You Are Not Going To Believe This!!!!
What a day!!! I have been smiling since about 5pm tonight because I am SO happy that someone finally is listening to me. Someone finally agrees with me. Someone thinks what I do. And this someone said it before I said what I thought! What you ask?
Well this morning the genetics fellow came in to talk to me. She took the full history of my health, my family, J and his family. Then we went onto A from pregnancy until now. She was very impressed about how much I knew about his NICU stay, what infections he had, the dates and just all of the issues in general. She then told me that she would be speaking to the genetics doctor and they would come back.
At noon daddy went in with A to have his ph probe placed. It was not fun at all but it will be coming out tomorrow afternoon and I cannot wait to see the results!!! The doctors are positive that they won’t see ANY reflux where I think different.
Anyhow the genetics doctor came in along with the fellow I spoke to and a resident. He was very caring and concerned from the minute he walked in. He told me that he had heard all about me and what a wonderful mother I was. Yep, I try to be I told him.
We then laid A on the bed and I took his clothes off. Within about thirty seconds of him looking at him he said “this kid doesn’t have cerebral palsy.” Hmmm wasn’t it not too long ago I was telling everyone how his CP just isn’t typical. How he just doesn’t present how he should. I was blown away. I then told him that the doctor that diagnosed him was the only one that would say CP. He said “of course…you have a former 24weeker that isn’t meeting milestones and you label them CP…it is the easiest thing for them to do.” WOW!!!!!!
He then told me that he thought of course that A had some effects from prematurity but said that with what he was seeing he didn’t think it had anything to do with it. OMG!!!! Have I not been saying for months and months that I am so tired of docs blaming everything on his prematurity?! His CP?! I thought I was going to burst into tears!!!!!
He also is very concerned about WHY A is deaf. He said that it isn’t normal to have a child come in after their first birthday and find out that they are profoundly deaf when in the past they had passed two hearing screens.
I told him that the day we came the docs asked me what I thought was wrong. I said reflux, airway and something no one has figured out yet. He looked at me and said “I think you are right mom. You are a great mother and I am so glad that you have fought how you have to try and get answers. I can’t promise you anything but we will do our best. A doesn’t have any features that make me think of where I can start but we will start somewhere. This must be so hard on you.” He then told me that they are going to involve metabolics as well to start with a workup on him.
I cannot even tell you how good this feels to hear what I heard today. To have someone tell me that they think something else is going on without me saying it first. I cannot wait until I see the complex care doctor tomorrow. Wonder what she will have to say?!??!?!?!??!?!?? Genetics was just coming because I bugged and bugged. She didn’t hesitate to tell us over and over that it would just be genetic counselling and that they probably would not end up doing anything more.
On the other side of it I am very scared. IF A ended up having something genetic that most likely means that the chance of J and I having another child is slim. I long for the day I can get pregnant again….have a big belly….enjoy every minute of being pregnant and then have a big fat term baby. This brings me to tears just knowing that maybe, just maybe I will never get to experience it.
Mothers know best…..that’s all I know. When are MOST docs going to learn this?
Bile Turned Formula…I Could Scream!
Well today was much better than yesterday but I know that there is something going on. A was up pretty early this morning and was cuddling with Joyce while I got ready to go to Toronto. Grandpa was here for 9am to pick all of us up. Daddy came today too with us so that was nice.
We got to Toronto a little late but not much we can do to help the traffic. The hearing test was just like the past two. I saw some definite reactions to some sound but not consistently. At the end the audiologist (Ruth) figures that his hearing is still at about the 90db range. The next time we go he will have his test with his hearing aids so that will be nice to see then. She also brought out the kit to show us the implant and the devices that go along with it. I can’t believe how technology is able to make this work for people to learn to hear. I am so excited for the day that he will get it in and then turned on. I think the hardest thing for me since finding out that he is deaf is knowing that he can’t hear his mommy talk. That really hurts knowing that I am not able to comfort him by voice like so many parents can do. So the day that he hears me I am going to be in tears, I know it.
So we got home after lunch and A was right to sleep. Daddy went over to his friends for a bit and I stayed here to clean up a bit and rest. A was pretty lethargic this afternoon and just wanted to cuddle after waking up. Very quiet and not smiling. I hate to see him this way.
I went out for a little bit tonight to grab some things and when I came home I asked J if A was sick again. (Today it has only been about five times all day.) He said yes and it was ALL formula. I feel like just screaming. I just cannot believe what I have to deal with all of the time when it comes to his issues and doctors. So I am going to have to phone his doctor in the morning to get him to order an x-ray to check it out. However if it isn’t properly in place then we are going to have to go to Hamilton yet again. I don’t think I will be able to hold my breath if we have to go there again. I am so sick and tired of dealing with doctors that just don’t seem to know what they are doing. Anyhow I could go on and on but I won’t!
I bought A this little chair tonight. It is from the Cars movie and he seemed to like it. I try anything to let him see the world the way that he should be seeing it.
WE’RE BACK!!!
Well I have received a few emails wondering if everything is okay and I just wanted to say yes! I was unable to use my Internet for a couple of days but I am all hooked up now! I had just over 100 emails and of course have missed writing in my blog daily.
So this week has been pretty boring anyhow. I still am not feeling the greatest. I went to the walk in clinic on Monday because of my ear and sure enough it was infected. I was started on antibiotics but have to say that I still cannot hear out of my ear and it still is irritating!
A is doing good. He has not caught my cold or anything! Thank God for hand sanitizer! He had his therapy with Monica (OT) on Tuesday and she is very happy with him. Being relatively new to A it is nice to hear considering she is just getting to know him. I was supposed to go to a parent group for children with special needs with my friend Vickie that night as well but we both weren’t feeling good enough to go.
Yesterday A had his teacher from the deaf school (Valerie) and I was irritated to no end! I don’t really know what it is with her, but I just can feel my blood boiling when she is here. I think I really need to look into putting it on hold with her until A is closer to getting into school. He also had Deb (AVT) come over in the afternoon to work with him. She was very pleased to see how much more interactive A is with his toys. He gets very excited lately with toys and really wants to play like a normal baby!
I also talked to her about him hearing certain things now. If you clap loud enough he will look and certain sounds I do he will look as well. She said it is learned behaviour and that he recognizes those sounds now. This will help when he gets his implant because he will at least have some sense of what sound is.
We also did a testing scale for A because of what I was told at his appointment last week with the specialists in London. The doctor was pretty much dead on. A has all of the requirements in the 1-4 month range and a few in the 4-6 month range. Definitely opened my eyes to where he “should” be and where he is. We have to take into account his hearing/seeing obviously so hopefully once he gets his implant we will be able to see all of the 4-6 month boxes checked and higher.
So something new this week with A is his vomiting. He never used to vomit unless he was sick and it seems to be a daily occurrence now. It isn’t formula, but instead is thick/white mucus or bile. It is a bit concerning to me because of how often he is doing it and how much there is when he does. During the night I also hear him dry heaving a lot and gagging during the day for no apparent reason. In a book that I am reading I read that vomiting excess mucus can be the body’s way of getting rid of something harmful. It then goes on to say that the body is made to receive a diversified diet and that there is something called the “rotation diet”. It requires to use four different formulas and change them everyday from 1-4 and then continue. Interesting to read about since I have never heard such a thing. But if you think about it, it really makes sense. A has been on this enfamil now for 14 months. The first six months he was on breast milk. That is a long time to be on one formula that is concentrated to 30cals as well. So when I see his dietitian this week I will talk to her and see what she thinks.
Well tonight we went to the Storm game because they were playing the rival team London. Those are always great games to go to. Storm lost in overtime.
Here are some pictures from the other day of A in his tumbleform chair…
A getting ready for the Storm game wearing his signed jersey!
Sitting with grandma at the game…
On the way home all smiles…
Yet Another Ear Mold!
Well another busy day to end off this week! A was up at 8:30am today and ready to play! I totally forgot that his teacher from the deaf school (Valerie) was coming and she showed up at 10am. I wasn’t the happiest person because I like to be ready for appointments, but it was my own fault for not writing it on the calendar. I guess you can’t always be organized!
I always find it so frustrating when Valerie comes to visit/work with A. She is so soft spoken and thinks that A reacts to things that I know FOR SURE that he doesn’t. So I have learned to start letting it go in one ear and out the other. I have actually been thinking of cancelling the teacher coming in for about a year or so. I just don’t feel that right now it is appropriate to have her coming in to work with him. They usually work more closely once the child is preparing for school to help integrate them into the system. And we aren’t even close to that yet. It is also very obvious that they do not work with such young children.
I also don’t like how they like to make you feel like you can sign with your child and things of that sort. With auditory verbal therapy (Deb), signing is an absolute no no. Something that I had difficulties in the beginning to accept, but now it does make total sense why they don’t like it. I don’t like feeling like Valerie is working against what Deb does. It just isn’t right.
So anyways, this afternoon I had to take A to get another ear mold! I really hope that this one actually works. It is pretty bad that in the three and a half months that he has been wearing hearing aids, the left one has never worked for us. I get so frustrated because I believe that A should be wearing them in ALL of his waking hours. And that is also what the cochlear implant team and his therapists say as well.
The roads were awful, and I almost turned around to come home after getting about half way to Kitchener. The car in front of me braked to try and avoid a car that crossed the center line and I put on my brakes and then I could feel the car sliding. I started to panic and then remembered to start pumping my brakes instead. VERY close call. However the car in front of me did end up colliding with the car that crossed the center line. My heart was in my feet and I had to pull over at the gas station and sit for a minute to get my breath. I figured since I had made it that far I might as well keep on going, so I did.
After his appointment I took him to Toys R Us because it is on the way home anyways and I wanted to find him a certain toy. However they didn’t have it so that was a bummer. I did get him something that he can spin that has beads in it and also The Little Mermaid movie. Ya, I know it is a “girly” movie but it is a Disney one and we have been starting to get them all for him.
Coming out of the store, I was VERY nervous! There was a ton of snow and as I wiped off the car it would just get covered again. So needless to say it was a long/slow drive home. Now I remember why I don’t like to go to appointments alone! A was really mad on the drive and wanted his soother. I couldn’t help him out so he screamed and fussed for about twenty minutes (maybe longer) before falling asleep. I think to get home it took me about an hour and a half. Crazy!
Well, Joyce is here tonight. Looking forward to that!
Just some pictures from today with Valerie….
Freakin’ Weather!
Well we were supposed to go to Toronto Sick Kids today for another hearing test but the weather made that a no go. I have to admit that I was very frustrated because I already feel like it is taking too long with all of their testing! The longer the wait the longer it will be before he can start learning to hear with his implant. I just sometimes feel that everything takes so long when it comes to A. I just wish people would move faster when it comes to helping him. In the beginning of this whole process they had told me that he would probably be implanted by February. Hmmm well that is just a few weeks away and now our last appointment is the end of March. And he hasn’t even had his CAT scan and MRI yet which I was told would be done in December. I haven’t even HEARD about the date yet. Agh…
I guess in the long run it will be okay because I am so caught in the middle of this whole implant ordeal. I mean I am kind of glad that the team at sick kids wants to make sure that they don’t rush with A because of his history. They want to be 100% sure that A does need the implant. I really feel sometimes like maybe A CAN hear but just isn’t listening. I know, I know it sounds strange but I have voiced my concerns and I am told that I am not the only parent to think this way. That makes me feel much better about my strange thoughts.
It is hard to deal with having a deaf child and you want to do what is best for them which in this case is a cochlear implant. Then the process begins and you start to question EVERYTHING. It is hard to think this way. I mean I was the only one that thought A couldn’t hear in the first place. That has to count for something. And now with the hearing aids there are times that I think that he hears me and yet other times there is nothing. It doesn’t help that he is such a smarty pants! I am glad that I have his AVT working with him. She has been doing this for so long that her opinion of him not hearing much if anything has to count for something as well. I guess just knowing that once they do the implant, there is no turning back and it makes it that much more difficult to handle. Once the implant is done it “ruins” the ear and if it was to NOT work, you can never go back to hearing aids or anything else…sooooo….
I think A’s tummy is a bit sore from having pulled out his tube and having a new one put in. It looks good but he isn’t happy when you move him certain ways. I guess it makes sense though that it wouldn’t feel the greatest. I can never believe how strong my little man is! I would never be able to go through half of what he has gone through!
As most of you know, A is a very happy boy. It isn’t hard at all to make this kid smile and sometimes he is just hilarious. Tonight when daddy got home from work he was doing this new thing with him and A would laugh before daddy’s finger even came down to tickle him. Oh how little it takes to amuse a child…
Every single day A’s personality is starting to shine through. Everyone that knows him has known that he has always been a happy/social butterfly but it is so much more than that now! I cannot get over how smart he is and how he anticipates things before they even happen!
Wow, this kid just amazes me….
Care by parent continued…
He Makes Us Believe.... 