A day for thanks. Thanksgiving 2012

November 22, 2012

4 months and 6 Days old

Thanksgiving


What am I thankful for??? Where should I begin.....Today I am thankful I have a healthy daughter and a warrior for a son. A son that was only given a 10% chance to live from day 1 but is already 4 months old and showing everyone around him how resilient he really is. He has given me more to be thankful for in his short life than my previous 31 years of life. I am thankful for every beat of his heart and breath he takes. I am thankful I was chosen to be his mom. I am thankful for the other families with Trisomy children for leading the way for us because this is a difficult journey and without them Ameir may not be here today. I am thankful that Ameir's doctors see him as a child that deserves a chance because a lot of Trisomy children are discriminated against by the medical community. I am thankful for my online friends-most of whom I have never met in person, without your conversation and support I would go crazy. I am also thankful for my mom and sisters for helping me right now because I need it the most. I am thankful for all the people praying for Ameir, it is really helping him to thrive. I am thankful for my family. I am sure I have left something important out but the more I type the more I cry so I am just going to stop here ♥



I wanted Ameir to be home for Halloween it didn't happen, I wanted him home for Thanksgiving and that didn't happen either....I am not even asking from Christmas because I don't want to be set up for another disappointment. So we will be home when we get there and not a day sooner than HE is ready



Yesterday November 21, 2012 Ameir had a felxible bronchoscopy to evaluate his trachea and lungs completely.  Ameir has small airway openings, bronchomalacia, and tracheomalacia.

In English this means:
1. The opening to his lung lobes that should look like capital D's look like small o's with some being distorted o's.
2. The openings do not have the correct shape and cartilage component so they are a little floppy. The right upper lobe is by far the smallest opening,

and since the opening to his right upper lung is so small it almost closes completely on itself when he exhales. 

 3. The tracheomalacia is usually a "collapse" of the trachea, but for Ameir it is not a full collapse of the actual trachea but a weakness of the trachea cartilage that causes a muscular contraction that closes into the trachea and this only occurs on exhale and blocks his airway making it hard to inhale (finally a reason for the clamping down).

Also his right lower lobe is a little less pink than it should be and they took a biopsy and a fluid sample to see if he has a little pneumonia or something else going on. The results came back this morning and showed no pneumonia or bacteria.  The only other test pending at this time is to see if he is possibly aspirating or he has a virus. 

They have made a couple changes on the vent to see if that helps him and prevents him from "clamping down" which may actually be out of his control and not an anger issue as his mother thought :)

The good news is all this gets better with age and growth. His airways should get bigger and the cartilage stronger so he will not be on the vent forever.  

 

Oh yeah, speech therapy has been coming by daily to feed Ameir.  He loves food!!

Look at me getting so big :)

I also got fitted for my new hearing aids.