Playdate, Respirology & 23.9lbs!

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 🙂



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4 responses

  1. 23wktwins'mommy

    I am soo happy a Dr is looking into all of these issues for you. Isn’t it so sweet to see how kiddos respond to their Daddy? I love to see S&E interact with him. There is something so special about it.

    September 7, 2007 at 1:16 am

  2. Anonymous

    Glad to hear your Doctor visit went well 🙂-Vickie

    September 7, 2007 at 5:05 pm

  3. Miracles

    This is really great news! It’s about time someone took serious interest in Ashton’s health. Great pics of Ashton, Sophia & Alina. All three are adorable as always. It was great seeing you & Ashton today, we’ll have to do it again soon.

    September 7, 2007 at 8:40 pm

  4. C

    Shannon–What a gorgeous family you have. I’m glad you’ve found someone who will help advocate for Ashton. It’s tough to be the mama when no one listens, isn’t it?My little guy is getting a chair like Ashton’s–we’ve been so excited to see pictures of one in use!Blessings to you all,Carrie

    September 16, 2007 at 1:27 am

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