I know it has been awhile, but the month of December has just flown by. We had a lovely holiday. Hannah got a lot of neat things. Her two favorites are a doll that Grammy made that says "Grammy Loves You" and an Elmo that Poppy adapted to use with a switch. Today with her vision therapist Hannah was really into "showing off" all her new things. She was really reaching and pushing different buttons. When the therapist asked Hannah where her Elmo guitar was she rolled over and looked right up at it. That was very cool. Her therapist took pictures of a lot of her toys on a plain background so that we can start introducing pictures for her to make choices with. This is all in hopes of helping her communicate better.
The visit with the neurologist didn't go as well as I had hoped. She was very pleased with Hannah's progress, however she was very busy and left the room before I got to ask her most of my questions. She did order a sleep study after I showed her video of Hannah's jumps. Before the video she was trying to tell me that she didn't think the jumps were seizures, but after the video she uped her seizure meds and ordered a sleep study. It will be on January 10th. She wonders if the jumps have something to do with Hannah's O2 levels. Although that has never seemed to be a problem, we will just have to wait and see what the sleep study says.
The neurologist also wants me to take Hannah to a new GI. She feels like the arching is still GI related. When I called the ped. to get a referral for the GIs that the neurologist had suggested, she wasn't really happy with any of them. SO I'm really wondering what this new GI will say. Hannah goes to him next Wednesday. Please pray that this GI will be nicer then the last one and will really try to help Hannah. I don't care if the arching is neurological or GI related, I just want someone to figure out a way to help Hannah stop doing it. Please pray that I will not be frustrated and that I keep pressing until I find someone who will actually help her.
May God Bless you and Yours with a Happy and Healthy 2010.

Polar Express and Other Things

We had a great Thanksgiving at Ben's Parents house. The best part of the trip was taking the kids to ride the Polar Express. Both kids loved seeing Santa, riding the train, and getting a bell from Santa's sleigh. When Santa came in Hannah was very vocal to him, almost like she was trying to tell him what she wanted to for Christmas. In general Hannah is becoming more vocal and every now and then it sounds like she is making actual words. We have heard her "say" her name, Mom, I'm, and Hi. We are encouraged that maybe she is making progress in this area of development. However, on the flip side her seizures, or jerks or whatever they are when she sleeps have returned with a vengeance. She is jerk almost constantly even a little bit before she goes to sleep. She is waking up several times during the night screaming. I'm not sure if these jerks are hurting her or scaring her but they are definitely affecting her sleep (as well as mine!). She is also staring off more often and 2 of her therapists saw her do this this week and both asked if it was a seizure. When she comes out of those she's really fussy as well. Hannah will see her neurologist on Friday the 11th. Please pray that Dr. Weissman will really try to figure out what is going on and not just keep uping her meds. I really feel like there is more going on with Hannah then just CP, but nobody is really looking for the cause of all these symptoms. Please pray that Dr. Weissman will order new tests and really look at what's going on in Hannah brain. Thank you for your continued prayers.

I know it has been awhile, I'm sorry. We've been really busy with all kinds of stuff. We had a great time at our church's Trunk of Treats on Halloween. Hannah was dressed up like Dorthy and I programed her talk switch to say, "There's no place like home." At the end of the night, Hannah was tired and ready to go home so she proceeded to hit her switch over and over again. I truly believe she was trying to get her point across.

Hannah continues to make slow but steady progress. Her PT rigged up a neck support that really seems to be helping her to hold her head in mid line. Each time I put it on her Hannah's head seems to get a little stronger. Last week in PT Hannah sat up with her support on. She continued to hold a tripod sit for 3 minutes with almost no support from the therapist. It was a proud day for mama.

Hannah continues to act like a little escape artist to get out of her AFOs (braces to help her feet say in alignment) and out of good position in her wheelchair. I'm taking her back to have her AFO's adjusted again tomorrow. Please pray that they can get an inescapable fit this time, because they do her no good if she can get them off. I took her this past week and had the wheelchair adjusted and will take her back in a couple weeks when some new parts come in for it. I guess that's all for now. Thank you for remembering our little girl. We know your prayers make a difference in her life.

AMAZING

I have been praying for quit some time now that God would reveal to me that He in fact does hear my prayers about Hannah. Several nights ago he revealed Himself to me in the middle of the night. It was a very personal experience that I haven't shared with a lot of people. However, tonight God revealed himself in a way that I just can't help but share. When I picked up Joseph from the nursery at church he showed me a picture he had drawn. He said "This is Hannah and she's walking all by herself with no help.... She's going to do this in about a year." It was all I could do not to cry right then and there. I asked him if someone helped him draw this picture or gave him the idea and he said "It just came into my brain, so I did it" Now for those of you who don't know Joseph that well, he is not usually big on drawing pictures of any kind nor is a huge fan of Hannah a lot of times. This just further proves that it had to be God that put this into his brain. We are thanking God for and believing this promise that our sweet little girl will in fact walk without help. Please pray that we can be patient while we are waiting for God's timing.

Eye Patches...AGAIN :(

I took Hannah for a check up with her eye Dr today and now he wants to patch the opposite eye from last time. I asked him if that was common to switch eyes and he said it was for kids like Hannah and the goal is to make them equal. Hannah hated the patches last time, and always managed to get them off and had trouble with them breaking out her skin. Please pray that she will tolerate them better this time and keep them on for the 3 hours a day she is supposed to wear them.
We are also a little concerned about insurance. We found out today that Coke will no longer have Aetna insurance which has been so good for us since Hannah was born. As long as Hannah continues to receive medicaid, insurance doesn't really matter, but we still haven't heard that she got Medicaid for this year and they are always trying to cut Medicaid. Please pray that the new insurance will be at least close to what we had with Aetna and that she will continue to receive medicaid to cover the costs after insurance.

Hannah did so well in therapy today. In OT she was really holding her head up well and did well in her crawler, but speech was amazing. Her speech therapist told her to raise her hand, and Hannah did. We just kinda looked at each other like "did she just follow our command." So we tried again. She told Hannah to kick her feet... AND SHE DID! Not only is she following commands she knows the difference between her hands and her feet. We are praising God that in such little ways He is showing us that Hannah definately has things going on in her mind. Thank you for your continued prayers. I know they work.

Just a quick update. Joseph is over the flu and would have gone back to school if it weren't for this crazy flood that has closed all the roads around here. Hannah seems to have been spared from the flu. Thank you all for praying, I know it helped.

Fun stuff and Not so Fun stuff

We just returned from wonderful vacation to Walt Disney World. The whole family had a great trip. Hannah really seemed to like all the lights and got to ride on some of the rides. She really seemed to enjoy the Spectromagic Parade and meeting most of the characters. The characters were so good to us and really fawned over Hannah. Big brother Joseph, enjoyed celebrating his 5th birthday there and getting to ride on the monorail (and other rides) and buy a toy monorail for his souvenir. My mom and dad went with us to help out. I think they really enjoyed seeing Disney through Joseph and Hannah's eyes. Disney takes such good care of children like Hannah, so it made the trip very easy and fun for the most part.
The other good thing is that Hannah had a CT scan today to check to make sure the subdurals were not coming back. Her neurosurgeon said everything looked good and he would see her in two years unless something came up. Although it will be sad not seeing him because he is our favorite Dr, it is a blessing that that chapter seems to be closed.
On a not so fun note, big brother Joseph has been diagnosed with Swine Flu. He is feeling really rotten. His ped., pretty much told me that she would be very surprised if I didn't come down with it too. Please pray that Joseph will get to feeling better really soon and that I, nor Ben, will not get it so that we can take care of him. Hannah is staying at a friend's house, but she was already exposed to it last night, so please say an extra big prayer for her that she can somehow avoid getting it. It could be really really bad for her. The Dr said that if she showed any signs at all to bring her in immediately. Please pray for healing for Joseph and protection from it for Hannah and the rest of the family.

We've been really busy with lots of doctors appts and things lately. Hannah got her wheelchair in time for Disney. They have to do some modifications to it but overall its pretty good. She seems to tolerate it pretty well. She is getting her AFOs (ankle foot orthotics) to help her with her balance and toe curling on Tuesday. I'm sure she will take some time getting used to them, but I know they are supposed to help. We saw her orthopedist for the first time yesterday. He is really nice and has good bedside manor. He said that he is not concerned about her neck turn, he said that it is either a reflex that she hasn't out grown yet, or it is tied to her reflux. He said it could be a combination of both. Her PT is concerned that Hannah is "frog-legging" and that something may be wrong with her hips, but he said that they actually like to see that because it is a defense mechanism to prevent dislocating her hips. He did take xrays just to be sure. He said that her heel cords are really tight, but that the AFOs and being in the stander will help with that. So over all good visit. Only bad note is that Hannah has a double ear infection which is not good. Hopefully she will be all better in time for Disney. Thank you for all your prayers and concern. I can't believe that Hannah will be 2 yrs old next week.

New Neurologist

We finally met the new neurologist today and I think maybe we've finally found a good match for us. She is very direct and a little blunt, but she spoke to both Hannah and me like we were human beings. She was decisive and took action right away. She ordered an ambulatory EEG because she wants to see the EEG for herself and not just the report. Her old neurologist would not do an ambulatory one b/c he said she was too young. In an ambulatory EEG she will go and have the machine hooked up to her and then she will come home with it for 24 hrs, then have it taken off the next day. She also ordered lab work, wrote a prescription for Hannah to get AFOs and increased her meds all on the first visit. I really like that she is taking action right away and not having this wait and see approach a lot of Hannah's DRs have. The thing I like most of all is that in the middle of her exam of Hannah she looked me straight in the eye and said "Its in there, Mom. Its there, we just have to help her get it out." Finally a professional can see that there is a lot going on in Hannah's mind she just doesn't have a means to express it. She really encouraged me to join Lekotek which is a group that helps with communication through play, music, and computers. I called them when I got home and there is a 3 to 6 month waiting period, but once it goes through it will be a good thing.
On another note Hannah gets her wheelchair on Tuesday, that's kind of a bitter sweet thing. I know at least when we are out it will be a great help to me, but it will be hard to see her in it. Also until we can move, (which we've had absolutely no traffic on our house and we lost the one we wanted) it is not going to be much of a help at home. I may not even bring it in the house.
I guess that's the news for now. Thanks for your continued prayer and support of our family.

So we finally got that "results" of the EEG Hannah had a few weeks ago. I put results in quotations because they don't really tell us a whole lot. Basically what they said is that she has two kinds of jerks, small ones and large ones. The small ones seem to be part of an abnormal sleep pattern and are not seizures, most but not all of the large ones are seizures and there is no way to tell them apart without an EEG. So they upped her seizure meds. At least they finally officially call them seizures and this will be good information for the new neurologist. Please pray that this new neurologist will really take an interest and trying to get a clear idea about not only Hannah's seizures but her over all development as well.
In case you didn't know, we are trying to sell our house and move to a more accessible house for Hannah. The stairs are starting to get really hard to manage with her. We are by no means giving up on the idea that Hannah will one day walk, but we know that even when she learns to walk stairs will continue to be hard for a long time. The market is not great right now, so we really need God to show up in a mighty way. We need to get pretty close to our asking price and we need our house to appraise for that much. Please pray that we can sell our house for what we need to sell it for and can get into a better suited house quickly.
On the positive side, Hannah is working really hard. She is continuing to make steps with someone holding her up and tonight for the first time ever she was able to move herself in the crawler. Hopefully now that I know she can do it by herself I can get her into it more often. Thank you for remembering our little girl in prayer. We know that prayer is a mighty power in Hannah's as well as our life.

STEPS!!!!

Yesterday in PT Hannah took 25 steps with the theropist holding her up! This is huge because this means that even though she doesn't have to strength to walk on her own yet she has the drive and the know how. Please pray that she will continue to make these steps and that she will gain the strength to one day walk on her own.

The EEG

Hannah I came home from the EEG yesterday. She did much better this time then she did in December. She slept for longer periods of time and I think they got a good picture of her jumps. On Tuesday the Dr said that he had only reviewed one section of tape and could neither rule in or rule out that these jumps are seizures. He said that her EEG is abnormal and that there are some spikes that would indicate seizures, but that these spikes don't always correlate with when she is jumping. He said that it is possible that a part of her brain that is too deep to be truly picked up by the EEG is seizing. He plans to review all of the tape and we will have results in about a week or two. Although, I'm doubtful that they will actually be able to identify what's going on, I'm glad that they actually saw what I am seeing at home and agree with me that whatever it is, it is not normal. Hopefully, this latest EEG will give the new neurologist some information to work with when we see her in August. Please pray that they will get an idea of what these jumps are and how to control them. Please also pray that this new neurologist will be a better fit for us.

Getting Ready for the EEG

Not much has been going on lately. We've been really busy with VBS and other fun events, which is great fun, but it means that Hannah doesn't get to have as much time working on her skills. She did have her first speech therapy last Thursday. My MIL stayed with her and really didn't have much to say about it so I'll keep you posted on how that's going.
We go in Monday for her second Video EEG. I will start weening her off her meds on Thursday. Please pray that she will not have anymore or different seizures while she is off, but at the same time the doctors will get a clear understanding of what she is doing. Please pray that Hannah will sleep a lot because she only jumps in sleep. Pray that she will tolerate being in a bed hooked to wires for 2 days. Pray that I will have patience and wisdom when I'm dealing with the doctors. Pray also for big brother Joseph. He's been acting out a lot lately and has been really clingy. He's supposed to spend at least one of the nights while we are in the hospital with some good friends, and go to VBS at their church. However, he's never spent the night with them and he's never been to their church so this may be stressful for him. He came home tonight from my dear friend Pam's house where he usually begs to spend the night at, so obviously he's got something he's dealing with. I also want to thank God for Pam. She is such a blessing in my life and I could not have made it through all of this with out her. Thank you for praying over this little child and our family. It means the world to us.

Hannah had her six month OT evaluation yesterday and had made good progress. Last time she her average score was in the 1 to 3 month level for fine motor skills, with her highest score in the 6 month range. Yesterday her average score was in the in 4 to 6 month level, with her highest score in the 9 month range. Her OT said she just can't get over how much progress Hannah is making. She is really working hard on head control and is reaching for things now. If she could keep her hand open so that she could grab things she would be even higher. It is nice to see measurable progress.
Hannah will be admitted into Scottish Rite on the 22nd of this month for another 48 Hour video EEG. This is the same thing she had right before Christmas, but this time they will take her off her seizure meds. The doctors are still trying to determine if the jumps she does when she is sleeping are seizures or not. Please pray that she will sleep and that they can get a clear understanding of what is going on. The last several days her jumps have gotten more frequent then they have been. Please pray that whatever these jumps are, are not doing more damage to her brain. Thank you for all your prayers. I know they are helping.

Last week was a rough week, because Hannah is teething, had an ear infection, and then got some weird fever virus that really wiped her out for a couple of days. She seems to be getting better, but still has a nasty cold like the rest of us in the house. She also saw her current neurologist last week. He said he did see some improvement in her development and really acted like he cared about trying to figure out about her seizures or jumps or whatever they are. He plans to admit her to do another video EEG in the hospital sometime this summer, but this time he is going to ween her off her meds so they will get a true picture of what's going on. If he always acted this attentive I may not want to switch. However, this video EEG will give the new neurologist some good information for when we see her in August.
This week, despite still not feeling great Hannah has been doing really well. She had a great PT session today. She spent the whole hour sitting up. She actually pulled her own head up 10 or 12 times instead of letting it drag behind. She also prop sat for 10 to 12 secs at a time. That's huge progress for her. Even the PT who's usually pretty guarded with her comments kept saying how impressed she was with Hannah this week. Yesterday she had her speech evaluation. I was really concerned that she wouldn't qualify, but SHE DID! The therapist said that she could tell Hannah has a lot going on in her mind that she just can't express yet. She said that's where the speech therapy will come in. I really liked that the therapist already has a plan of action for Hannah. She also had an evaluation this week with her GA Pines instructor. The instructor made the comment that Hannah can do a lot of things, its just that there is a long delay in her processing the incoming information and then getting her body to respond. She suggested teaching every one who deals with Hannah to give her a good 5 to 10 seconds when waiting for a response such as waving. She also suggested that we talk to Hannah like she's Helen Keller. Although she's not blind, it will really help her with speech and other areas to have her world described to her. So when you are talking to Hannah point things out to her giving great details. EX " Look Hannah there's a dog. He's black. Feel his soft fur. He says woof woof..." Thank you for your help with our sweet little girl and for your continued prayers for her and our family. We know that God has a huge plan for this little one.

Hannah is working so hard on head control. Although it is exhausting to almost never let her lay down it is really helping her get stronger. On Saturday we took both kids to Snellville Days. Joseph wanted to ride the ponies. While they were loading him, we were debating whether to hold Hannah on one. Riding horses is supposed to be really good theropy for kids like Hannah. The operator of the ponies overheard us and allowed Hannah to ride for free. Ben held her body and walked by the horse while it went around. Hannah did really well holding her own head. I think when she's a little older I may look into horse theropy for her. It was so nice to see her doing something that typically developing children enjoy.
This week she will see the neurolink guy and the current neurologist. Hopefully this will be the last time with this neurologist and then we will see the new one in August. Hannah will also see an orthopedist in August. Her therapist is really concerned with Hannah's tilt and turn to the right and with her curling her feet. Please pray that things can be corrected with theropy and Hannah will not need braces to correct them. Thank you for always remembering our little girl. You are a blessing to our family.

A praise!

Hannah had an awesome therapy session today. She was drinking from a sippy cup, was introduced to using a straw, and was tolerating a stage 3 baby food with pieces of rice, carrots, and peas. Not only was she eating the food... she was holding the spoon and with some assistance was bringing the food to her mouth, opening her mouth and bringing her mouth and head down to get the food off the spoon. This is huge progress from taking a few bites and screaming. She ate almost the whole jar. Her OT was really impressed at what she was doing. It seems like Hannah is using her arms and hands more purposefully. She still has to overcome the excessive tone, but what she did today is a great reminder that cognitively she is aware of what she wants to do, its just hard to make her body do what she wants it to. Another example is that Hannah is starting to wave at people. When you tell her to wave she will raise her arm, which her therapists all say that any purposeful, appropriate movement to what you want her to do is a step in the right direction. Please pray that she will continue to make these steps.

We have been really busy lately. Hannah's therapist is really encouraging us to never let Hannah lay down on her back except when she is sleeping. So, we have been trying every different position you can imagine. Its really hard work for both us and Hannah, but it is helping her hold her head up longer. We broke down and have started the process of getting a wheelchair. On one hand that breaks my heart because its almost like admitting she may never walk. But on the other hand we are running into more and more places where they don't allow strollers but do allow wheelchairs, so for now it seems like the right thing to do. It takes 6 to 9 months to get a wheelchair and she will have to have one by the time she turns 3 so that's why we've started the process. She will go on April 23rd to be fitted for one. We are hoping that she will have it by the time we go to Disney but that will a miracle if that happens.
I took Hannah last week for her 18 mo check up and things look pretty good. She is finally starting to grow into her size and is now in the 50th percentile for height and weight. Her head is down to the 70th-90th percentile when it used to be up over 95th. Her ped. was very impressed at the progress she's making. She said that she is much more alert and is starting to self correct her position (mostly her head) and correct her eyes when they wonder. The Dr said those are really good signs of mental ability. We are hoping to have her evaluated for speech therapy soon. Hannah is starting to make more sounds and so we are hoping they can use those sounds to help Hannah make choices and eventually words. She will probably start by using switches, pictures and other augmentative communication devices to express herself. I guess that's all for now, please pray for peace for us as we come to terms with the wheelchair, pray that it will come in time for Disney and also she still has the rash on her face, please pray that it will go away before family pictures on Friday.

Well its been a week since the staples came out and there are still no signs of infection. Praise the Lord!! She did come down with a weird rash this week but the ped. said it was a contact rash and the ointment she gave me is working after two doses.
I took Hannah for another session with the neurolink guy. I can tell a difference in her turning to her left more and her eyes are undenably better. However, I'm cautious to say I see improvements because I want to make sure they are really there and not just because I want to see improvements. If you see improvements please let me know. Our biggest prayer concern right now is her digestion issues. We really thought the goats milk was helping her reflux and she wasn't getting constipated, however this weekend she was was doing both really badly. I'm beginning to see a coralation between how things move through and how bad she refulxes. But what do I know I'm just the mom.

Hannah is doing really well with the shunt out. Her incision looks good so far. Her staples will come out on Monday afternoon. Please pray that she will stay infection free, as this is our biggest concern right now. Hannah's OT was really encouraging that she could tell a difference in Hannah looking more to the left as well as holding her head up in general. With so many of her professionals not giving much hope it is so nice to have someone that can see improvement and keep me working on and holding on to the goal that Hannah will get better. On an interesting note I had Sesame Street on for Hannah while she was in her stander. I never new if she really was aware of it or not, but today when I turned it off before the show was over Hannah started to fuss. As soon as I turned it back on she quit. This confirms to me that she's a lot more aware of things then her body allows her to express. Thank you for your continued prayers. Those prayers keep us going.

Hannah's hostpital visit update

Yesterday, March 4th, Hannah had her shunt removed at 7:30 am in the morning - of course the time during the surgery was the longest time - but she came out, woke up easily and drank her bottle just as she always does.

She played and kicked and stretched out - no mind the the wires everywhere!

We were blessed to have Jennifer's parents there during the surgery and afterwards as we waited for her to come to the room from recovery as well as our dear friend Cheri.

Hannah also had a few visitors including a pastor from Jennifer's parents' church as well as the student pastor from our church, Jody as well as our children/preschool director Robin. We thank them for lifting up our spirits and enjoyed spending time with each of them and our other visitors.

We have an awesome church home which continues to be at our side praying and being there for Hannah and our family and we cannot express enough thanks to each and everyone!

Thanks to everyone's prayers and obedience to lift her up in your prayers. We definitely aprpeciated them and give thanks for the continued prayers for us and for Hannah.

Hannah was kept overnight mainly so neurology could observe her "jerks" or what we had thought were seizures. It seemed like a time wasted though since when they tried to perform an EEG it didn't work because by Thursday morning Hannah was not ready to sleep! Needless to say, it continues to be a matter of frustration why we were told they weren't seizures, yet they are upping her meds (some are "seizure" meds) to try to control the jerks. We are not sure if we are going to stick with this neurologist either. We know they have other paitents, but they don't seem to ever listen to our point of view nor do what we ask them to do. In addition to that, they didn't even come until Thursday afternoon to observe Hannah or provide her release. Anyway, the neurlogist is a sore subject right now. Hopefully we can find one that takes Hannah's case seriously which we have yet to see or find in our current doctor.

As of this writing, Jennifer and Hannah are still waiting to be released. Hopefully they will leave shortly!

Please keep us in your prayers and we will update Hannah's blog as timely as we can!

No More Shunt!

This update is coming from the lab at Scottish Rite. The shunt came out this morning. She came through surgery great. We have to stay over night so that the neurologist can check on her seizures. However, Hannah is smiling, laughing, and in generally good spirits. Please pray that this will stay clear of infection and that she will never need another shunt. Please also pray that the neurologist will get a clear idea about the seizures and how to stop them. Thank you for your continued prayers. We know God is at work through all of you.

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.

THE SUBDURALS ARE GONE!

We saw the neurosurgeon today and he confirmed that the subdurals are gone and it is our choice if we want to remove the shunt or not. We most likely will after things calm down at work for Ben. Even though she'll have to be put to sleep to take it out, we don't want to have to worry about it getting infected or malfunctioning. I am a little concerned that the subdurals will come back but he said that even if they did, she would need a new shunt, so I think it just makes since to take it out. And although he swears that it shouldn't bother her the way it curls in her neck, I will not be convinced of that. How could it not bother her? He also took a little time to explain the MRI to me. He said basically everyone has grooves in their brains, but Hannah's grooves are deeper then "normal". He said he would be interested to see how the neurologist follows up with this, because the neurosurgeon feels like that information might lead to a "better diagnosis or some information about prognosis". Finally someone who actually explained somethings in English and thinks there is more to the story then what the other DRs are looking at. I love our neurosurgeon DR WILLIAM BOYDSTON. He's the best.
We decided to try the antibiotic that the GI had suggested. I talked to Hannah's ped. and she felt like it would be a good thing to try. She said new studies are showing that it not only helps things move faster out of the stomach but that it also helps tighten the tone of the lower esophagus to keep things down. She suggested trying it for a week or two. She said if it really upsets her stomach or doesn't help the reflux then stop using it. I gave her the first dose tonight. Please pray that it will give her some relief from the reflux.
Hannah seems to be moving a lot more lately. She's even looking to the left some. On Saturday she held her bottle all by herself for several minutes until it was gone. Everyone tells me I need to celebrate the little things, so WEWWWWWWWWWWWWWWW WHOOOOOOOOOOOOOO for Hannah! I'm proud of you girl!

I took Hannah to the GI to follow up from the hospital today. He said even though her stomach was a little slow emptying its not a big deal. He doesn't think we should do the reflux surgery, but gave me the names of some surgeons if I wanted to talk about it with them. He said I could make a case to do it, but he thinks I'm putting too much hope that it will solve all her problems. I got the feeling that he thinks I'm a mama who's just tired of cleaning up spit up. Yes I am tired of it and I don't want to rush to surgery if it won't help, but mostly I want me baby to feel good. I think its a problem that she never feels good, that she has to wear a heart monitor until they figure out the reflux, that she has to wear a bib all the time b/c you never know when she's going to spit up, and that I have to change her sheets almost every night because she spits up and then can't move away from it and just lays in it! When I said this to him, he was like "well maybe you should talk to the surgeon but they will probably want to do a g tube (a feeding tube) with the fundoplycation". That scares me to death. After much discussion, I did get him to prescribe erthromicin to make her stomach empty faster in hopes that it would help cut down the reflux, but I think he did it just to pacify me. I understand that my baby is just one of the hundreds of patients each DR sees, but can't even one of them understand that my baby is the only little girl I have and I just want someone to help her get better?
We are starting feel like everyone in the ATL medical profession has just given up on her. We are thinking about taking her to Duke to get a second opinion for everything. If you know how we go about doing this, please let us know. Please pray for wisdom and guidance for what to do next. We are so frustrated. Please pray that God will work outside of the DRs so there will be no other explination other then He showed up.

No answers, just more questions

Today Hannah had an endoscopy to see if she was a candidate for reflux surgery. We were seemingly left with more questions than answers though. Her esophogas and stomach as well her small instestine looked essentially normal. This was mix news - good that her esophogas has not been damaged by her reflux, but now GI doctor now thinks it was not reflux after all - but alas cannot give us any definitive update on what it is which is rediculous. We know she has reflux - she has had it since she was born - which has added to the difficulty of her feeding and her pain many hours after eating.

Tomorrow she will have another GI test - an stomach emptying test - to see how soon her stomach is emptied to see why sometimes she has been refluxing her breakfast after she has already eaten lunch and dinner. If that is not reflux we don't know what is. Maybe this will lend some idea - but again it is getting more difficult to think that this will be the test to do so.

It is like we keep testing for things without getting any closer. We know the plan God has for our precious little Hannah - we just pray for clarity and for an answer so we can treat her the best we know how and can get the best doctors to be available to help us.

Please pray for our patience and for clarity and for the right test to be done so we can move closer to helping Hannah get better. We know it will be a difficult road, we just need something to be revealed to help us know we are doing all the right things.

A little more clarity

This week our neurologist called twice to discuss the results of the EEG and the MRI. The first time he called he just talked about the EEG. He said that the jumps she does and when she stares of into space are not seizures, however her overall EEG is abnormal and she is having some mild seizure activity in the left frontal lobe. So that is why they still want her on seizure meds and he said that her jumps are certainly interesting and may be causing her not to get as much sleep as she needs. When I asked about the MRI he said he didn't have those results and would call back when he did. Well he called back on Wednesday while I was taking Hannah for her pre op for her endoscope. He talked to Ben so I may have to call to get further information, but what Ben did understand him to say is that the subdurals are basically gone which is good news. We are hoping that maybe that means when we see the neurosurgeon maybe he can take the shunt out. I asked Ben about the damage to the white matter and Ben was a little confused about what the neurologist said about that. He did understand him to say that they are still reviewing it and may or may not do further testing. Please pray that they will get a clear picture of what's going on and how to fix it. Please also pray for Hannah's endoscope on Monday. This will decide if she is a candidate for doing the reflux surgery. While the thought of surgery is always scary, we are honestly hoping that she can have the surgery and that it will bring her some relief. I guess that's all for now. Happy New Year! We are praying and ask you to join us as well, that 2009 will bring answers and solutions for our precious baby. My God Bless you all with a happy and healthy year.