Anxious about Thursday

I am so anxious about Thursday.  I am trying not to get my hopes but I am truly hoping the the Neurosurgeon has something, anything he can give, tell me, or direct me in the way of Thomas' long term care plan.  I went back tonight to my original resource on how I was even able to find this clinic.  I had posed the question to a message board of people who all suffer with KFS.  "How do I find a KFS specialists?"  This was the response I got:

Allison, if you can find a KFS specialist, we all want her..or him!! Because KFS is a rare disease, you already lose 90% of the doctors who "would be" interested. Also, because it involves the spine, the spinal cord and numerous organ anomalies, what you find is that you need a team of doctors, and that is a lifelong process unfortunately too , because as your son's needs change, the doctors will too.

So first, you want a neurosurgeon to watch him. The best neurosurgeon (or neuro-spine) is one who understands spinal cord injury.

I would recommend an SB clinic if you find out that the lumbar deformity he has is actually SBO. Then you are in! There are over 200 excellent SB clinics in the country and I can help you find one that will work for you. The great thing about a peds SB clinic is that they have a multi-disciplinary care team, so if you need P.T., urology or other services, it is there.

Otherwise, I recommend you go with a physiatrist, but haven't seen many peds physiatrists around. They have the ability to kind of watch the whole KFS process and refer to specialists as needed.
Once you have ruled out organ anomalies (heart, lungs, immune system, kidneys and ear are the most common), then you are good to go. Otherwise, you will need those specialists at least initially.
My recommendation is to get a hold of those lumbar X-rays and see if SBO is present. If so, then that is your easiest and best plan for long term care. Even in the absence of SBO, you might still be able to get into an SB clinic because they do take spinal cord injured patients in peds clinics. KFS is somewhere between both conditions.

Let me know if I can help more! 

Thankfully, she gave me the right wording to do the search and was able to find the clinic here local in Atlanta.  They have KFS listed on their site as a condition that they treat so hopefully they can provide me some more insight into Thomas' case.  His level of condition and possibly a prediction of prognosis.  I just need one person to look at the whole picture and give me an idea of where we are, what we should be doing, etc.  Always learning, always searching and never giving up!!

Tomorrow I will play with my boys and smother them in kisses and Valentine's!!  I hope each of you have a wonderful day tomorrow with a sweetie or not.  God loves you just as you are right where you are, his Grace is not earned but simply given to you as a gift.  We never feel deserving of God's Grace but it is ours for the taking.  Remember that God will always fill the places in your heart that no one can at times when you feel alone, he wants you to ask him.

I would also like to ask for special prayers tonight for a dear friend of mine, Ms. Judy.  She had extensive surgery today needs healing and comfort.  Thank you so much.

Happy Valentine's Day!! Remember always You are loved.

Thomas enjoyed White Chocolate fondue!

 

 

 

1 Peter 5:6-7   “So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor.Give all your worries and cares to God, for he cares about you.”