Wednesday, July 16, 2008

A Day with the Doctors

A last-minute appointment for Isabel with a new (to her) doctor of physical medicine & rehabilitation turned into a full day with the doctors yesterday! My sister Jenn already had an appointment for Kendra with a pediatric ophthalmologist and Juliana needed shots, so we decided to make the trip across town together. We left her house at 2:15 in the afternoon and didn't return home until 7:15 in the evening!

This was the second PMR doctor we've seen since arriving in Chile, and I was VERY impressed with her. The first doctor spent little time with Isabel before sending us off for x-rays and leg braces, whereas this doctor gave us almost a full, uninterrupted hour of her time! She examined Isabel from head to toe, observing her posture, gait, strength, bone structure, muscle tone and range of motion. Overall, she was extremely pleased with how well Isabel is doing and amazed, considering the prognosis of a neonatal brain injury such as hers.

Unfortunately, I learned that the leg braces we had fitted and made for Isabel are not exactly right for her. Although we had brought her AFO's to the fitting, what the company created for her were DAFO's. We didn't even know there was such a thing, to be perfectly honest, and so we were surprised at the difference in these braces but didn't realize we had actually purchased the wrong type altogether. The doctor asked me to get the braces re-fitted and try them out for another week or two, then return for another evaluation. If necessary, we'll have to get AFO's made instead. (From a purely financial standpoint, hopefully not, since insurance does not cover orthopedic devices!)

The doctor did say that it is still important for Isabel to wear the braces at least six hours a day. If she were to stop, the progress she has made in regards to toe walking and in-toeing would little by little become undone. The doctor also said that Isabel needs to resume PT (2x/week) and OT (1x/week.) She noted that Isabel's hands are especially weak and this will become more of a hindrance to her as she moves forward with her schooling.

And finally, the doctor recommended that prior to moving to Iquique, Isabel receive Botox injections in her legs. This is a common treatment for CP but one we have been hesitant to pursue unless absolutely necessary. The purpose of it, as I understand, is to "help control problems with muscle tension" so as to allow normal growth to occur. Otherwise, the parts of Isabel's body that are not affected will grow normally while her legs do not, causing a lack of uniformity in her body and possibly creating new problems in the future. We will need to do some research on this before making a final decision.

Isabel is our "miracle child," there is no doubt - we thank God for her and the tremendous progress she has made, and seek His wisdom for helping her reach her full potential in every way we can!

7 comments:

Erin lee said...

hey steph, i'll be praying for you guys and these decisions. and isabel has to be the most determined little girl i know she is going to go far in life!

Anonymous said...

Hey Est, as you know I work with CP children on a daily basis. Many of them receive botox injections & most parents seem to agree that it does help their child. It is to compliment the ongoing physical therapy as it will help relax the muscle so it is easier for the therapist to work with. The biggest drawback is that they are painful (after all it is a shot, sometimes multiple) Many parents & doctors choose to sedate the child for the procedure due to this...
ang

Alisha said...

We'll be praying for you guys - making decisions, caring for your sweetheart, etc. Love you!
PS - I would echo what Angie said and add that it is not a one-time treatment. Deciding to do it this time may help you decide if it really works for her and is worth the "shot".

Anonymous said...

I dont know anything about this but I know we at the end have to trust the doctor the Lord has brought to us. Isabel will not only do well she will be a very strong girl like her tia Monica. Monica

Katie said...

I had no idea she had any of these issues. I never would have guessed. Your a awesome mom, I love reading your blog.

Rebekah Hubley said...

Please let me know what you find out about the botox. Jonas's foot, leg, and hand are all smaller on the left side. His foot is mostly affected, and his aceles tendon is really tight, but getting better each day! He is only affected on the left hemisphere. What was Isabella's pre-birth trauma? The docs are thinking that Jonas had a stroke in-utero, but will never be sure... I wish you were closer and I could ask you questions over the phone! What is a good site for CP? thanks for all of your help!

Rebekah Hubley said...

Oops, it's Isabel, not Isabella...sorry! :-)