It has been said to me that I seem to be pushing Finnian for every surgey going. Well thats not true. Every surgery that Finnian has had has been for his good. We did his cataract surgery in hopes that he would be able to see. But we have since found out its not his eyes that is the issue but the optic nerves and the part of the brain that tells you what you see. He has had 3 rounds of ear tubes put in to prevent ear infections and the main thing to preserve his hearing. He has had his anenoids removed and also his tonsils. Having the tonsils removed has made a huge difference for the better. He had his G-tube and honestly that has saved his lungs as well as we have been able to feed him and get fluids in to him when he has been sick and would not have been able to eat or drink. He had his hips fixed and what a difference no more screaming/crying. So it just shows how much discomfort it caused him. He had a muscle biopsy done to see if would tell us what might be wrong with him but it didn't give us any answers. The last surgery was the nissen and found he had a hernia that had not shown up on any scans so that was repaired while they did the nissen. So far so good he has not thrown up and he has been in great form since that was done. So every thing we have done has been for his good so if the VNS will help his seizures then I am for it. The kid is on so much medication and no one knows what the long term affects the drugs will have on his body so if by giving him a VNS will help may be to cut down on meds that I have to shove in to him well then I am for it. Most people will never know how hard it is to walk away and leave your child in the care of the OR team but we do
3 comments:
Hi Geraldine, I came across your blog today and just wanted to mention that I have 2 children very similar to Finnian. They also had cataracts, and have microphthalmia, optic atrophy, seizures, enlarged ventricles, small corpus callosum... They are now 23 and 24 yrs. old. We also live in NY- on Long Island. Has Finnian been tested for MICRO Syndrome? It is extremely rare, and not many docs are aware of it. If you have any questions, I will be happy to answer :)
Lori B
Hi Lori
Finnian has been tested for a whole battery of things and everything comes back normal.I did ask about the MICRO Syndrome but nothing showed that would lead them to think it but yet he has a lot in common with the syndrome. They have done metabolic testing and its normal too. I think the hardest thing is getting hats to fit he has been wearing 6mths old hats for about 2 years now.
We are almost neighbours unless you live way out the island. Thanks for checking us out
Ger
Everything was always normal for my kids too, skin biopsy included! Children's Hospital of Philadelphia will test for Micro Syndrome. Dr Dobyns from Seattle is an expert on Micro Syndrome, as well as Dr. Irene Aligianis in Scotland. They test for the specific Micro Syndrome genes. So far, they have discovered 3 genes for the syndrome. The gene defect for my kids was only discovered in 2009!
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