Skip to main content

A New Kind of Alphabet Book: D

D is for Drain Sponge and Developmental Delays

Drain sponges are often used around the trach and the g-tube to soak up the excess moisture and gunk.  They are split so that they fit around it and stay put, which is rather convenient.  We never really used them around the trach because we didn't need to, but we did keep them around Abby's g-tube for a while until our GI said to just let the site breathe.  There's some argument as to the advantages and disadvantages of the drain sponges, but we don't use them too much.

Unfortunately, developmental delays are very common when you have a young child with a trach--especially if he or she is vented.  The inconvenience of the tubing makes it difficult to do tummy time, which is so important during those early months!  For Abby, she was also kept on her back for the majority of the first three months of her life while she was hospitalized, so that didn't help things either.

  Speech therapy is also extremely important, as pretty much every trach kid is going to need extra help with that.  Kids who have a g-tube will also need non-nutritive stimulation, which is when you massage the cheeks and stimulate the inside of the mouth to get everything working.  If you don't start that early, the child may develop a food aversion later on from lack of oral stimuation....which is no fun at all!

With kids who may have developmental delays, early intervention is the key!!!  The sooner your child is identified and begins therapy, the smaller the gap will be.  Don't wait to see whether your child will catch up.  Get him or her identified and let the therapist be the one to make that judgement call.  Early on in the hospital, I fought long and hard to get Abby the therapy she has.  I think that has made all of the difference in her progress.  I started range of motion exercises with her as soon as she recovered from her tracheostomy, and we've just worked our way up from there.  I'm so thankful for the therapists who took the time to teach me how to work with Abby.  I'm pretty sure the doctors just agreed to the therapy to shut me up.  It worked.  :)

We are now working with Infants and Toddlers, which is an early intervention department in the county, and they have been fabulous.  Both of our therapists have been so helpful and accommodating.  We can tell that they have high expectations of Abby and really care about her.

Comments

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 ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head.  It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!!  (Note the Lysol wipes in that last picture.  They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.   The whole night centered around this robot named Rock-o-Matic, or "Rocko."   This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers  Caleb did his share of singing and dancing too.  He knows m...