B'day Dress

Simplicity 2943

Hannah wanted me to make her a B'day Dress. Although her b'day isn't until next month, yesterday was school pictures so I made it last weekend. She picked out the fabric and pattern while I was shopping for curtain fabric one day. Note: pattern runs small

Hannah Update

I don't have but a couple seconds to post, but wanted to update you on what the new neurologist said to us yesterday. We liked him a lot and will be under his care fulltime now.

He validated our concerns will be scheduling tests that range from genetic to metabolic. He feels that the nystagmus is a new symptoms because it's bad enough to be seen by anyone that exams her eyes. I will be making an opthalmologist appoint ASAP. He also added dystharia in her speech to the list of symptoms. Jason mentioned something to me about 1.5 wks ago and I told him that he was just looking for symptoms. He describes it as Hannah having to concentrate more on how she says things to get the words out correctly.

All of this leads the neuro to feel that something is going on with her cerebellum. He concluded by saying that "we are in Atlanta and have a great medical community. Know that we will be here for you in whatever this turns out to be."

Jason and I are beside ourselves with worry. I have cried nearly all morning. I have having great difficulty coming to terms with why another of my children have to suffer.

Amicalola Falls

It seems that life passes me by these days in a fraction of a second. However busy (read tough at times) things seem, I truly dread the teenage years. Last week, in the midst of all the worry about Hannah & dad's cancer diagnosis, we played host to our nephew and 3 other 17-18 year olds. We survived.....just barely. :-)

Below are a few pictures of our Amicalola Falls adventure taken with my new digital camera. We bought it without hardly any research after my other one croaked. I am VERY pleased with the pictures though.

Jason REALLY wanted a good picture. ha! ha!

Will post more in a bit....Austin's having a fit.

When it rains.....

Dad was diagnosed with bladder cancer on Thursday. The surgeon feels that they caught it very early and that he's hopeful that the tumors have not penetrated the bladder lining. If so, they will re-scope him again in 3 months. If not, chemo is involved. We won't know for sure until the pathology report comes back in 2 weeks.

2nd Opinion Scheduled

About 3pm yesterday the 2nd neurologist's office called. We were unable to get a sooner appt with him, but can see his partner on Tues at 2:15.

About 5:30 last night, the medical asst to the current neurologist returned my call. She was still unable to locate the exact blood panel on Emory's forms, but found it on Athena's. In our conversation, she said that she unable to spell Freidriech's at first, blah, blah, blah....

Glad we're going with the 2nd opinion!!

Meanwhile, Hannah's home from school sick with a fever and a head cold. She seems to be getting better and we will go camping at Amicalola Falls tomorrow (no school on Friday) if she continues to improve.

I'll let you know more when I know more. Thanks for all the prayers!

Neuro Update

He's not certain that it's F.A.; said that she in fact does have some of the symptoms, but not all. It's a good thought so he's going to have a full Ataxia Panel run. He couldn't figure out how to order it on the lab slip so is calling us back. He said that it used to have to be sent to Houston, but now Emory could do it. We should hear back from him in 24 hours to schedule the blood draw.

Depending on what this says, he wants to do the nerve test under sedation.

She does have nystagmus, but he said some people just have them and gave us names of a few pediatric opthalmologists to see.

We feel a bit better since he doesn't think the F.A. diagnosis is glaring, but any form of genetic ataxia is progressive. I'm just hoping that it's not as bad as the F.A.

Thanks and Update

Thanks for all the prayers!!! This morning I called Hannah's current neurologist and expressed the pediatrician's concerns about Freidriech's Ataxia. I also told the nurse about the nystagmus (jerky movement of the eyes when trying to follow a pencil) that the school physical therapist called me about on Friday. We are headed back to the neuro for a 1:40 appointment. We're worried sick and cannot wait for to get in with a new neurologist. I think he'll send us for genetic testing to rule out F.A.

In lighter news, the entertainment center is complete and it looks AWESOME!

Prayers Please

I hesitate to post today, but figured we could use all the prayers we can get right now. It's about Hannah and I'm not even sure where to start. I pray all this worry is for nothing.

As many of you know, 4 months ago the neurologist diagnosed Hannah with Ataxia Cerebral Palsy even though her MRI was normal. Typically, some kind of brain injury shows up on the MRI pointing to CP.

Last week, she had a big fall at school requiring her to go to the school nurse. I've been noticing more tremors in her hands. In October when this all started, you couldn't convince me that she was tremoring. Now I see it frequently.

Tuesday we had a follow-up with the neurologist and we left confused as ever. He's now saying that he's not certain it's CP and may be neuropathy. He also said that he could not get reflexes from her legs at which point I remember that the new pediatrician told me the same thing back in November when Hannah was so sick.

So, not being comfortable (ya know...the mommy instinct thing) with the neuro appt I made an appointment with the pediatrician yesterday hoping that she would help me get a 2nd opinion with a different neurologist.

We are now worried sick! She is concerned about something called Friedriech's Ataxia. It's a recessive genetic disorder and is progressive. Initial symptoms begin when a teacher notices abnormal coordination. Another first symptom is lack of leg reflexes. It progresses to heart disease, diabetes, scoliosis, and the inability to walk. Mean life expectancy is 35, according to some of the info that I found online. At this time, some new and promising studies are being performed.

This morning I called the neuro the ped recommended and can't get an appt until May 18th. The ped is trying to get one sooner. If she can't, I'm going to beg for the blood test to rule out F.A.

In the meantime, please add Hannah to your list of prayers. Thank you!!

Leprachaun

Or is it a pig? Hannah saw this little project in the Highlights Magazine (I think). Here's her version of a leprachaun with grass for hair.

BTW, that's whiskers on her face. This picture was taken Monday on Dr. Seuss's birthday.