very off colour and into one of his fits. It didn’t last long but it really freaked me out.
Everyone was pretty surprised when we walked into my aunts house with A! We had a great dinner and A slept for a couple of hours because he had not napped all day. We had to be back here for 10pm but traffic was absolutely insane that we didn’t get here until about 10:30pm.
Today…I spoke to his complex doctor and told her that I wanted to give the botox a try. Well botox is tomorrow!!! I was told to go down to IGT (where they do the botox) to sign a consent. When I got down there I told them that I wanted to talk to the doctor that would be doing the botox before I signed. I don’t think this is a common request because she wasn’t too thrilled about looking up who was doing it and then asking when he would be available to speak to me. I ended up going back about an hour later and he was great. He explained everything again to me and did happen to tell me that botox is not usually used for pooling of secretions. What?! The docs told me that this was a thing that is common here. Well he told me it is common to use for drooling but not for pooling. So A will be there first case like this…he did however say that it makes sense that it COULD help so I am holding onto that. I have to say though that I am VERY nervous. A couple of times today I almost thought about cancelling it. But I know deep down that if I didn’t at least try it that I would always wonder what if.
He will also be getting a long awaited CT scan tomorrow since he will be under a general. The docs aren’t thrilled and keep saying it won’t show them anything but I cannot stop wondering so it needs to be done.
I had another genetics doctor come in to see me today and meet A. She is actually a neuro genetics doctor which kind of fits him better I think. She was also very kind and caring and took her time. She looked A over for about five minutes and just watched him. Well her conclusion was that his issues and what she sees are not related to his prematurity. I asked her about the CP diagnosis and like she said, CP is such a wide range that it easier to diagnose that anything else. She really doesn’t feel that this is what is going on though.
She said that she was happy with the testing being done but that she does have some other ideas if everything was to come back okay. She did mention a spinal tap to check his neuro transmitters as well as a muscle biopsy. And the last thing she mentioned was mito. Hmmmm interesting is all I have to say. Scary too.
So please hope and pray that this botox does the trick for his nasty nasty spells. I don’t have high hopes but somewhere inside I still have some left….
Well I am sorry that it has been a while since I have done a post! I know that I have received a few concerned emails from people. I am happy to report that A has NOT had another of his life threatening events. I also wanted to thank people for their concerns, caring and thoughts on what could be happening. I do want to say that we know it is NOT bronchospasms. The only answer the docs have ever had was that they are ALTES-apparent life threatening events.
I took A to see his pediatrician on Thursday. I of course knew that he wouldn’t have answers for me as to why he has these ALTES. We both did agree that it is probably related to his reflux (which most ALTES are) because of how bad it has gotten over the past couple of months. So we increased his prevacid from 15mg/day to 30mg/day. I really hope that it will work! 15mg is actually an adult dose already so I hope the 30mg stops his vomiting.
Now his doctor was also a little concerned because like I have said, ALTES usually occur to babies under the age of one. With A almost being two this is strange. Does this surprise anyone that knows A and his history? NOPE!
IF he was to have another spell we are supposed to start CPR right away and call 911. Now with A’s history we of course know that by the time the ambulance was to come A would probably be fine, but like his doctor said it could be the time when he doesn’t start to breathe again and then at least they will be on the way. I can’t even tell you how scary this is for me. I have ALWAYS been a worrier and now having A can really be hard to deal with the worrying that goes on. There are some nights (I find nights worse for me) that I lay in bed and will think and think so much I get crazy with it! I don’t know what I would do if I lost A and at night when I think about it I can just keep it going on and on. I think about if he did pass, what would I do? Would Jeff and I stay together? What would I say at the funeral? It is nuts, but because I worry TOO much sometimes it is hard!
Anyhow, I will start with a few pictures from last week that I never did get to post. These first ones are him sitting like a big boy in his cool Cars chair!
A and his best buddy…
My little man sitting on the couch…
Now on Thursday evening we all got packed up and headed to C-town for the weekend. I was VERY nervous about even going of course with A having that spell but I figured that it didn’t really matter where we were.
We didn’t get in to grandma and grandpa’s house until around 11pm. A was very tired so we just got him ready and put him to bed.
A sitting in his seat watching TV…
A cuddling with daddy…
A and grandma…she was very tired! She had waited up for us on Thursday night to get there and didn’t get to bed until just after midnight and had to be up for work at 4am. Then she worked a full day on Friday and this was VERY late!
Okay now we are onto bath time. Daddy and I had given him a bath in the morning on Friday. A has always been VERY vocal in the tub and LOVES the water. So we love to just sit and listen to him and watch him move around. The kid really thinks he is swimming or something because he is SO active!
Anyhow, lately A has been playing with the sound “ffff”. Well, I am happy to report that A has said his first word (we can’t count it though really since he has no hearing!) and all of a sudden he said “*uck”! J and I looked at each other and back down at A. Of course we know that A has NO IDEA what he said but in a silly way we were excited that he said ANYTHING! I then said to J how A has been playing with his “fff” sound lately and it was probably just one of those things. Well wouldn’t you know it he says it again! We were bad and started laughing (which I know you should NOT do) but it was too funny. And when you have a child that has NEVER said anything it is still exciting.
So we tell grandma and grandpa and they kind of brushed it off of course. Well this bath below A was going on and on. Grandma was up there with us and all of a sudden A says “*uckin”. WHAT!??!!? Well there were three witnesses to this one and it was DEFINITELY what he said.
Well now onto the adorable bath pictures….
A sleeping with Lady curled up with him. I had to take this picture because Lady never really wants anything to do with A. She has never really been interested with him since he has come home but yet she wanted to be there constantly. We only took her with us and Cujo went to grandma and grandpa Clegg’s.
A and daddy watching the Leaf game. Wow that was quite the game!
Easter morning. Well I should say afternoon! Grandma and grandpa got A this Toronto table!
Aunt K and A at great grandma and grandpa’s for dinner last night.
A and great grandma…