Saturday, January 10, 2009

Simple Words Are Music To Our Ears

Sorry for the late update. Needless to say this has been a hectic week. Thank you all for your thoughts, prayers and your calls.

Thursday started out really early with an appointment time of 6:00am (and a 4:00 wake-up call). We left our house at 5:15am and the questions began. Anna Kate seemed to be okay until we pulled into the Scottish Rite parking garage. Reluctantly, she and her American Girls got out of the truck. We got checked in and Anna Kate seemed to be okay.....well, until the nurse called her name! She begged for "NO SHOT IN MY HAND". To our surprise, the nurse said "Okay, we can try this procedure without any sedation". He told us they would give it a try and if it didn't work out then the doctor would have to sedate her. So off we went into the MRI room, no sedation but tears flowing down her cheeks. Honestly, we did not think she could be still for 40+ minutes (and to add a loud, loud machine). Dan and I talked to her and she assured us she could be still and watch a movie! To our surprise, she got up on the table, the radiology tech placed the head gear around her and moved her into the machine. Because she was NOT under sedation, we were allowed to stay in the room with her. She did GREAT ~ the tech had to stop the scan only ONE time. Anna Kate started calling me...she needed me to scratch her foot.

After the scan, we headed over to the Neurosurgeon's office. We had the pleasure of visiting with "Dr." Christy (really a nurse) and Dr. Boydston. The previous scan was compared to this scan....Sweet words were spoken ~ STABLE and NO CHANGE. Her ventricles remain enlarged but no more so than the previous scan. After a complete head to toe assessment on Anna Kate, Emily and Mia (the two American girls she HAD to bring), Dr. B went onto to say that the Chiari is aggravated by growth. Typically, a Chiari surgery doesn't occur until adolescents. Growth causes the chiari to become distorted leading to neck pain, headaches and difficulty swallowing. For now, we are just to monitor her for the leading signs and symptoms. Dr. B suggested that we come back in 3 years for a follow-up and scan.

Although the uneasiness continues and she has NOT been released permanently, we are clinging to the words - STABLE and NO CHANGE. At 4 1/2 years old, Anna Kate has endured more than most will ever go through in a lifetime. She is such a brave, little girl and now we know that she can sit still for more than 5 minutes. Again, thanks for your calls, thoughts and prayers! They mean more than you will ever know.

Monday, January 5, 2009

4 Years Ago ~ Anna Kate

Every day is a special day for Anna Kate BUT today is extra special. Four years ago today, Anna Kate underwent a surgery to correct her little skull from a birth defect and to assess a lifelong minor brain defect.

As Dan, my daddy and I were leaving our house for the hospital, my Mom gently said "Noel, God doesn't close doors without opening others". As I fight back the tears today, I can still hear her voice over and over again ~ I find myself leaning on those words more that she will EVER realize. That small little phrase is so powerful and so very, very true. For this Anna Kate is our little, precious miracle from God.
This is a picture of Anna Kate a couple of weeks prior to the surgery.
Here is a copy of the email (prior to blogging) that Dan and I sent to family about our sweet, little Anna Kate and her surgery.... and a couple of pictures.

I took Anna Kate in for her 4 month checkup at the end of October. Her pediatrician noticed an unusual egg-looking shape in the crown of her head. She referred us to a Pediatric Neurosurgeon to look at the potential problem. The Neurosurgeon wasn't really that concerned with the egg-looking shape at the crown of her head. He was more concerned about the "caved" in portion of her skull (at the base of her neck). Ironically, this is the same spot that I asked the Pediatrician (3 different times) about right after she was born (in hospital) . The Neurosurgeon ordered a CTScan to look at the bone structure. He sent us over to the hospital the same day to do the scan (his office is located on the Scottish Rite campus so we just had to walk across the street to the hospital). The CTScan revealed "ridged" shaped bones. The Neurosurgeon told us that night that he wanted to send us for an MRI. He said that he suspected premature suture closings and a possible Chiara (kee-ar-ee) Malformation. Because the CTScan didn't show the suture closings, he also ordered a 3D model of her head. The actual model would allow him to physically look at her skull, measure the suture openings and if needed, prepare for surgery. We took Anna Kate in for an MRI and his initial diagnosis (after the CTScan) was accurate. She has been diagnosed with premature suture closings and a Chiara malformation. Her lambdoid sutures (in the back of her head) have partially closed. The neurosurgeon refers to the closings as "doorstops". This means that the brain will not be able to properly grow and expand if the sutures are NOT opened up. In addition, she has what is called a CHIARA (Kee-AR-ee). This is where the cerebrum "drops" from the normal spot in the skull over the spinal cord -- making a tear drop (how appropriate, huh?) looking shape over the spinal cord and brain stem. The neurosurgeon referred us to a Pediatric Craniofacial Doctor (Plastic Surgeon) for a "2nd" opinon. This appointment was nothing more than confirmation that Anna Kate had premature suture closings and surgery was required. The main concern at this point is the premature sutures. When completing the surgery, the Neurosurgeon will be able to assess the severity of the Chiara and at that point will determine if surgery is needed to attempt to correct the problem or leave as it. The Chiara can be present in different stages -- Both surgeons BELIEVE that she has Chiara I and is minor (we are so hoping). The Neurosurgeon says that many people may have this stage and NEVER know it. At this point, he thinks we just need to monitor the Chiara. She will have to go back for MRI's every 6 months for about 3 years. If the "drop" gets worse then we will have to take further steps (i.e. surgery). On the 5th of January, the doctors will have to make an upside down U in the back of her head, remove the lambdoid "plate", restructure the plate using plastic plates and screws and reattach/place back on her little head. We are told the procedure will take approximately 4-6 hours (of course, it will be the longest four-six hours of our lives) and she will need a blood transfusion...the plate will be screwed back into place with plastic screws which will dissolve within 6-9 months. The Craniofacial doctor told us this is a relatively "common" procedure. The rare part is the closure in the back of her head. Of course, he did tell us that we run risk with the surgery -- potential brain damage -- small chance but potential risk.

If the Chiara is NOT corrected in the January 5th surgery, we have been given signs/symptoms to watch for over time. If the Chiara get worse then she could have the following problems:
difficulty in breathing (known/referred to as STRIDOR),
difficulty in swallowing,
mobility problems (walking)
regression in speech, motor skills, etc.
balance issues,
severe neck pains,
severe headaches,

These seem to be the most common but there are several more signs/symptoms that could go along with this malformation.

The Ped Neurosurgeon says that Chiara I is often unnoticed/undiscovered until early adulthood. If there is any good news, I guess this is………we may have caught it in time to do something. The Neurosurgeon says that we just need to love her and stimulate her. His nurse likes to prepare the parents for good and bad situations. She has told us worse case situations. Of course, we are thinking the worse and praying for the best. The words "she is going to be fine" are words that Dan and I can hardly stomach. We hope and pray that she is going to be fine but this whole process is scary. No one knows exactly how we are feeling. The neurosurgeon told us we could look this up on the internet but cautioned us that anyone can put anything on the internet………he said believe only a small % of what you read. Dan has looked a little bit up but of course, he continually finds the worse cases. We have decided to stay away from the internet for obvious reasons.I have to believe that God will give us strengthen and comfort through all of this. We are NOT dealt more than we can handle, right????? Dan and I have beat ourselves up over WHY -- we will never know the answer. I took care of myself during pregnancy so why US? People smoke, drink and do drugs and NOTHING is wrong with their babies. Getting babies here safely is just a smart part of the worries parents face, huh? When you are pregnant, you worry for 40 weeks that they get here safe and healthy. I thought I was home free!!! We are scheduled to go see a geneticist in January. Not because we are having any more kids but for the girls sake. For the most part, we are told this hasn't been linked to genetics and that it is just one of those things. For now, her little, sweet smile keeps us going. She seems to be progressing nicely and on targets determined by history/doctors. We have seen a lot of different kids at Scottish Rite that have had bigger problems than Anna Kate. I shouldn't be so selfish to ask WHY. I can't imagine how those parents feel! When your own child has an issue, you feel like it is the MOST severe problem in the world. I am thankful that the pediatrician noticed a problem and we MIGHT have a chance to resolve the situation with minimal to no brain damage. Anna Kate's sweet little smile keeps us going and Emily's desire to make Anna Kate laugh is quite amusing. To look at Anna Kate, you would never know anything was wrong. This Thanksgiving (more so than ever) Dan and I are extremely thankful for our two precious daughters -- Em and Anna Kate. I am extremely thankful that I have such a wonderful husband who works hard to take care of us and loves us all so very much. We will continue to update as we find out more...

These pictures were taken after she came out of surgery and placed in ICU.

These pictures were taken 2 days after surgery - just before we were moved to the regular floor (out of ICU).

And here is Miss Anna Kate 4 days after surgery. I took this picture the night we came home from the hospital. She looks pretty amazing, don't ya think?

Anna Kate came through the surgery with flying colors. We were told, initially, that she would be in ICU for about 5-6 days and on the floor for 3-4 days. She was moved from ICU to the floor after 2 days. After 2 days on the floor, she was discharged to come home. WOW! She did great! For the first two years, she was monitored every 6 months for fluid build up (shunt was a possibility). She has maintained all levels within normal limits and was put on a 2 year follow-up schedule. The Geneticist appoint was inconclusive. Of all the test performed, nothing could be linked back to genetics.

This Thursday, January 8th, we will again make a trip to Scottish Rite to take pictures of her little brain. As she gets older, her fears are stronger! We have tried to prepare her for the MRI on thursday. Of course, she has tons of questions and is having a hard time comprehending just exactly what Dr. Boydston and Dr. Christy (really Nurse Christy but I'm not pushing it w/ AK - ha) will be doing! Please keep us in your thoughts and prayers. I will update again on Thursday with the results.