Well first I want to start this post off by saying that A has been wonderful since Saturday evening!!!!! He went for a nap on Saturday and when he woke up it was like he was back to himself!!! I didn’t even realize until about 10pm that he was not whining, not crying, not fussing! I can’t really say WHY things happened like this but I am sure not complaining.
I think it may have to do with me lowering his calories and doing the 10-8am feed and slow feeds in the day. He was always on 30cal/oz and I put him up to 37cal/oz when we came home. However I did talk to a few other moms that said their kids took a while to get up that high so I went down to 33cal/oz. The only thing that stinks is that he is on feeds throughout the entire night but I guess we have to do what works for him best!
Since Saturday night he has also not required oxygen at all and sits above 93. Of course he still has his ton of desats but at least he isn’t requiring the oxygen to stay above 90. I can’t explain this either but it is great. I had put him to bed Saturday night with the nasal prongs on, hooked him up to the monitor (no oxygen on yet) and he was at 97. I decided to leave him off the oxygen for a bit and for almost an hour he didn’t drop below 88 so I left him off it. And it has been that way since.
I do think there are going to be times that he requires oxygen but I am just so happy that it isn’t something that he needs every single night.
Physio and OT came on Monday and he did great. I really wasn’t thinking that it would work out anymore because of how he has been but it was nice to see him doing things that I haven’t seen him do in a while. He has been put on the waiting list for the seating clinic so that we can work with them to get him into a wheelchair probably within the next year.
It is so nice to see my little man back to the way I remember him. It has been a while. He isn’t without the gagging, odd vomit or blue spell but he is HAPPY and that is what matters to me the most!!!
Now for some long overdue pics of my little man!!
Yesterday I took A over to Alina and Sophia’s for a long overdue playdate. The girls birthday was on August 13th and I still had not given them their presents! It was a really nice day so we spent it outside. A was not the happiest boy though so things didn’t go as nicely as I had wished. But hey, that’s what happens sometimes with kids.
Sophia and A on the swings…he wasn’t sure what to think at first as you can tell but he then changed his tune…
There are the smiles!
Sophia giving kisses…
Alina woke up for some playtime however A wanted to sleep…
Haha way too cute…
Sophia opening her present…
Alina and her thumb!
Alina opening her present…
After leaving there we headed over to Mac for his appointment with a respirologist. I should add his FIRST appointment with one which is VERY odd to me considering that he was on oxygen until 18months of age.
Anyhow, I was not going to go because I am seeing a pulmonologist next month at Sick Kids but I did go. I am very happy that I did as well. She was a very good doctor and totally listened to everything that I had to say. She didn’t rush me and was very interested in A. I was basically sent to see her because of the whole fundo idea. However I am happy to say that she agrees with me that the fundo is not the route to go! WOO HOO someone on my side!
The first five minutes she spent just looking at him and watching him. Then she turned to me and said “you take very good care of him.” I didn’t really know what to say as I have not heard that from a doctor that I don’t know at all. I said thanks and she said “really, I can tell just by sitting here that you do. And even his shoes match his shirt.” LOL Yep that is me! He is a stylin boy, I can give myself that much.
She thinks that A’s reflux is basically all upper airway which means that a fundo would not help him at all. Hmmmm what I have been saying for months? Basically it is like he is pooling all of his saliva in his upper airway and then he will gag and it comes up. I have been saying for about a year now that I don’t think what he is vomiting is coming from his stomach. It is too thick and just doesn’t seem like it would be. The odd time he does vomit formula which is a big deal considering he has a gj tube but it is very rare for this to happen.
She also asked me who decided that not feeding him orally was a good idea. LOL Well long story short that was taken away from him when he was readmitted after only four days home from the NICU. I had NO say at all and this is when the nightmare began.
Another question she had was why he hasn’t had another scope of his airway done. The last time was February of 2006 while in the ICU. Well I had asked for one but I was told that it was unessary testing. What else can I do? I think she got the hint that I was REALLY frustrated with doctors and the care that A has received. I always feel like I am going in circles and it is so hard to keep fighting for what I believe in when I get no where. I had also told her that he had laser surgery on his airway in December of 05 and when he was readmitted the same surgeon/ENT told me that his laryngeal malaysia was back. Back??!!??! She was confused! Now I am even more confused than I ever was too.
Next question. Why hasn’t he had another echo? Hmmm well we had pre-op for an echo in March of this year. STILL haven’t heard when it is. I have called and I just get told that they need OR time and until something is cancelled he has to wait.
The echo came up when we were discussing his ALTEs-apparent life threatening events. Why she wanted to know has no one looked further into them? Hmmm I have been wondering that since they started happening. Being told by a doctor in ICU that what A does scares him and that he has no idea what to say doesn’t make me feel much better. Being told that every time these spells happen there is a chance that he will not come out of them isn’t helpful either. Being told to make sure that I know CPR doesn’t help either. Besides if the ICU can’t bag him and get air into him during a code blue then how the heck can I do it here at home?!?!?
I feel like I might finally be getting somewhere. I think that maybe, just maybe I have found someone that WANTS to help A.
A waiting for the doctor at McMaster…go figure, now he’s happy!
Laughing away at something…
A with Bonnie from the NICU. We had not seen her in almost a year and she couldn’t get over how big he was! She was an awesome nurse and very caring and true.
A last night before he went to bed sitting with daddy. A loves daddy time at night and is always so much calmer with him than me. I guess it is a nice break for me though 🙂
Well it has been a crazy week around here! A’s tube that he had placed in London just does not want to stay in the spot that they marked it and it is driving me crazy! He has had a lot of vomiting of thick mucus and a couple of times he had projectile bile. Really gross stuff and frustrating when I don’t know why. I can only assume that his gut is irritated from having the new tube placed.
Wedding plans! AHHH I feel like I don’t have enough time to do everything and it is still so far away. The date is set and I have three places that I am looking at next week. My mom and I are also going to a bridal show in September so hopefully I will be able to book the DJ and the photographer then. I am SO excited about this day and I can’t believe still that it is going to happen! J and I have also picked out where we would like to go on our honeymoon so that is just one less thing to worry about. This day has to be absolutely perfect and I know with everyone involved that it will be just that!
So A has been impressing me this week with yet something else that is new. He now will sit in his swing and look at his feet! There was also one night that he was actually trying to get them and it was so obvious my the determination in his face! I was almost jumping up and down as this is a HUGE step if he was to start touching his own feet! I couldn’t catch a picture of it, but here he is in the swing…
Monique his physiotherapist was here the other day and she just cannot believe how well he has done over the summer. He is getting so much stronger with pulling his head forward, holding his head up, standing nicely, sitting nicely (supported) and just everything! She also told me that I am in the 1% of parents that she sees that are totally into their kids, advocating for what I believe is right and the knowledge that I have. So that was a very nice comment from her. I guess it just isn’t something that they see all of the time.
So today I took A to meet Darcy Tucker at the Future Shop that just opened here. For those of you who don’t know who he is, he plays for the Toronto Maple Leafs. I had also written him a letter and wasn’t sure that they would take it, but they did. My mom told him that it was a very special letter from Ashton and he smiled and said okay. We stood in line from about 10:45am until 1:30pm to meet him. It was raining when we first arrived but then it cleared up which was good.
Waiting patiently with grandma…
Smiling at grandpa…
Still waiting patiently, but almost there!
The line moved quickly because he was just signing his name…no pictures with him or anything specific being written…
Looking at A…
Signing A’s hockey stick…
Grandma telling him about the letter…
Grandpa getting another stick for me signed…(my letter is under the sunglasses!)
Well today started off pretty hectic for me because after J went to work I fell back asleep and didn’t wake up until the phone was ringing. Grandma was here! And it was almost 10am! A was still sound asleep….WOW is all I have to say about that! Anyhow it was then that I found out that Andrea was coming over. My mom had recommended her to me to be a worker for A. So I was a little frazzled because I had just got up, hadn’t showered and most importantly never had my coffee yet!
Anyhow things went okay. Andrea was great. I was kind of nervous because I have not had any luck in the past with having to meet people that want to work with A. It is very hard to trust anyone with him. I was also a little nervous because my mom had mentioned how she was only nineteen years old and I know most people that age would not work with him well. I was impressed to say the least. She is going to school for becoming a developmental service worker and wants to eventually be an EA. I believe that it takes someone special to do that kind of work so I think that she just may work for us!
I had to lay down this afternoon while my mom was here because I was so tired. I have not been feeling myself for the past couple of days. I cannot believe how many times this year that I have been sick! I really can’t wait until the nice weather is here because I am so sick of the cold and not being able to take A anywhere.
A slept this afternoon too. Got up just before 4pm, and boy was he happy today!
He was in his swing just laughing away at something!
And my favorite picture of the day!!!
I can hardly believe it that A is 19 months old today! I look back and wonder where the time has gone. I remember the day he was born like it was yesterday. The hospital stay felt never ending and he sure gave us some good scares. But in the end he has come through it all and time has just flown by! It is even harder to believe that in just five months he is going to be 2 years old!
Grandma came over this morning and daddy and I went and did some stuff that we had needed to do. I had some stuff to return to the mall and had a ton of bills to pay. We got a new fish for our tank too. A loves watching the fish all the time. The first thing he looks for in the morning is the TV and if that isn’t on then he is looking at the fish. It is kinda cute.
A is pretty much himself today. He had a poop that was actually not even loose at all. So I guess his tummy is getting back to normal. Joyce was supposed to come tonight but she is still sick so she won’t be coming until next week. (Joyce, I hope you are feeling better soon!)
Yesterday I forgot to write my cute story about A. I had him in his swing and had put on one of his Baby Einstein DVDs. So I am in my room cleaning up a bit and then walk out down the hall and notice that A was smiling like crazy at the TV. So I come around the other side so he doesn’t see me and rewind it a little. And to my surprise it was a baby in the bath on the TV that he was smiling at. And I mean a FULL smile, almost laughing. I was so excited that he knew it was another baby! So I got out my video camera and then played it back a few more times and sure enough he smiles at the baby again! It was so cute! I was almost in tears because of the fact that I knew that he understood what he was seeing. It is the little things like this that make me stronger. And it is the simple things that so many parents don’t even think of. It is something that is expected to happen as a child grows so they don’t think much of it. Whereas to a mom of a preemie these things are amazing!
It is often a topic of discussion with other preemie moms that I talk to. And I really don’t think that a lot of people think the way that we do when their children do things. I mean I am sure that they are happy but when it is something so simple I don’t even think they think of it. A holds a toy for two seconds and I am excited. He sits in his bumbo chair and holds his head up for ten seconds and I am excited. When he gets his fingers to his mouth I am excited. I could go on and on.
Anyways tonight we went over to grandma and grandpas for dinner. Then J and I went and did our grocery shopping before picking A back up and coming home.