Special Request

Hannah's seizures, jumps, jerks, or whatever you want to call them have returned worse then ever. She is jumping most of the night and even a little bit before she's actually asleep. The last 2 nights she has had what seem to be night terrors or something. She is uncontrollably crying, but is not awake. While she is doing this she is jumping so hard her crib is shaking. When the jumps first started coming back the neurologist told to me to go back up on her seizure med that we were trying to take her off of. I will call him again on Monday, because something is just not right. Please pray that God will take these episodes away.

Hannah really seems to be making improvements. Her OT was so pleased with her head control yesterday and that she crawled across the living room with help. Sometimes Hannah's hands were actually open. She also ate a whole bowl of oatmeal and kept it in. That's a long way from taking 3 bites and screaming. I just wish that people that don't see Hannah that often can see the little improvements and not just look for the big things. Hannah's shunt is coming out on Wednesday. Please pray that it can stay infection free and never have to have another one.

Finally Some Good News!

I took Hannah to the opthomologist on Thursday. He was very impressed in the progress she has made. He said that she doesn't have to wear the hated patches anymore (at least for the next 9 months), that her astigmatism has not changed when he would have expected it to to get worse, her eyes are still slightly crossed, but that surgery is not recommended at this time. He kept making comments about how alert and aware she was. It made me feel good to finally have a DR's appt go well.
On Tuesday my mom and I took Hannah to the neurologist. Although we were glad to hear that she does not have Tay Sachs or any other white matter diseases, we were a little disappointed to hear him say "her white matter is atrophied, which is just common in disabled kids." I sware most of there specialists have forgotton that this is somebody's baby and not just a chart. He did say that there seems to be no evidence that Hannah's problems are genetic in case we ever want to have another child. He is going to start weening her off seizures meds since they are now saying she doesn't have seizures.
After we left his office, we stopped on a bench outside to give Hannah a juice bottle. On the very first swallow she turned blue and eventually passed out. I have seen her turn blue several times, but this was by far the worst, and the only time she ever passed out. Fortunately, we were across the street from Scottish Rite, so we took her the ER. For once her larynotrachia malaysia came in handy, because we got to to go the front of the line. The put her in a trauma room first because there were no regular rooms. Once they suctioned out a big glob of mucus she started breathing better. However, she was still kinda out of it and eventually slept through a chest xray. I'm a little concerned that she actually had a seizure, but the hospital dismissed it as choking and sent us home. She was still a little lethargic Wednesday but seems to be fine now.
Thank you for continuing to remember this precious baby in your prayers. We know they are helping.

Ok so I know its been a while. Thank you to all of you who have asked about a new post. Hannah seems to be making little improvements every day. She is getting stronger with her head, she's looking to both sides, is becoming more vocal, and is trying to use her hands. During OT last week she held onto a Ritz cracker, brought it to her mouth and took a bite.
I've started taking her to guy that does a program called neurolink. The program is a mixture of kinesology, chiropractor, and a few other things. I won't go into all he did, because most of you will think I'm nuts. However since I took Hannah on Friday she is definitely tracking with both eyes, so I will be interested to see what other changes occur over time. When you see Hannah let me know if you see any improvements, its always nice for other people to see the things we are seeing.
We are so excited that Hannah's shunt is coming out on March 4th. Please pray that this surgery will go smoothly and there will be no infection and that the subdurals never return. This week Hannah will see the neurologist on Tuesday and the opthomologist on Thursday. For the neurologist please pray for wisdom for him to do the right tests to figure out about the white matter of Hannah's brain. For the opthomologist please pray that he will get a clear picture of what Hannah can and cannot see. I may talk to him about putting her in glasses, because the patches irritate her skin. I guess that's all for now. Thank you for remembering this precious child in your prayers.