Skip to main content

Medical Update

*  We finally started Abby on the new antibiotic she was supposed to take for the infection she has.  She was more than a week late starting because of delays from the holiday, hold-ups from insurance, and then our equipment company sending us the wrong pieces for the nebulizer.  We finally started on Tuesday, which was the day I was supposed to call her pulminologist to tell her how the medicine was going.  Needless to say, I held off a bit on that call!

The medicine is...hard core...to say the least.  Abby hasn't shown any negative effects from it, but we are supposed to wear a mask if we are around her during a treatment.  For the most part, I try to just keep my distance and hold my breath if I have to come very close to her.  It's very strange that I have to avoid breathing in the fumes that are treating the infection in Abby, but it is considered toxic to people who don't have this infection.  Of course, we keep Caleb very far away while doing these treatments!

We're 5 days into the treatment now and are noticing improvements.  I will be calling pulminology on Monday to let them know that things are getting better!  Hopefully, that will mean that they will let us start the vent weaning!!!!  The first step with that will be turning down her rate.  She's currently at 6 breaths per minute, so we'll turn it down to 4 for a week, then 2, then 0.  Because of the way they wean, it will be at least 3 weeks before they will even put her on the list to be in-patient at MWPH, so we are not planning to be there before Christmas.  I'm avoiding making guesses as to when we will go in, since I've already gotten my hopes up once and it didn't work out.  I told them to call me when they wanted us to come to MW... :)

This isn't exactly medical, but developmentally, Abby is definitely improving!  She rolls alllllllll over the place now.  There is NO stopping her!  She is also getting very interested in crawling and will do a few scoots if we make it worth her while.  Abby is getting more stable on her feet and is more willing to take multiple steps with assistance.  Slowly but surely, we are able to give her less support as she learns to do more on her own. 

She is communicating through the use of her communication book, and is really pretty remarkable!  She will tell us she wants it (we're still working on the "book" sign), and then flip through until she sees what she wants.  Her finger then lands on the picture with an emphatic whap!  It's pretty funny.  She's a girl who knows what she wants!

Comments

Debbie said…
Good update; glad you are seeing improvements for Abby and that the medicine was supported by your insurance carriers.
BTW, Abby's progress seems right on time (at least to me). Both of my boys were slow to crawl and one "never" crawled - instead pulled himself by his arms, lying flat on his belly but mostly rolled. And they both finally began walking at 13 to 14 months - every child is different.
Your girl is doing marvelous and I just love her personality and spunk!! You and Matt and your family support system are the best!!!
Continued blessings to all.

Popular posts from this blog

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