Monday, February 26, 2007

Feb. Neuro checkup

February 20, 2007 at 08:46 PM CST A very long day at Children's Hospital

Abby had another CT scan today before we met with her neurosurgeon for a follow up visit. She was a trouper as usual and tolerated all the waiting and the CT scan without any problem... unlike her brother, who threw the biggest crying fit (and the loudest) we've ever experienced!

Poor Josiah, he was so tired. He let EVERYONE know how he felt! By the end of this day we were all at the end of our robe.

Despite the overall stressful experience, we did get more good news about Abby's head. The CT scan showed her ventricles are still small and things are looking good. The doctor said this is not a prediction of her future, but a good sign for today. He told us again that she could start exhibiting signs of complications at any moment, but there is no way to predict when that might be. (We are still praying that moment will never come.)

He said that as long as we have a good pediatrician that we trust closer to home we could return in 1 year! I was surprised. I think he saw how frazzled we were, and I'm sure he heard Josiah's protesting.

So, we don't plan to go back for another year!! We just hope and pray that we won't need to. Praise the Lord.

We are all glad to be home.

Wednesday, February 14, 2007


Bitter cold, snow flurries and Children's Rehab Clinic.

That's what today has consisted of for me and the munchkins. Up early, not feeling so great from another cold... get everyone ready with breakfast, tube feeding, meds, diapers, juice in the diaper bag and a few tears.

Oh, don't forget the Cheerios!! And the x-ray films.

We finally get into the car about 15 min later than I had planned, in order to get to our destination by 9am... and it is snowing out. It's funny; normally I would feel giddy at seeing snow. But not today. I just wanted to get to clinic and get home.

It seems like Abby has had all of her regular appointments all clumped together lately. Last week was feeding clinic, Monday feeding therapy, neurology appt, Ortho and hearing aid clinics today. Next week we head back to Birmingham to see the neurosurgeon and get another CT scan, and hopefully hear more good news.

Despite my weariness today, clinic went ok. In the past our clinic days at CRS for orthopedic looks a little like a "waiting marathon"... after waiting 2 hours you start to wonder if the doctor actually exists. If he does exist, then does he even realize there are 30+ kids and their tired families waiting to see him! We usually get to clinic before 8 am to be first on the list, and then we wait. The last few clinics we got home around 1 or 2 pm, exhausted, frustrated, hungry and irritable. That was without Josiah!

I prayed last night for a smooth day, and made sure to bring every snack and drink I could think of for my 10 month old cruiser! The Lord heard me and showered mercy on us.

First we see Anita, Abby's audiologist. To Josiah's delight she has a basket full of toys, and carpet to crawl on. Anita wasn't thrilled with her booth hearing test today. Abby tested mostly in the 80 dec range (severe to profound), a little worse than her last test (moderate to severe)... but not inconsistent with her ABR. So we will try testing again in 3 months and hope she will be feeling better and maybe more cooperative.

Then we see the social worker who makes sure all of our info is still correct and wants to know all about school and what a big girl Abby has become since our last visit. She makes a list of all the people we want today's report to be sent to.

Then we wait. And drink some milk.

Then we see a nurse who takes us to a private room to... wait some more. Josiah chews on Abby's chair while Abby vocally complains from sitting too long in it.


Then we see Dr. Buckley. A nurse kindly offers to take Josiah to the desk to entertain all the other nurses. He says her x-rays (we got those on Monday before feeding clinic) look fine and her hips are growing normally. He stretches her legs and ankles, to which Abby starts yelling and biting her hands. He examines her orthotics and her night time leg splints and decides that she is close to outgrowing her orthotics... so he writes a prescription to keep on file as needed. He tells me her tightness might be a little worse but nothing he is concerned about. Eventually if she gets a lot tighter she could start taking medicine for it. Thankfully at this time we don't have to add any more meds to her daily regimen.
"See you back again in 6 months."

Back to the waiting room. Break out the Cheerios and more juice.

There we see the social worker again and make our appointments for 6 months, and to see Anita in 3.

Bundle everyone up, pack up the snacks and toys, put shoes back on and off we go, outside in the frigid weather. Once in the van, some yelling and a lot of tears... then Baby Einstein to the rescue! I don't know what it is about that crazy, tin sounding music... but it works every time.

We were home by noon!! Yippee and WHEW.

Made it through another day at CRS clinic.

Thursday, February 1, 2007


Snow in Alabama... it actually happened today!

We woke up to a fresh whiteness covering our yard. It was beautiful! It's mostly melted now from rain, but we enjoyed looking at it while it lasted.

Abby is finally better from her battle with RSV and the flu... thank goodness. She's back to herself, enjoying tickles and telling us what she thinks. It's nice to hear her little voice again instead of coughing. I think she's glad to be back at school too.

She saw her neurologist yesterday who was very pleased with her seizure activity this month. She's only had 2!! Yeah! Now that she is on a full dose of her new med Lamictal, it seems to have really helped. We are so thankful. Hopefully if she remains stable for the next 6 weeks we can start weaning her off the Keppra.

Josiah is better now too. He's finally starting to sleep all night long! We tried a cool trick I learned from my wise and experienced sis: cold juice when he wakes up crying, a quick snuggle and back to bed. So far it's working! Yippee. It's definitely been a nice surprise since we've been fighting the flu this last week.

One more day till the weekend!