Yay I can finally sleep tonight! The past two nights for me have been awful because I am so darn nervous about this H1N1 flu going around. When daddy got done work today A and I went to pick him up so we could just head right over to the clinic. Grandma C met us over there too so that she could get hers.
The line up was absolutely INSANE to say the least. A lady out the front of the clinic told me the wait was almost four hours!! It started inside the school where you would get your paperwork done and went all of the way outside. When we got there I went over to the one guy working the line and told him that we could not wait in a 3.5 hour line with A. He came over to A and said he would be right back. We then were taken all the way to the front of the line so we could get in and then out. Awesome!!!
So needless to say I feel much better knowing that it is done and over with. Now we just wait the required two weeks until it is effective.
I called A’s one company that sends me his PSWs on Monday and Friday and left a message saying that I was suspending all of his services until he was fully covered for the H1N1. Late this afternoon they called me back and left a message saying “as long as he hasn’t had a fever for five days then the workers can come back in.” What??? I don’t think they listened very well to my message and instead think that A has H1N1.
Anyways, yesterday we had a visit from Grandma S for the day. A was a big show off in his stander for her and he did such an amazing job at holding his head up. At one point daddy had the stander straight up and he held that head up for a good fifteen minutes!
He is not liking being placed in the stander but as soon as he is up and standing he is great. I think it is because he HATES to be held down and I really have to hold his legs down tight to get the straps done up in front of his knees. Just a feeling that he isn’t used to and doesn’t like. His PT said that he would probably only do about fifteen minutes at a time without complaining but he is doing MUCH longer than that each time! I think yesterday he spent about one and a half hours standing up. Gives him a whole new view of the world really when you think about it. Such a nice change to be upright instead of sitting in his chair or laying on the floor! Go little man!!!!
This child just LOVES his daddy!!!!
Well another busy week is over! Wednesday A had his PT and OT here together because we finally got him a benik to try. I have been asking about this for a long time but I find that sometimes people really haven’t done the research or learning on things that help kids. Anyways, his new OT happened to have one at home when I brought it up again last week so she brought it over. I wasn’t really able to see what he did for them with it on because his dietitian was here so we were chatting while they did his physio. However I did definitely notice some more stabilization of his trunk when I put it on him that afternoon. The only problem is, this kid is the hottest, sweatiest kid EVER that it just makes it ten times worse. He weighed in at 24lbs 7oz so up three ounces which is fine with me. I am so past the gain and gain idea because I have realized that if the child LOOKS healthy then they most likely are getting enough nutrition.
Here he was on the scale. Kind of funny that he was so happy as usually he goes very stiff and starts to scream. It took about five minutes before we were finally able to get his weight as he wouldn’t stop moving he was so excited!
So here he was sitting in his chair with the benik vest on underneath his shirt. He loves this slinky and anyone who knows A knows that holding this with BOTH hands is a HUGE accomplishment! Go A!
Thursday grandma and I headed to Kitchener with A to go to Toys R Us. That store is SO overwhelming! I did find a few things for A and I am so excited for Christmas to come! This will be his first Christmas here at home and I am looking really forward to it!
Friday I took A to his ped to get the other half of his flu shot. He didn’t like it too much but he is a tough little guy so he got over it quick. I was speaking a bit more with his doctor about the spell A had a few weeks ago (he was the one that came to the ER and told me he thought it was a seizure) and anyhow he said that the more he thinks about it the more he doesn’t think it is. This was after I told him about the echo last week and how A’s sats were so bad after only a whiff of nitrous. Ugh talk about being thrown in all directions! I have some telling me seizures (funny though because THREE neurologists that have said YES this was a seizure have all said DIFFERENT types) and some tell me airway and some say reflux and some say they don’t know. Where is my Doctor House?!?! LOL
This is what I am greeted to every single morning when my little man wakes up…
Today we had a pretty lazy day. A didn’t get up until 10am and then by 11:30am he was fussing to go back to sleep. I however kept him busy and up until about 1pm and he slept until about 3:00pm. His naps lately have been AWESOME! Although yesterday he skipped his nap for the day and that is probably why he got up so late today.
HE ALSO SAID ‘DADA’ AGAIN TODAY!
Daddy got home about 4pm and we got ready to head out for the annual Christmas gathering that we go to with my parents and their friends. Uncle S, Auntie A, Aunt Shorty and Rob all came this year too though which was a first.
I had a “moment” tonight there. Funny how things creep up on you when you least expect. There was a girl there that had two kids. I can’t remember how old the oldest is but I would guess about 18months. The little boy was a new addition and as I walked by to the kitchen I stopped and asked how old he was. The answer I got “he is 5 months old….he was a preemie though.” So of course I am curious and say “oh really how early?” And then she says “five or six weeks…I can’t remember. He weighed 5lbs 2oz and spent two weeks in the hospital and it was so hard on me. It is all such a blur to me now but I was exhausted. He has to have a surgery too for a hernia.” So I of course am blown away because of the fact that she is going on and on about this when she KNOWS my story. I eventually stepped away and when I saw my mom I started to cry. I went into the bedroom and I was just angry. Now I TOTALLY understand that for ANY mom who has a child early and spends ANY time in the hospital this would be a big deal. But when you are telling this to a mother that you KNOW spent nine months in the hospital with her baby that weighed under two pounds it gets to me. And when you know that her child has severe disabilities…when you know her child is deaf…when you know her child doesn’t eat by mouth. I just don’t get it. Do people not see past themselves?! These people really need to realize just how lucky they are. How their situation might have sucked in the beginning but really in the big picture it is so tiny. Anyways I don’t want to go on and on about it but I know that most of you who read my blog understand this.
Here is my little man holding his bells! (By the way, I would say about three months ago he couldn’t even come close to holding this!) He is funny now too, because when he sees you going to give him something he opens his thumb up…its really cute.
Not much new to report on around here other than A had the first half of his flu shot yesterday and did very well. The second half will be in the beginning of December. I am still working on trying to get him the RSV shots but so far STILL no luck.
I have once again come down with a cold and sore throat and just hope that I am able to keep it to myself so we can keep up these smiles!