Family is the Best Medicine

Abs had another fun day with her cousins and Aunt Amy! They played in the playroom for much of the day, played s very silly frog eyes game, and also watched the new Beauty and the Beast that Aunt Amy brought for Abby!

This afternoon, Abby went to the pulmonary clinic for a pulmonary functioning test (PFT). Abby has had many over the years and is very used to these. She has been holding strong at 40% lung volume for several years, the last test being at the end of March.

Abby worked very hard today during her PFTs and was fully cooperative. Unfortunately, her lung volume was at 16% today. The respiratory therapist felt this was a very valid test. We haven't talked to the pulmonologist since the test, but we know that having lungs this weak will make her even more susceptible to germs and that a little cold could make her very ill. The resident attributed this sudden decline to the combination of the right VEPTR being removed and the sepsis attacking her respiratory system.

My germaphobic ways will be kicking into high gear, and we will definitely have to be even more careful with Abby. We are anxious to talk to the pulmonologist tomorrow to find out more about what this means for Abby.

Comments

Helena said…

I'm sorry. I wish I had words to help and encourage. I'll keep praying for you all to feel God's comfort and strength during this difficult time.

June 13, 2017 at 10:39 PM

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS. If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan. The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google. My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!! (a combination of all 3 is great too!) :) Notice that it's not to get famous and it never wi

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use. At any rate, I wanted to share what I did for the party! It will take a few posts, so stay with me. I'll start with how I did the favors. These are the goody bags I made. I just bought solid colored gift bags and matched scrapbook paper to each bag. Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks. I put a round magnet on the back and...voila! A magnet! (note: hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons. Yes, I know this guy has lost half of his leg. The others were already packaged and I didn't want to open one up just to get a picture. I used a Lego mold to make the crayons. Caleb put small pieces of crayon in each m

Life as a Leach

Search This Blog