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Friday, July 29, 2011

Finley Spina Bifida Update

First I had to start with a cute picture just for the heck of it!!!! I love this picture-- pure joy on Finley's face-- LOVE IT!!!



OK, so we have some updates of where we are with Finley's Spina Bifida (SB) and out course of action. We had Finley's first SB Clinic yesterday. SB Clinic is where all major specialties that deal with SB-- Rehabilitation, Urology, Neurology and general Peds-- are all in clinic in the same place and you are in a room and they each come in one after the other to do their assessments. It is a long appointment (they tell you about 4 hours) but for us, since we were the last appointment of the day, it was only about 2 hours. Clinic is to monitor progress and to watch for changes. Most SB kids go to clinic during their growing years every 6 months to a year. They get baselines and then check to see if there is any deterioration that may be caused by being tethered or for whatever reason. For us, this was our first appointment where they were looking for baselines and also to see if they suspect tethered cord.


So we started with the Rehabilitation DR who immediately started asking us all kinds of questions about if Finley catheterizes and we said no. Then she said-- oh then she diapers-- we said no. She stopped and looked at us and we said she is 100% potty trained and she just kind of stared at us like it was totally unexpected. Then she moved onto the bowels and asked about our regimen. We said we didn't have one because she is 100% bowel potty trained also. She again just looked at us with a dumbfound look. She then scrambled for the results of Finley's renal ultrasound to see if she had any problems with her kidneys-swelling, etc. and of course there was nothing-- a perfect ultrasound and her whole renal system looks perfect. The rehab DR was just so funny. She had Finley walk and did some stuff with her feet but she said she could not believe how good she looks and said that they NEVER see kids like Finley and from a rehab perspective, she is 100% PERFECT!!!! We were thrilled!!!


Next came urology. He was great! Nice awesome DR who was just as shocked with how high functioning Finley is. The Dr. does want us to get 2 very important tests done that are not fun for Finley but he feels that these are necessary to get baselines and it will help us to determine if, in the future, she shows decreased bladder and bowel function we can point to the possibility of tethered cord. The first test is an X-Ray of her bladder. It is not comfortable and poor Finley will hate it but it is necessary. The second is some Uro Dynamics test. Not sure why they have to do that but again, it will help us in the future so I have no issues putting Finley through some temporary discomfort in an effort to help with diagnosis in the future.


Next came neurology. This was the DR. we have known for a while and the one we love!!! There has been some indecision with neurology because Finley's initial MRI showed her to be exceptionally tethered but she shows ABSOLUTELY NO SYMPTOMS of being tethered. So really, tethered cord is a clinical diagnosis- not radiological- therefore, according to Finley's lack of symptoms, she currently is possibly not tethered. So, the decision for now is to do nothing. Follow her in clinic and watch for possible symptoms, but for now do nothing. I did ask about having plastic surgery look at her large lipoma on her bum and they said they rather wait a bit and then maybe have plastic surgery involved later. They said if they have to go in and untether her in surgery later down the road then they would take care of removing the lipoma then, but for now, they do not want to bother it- which is not what I wanted to hear. I guess I wanted them to say that we could look into removing it. I know it is kind of vein but I really worry about Finley becoming self conscious about her "bump". It is not obvious to most and with most of her clothes you don't notice it, but it is there and a few kids have made comments this summer since she is in a bathing suit so much. They are not mean comments but they are often "what is that bump on her butt". Just kid curiosity, but I don't ever want her to feel bad about it. I don't know. I will get over it and maybe sometime down the road we can get look into getting it widdled down. Back to the neurologist-- he thought Finley was amazing and could not believe how agile and fit she was! YAAAAAA!!!!


Last came the director of the clinic who we had seen once before. He echoed what everyone else said and even brought neurology back in the room to watch Finley climb up the chairs because he was so amazed by her agility. They both just stared at her in amazement and even said to each other that maybe she doesn't even need to be followed by clinic. Of course she will be followed but they were just amazed and said that they rarely see a kid as high functioning as Finley.


Overall, a wonderful clinic visit. They ordered a few tests which we will do in the next few weeks or so and they said she is clinically doing amazing! So, no surgery for now. YAAAAAA!!!!!! That is our update. Our little nimble miracle is just as good as can be! We could not be more thrilled!!!












11 comments:

  1. Wonderful appointment! (even if it was only 25 hours long :)

    Ruby

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  2. Wow! So happy to hear the great news! Way to go, Finley!

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  3. Such great news Christy! I know what a relief these types of meetings are!!! Praise God for your little miracle!

    Blessings,
    Diana

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  4. Great news! Our son has post operative lipomyelomeningocele and we just returned home from China with him 1 month ago today! We visited Riley Children's Hospital SB Clinic in Indy on July 19-20th and they performed renal u/s, urodynamics and full body MRI. He is perfect!!!!!!!!!!!! Amazing little miracles!!! I was referred to your blog by Tera @ September Sweeties blog. She lives near us and is using the same agency. So happy for you!! Please feel free to email me on the urodynamics test - or at any point! Nice to know parents with similiar SN kiddos.

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  5. Amazing!! So, so happy for Finley and for your family! Beautiful and healthy! What more could a mama want!?

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  6. God is so good. These little pumpkins are fighters and precious miracles. So happy for the great update.

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  7. Great news!! She is your little miracle and so cute to boot!!

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  8. That is awesome!
    We are having that uro-dynamics done Monday along with a couple of other things. Hoping for some good news myself!!

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  9. Totally thrilled for you all that the clinic went so well. Great news all around!

    Susan

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  10. That is GREAT news Christy!!!!

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  11. I've been "lurking" on your blog for a while, but finally had to comment to say "Yay!" So glad the appointment went well and that Finley is doing so brilliantly!

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