So since my last post everything is pretty much the same. We went and saw neurology a month ago as we haven’t seen her in almost a year. I have to admit that she really has come a long way from way back in the day. I think it has been very difficult though as she has been A’s neuro since day one. So for years she blamed all of his issues on being a “preemie” and it wasn’t until we have seen her the last two times that she truly feels that he is missing another “diagnosis.”
Today we talked about A and how tight he is with his legs. We are going to get him fitted for “gators” that he will wear when he sleeps to help stretch his legs out. He used to have a very low tone over his entire body however over the last year or two things have changed and he is spastic most of the time in his lower half. A perfect example is how he sits HORRIBLY in his wheelchair and it is very odd to see him “relaxed” even while sitting. Arching is definitely his thing!
I mentioned that we are in the works of getting him a stander which she thought was great. She did tell me that he should spend at least 90 minutes a day in the stander to give him the effects that we need to give him.
Disappointed yet again.
It never fails that we truly seem to get the shitty end of things for A. Neuro wanted to know why he doesn’t have these things already? Had PT not talked to us about using gators? Hmmmm yet again I have no idea. I had asked his PT in the past about getting some sort of braces for his legs and I was told “he doesn’t need them.” So what am I supposed to do with that? These people are supposed to know what they are talking about right? HA! I should have known from our history that this isn’t the case.
Stander. Well *I* asked to first try one a LOONNNG time ago. I think A was about 15 months old the first time we tried one. We don’t have one yet because they are SO slow and keep messing around. We don’t have one because nothing ever seems to work for A the way that it should. And these standers are NOT cheap. The one that we just got the quote on is almost $5000!!! It is absolutely crazy and makes me sick to think that we as special needs families are totally taken advantage of!
Heck, A is almost 5 and we have YET to get a seating system for in the house. We have YET to get his wheelchair the way that it should be.
We will be going to her spasticity clinic in July. She will have her therapists there to look at A and we will go from there.
However on a good note we also met A’s new PT a few weeks ago. It was a blessing actually because his most recent PT was as useless to us as it gets. She however has left the company hence our new PT. She actually seemed to know what she is talking about. We really miss our old PT who moved away!!!
Next a dreaded word for me.
This has been the biggest stress in my life lately. Now don’t get me wrong, I really want A to go to school HOWEVER I am really really concerned, worried, scared…just about any word you can imagine.
J and I had a meeting about a couple of months ago with A’s homeschool. It was the first of a few that we will be having. So my biggest thing the last few years is that I don’t want A to have a nurse at school. However now with the trach we do not have a choice. Fine. But I told them that the ONLY way that he is going to school is if he has a nurse AND an EA. Period. No ifs and or buts. They said they could probably work that out.
Even still I am nervous. We were told that any time that A is to have an “episode” they have to call 911. I am sorry, but I don’t want to be called into the school everyday or the hospital for that matter because of his episodes. Now I did tell them that I do have an EA that I would like to work with him in school but they just say over and over that I can’t choose his EA. I realize this, but would you not be more comfortable with someone that KNOWS A and how to handle him then to have someone learn? Yes they would. I won’t be giving up my fight. I think they got the idea at the end of the meeting just how much I fight for this little man!
On Tuesday we had the much dreaded/feared appointment to get the results for his muscle and skin biopsies. All was NEGATIVE!!!!!!!! Actually the doctor said that A’s mitochondria is the best he has ever seen on a biopsy. Go figure eh?
He did however send me up for bloodwork as well as he is concerned about my repeated miscarriages. He thinks there is a possibility that I could have what is called Anti APL Syndrome. Long story short, lets just hope I DON’T have this. I am not sure when the results will be in.
Wednesday night we spent the night in hospital for a sleep study. His last one was in 2008 when it was done at Sick Kids. This should be very interesting to see the results to compare them to pre-trach.
There has been a lot more going on but I will get into that on my next post. I think this one is long enough already!
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 we headed out to Mac yesterday so A could get his first H1N1 vaccine. He will need to get a second one in about three weeks and then immunity is not until two weeks after that. That means approximately the middle of December.
I have decided to suspend A’s services that he gets with the community until that time. And as well, anyone who comes in here that does NOT get the vaccine will not be allowed to visit. This has been a huge decision for me but with how sick he was two weeks ago I do not want to risk him getting H1N1 at all if I can.
So looks like A and mommy will be having a lot of time here by themselves. Gets him out of therapy for a while too! Should be a nice little break.
I went to the clinic here in town with J last night but unfortunately the police had shut it down because there were so many people there to get it. I thought I was going to cry because this is something that I really really want to avoid at all costs. I will be trying to call my doctor on Monday and see if there is any way he can get if for J and I.
When we got home yesterday a lady from Motion brought a stander for A to try out. He looks GREAT in it and I think he really loves it. We have not tried a stander with him for probably three years now. Back then he wasn’t too keen on the standing at all which is why we never did order one. But anyone that is around A knows that he loves to stand up now so this will be good for him.
We haven’t had many kids for Halloween tonight compared to last year. Here is my little man in his costume:
Carving his pumpkin with daddy….
Being silly earlier tonight…check out the shirt daddy got him at the concert the other night!
Well I guess I have been slacking a little bit when it comes to blogging but I have a new hobby! Scrapbooking! I have so many pictures of A and have always wanted to scrapbook all of his pictures. However I never knew WHERE to start so I actually never did any. I would buy things when I was out if I saw something I liked for doing the scrapbook but that is as far as it went. Well Andrea, my brothers girlfriend came over on Friday and brought all of her stuff and I did my first couple of pages. Now I am hooked. I guess it is a good thing because I have about 400 pictures just from when he was in the NICU sitting around.
Anyhow, A hasn’t been doing the greatest for the past little while as most of you know. The reflux, the vomiting, the blue spells are all starting to really have me concerned and frustrated. We will be seeing his GI doctor this week and I really hope that she is able to get him better or figure out what is going on.
Thursday I did some major cleaning in A’s room. I got rid of a ton of clothes that he doesn’t wear anymore and cleaned out all of his drawers and his closet. I had laid him in his crib while I was doing this because he seemed a little tired and to my surprise he fell asleep! This is the first time EVER that he has had a nap during the day in his crib. It didn’t last very long, maybe 25 minutes but it was exciting.
Friday his PSW came over and I was just updating her on A having his big spell when all of a sudden I thought he was going to show her what I was talking about. He was VERY off colour and not doing well. I gave him a bunch of ventolin and eventually he was okay. He did not go into a full spell but he had me very scared. I called to order some suction catheters as the ones that I have here are from when he first came home and very tiny. So my dad went and picked them up and brought them over. I thought that maybe it would help him because he sounds so “gunky” but I was wrong. I went down one side of his nose and didn’t get much out. He had tears and was very upset and I just couldn’t bring myself to do the other side. Had I have gotten a lot out the first time then I probably would have but it wasn’t worth it.
He was very upset pretty much the whole entire day and was not himself. Even Dawn had commented on how he just wasn’t right. He is fine as long as you are up and holding him but he doesn’t want to sit, lay or do anything but snuggle. Dawn had him down on the floor playing with him and then all of a sudden he had a HUGE projectile vomit. It was all over the place. There was so much that it soaked right through his clothes and got it all over her pants as well.
Uncle S and Andrea ended up staying for dinner on Friday night and A had to be shown off in his stander…
Saturday A seemed a little bit better, but still a lot of vomiting. I just don’t understand how someone so little can throw up the amount that he does. It just doesn’t make sense to me. You can tell how much it is affecting him though because he isn’t AS happy as he usually is. His naps have also shortened in length and he usually wakes up crying. Definitely NOT the little man that he was.
Twice on Saturday he also went so off colour and had this look like he had just come out of a spell. It was really strange and I don’t know what to think about it. Daddy put him to bed after he had fallen asleep on him and the minute he was put down he let out this horrid scream and when I turned on the light he was very blue and had that look I was talking about…the end of a spell. I can’t even describe it, it is something that you have to see. So I immediately picked him up and got him calmed down.
I went out Saturday night late after daddy got home from work to get stuff for my scrapbooking. While I was at Wal-Mart I walked by a little boy with his dad. He was maybe 4 or 5 and he was in a motorized wheelchair. Well my tears just started flowing. I think it was seeing this cute little guy in the chair that made me realize that one day that is going to be A. I don’t know why it hit me then, I see people in wheelchairs all of the time. I think maybe it was because this little guy was so young. I don’t think it helped that he was with his dad and they were looking at tackle boxes. The boy wanted one. So they were trying to pick one out that he wanted. It was really sweet. I really wanted to talk to the dad but I didn’t get up the nerve to say anything.
Here he is asleep on daddy late Saturday night…
So today has been another crazy day. He was pretty much good all morning vomiting wise but then it started. And boy are they ever projectile. And just tons and tons of bile. We went over to grandma and grandpas tonight to have dinner and just get out for a bit. He had a few of his vomiting episodes over there with the last one really upsetting him. I was sitting on the other side of the room and knew from the sound of it that it was projectile. Sure enough it was. More bile. He even had it coming out of his nose and was crying as well. This is also something that he never used to do (cry). It was a good few minutes before he settled down.
I have also been noticing lately that his breathing is odd. It is like he is struggling to get air into him. Very long pauses…wow, I feel like it is the beginning again when we first brought him home. It really sucks because I feel like there is nothing I can do to help him. I hate to see him this way and I am getting frustrated with doctors as well.
Now some pictures from today…as you can tell lately from my pics, A isn’t the smiley little guy he was. Don’t get me wrong, he still has them in there but you can really tell that whatever is going on with him is bothering him.
My little man is now 22 months old! (As of yesterday) I cannot even believe that in just two months he is going to be turning 2 years old!
Yesterday A’s dietitian was here to weigh him. He is now 22lbs13oz! He has been gaining 15grams per day average which is great considering that he has been at 45ml/hour for a long time now.
So today Leanne came from the company that deals with all of the equipment for special needs. She brought over the superstand for us to try using with A for a bit! It was so exciting. I really am not sure which stander I like better though. The buffalo stand that we tried a while ago was more compact than this one and didn’t take up as much room. However this one I believe gives A more support. I think this really helps with him feeling more secure. With the buffalo stander you could tell that he wasn’t really liking it after short periods of time. This superstand really helps hold him secure. I hope that it will help him feel more relaxed and able to use his hands/arms more than usual. So we will see how it goes and then we will decide which one we want to order for him.
So the reflux issue is still a problem. He has been doing a little better with the amount of vomiting but not even close to what I would consider okay. I have also noticed the past week or so how much he drops his sats. Very frustrating when we thought we were past that. It is very obvious that it is the reflux that is causing this issue. I will be taking him to see his GI next week and I am hoping that she will be able to help him out in SOME way.
Grandma was here today and she had A holding some different things…
First is his little shaker…
Grandma’s granola bar…
Grandma’s banana…look at that curious face!
Open wide!! (The funny thing was he was licking the banana!) He didn’t gag or throw up! I was so excited that I took a bit and mashed it up and then tried to spoon feed it to him. Right when it went in his mouth he threw up. He sure did like just licking it though and getting the taste that way. But hey, it was a step for him!
I just LOVE this shirt on him! I bought it at Christmas for him and thought it would be way too big for him but it fit pretty good!
A in the superstand…what is that face all about?! (Might I add that those are just the most gorgeous blue eyes EVER!)
My smiling little man…this however is the only one in the stander with him smiling. I tried and I tried but nope he wouldn’t do it. Strange since he is normally the smiling king!
The collar around his neck is not part of the standing frame. We just received that today though for him to help with support. In the stander he cannot be straight up or even close really or else he pulls his head forward and it will fall down and he can’t lift it up. So this collar doesn’t let him do this. I found that it worked pretty good in the stander because that way he could be standing right straight and not have to worry about having his head flopping down.
Well today we are heading off to C-town for a surprise visit. I just thought before I left that I would post some pictures of A in his stander yesterday. He did 40 minutes at one time in it!! I was so happy!
We only have this stander until Tuesday and then we will be hopefully getting the other one to try next week some time. After trialing that one for about a week we will decide which one and get the order in. Hopefully it will only take about six weeks to get our own!
In the first two pictures he was watching TV….so serious! (Definitely a mommy trait that he has there!)
Well it has been a very interesting day. A didn’t get up until almost 10am and wanted to go back to sleep at about 12:30pm but I had to get him ready to take him to the ped. So things went good there. He got his RSV shot and did so well! He held his breath for about thirty seconds but he didn’t even cry. I talked to his ped about the vomiting and the low grade fever but he didn’t seem too concerned. With A I have learned how difficult it is to get answers on him. I asked him for a prescription for Zantac to add in to possibly help with the reflux a bit more. I really am starting to go crazy with all of the throwing up. The dry heaves and gagging is also taking its toll on me. It is so hard to deal with! I can’t even imagine how A feels when he is the one doing this all of the time. So we will be going back in a month to tell him if there is any difference with the Zantac. I am not too hopeful as it is only an H2 Blocker, but maybe it will give a little more relief. I know that the stuff he has been throwing up for the past month is very acidic because of the smell of it.
Anyhow today was kind of a crazy day on the Internet. There is a lot of talk still going on about what I discussed yesterday. However it has more or less turned into “would you change your child with special needs?” WOW what a debate that has caused! I was reading a blog that I do daily and it was saying basically how people are crazy if they say they wouldn’t change their premature babies life. Then it went on to saying how she hears parents of special needs children say that they wouldn’t change a thing, and she couldn’t understand that.
So I felt that I had to comment. I basically said that I was one of those moms who said that and I meant it. I said that A is who he is and if he were any different than he is now then I wouldn’t be the mom that I am and he wouldn’t be the child that he is.
I went back a while later and there was a comment back saying that she wasn’t disrespecting anyone but she just didn’t get it. Then it said that if I was comfortable watching A in pain then she was happy for me! I couldn’t believe it! I NEVER said anything about seeing him in pain. I said that I wouldn’t change him. Sure I wish I could take the pain he has away but wouldn’t any mom do that if she could?
Next a lady said she wondered if I would be saying the same thing when A is 21 years old. Give me a break! I think that my acceptance with A and his issues has brought me a lot further than some of these moms have EVER come with their child’s disabilities!
So I decided to post a question on the reflux parent group that I am part of. Of course it was directed at the moms with special needs kids. WOW, it sure has had a lot of comments! I would say it is half and half. Very interesting to me…I don’t think badly of anyone that says that they would change their children, so I don’t think it is fair to people to jump all over me about saying that I wouldn’t change a thing.
You know having A at 24 weeks, spending 227 days in the NICU, being in the PICU, finding out he has cerebral palsy, finding out that he is deaf, finding out that his eyes aren’t the greatest, having him on a feeding tube makes him the little boy that he is. This whole ordeal from June 10th 2005 until now has made me the strong mother that I am. I can’t even begin to tell you how much A has changed my life. How different I am as a person. How I look at life SO SO differently now.
Anyhow I think I have rambled on and on enough. I just get so frustrated with topics like this. How many times do I need to say that having a child with special needs is not a bad thing!??!
I am the luckiest mommy in the world to have this gorgeous, happy little miracle!!