Its been almost two months since Natalie was diagnosed with SB, in that time we have done several tests, and seen several Doctors that are helping us understand SB better. We know what we have to do now in order to give her everything she will need. As soon as she is born she will be moved over to Children's to have surgery on her back to remove the bubble and close up her back. There is no cure for SB, just treatment. Natalie's lesion is L5 to S1, Dr.s don't know specifically where it is but that is where the MRI showed the lesion to be around. Dr.Weprin, Natalie's neurosurgeon gave us a good prognosis, again its just a prognosis but with that prognosis we have gotten so much faith and hope that it will all be ok. Dr. Weprin informed us that children born with SB have normal IQ levels, look normal, some even play sports, get married, and have children. Dr.Weprins prognosis was that she will most likely need ankle braces, or worst case a walker. Most children with SB also develop hydrocephalus but so far Natalie doesn't show any signs of that, we pray it stays that way, but fluid does start retaining on her brain she would also have surgery to install a shunt which will help the fluid leak down to her stomach. Another issue Dr. Weprin made us aware of is that Natalie might have uncontrollable bladder and bowel movements, the problem with that is that she might not be able to control it, as a baby that is fine the problems start arising as she grows older but again he informed us that their are ways of preventing that and surgeries for it as well. On July 15th we have an appointment with Natalie's developmental specialist at Scottish Rite we have so much hope he will also help us out so much. I am actually excited about this Dr. he will be a grand help on helping us prepare for her. He will be able to show us and pair us up with other parents dealing with the same issues and help us financially as well.
I don't know why God has done this to us, but the only option we have now is to be strong for Natalie.
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