Gotta go back, back, back to school again....

AC just skipped out the door to leave to go to school.  She seemed very excited and ready to tackle a new school week.  She's missed 8 1/2 weeks so far...we are working to get her caught up so that when she goes back after Christmas she'll be on track with the rest of her class.  

Thanks to Jen, Jamie, and Maggie for taking AC to school this morning!   

  

MRI results and our next big decision.

We got the phone call on Friday that the MRI was normal.  She is having muscle spasms as the muscles heal from being cut during surgery.  I can't imagine that happening on the back of  my head...

Our next decision is what to do about school.  AC is still very sensitive to light, sound, and motion.  School is bright and loud so that is a problem for her.  I don't think she could get away with wearing earplugs and sunglasses all day. 

I've  been researching the Georgia Virtual Academy.  It is an online public school in the state of Georgia.  I talked to an admissions counselor this morning and we have to make a decision this week.  Open enrollment starts next week, so we gotta get on the ball.  I like the idea of her being able to catch up at her own speed and once she masters a skill she moves onto something else.  It'd be a big committment but we've got to do something to get her back in the school groove.  She misses Cleveland Road Elem. and really wants to go back, but right now she just can't.

2009 has been an eventful year for our family and we can certainly testify to the power of prayer.   We will reflect this week on all of the miracles we've been blessed with this year.  Happy Thanksgiving!

Freak-Out

AC had a world class "freak-out" at the hospital today.  She decided in the parking garage when we got there that she didn't want to have a MRI today.  I had to pry her out of the car.  It took 3 tear-filled attempts and lots of begging for her to finally submit to doing the MRI.    She got one last shot at cooperating and she finally decided to comply...2 hours later.  The staff at CHOA is amazing and they never showed any impatience...even though I know we completely messed up their schedule for today.  My daughter can be very stubborn and she is also freakishly strong.

We are still waiting for the results.  We paged the doctor after the scan was over and they said he was tied up with some issues at the office...for us to head home and he'd give us a call.  Hopefully that call will come early tomorrow morning.

I hate waiting.

Time set for MRI

We have to arrive at Scottish Rite at 2:00 on Thursday the 19th.  She is scheduled for the scanner at 3:00.  We'll know what is going on before we leave for home that day.

Another MRI..

AC will be undergoing another MRI sometime next week.  Dr. Boydston wants to get a good look at what is going on and try to figure out why she is in so much pain.  He said that she shouldn't be hurting this much at 5 weeks post-op. There is a bump about 2 inches away from her incision that is about the size of a golf ball and it is the main source of her pain.  He thinks it might just be a muscle spasm....I guess that is the best case scenario...

He has restricted her mobility.  No running around, bike riding, or anything really strenuous until we figure out what is going on.  (I bet she is going to use that at some point this week to get out of cleaning her room....)
We just hope that it is something easy to fix...

Setback....

It has been a month since AC's surgery.  It is amazing to see how far she has come since October 5th. 

We thought she was progressing quickly and was on the road to being completely recovered...until this past Thursday.

AC went to the office at school and complained with her scar hurting.  She made it through the week and we monitored her over the weekend.  Her neck started swelling and her pain level increased.  We've been on the phone with the neurosurgeon's office and we have an appointment scheduled for this Thursday at 11:40. 

We are praying that this is a normal part of the healing process and not a complication that would require another surgery.  We just want her to be comfortable and pain free! 

Staples Are Out!

 AC and her 25 Webkinz!!!

We made the trip to see Dr. Boydston on Thursday.  AC got her staples taken out.  She did great and didn't cry at all!  What a trooper!  It is hard to believe that the surgery was 2 weeks ago.  Anna Cate had a list of questions for Dr. B.  She's been cleared to ride her bike in 3-4 days but cannot jump on the trampoline at all.  He said he'd check her out in six weeks and go from there. We go back on November 19th.

We started homebound school on Friday.  Dr. B. said that she had to stay out until she was caught up and was able to stay awake at school all day.  Her teacher will come to the house 3 hours a week to work with her one on one.   Her teacher said she was pretty much on track and just needed to catch up on a few things.  We are looking at going back to school on October 26th.  She might need to only stay 1/2 a day at first but we can work our way up to a full day.  We are both going to have some separation anxiety when she goes back to school.  It will be like Pre-K all over again!

AC is pain-free, and more importantly, pain medicine free.  I asked her on a scale of 1-10 what her pain was before the surgery and she said it was a 10 all the time.  I asked her what she was now...she said a zero!   She also said that she can see without her glasses now.  I am still skeptical about that....we'll be making a trip to the eye doctor after our November follow-up appointment.

We are so thankful that the worst part is behind us and can't wait for AC to recover and get back to a normal life.

Home Sweet Home

We still cannot believe we got to bring AC home just 48 hours after having brain surgery.  The doctor told me that she would only stay there a day or two after surgery but I didn't believe him.

We can't believe how mobile and active she is for what she's gone through this week.  She is very stiff in the neck and shoulders.  She looks likes she's wearing a brace to keep everything straight but she's not.  Today she was able to lift her shoulders up and down.  Big step.

Incision Picture...Ewww.

Our whirlwind of a day is finally winding down.  AC just drifted off to sleep watching the Wizards of Waverly Place.

Around 3:30 this afternoon  AC finally decided that she could try to get out of bed.  We were hoping that she would be able to stand for a few minutes and then get back in bed.  I learned today that my sweet baby girl is an over-achiever.  She stood up, walked to the bathroom, then decided it was time to take a shower.

My happy moment of the day was when I was able to rub her back for the first time today in  3 months without her screaming in pain. She was the one that pointed that out and said that the surgery was definitely worth it.

We were able to get our first good look at her incision today.  Wanna see it?  Of course you do.

AC's scar and her 20 staples...

AC sat up, colored, wrote some notes, and played on the computer registering her new collection of Webkinz for about an hour.  She got valium at 5:00 and Lortab at 6:00. Thinking that AC had enough drugs in her to let her sleep for a couple of hours, Grammy and I headed down to the cafeteria to grab some supper.

We returned to the room about 30 minutes later to find Staci with a frantic look on her face and the nurse on the way to the room.  AC had woken up from the drugs with a severe headache.  Alvanetta, her wonderful nurse, soon came to the rescue with a dose of  Morphine.   They called the doctor and he said that he had thought she might have a headache and to let him know if it continues.  AC slept for an hour and then woke up and asked for Morphine at 9:30.

AC asked to go walk in the hallway about 10:00 tonight.  We walked down to the playroom and then down another hall.  I think she surprised her nurse a little.  That wore her out...she got right in the bed when we got back and zonked out.

Dr. Brad (real name, Dr. Jason Taub) will be by to check on AC bright and early in the morning.   I'm concerned about going home with her still taking the morphine on a pretty regular basis. I think he'll come by and check on her around 6 a.m. and then come back after lunch to decide if she gets to fly the coop or not.

I'm ready to be home...I'm ready to see Cole...and I'm ready to sleep in my own bed.  Sleeping double on a single futon is challenging and not quite comfortable.

It's midnight and AC is due for a dose of Lortab.  She's got an hour until  she can have some Valium.  I wonder how long she will sleep????

The Animals are Taking Over...

Anna Cate's WebKinz family grew yesterday!

(Note the smile on that beautiful face!!)

... and it continues to grow today!

The Animals are taking over... but AC LOVES it! Her face lights up every time a new fury friend walks into the room! This photo was taken a few minutes ago and PRAISE THE LORD she is resting peacefully... finally. We pray that this will become the new trend. Dr. B has ordered some Lortab to add to the pain med mix!

Allie and Rusty stayed with Anna Cate last night... from 11 pm until about 2 am, Al was up about every 20 minutes getting popsicles, ice chips, pain meds, etc. Everyone slept soundly from 2 am - 4 am... and then the pain took over... so did Rusty, while Al got some sleep.

Anna Cate did eat some waffles for breakfast this morning... but they did not sit well AT ALL. Al and Amanda made the play of the day and grabbed the barf bowl in the nick of time!! Needless to say, they are scaling back to softer foods (milkshakes, ice cream, etc).

I think that is about all for now... she is still sleeping... which is such a huge praise. Sleep has come in about 20 minute increments. This is some of the best sleep she's gotten.

Thank you all for your continued loving support and prayers. We truly are so blessed by such AH-MAZING friends and family. This is Allison's sister, Staci, writing and I just want to thank you for how you have loved on Anna Cate, Allie, Rusty, Cole and our entire family. May each of you be truly blessed!

Room 5250, Egleston

High points of our day post-surgery:

*Moved to room around 2:30
*AC came out of surgery like a champ.
*Ate a cherry popsicle as soon as she got in the room.
*Took a 2 hour nap.  I slept for 1/2 an hour.
*AC woke up and asked for Jello and Morphine.  In that order.
*Valium is coming in a few minutes to help her relax.
*The Webkinz fairy has already visited 4 times today.  She loves all her new friends!
*Has no problem keeping down clear liquids...hoping to move onto more appetizing selections soon.
*AC is on bedrest now.  Physical Therapy will come at some point tomorrow to help her stand for the first time.  
*Make that 5 Webkinz now....and she just took the Valium.  Should be feeling good here in a few minutes!

Surgery...

UPDATE #3:  Just heard from the recovery room.  They said Anna Cate is hurting and they are trying to manage her pain.  Her eyes are open but she's not really awake yet.   She will stay in recovery until they get a room ready for her.  Can't wait to put my hands on her.




UPDATE #2:  SURGERY IS DONE!!!!  Dr. B. just came out and said everything went great.  She only lost a thimble full of blood and she does not have to go to ICU!  Big praise!!


She is in recovery now and will be there for a little while.  I'll update again after I see her.




UPDATE #1:     I just got off the phone with someone from the OR.  AC went to sleep with no problem, her vital signs are stable, and her surgery is progressing.

-----------------------------------------------

The power of prayer is AH-mazing.  Rusty and I both are completely calm this morning.  We feel your prayers and we are so thankful for them.  I read AC every message that we got this morning as they came in and she was full of smiles as she heard the love and well wishes that everyone sent.

Surgery has started.  Dr. Boydston came out a few minutes ago while they were getting her to sleep to go over everything with us again.  He promised to treat her like one of his own.  That man is awesome!!

We had a rainy ride to the hospital this morning.  AC only ended up sleeping about 4 hours last night so she dozed on and off during our ride.  We got to the hospital right at 7 and were taken back to our pre-op room.  AC changed into her cute little hospital gown that was covered with puppies and climbed into the bed to watch TV.

Mike the technician came by to check her vitals.  Then Dr. Taub came by to answer our questions about the surgery.  He works with Dr. Boydston and we will be seeing him every morning.  Dr. Taub looks just like our friend Brad Giddens so I am referring to him as Dr. Brad.

At 9:05 AC got her versed.  She was not a fan of the taste.  The nurse said that it would be 10-15 minutes before they came to get her....it was more like 3.  We quickly said our good-byes and then headed out to the waiting room.

I am about to hunt down some caffeine.  I am functioning on an hour of sleep so I need a little help.

More to come....

Pack it up, Pack it in!

We are finally packed.  I have this feeling like I need to be doing something else...oh yeah...SLEEPING!  Like that is going to happen.

AC is still up....eating...I think she's taking the midnight cut-off as a personal challenge.  She just asked for a Kit Kat, "before I have to stop eating for my surgery."  She knows how to work me. 

I already miss Cole and he's been gone for 2 hours.  I know he is in safe, capable hands and is going to have a blast this week.  He was very sweet hugging AC good-bye tonight. She didn't want to let go...so he just stood there til she was ready.  He's an amazing brother.  Thank you Lord for such beautiful, sweet spirited children!

Pre-Op

We went for pre-op today.  We were there for almost 3 hours.  Yawn!  

The anesthesia lady ordered lab work for AC at the last minute and AC had a freak out.  Today was the first time she's ever had her blood drawn.  The nurse put some cream on her arms so she wouldn't feel it when they took the blood but by that time she was already worked up so it didn't matter. 

On the way home we had lunch with Rusty then stopped at the Mall of Georgia.  AC got a new friend at Build-A-Bear to take with her to the hospital.

AC and her new friend, Dr. Sarah Bones.

Example of Chiari I Malformation

I've been asked exactly what is wrong with AC's brain.  I am a visual learner so the best thing I could do was to find an example.

This is not AC's MRI...just one I could find to explain what is going on.

The red circle shows the problem area.  AC has a 2 centimeter herniation, which is bigger than the example.  This was a 1.6 centimeter patient. It doesn't sound like much until you think that part of your brain is almost an inch out of place.  No wonder she hurts so bad!

Her cerebellum should be nice and resting in the skull but hers is being pushed through the tiny hole that your brain stem comes up through.

This is a diagram of what a normal brain is suppose to look like and the white outline of how the Chiari is formed.

I will be writing a thank you note to the radiologist at ARMC who caught this on her CT Scan.  That doctor saved us a bunch of the running around that most people face before being diagnosed.  

She's been talking about her surgery a little bit today.  I'm trying to answer her questions the best I can without scaring her.  Her biggest fear today was the staples.  Those are never fun no matter where they are.

I am off to research Wonder Woman.  AC told me today that she would be all better by Halloween and she needed a WW costume.  I think this year that is definitely the costume for her.  Her strength has been amazing.

Have a great weekend and GO DAWGS!

Surgery Scheduled.

What a day....

AC aced the MRI. She was able to do it without being sedated. The scan only took 20 minutes since she didn't need any drugs. She watched 'A Cinderella Story' and didn't move a muscle. So proud of her!

After the MRI we went to the gift shop and bought her a prize...a cute puppy dog purse. It is sooooo Anna Cate...

We met with Dr. Boydston for about 20 minutes today. He was amazing as always. We all huddled around the computer screen while he explained her MRI. He pointed out the part of her brain that has herniated and said it was substantial. Rusty says it looks like a funnel cloud is coming down out of her brain. Dr. Boydston said that the spinal fluid is having a hard time flowing and that the swelling and pain in her neck and back is caused by that. Most kids don't have the extent of herniation that AC has.

The solution is decompression surgery. It sounds scary, and it is...but doing it while she is young is the best thing. They will make a 4-5 inch incision in the back of her head and move the muscles aside. Then part of the back of her skull will be removed to make room for her big brain and that will help the flow of the spinal fluid.

None of her hair will have to be shaved. Many of you know that is the thing I've been obsessing over (a stupid trivial thing, but it was all I could focus on...) This surgery should end all headaches and pain associated with the Chiari. She will feel some stiffness in the neck for a couple of days/week but shouldn't have any other pain. She should fully recover and feel 100% better.

The surgery is on October 5th, is being done at Egleston and should last 2 1/2 hours. She should be in the hospital for 1-2 days after the operation. It all seems so quick compared to the horror stories I've read online...but those were adult surgeries and it is way worse for older patients.

We ended the day with lunch/supper at Steak N Shake with Staci and Kevin. It was awesome as usual and now...I'm sleepy.

I think that I will finally be able to sleep now. Ever since I got the call from her pediatrician a month ago I haven't been sleeping but 3-4 hours a night. I didn't realize how worn out I looked until I saw some pictures from tailgate on Saturday. Yikes.

All in all it was an amazing day. Nothing puts your child's illness in perspective than seeing all the other precious kids at the hospital that are way sicker than AC. I am very thankful that while this is our reality for now, it will soon be a thing of the past and life will be normal for her. So many children aren't that fortunate.

Thank you so much for the prayers today. I know things would not have been as smooth for us today without them. We know we are loved and we love you too!

H1N1

Cole is finally back at school today. He tested positive for H1N1 on Friday.

I haven't taken AC to the doctor but I'm pretty sure she has it. Her temp doesn't go above 100.6, but she has all the other symptoms. I am hoping that she's just got a lighter case of it and will be all better by Thursday morning.

If Rusty and I escape this without being sick it will be a miracle.

Anna Cate was very excited about getting to go to the Georgia/South Carolina game once Cole got sick on Friday. She even sang a song about it being her lucky day. Cole knew he couldn't go but I don't think he was a big fan of her song...

There was a moment at the stadium on Saturday where I felt like the worst parent ever. It gets really loud up in the concession area when everyone is screaming. AC looked at me with her hands covering her ears and tears in her eyes and said her head hurt. It never occurred to me that the harsh stadium lighting and the screaming 92,746 fans would give her a headache. DUH! Thankfully I was prepared and had Tylenol with me. She hung in there and only asked to go home once during the 4th quarter.

48 hours from right now we will be getting in the car to head to ATL to get the MRI. Bring it on...

MRI Scheduled for next Thursday

Nicole with Dr. Boydston's office called and had AC's MRI appointment set up.

September 17th, at 12:00. We have to be at the hospital (Scottish Rite) at 11:00 for set up (sedation), then the scan is at 12:00. Immediately after that we are to head over to Dr. Boydston's office to get the results and to finally learn what the outcome will be for our little princess.

AC had a great weekend. She was headache free from Friday afternoon til Monday at 4:00 a.m. She is complaining of pain in her eye today, that is a new thing....

We are back to the waiting game. Waiting the 9 days for the MRI is a cake walk compared to the 19 we had to wait to see the neurosurgeon. I'm just so ready to KNOW something.

Praying for patience....

Dr. Boydston. Love him.

Yesterday was our long awaited appointment with the neurosurgeon.

Here are the highlights:

• AC does have Chiari I malformation. (we already knew that...)
• He is scheduling a 2 hour MRI for her.
  
• Immediately after the MRI we will meet with him again to go over the results.
  
• Only 15 out of 100 Chiari patients require surgery.
  
• Dr. Boydston rocks. He has an amazing bed-side manner and immediately put us all at ease. It was worth waiting the extra 2 days to see him.
  
• AC is cleared for soccer and anything else she feels like doing...for now.
  

We started the day with lunch at the Cheesecake Factory with Momma, Staci, and my football spouse, Mrs. Lori Hullett. Our waitress was a hoot and very accurately called Lori, "troublemaker" all during lunch. Love you Lor! Thanks for coming to lunch!

The staff at Dr. Boydston's office was great from the minute we walked in the door. Thanks to a HUGE exam room, Momma and Staci were able to come back with us for the consult. That was surprising but I was thankful to have all the extra ears in the room.

Dr. Boydston came in and greeted all the adults then he hopped up on the table with AC and proceeded to have a very detailed conversation with her. We spent about 30 minutes talking to him and much of that was just getting to know him. The fact that he spent that much time with us to basically order an MRI was impressive. AC soaked it all in. The more he talked, the more I relaxed.

The CT scan she had in Athens showed the Chiari, but an MRI is needed to see the extent of everything. She will have a 2 hour MRI sometime in the next 2 weeks at Scottish Rite. It is going to take so long because they have to check how her spinal fluid is flowing. I'm so happy she gets to sleep through it. I can't imagine being that still for that long as an adult. I know my fidgety 8 year old can't do it. It is tough to have to wait again but at least we know we'll have solid answers after the MRI.


My comic relief moment of the day:

On the way home tonight Cole asked AC, "Did you like your brain doctor?" Her response, "Yeah, his daughters go to Georgia."

Of all the wonderful things to say about her doc...that was her first response.

Go Dawgs!

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!!!