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.