It is Devin's Birthday!!! He is 5 years old. Where does the time go. We made a HUGE deal about his special day. We got him ready for school, he was all set to let everyone know it was his special day :) We will be having a party on Saturday...hopefully it won't rain.
We had Caleb's Neurology appt today. Dr. Carney is absolutely wonderful. He is so positive. We went over Caleb's MRI. Yes, there are big problems because there are parts of his brain that aren't fully developed. It is a complete brain just not developed adequately. He also has Dandy Walker Malformation. This all basically means that his development is slow (which we knew), and it means that he will continue to have seizures. Dr. Carney expresses it as, it is what it is and we will handle it. I love it. He said that Caleb has great eye contact, and is pleased that he coos, smiles and laughs. Caleb will have a problem with tone bc that part of the brain is deficient. So we need to continue to work with pt/st/ot. There is a concern with the tuft of hair he has at the bottom part of his spine. There is a 40% chance with Dandy Walker Mal. to have neuro tubal issues. Trisomys also often have the same issues. There is a soft spot where the tuft of hair is and he wants to look at it through ultrasound. We may not get a great image of it but the next option is an MRI that is done under sedation. We are so angry that this wasn't done when he was under before during the his last MRI. We asked the Dr's at the hospital if we could have that area imaged. They said they don't do that it is done through ultrasound. We have 2 doctors that said differently. Anyway, we have to move forward now. There are a couple of concerns with this spot bc Dr. Carney says it is possible for him to get meningitis. My heart just sank and my head just about exploded!! There are also other things that can be a problem but usually not until later in life. So we just wait to get the ultrasound and go from there. Dr. Carney agreed that there may not be anything that we can do in our situation but we won't know that without knowing the full extent of what is going on.
That's a shame that the MRI wasn't done when the opportunity was there. While it may not do Caleb any good now, I hope someone enlightened the person who gave you the erroneous information so that this kind of thing doesn't happen again to someone else. :(
ReplyDeleteHi, I found your blog through Trish/Makily. My daughter has Partial Tri22, not ES like Makily, but another form of Tri22. Anyway, I wanted to let you know that my daughter has a tethered spinal cord, and that she is undergoing surgery for it at the end of this month. We take her to Mayo Clinic in MN, and her ped neuro surgeon said that an MRI is really the only way to image that area to get a clear pic, and that even if you do it, on a small child it can be inconclusive. So we are going to do surgery, not knowing for sure if it is needed, but also not wanting to wait to see and regret it. I said all that to say this...Caleb is such a beautiful guy and you are obviously a great mom and dad. Keep digging for information when appropriate and you will make the right choice for him! Congrats on his 6 month birthday :)
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