A delay in my timeline....a total God thing.

I got a phone call today from the pediatric neurosurgeon's office. Dr. Hudgins is no longer accepting new patients and is leaving the practice. We had heard such wonderful things about him and knew that he was completely qualified to treat our daughter. My heart sank. We are now going to see Dr. William Boydston. I asked the nurse if he knew about Chiari and she was quick to reassure me that AC would have probably ended up with him anyway and he deals with Chiari regularly. I've been researching him all afternoon and the results are fantastic. Thank you Lord for this blessing!

Our new appointment is on September 3rd, at 1:00. Those two extra days seem like forever, but I'm just thankful it wasn't two weeks longer...or worse.

Yesterday, I picked up a CD of AC's CT Scan. I just knew that I would be able to see everything...but no. I can't figure out how to see the view I need to see of the brain. I wish I hadn't read the radiologist's report. I'm still looking up some of the big words. I will let everyone know what the report is after it is explained to us by the specialist.

AC is holding her own. Some days are worse than others. School is our big challenge right now. The noise and florescent lighting intensifies her headaches. We are trying to keep her in school as much as possible but I hate seeing her suffer.

Saturday was our miracle day. She was completely headache free!!! We watched TV Saturday morning and then hit the mall. We ended Saturday by making chocolate covered strawberries with Grammy. Retail therapy, chocolate, and Grammy are three of her favorite things.

Cole is very happy that baseball is starting up this weekend. Tryouts on Saturday, then teams formed next week. He hasn't picked up a baseball since All-Stars ended but I know he'll do fine. Our family functions better during baseball and I am ready for some normalcy.

I got another full night of sleep thanks to Unisom. I still felt a little drugged this morning and I haven't been very productive today...I'm still in my pajamas. After 2:00 I didn't see the need to get dressed when I'm just going to be back asleep in a few hours. I love days like this.

I got a very sweet email from my sister-in-law, Melissa, last week. She gave me this very needed scripture:

Matthew 11:28-29
²⁸"Come to me, all you who are weary and burdened, and I will give you rest. ²⁹Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.

The support we have been shown in the past two weeks is overwhelming. We know we are loved and feel the effects of your prayers.

Thank you for blessing our family!

Headaches...

Today has been a day full of prayer and positive thinking.

September 1st, seems so far away. AC's headaches have gotten worse over the weekend and we are having to up her dosage of Tylenol to see if that will give her some relief. We are going to try that for a day or two then reassess her pain. We hope to be able to keep her in school and to keep her routine as normal as possible before the appointment. The headaches have overtaken the neck pain as the primary complaint. She can barely tolerate it when I touch the back of her head. I am going tomorrow to pick up a copy of her CT scan. I'm curious to see if I can see where the swelling is.

Also today, a very sweet dear friend had surgery in Houston, TX. According to her blog the surgery was great and she is resting in her room and is in a lot of pain. She has been on my mind all day and I've been lifting her up to the Lord every time I think of her. I know His plan for her is a great one and she is one tough cookie. Her strength is only matched by her faith. It is a blessing to hear her talk about her illness and her faith that this journey is what the Lord has for her. She is surrounded by a great support system and I wish I were closer to Houston so I could join them. Love you Mere!

What to pray for today:

1. For the tylenol to knock out the headaches.
2. Sleep for me....before 3 am.
3. Cole to not feel left out.
4. Quick healing for my friend, Meredith.
   

The phone rang...

We have an appointment!!! September 1st, 9:10 a.m.

It seems like forever from now but I'm praying that time will fly!

They told us to just treat her symptoms until our appointment but to change her from Motrin to Tylenol to cut down on the tummy aches. I have to go get a hard copy of the scan to take with us to the appointment but other than that I guess we just show up.

Now we wait...again.

My sweet mother-in-law shared some scripture with me this morning. It was just what I needed to hear:


Isaiah 41:13
For I am the LORD, your God,
who takes hold of your right hand
and says to you, Do not fear;
I will help you.

Waiting is the hardest part...

I've tried to blog before and realized that I really didn't have much to say that was worth everyone reading. I hope that this becomes a place where everyone can come to see what is going on with AC and her treatment.

AC has been diagnosed with Chiari I Malformation. We are being referred to a Pediatric Neurosurgeon to see if we can get by with physical therapy or if we have to go the surgical route.

Here is a quick explanation that I copied from the Mayo Clinic website:
Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

Thankfully we didn't settle for a quick dismissal of her symptoms and found this condition early. Her pediatrician, Dr. David Sprayberry, is the best! He wouldn't give up until we had a definitive answer.

AC started having pain the first week of July. Two weeks later we took her to urgent care on a Saturday afternoon and the doc there said that he was positive that it was a muscular pain and that he didn't feel the need to x-ray or scan her neck. 10 days later we were back at the pediatrician's office because the pain had not eased up at all. Dr. Sprayberry ordered x-rays and they came back normal. A follow up call the next week led to a CT scan that was performed on Tuesday. I got a phone call from the doctor on Wednesday and he gave me the results.

As of right now we are waiting for the appointment with the specialist. We hope to have an appointment in the books by Friday. Waiting is definitely the hardest part.

AC is enjoying her second week of 3rd grade and is very ready to play soccer this fall. Her headaches are becoming more frequent and we are starting to notice her having some vision issues but she hasn't slowed down at all. She is a trooper!

If any of you have experience with Chiari I Malformation we would love to hear from you. I've heard from several people that this is a common problem and that it can be fixed. The worst thing I did was read about the surgery on the internet. I'm staying away from all that information until we know that is the reality we face.

We have the greatest family and friends and are so thankful for the support we've already received. We love y'all!!!