Yesterday we ventured down to Boston Children's Hospital to have a long awaited orthopedic appointment with the wonderful Dr. Melkonian. Those of you that have been reading awhile probably remember our not so pleasant prior experience in which a doctor declared she needed surgery in a few years but no other interventions even though she constantly fell. Well this doctor actually asked us about how she functions, watched her walk and run with her brace on and off and actually *gasp*, touched her. This doctor, and hospital was so awesome that it almost completely washed away the bitter taste in my mouth from the other guy, almost.
We had a rough time getting out of the house and completely forgot the camera. Oh well, it was just Aidai's first subway ride! Maybe we'll get photos of her 2nd ride. She evidently gets motion sick after about 2 hours in the car cause she threw up in the car, same as last time headed to Boston. I can't figure out why now after making it on the long trip to Almaty but I am just sooooo glad that she didn't throw up in that car. Although, if we had been riding in the other car there would have been a perfect person to aim at and I don't mean Maria, Ellie, Jennifer or the driver...
So we trekked down to the subway and then took the subway for about an hour to the Children's Hospital stop. The hospital is really beautifully done and colorful. We ate at the cafe there and it had alot of choices. I hope to never have to spend many days there but atleast it seems to be a somewhat decent place for the families and kids that need to be there alot.
So we spent quite a bit of time there. The doctor looked over the neurology paperwork and the paperwork from the physical therapist as well as the x-rays from the other ortho appt. After a thorough examination he determined that Aidai will most likely need surgery but not in the next 4-5 years. The main issue is her left leg which is the leg she currently has a brace on. He agrees that she has cerebral palsy and that her right foot or left hand might be affected as well but, as others said, too early to tell.
So the current plan is to start what is called serial casting in order to stretch the tight muscles and heel cord. This should loosen things up so that she will actually be able to put her heel down instead of walking on her toes. On May 12th she will get a cast put on her left leg from just below the knee to her toes, or maybe covering her toes, not sure. She will be able to walk on it, they will give her a special boot to wear. Two weeks later we will go back and they will take off the cast, take measurements, and put a new cast on. Then, two weeks later, the cast comes off and she gets a new brace to wear. So a month of the cast followed by 6-8 weeks with the brace. Then we go back to the doctor and see if they need to cast again, if she needs to keep wearing a brace or if she needs no correction. Luckily, the doctor will be doing these visits in Exeter, NH. which is a little over an hour away. The first one is at 7am, I think Aidai will be making that trip in pajamas, perhaps I will too...
So we are looking forward to this treatment with high hopes. We are glad that we can get it over with before summer is in full gear since it means sponge baths, sweaty leg, etc. It would be great if she didn't have to wear the brace anymore but we aren't aiming for that. We just hope she can walk more normally with the support of the brace cause we are concerned for her safety since she falls and runs into things so much.
Thursday, April 23, 2009
Boston Children's Hospital Appointment
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7 comments:
So glad this was a better experience and there's lots of hope for wonderful things!
Ohhhh, I would have been so proud of her if she would have vomitted on that snake who shall remain nameless!
Best of luck with the treatment!
BTW, did you take the train in from Manchester?
Hey Bill, Elizabeth & Aidai,
I just want to let you guys know that I have still been following all of the posts, just been a bit quiet based on alot of work here in the last few months AND the fact that I am now following you on Google's Reader now - makes it easier to know if you have posted anything, but it makes it a little more work to post myself.
Anyway, I just wanted you to know that I am sooo happy that the Boston trip was worth taking and that I keep all of you in my prayers everyday. :)
Keep up the great work Aidai, hopefully with the casts and the braces that will come you will be able to walk much better soon! :) And Bill & Elizabeth, like I have said before...You two are great parents and Aidai is one lucky little girl! :)
Hugs from Houston,
Casey
Heheh..you're so bad! But I agree with Mala I'd have bought her an icecream for that. I'm glad that they took such good care of Aidai (and you).
Mala - I didn't know a train from Manchester was an option, we drove to Alewife and then took the subway. I would have driven all the way in but we wanted to give Aidai a subway ride.
Lori - thanks for keeping in touch, I read your blog daily but I'm horrible at commenting cause I check on my blackberry and it is a pain
Casey - your continued support is awesome, thanks!
Hilary - I would have loved to do it but didn't want to take the opportunity away from Maria to ride to Almaty with him
Bill & Elizabeth,
My DD, who is now 10, had the serial casting done to lengthen her calf muscles when she was 4. She did great. She was a toe walker, and it really helped her. We had casts on both legs, and her toes did stick out. She had the walking boots and got along just fine. The only thing we didn't like was having to sponge bathe all that time! We did the casting for 8 weeks.
Hugs,
Mary from TN
waiting on our precious son from Kyrg
Mary - thanks for letting us know your success story! We really hope this makes a difference for Aidai. It'll be a pain but we need to take the chance, it is a relatively minor thing to do when the results could be so wonderful!
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