Heart Monitor Round Two!

I took Hannah to the ped today because she has a terrible cold and I thought she may have another ear infection. Everything with that was fine, but when we started talking about Hannah going to the GI DR next week, and how she had turned blue 2 weeks ago, her ped got a little worried about her. She was trying to decide whether to send her to the hospital today. When I said it happened 2 weeks ago what good would it do now and since its Thanksgiving and the hospital really wouldn't do anything this week anyway, the Dr decided to put her back on the heart monitor at least until we can get the reflux surgery. I know she's probably right and I do worry about Hannah turning blue at night, but I'm also frustrated because I know the thing is going to go off constantly for loose leads. The DR told me if she turns blue again from reflux to take her straight to the hospital. I guess its a little more serious now then it was when she was younger. Please pray that the GI guy will move quickly and do whatever necessary to bring relief. Pray that the tests that have to be done before the surgery can be scheduled quickly and that the surgery can be done as soon as possible. I just want Hannah to get some relief and I know it will never come if we don't get this reflux under control.

More wasted time and more frustration!

Hannah would not sleep during her EEG on Friday, so it was worthless. I have put in a call to have them do a twenty four hour EEG, but haven't heard back. I am not going to allow another regular EEG until they do the 24 hour one. At least that way she won't have to be sleep deprived. In the church nursery yesterday, the workers think she had a seizure like she did when she was really little. This is a little concerning b/c she hasn't been having them while she's been awake. We are also concerned that Hannah is starting to choke and turn blue again on her reflux. We are finally going to see a GI on Dec 3rd. Please pray for wisdom about the best way to treat her, even if that means doing the reflux surgery. Hannah's therapists are more and more convinced that her inability to sit up/hold her head up is do to it being uncomfortable and not just a strength issue. They think this because she purposefully pushes out of a sit rather then just falling over.
I called the genetics back and after a lot of run around, I was told that everything is fine and there is nothing abnormal with her genetics. Yet again we wasted time and energy. I just want one doctor somewhere to actually know what's wrong and how to make her better. I'm just so frustrated. Please pray for wisdom, guidance, and patience. Thank you for praying for Hannah and for us we need it.

Its been awhile, sorry. Last week I took Hannah to the endocrinologist. She was extremely rude and couldn't understand why in the world Hannah's Dr had even sent her. She said her hormone number was only 6 points elevated and that was nothing. When I brought up my concerns about Hannah's size and some other issues she was like "she's fine... nothing is wrong". She did say that if I didn't stop overfeeding her, she'd be seeing Hannah for other problems like a diabetes. I was furious because Hannah doesn't eat anywhere close to the amount of food a baby her age should eat. When I mentioned this to the DR she said then it was probably the meds. So in other words this was yet another wasted trip with no new information. I've about decided that all these Drs have no idea what's going on with Hannah and its worthless to try to get answers from them. I'm so frustrated we may never know what's really going on with her. Speaking of wasted trips, the last EEG for Hannah was inconclusive so she has to have another one on Friday. Please pray that she will be able to stay awake all night and then sleep during the test. One positive note at Hannah's grandparents had a regular baby walker from when Joseph was a baby. Anyway Hannah loves it and is moving all around the kitchen.

Halloween and Stuff

This week has been quiet as far as Drs appts, but busy for everything else. Hannah's therapist brought her a stander. It is supposed to help her put weight on her feet to increase bone density. She HATES it. I have mixed emotions about it, because I know it will help her, but more then anything else it makes her look like she has special needs. I know that she does of course have special needs, but this really makes her look like it. Please pray that she will learn to tolerate it better, and that it will do its job.

On Monday we took a quick trip to visit Hannah's great grandmother in Alabama for her birthday. At the rest stop, my mom asked Hannah if she had been good in the car with Papa and Hannah said..."goooooooooood". Or at least that's what it sounded like to us. Thursday, Jojo had a nursery rhyme parade at school. Hannah seemed to enjoy watching all the kids in their costumes, but always kept an eye out for her brother who was dressed like Humpty Dumpty. For Halloween, we went to our church's Trunks of Treats. Hannah was the prettiest Snow White there. I think she enjoyed, but was a little confused seeing everyone in their costumes.

Next week she has a neurology and an endocrinologist appt. Please pray that someone somewhere will come up with some answers of how to help her. They are still trying to get her seizures under control. We haven't heard anything clear from genetics, but we got a letter in the mail from them basically stating all her medical history which we already knew. I'm hoping that's not the letter we have been waiting a month for.