Aiden’s Update – August 17, 2016

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“What does it mean to be a superhero? We’re all fighting for the better good. But, at the same time, I think what stands out is, as superheroes, you don’t give up; you don’t surrender. I think that’s what makes a superhero.”~ Ellen Wong

Our Super Hero

Today we head back to the doctor for Aiden’s blood pressure & weight monitoring. I shared last week the struggle with slow weight gain, but I am feeling quite optimistic about improvement this week, even more than the previous week. Part of that optimism comes from a change with Aiden’s feeds. As I mentioned before, he is doing really great with his bottle feeds and currently uses Dr. Browns bottles.  When Aiden started with these bottles his formula was thickened gelmix, after realizing the #1 nipple made him work too hard to eat, we moved to the #2 nipple, which worked much better.  When Aiden was taken off gelmix and allowed to take his formula straight, we went back to the #1 nipple as a precaution (we did not want him to ingest too much at a time and chance aspirating).  After some time, we went back to the #2 nipple when he showed us he was ready.  Over the course of the past couple weeks, it seemed as if he was working really hard to suck and get milk from his bottle. Aiden would take the full (4) hours to finish a 4oz bottle and that was with drinking and stopping periodically, one ounce here and one and half ounce there and so on.   We decided to upgrade the nipple again, going to #3 and what do you know….that fast flow did the trick.  Since last Thursday, he is taking those bottles down and I mean with the quickness.  Right now Aiden is finishing bottles ahead of schedule and drinking 3-4 oz. consistently in one setting within minutes.  So now we know that he was in fact working too hard with those bottles/nipple, which could very well be one of the reasons for the slow weight gain, he may have been burning more calories with all the extra effort and work.  We head to the doctor and just a few hours and I am really excited to see the progress he has made.

Yesterday was a big day for Aiden, as it was his first visit to the meet his new Physical & Occupational Therapist.  I couldn’t help but smile when we met his PT, her name is Debbie which was also his PT name while in the NICU at Primary Children’s Hospital.  Since this was the first meeting, we went through his history (the reason why we’re at therapy) and she did an assessment.  Debbie went through the roles of both the PT & OT, what they will focus on and work on when his sessions start.  We discussed Aiden’s diagnosis and just as most others agree that we have encountered, although his MRI showed signs of Hypoxic Brain Injury (Hypoxic-ischemic encephalopathy also known as HIE, brain injury caused by oxygen deprivation to the brain) he does not show signs of this injury.  Impairments associated with this type of injury can include epilepsy, developmental delay, motor impairment, neurodevelopmental delay, and cognitive impairment. Studies show that the severity of impairment cannot be determined until a child is three to four years old (some say two years old), but I have such a hard time believing this.  In my mind, I cannot accept the idea that seeing Aiden now without any issue, no signs of delays or impairment, but later on in two or so years have that change.  Call me bias, call me crazy, call my faith insane…but I believe that Aiden won’t have any of these issues.

Aiden & PT

Going back to the PT assessment, I’m trying to figure out how to get our little guy to warm up to others.  I shared last week how Aiden is such a happy baby and does great with us, but we have noticed that he is very particular about his circle.  He will interact with others as long as he is with us, but the moment someone picks Aiden up, he immediately pokes out his lip and cries those big ole’ crocodile tears.  Poor Debbie was not the exception, because he was calm for a moment and soon as she started with him the lip started to stick out and his face completely changed (the warning) and the tears started to flow, accompanied with his voice.  I am hoping and praying that he starts to feel comfortable with them, because we will be going to PT/OT twice a week with 30 minutes spent with each therapist on those days (1 full hour on therapy days).  I am so happy that after searching, being placed on waiting list for treatment (for a ridiculous 6-9 months) and being disappointed with centers, that we finally found this therapy center.  Aiden officially starts on Friday; I look forward to seeing the progress he will make with their help!

Starting PT (2)

When I saw this onesie (in top pic) and saw this quote (above), I knew it was perfect for our little Pint-Size-Hero! God has indeed blessed our tiny hero with the Biggest, Strongest, Fighting heart….giving up, surrendering or having fear has never been an option.

Love & Blessings~

#AidenStrong #CDHawareness #CDHwarrior

To READ Aiden’s Story – Love, Hope and Faith for Aiden

On FaceBook: https://www.facebook.com/LoveHopeFaith4Aiden/

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