A Quick GI and Orthopedic Surgeon Update

Ramya saw Dr. Silber, her GI doctor, a few weeks back.  Though she is still not even close to being on the growth charts, she has gained a little weight and is following her own little curve.  YEAH!!!  I am not worried about her being on the charts, I was just worried about her lack of weight gain at all, and am so thankful to see she is gaining on her own little curve.  She is officially up to 32 pounds (at 6 1/2 years old)!  This is great news!  Dr. Silber is pleased with her growth and

On Thursday, Ramya saw Dr. Segal, our orthopedic surgeon.  He is very pleased with how the muscles in her core and legs are developing.  He thinks if we continue to work with her and help her get stronger, she should be walking with AFOs (instead of her KAFOs) within a years time or so. 

We are still working on getting her to use her legs for walking.  She wants to do it all with her arms, and not use her leg muscles at all.  We are also working on balance and core strength.  It is slow progress but she is really coming a lot way!  She has a very deeply ingrained fear of being dropped, which makes the walking thing a bit harder, but we take it a day at a time.  Her trust is growing and her muscles get stronger and stronger every day.  Right now I focus more on standing and sitting exercises with her, instead of walking, but I know once those care muscles are built up, the walking will come right along.  I am very proud of how far she has come! 

Here are some updated photos of my beautiful girl.  I can't believe she's almost been home a year now.  It's such a blessing to get to be her momma!

 

Oh Me, Oh My We Saw GI

Yesterday was our appointment at PCH's Scottsdale office to see GI.  We saw Dr. Silber because we had heard great things about him from a friend.  Our main goal was to talk about Ramya's bowels because we are still trying to see if she will need a cecostomy in the future, or if she can adequately manage them on her own.  The general surgeon, Dr. Bae, believes that she will likely need the cecostomy, and I agree. I can clean her out just fine, but she has many accidents.  Though she doesn't care right now about them, I know eventually she will.  The cecostomy would help keep her from having so many.  Before we decide on that, though, we want to exhaust our non-surgical possibilities. 

Dr. Silber asked us a lot of questions to find out as much as he cold about her history, what we've seen during her 6 months (AH... 6 months!!!) home with us, where she is at developmentally, etc...  He spent quite a bit of time with us.  I went in prepared to argue why I don't want to give Ramya miralax.  I know that miralax is the go-to for bowel issues, however, I find probiotics, George's Aloe Vera Juice, and Senna when needed, works very well.  I don't like that long-term use of miralax in children has not been adequately studied, and I do not like putting PEG in my kiddos bodies, even though it is not supposed to cross the blood/brain barrier.  Anyhow, I was told by Dr. Bae that she would likely need to try miralax, and most of what I read is that kiddos with SB take a daily dose of miralax, so I was anticipating a struggle.  Thankfully Dr. Silber was totally on board with our approach and saw no need to try and change it.  The only thing he would like to do differently, though, is to give Ramya Ducolax suppositories (well, half of a suppository) once a day to see if we can clean her out a bit more in one setting, and therefore keep her from having so many accidents. 

We talked about her weight gain, as Dr. Bae had put it in the notes he sent over, and he asked me if I wanted to put Ramya on an appetite stimulant.  I told him that Ramya had grown about 3 inches taller in the past 6 months and has also gained 2 pounds recently.  I am thinking she's just one of those kiddos that grows up, and then out, and then up, and then out.  First came the height, and now a bit of weight gain.  I told him I'd rather wait and just see how she does, and he agreed that we could do that. 

Dr. Silber noticed that Ramya's iron levels are pretty low so he'd like Ramya to take iron supplements for a few months.  He thinks because she was so deficient for so long, her body is still struggling to catch up, but that after a few months, it should be fine and stay fine.  He doesn't see it being an ongoing problem and doesn't think that she will need supplementation past a few months.

It's hard to add another doctor to our list of frequents, as Ramya now sees the pediatrician, orthopedic surgeon, neurosurgeon, endocrynology, and GI frequently, and Madi now sees the orthopedic surgeon, pediatrician, urologist, neurosurgeon, and neurologist, but I can't complain because my girls get AMAZING care and have doctors that truly care about them.  I am so very thankful for that! I can't wait until the day when they can see the doctors at the same time, and at the same place.  That will be a life-saver.  Right now Madi is on our insurance and also long-term care and can only see her doctors out of CRS.  Ramya is on our insurance, but we can't apply for long-term care for her, as we are still waiting on everything to be 'official' in Arizona so that she can be give our last name.  Until then, she sees the exact same doctors (for the ones that they both see), but at PCH.  So, for now, we can't coordinate.  The good news, though, is I can sneak in questions to the doctors about the kiddos they aren't seeing, and save myself a call in to the office. 

In other news, Madi got her new HKFOs today.  She was sooooo very excited.  I'll post about that soon, and show some pictures :).