My! How Things Change in a YEAR!

Today is an anniversary that we acknowledge carefully, but don't look back on so fondly. Anna had a full corpus callostomy one year ago today with 5 following surgeries due to complications. She is so brave and strong.

Summer has come and gone, although the Texas heat lingers! We had a nice and pretty relaxing summer. Camille was on the Steiner Ranch Stars blue swim team, attended a Backyard Bible Camp via Hill Country Bible Church, went to gymnastics for a few weeks, and just hung out with family and friends. Our only trips were a week to Arkansas to visit my parents and a day at Schlitterbahn Water Park. Oh! And I did go floating a river with Camille, that I will never do again by myself! We wrapped up the floating and headed to the outlet malls!

Anna continues to improve and thankfully, still only has about 1 seizure a month! The start of the school year has been good. She is riding the bus, which picks her up a little too early, but she seems to truly enjoy the ride.

The biggest change for us is that I have gone back to work in telecom. One day we were sitting at the pool and I asked Louis...what am I going to do in Sept. when the girls are in school and Anna only has therapy at the hospital one day a week now? His response is....RELAX! My response is...I don't do that very well! I find myself shopping, cooking, and eating....which sends me back to shopping, cooking....and you get the picture. Anyway, about week later a dear friend called and asked if I was interested in going back into telecom. After a couple of conversations and a 15 minute phone interview with the owner of the company, I'm working 4 days a week, from home for Bluemile Networks. I just started, but things are going well and the people have been great! Isn't it funny how God opens doors just at the right time!

Louis stays busy with TSM and growing his business. He also stays busy with his new/old Army trunk that he is busy refurbishing. It is from the 1950's and was used in the Korean War. Today, we just call it Mater...from Cars. It has seen better days, but with Louis' TLC, it will be good as new in a couple of years.

So to wrap it up....all is well with the Barkhuizen Family. Better now than it has every been!

Much Love,
Rebecca

Summer Time = Fun Time

It has really been along time since updating the blog...in this case no news = good news! Anna is doing wonderfully! In my previous post, I mentioned trying to take Anna off of one of the medications that we order from Canada (Sabril). This didn't work so well, so in March we tried to take her off a different drug (Banzel). As she came off of that drug, her seizures started to reduce from once a week to once a month. So we are now 5 months with only having 1 seizure a month! This is BIG! One of the medications (Depakote) that Anna will stay on was being suppressed by the drug that we took her off of, so for now only 2 meds, 3 times per day.

Anna was attending school and physical, occupational, and speech therapy 3 days a week at Dell Children's Medical Center. We have had this schedule for the past 7 months and it has been so beneficial. For the summer, she is now going 1 day a week for 2 hours and 2 half days a week for summer school. She has made so much progress in the past few months. The surgeries in Sept. and Oct. really set her behind and now she has caught up and being off the third medication has made her more alert. We are so proud that she is able to tolerate the therapies and school.

We did have a minor set back at the beginning of the summer that required Anna to have a surgery to move her shunt. The first couple of weeks in June we noticed that Anna’s breathing had changed, and within 48 hours it became very short and shallow. At first I wondered if she was developing a cold or an allergy. Then as things worsened after a few days, we thought of a chest tube that she has from a shunt that was placed there after her brain surgery in September. Surgeons at that time tried to place it in her tummy, where typically shunts empty, however Anna needed the extra pressure from her lungs to bring down the cerebral fluids. It’s way more complicated than my brain can explain!

We called the neurosurgeon on our way from from Arkansas to ask if the chest tube could have anything to do with her breathing or should we go to a pediatrician. They requested pictures of her chest and head to rule out anything. We were just past Dallas and had to speed up to make it to Round Rock before the imaging office closed on Friday evening. On Saturday afternoon Anna’s breathing became like panting and the surgeon called and confirmed that she did have fluid around her lungs. We met the surgeon in the ER and after more x-rays and a few panic attacks, Anna went into surgery. They removed 1 liter of fluid from around mostly her left lung and revised the shunt tubing back to her tummy. It was about a 2 hour surgery and once we got a chance to see her, she is completing different. Smiling and taking deep breaths again. Very scary Saturday, but all seems better now. After one short night in the hospital, she was back to being our sweet happy Anna.

Thank you all for your continued prayers and checking on our sweet, joyful, full of life, Anna!

Love,
Rebecca

Update...

It's been awhile since I have posted any updates on sweet little Anna. She is doing well and hung in there as we carted her across Texas and up and down Arkansas over the Christmas break. Just as the Barkhuizens' do, we had a few adventures including having our car towed just before we got to my Mom and Dad's house, everyone fighting a cold virus, and me forgetting some gifts in the attic. And just like the Barkhuizens' do, we painted a big smile on our face and made the best of it!!! We enjoyed spending time with family and getting out of our "normal" routine. It was a big treat for us all to pack up and spend time in NW Arkansas with my brother and his family. We even got to see a little snow! I stayed up until almost 10:30 most nights...that's late for me and slept in until 7:30 most days. Louis enjoyed not hearing his phone ring and just sleeping. Not having to be anywhere at any certain time was great! Camille was spoiled with tons of gifts (both B-Day and Christmas) and eating up all sorts of yummy treats. Anna loved being held as much as possible and crawling from lap to lap. She knows how much joy she brings all of us! She is 43 pounds of PURE LOVE!!! Today is really the first day that everyone is back at school/work and I am getting ready to clean/organize our house.

As far as the seizures and Anna's recovery...the drop seizures seem to be gone. The long tonic seizures are about 7-10 day apart. We are still tweaking the meds and taking her off of one that we have gotten from Canada for the past few years. Hopefully we can eliminate that one and save a little money and time.

Anna knows more than we think we does...she has figured out when we are slipping in her meds and has decided to throw little fits and not eat. Fun, fun! Louis and I sing, laugh, snort, and do anything to get her to take the them. She has decided that we are just crazy and she isn't going for it anymore! We are talking with doctors to see if anything can be made in liquid forms. We think it will be a little easier, since her nighttime meds are 9 pills that we have been serving in ice cream, yogurt, or pudding. No kid should hate ice cream, right?

Anna and I go to Dell Children's Rehab Center 3 times a week for therapy. PT, OT, and Speech. She is making improvements and tolerates it pretty well. She lets them know when she has had enough. Anna mostly keeps her right hand in a fist and they are working to get her to use it more, as she prefers her left hand/arm. This is a result from the surgery. Prior to Sept., she used both arms equally. She also has some hip weakness from the surgery and the long period in the hospital in which she did not wear her leg braces. With some resistance, Anna just started using her walker again yesterday at PT. She receives Botox injections in her lower legs quarterly that helps with muscles that should hold her feet straight. We received her latest injections just before Christmas, so we should see some improvements over the next couple of weeks.

Anna is also attending school in our neighborhood, but not the same as Camille. The ICAP class that Anna needs is just down the road a couple of miles. Much closer than the 3 hour commute (round trip) that I was driving for 3 years prior to this year. We miss The Rise School, but really enjoy and appreciate all of the assistance from the new school. Anna's teachers, therapists, assistants, school nurse, and administration have all welcomed her and have fallen in love with her too!!! I counted 12 people that worked with Anna on a weekly basis at school and 3 therapists at Dell.

2009 was filled with too much time in the hospital, too many surgeries, and things that we don't want to remember. However, 2009 also had many highlights. We now have a part-time nanny that we love and that loves Anna, we had a magical time at Disney World, Louis and I have started going out more in 2009 (thanks to our part-time nanny and our friend from The Rise School), we realized that it's okay that it takes an army to raise Anna and that we so lucky to have the resources and wonderful people added to our army, and mostly we have a family that would do anything in the world for us!!!

And don't think that I have forgotten Camille. Camille enjoys school, playing with her dog, and is taking dance again this semester. She thinks she would like to try Basketball, so we may add this in, if we can find the time in our weekly routine. Camille is so good with Anna and doesn't seem too affected by Anna's special needs. To her, it is our "normal" life and Anna is just a little different. Camille plays with her, makes her laugh, and helps take care of Anna's needs. Camille has a huge heart for people and wants to help take care of everyone. Her New Year's resolution is to make sandwich bags for the homeless in Austin and deliver them with a picture that she is drawn.

Thank you for continuing to check on Anna and pray for her. Please pray that seizures are gone one day, that Anna walks in 2010, and she continues to improve in her overall development!

The Magical World of Disney

Well, we made it to Disney World and had a "magical" time! It is truly like stepping out of one world and into something completely different. Everyone so nice, happy, helpful, smiling, singing, splashing, handing out stickers, snapping pictures, inviting you to eat, giving you tips on how to catch the best shows, meet the characters of Disney, skipping lines, anything and everything Disney at your fingertips. We stayed at the Polynesian which is just a lake across from Cinderella's castle. We watched the fireworks from our balcony or bed every night. We met almost every character and rode nearly every ride in the 4 Disney World parks. Anna had a blast. As did Camille. Magic Kingdom was our favorite park. We walked so much, but we were always ready to go the next day. We were even brave enough to go out a couple of nights. Anna was such a trooper and enjoyed meeting the characters the most. She loved their big faces and laughed so hard each time they would do something funny! Camille enjoyed everything...the rides, shows, parades, fireworks, the non-stop sugar treats, she even said she likes the Tower of Terror. However, she will NEVER ride in the AeroSmith Roller Coaster again!

Anna continues to do well. I think the drop seizures are about 97% gone and she still continues to have the long tonic seizures about once a week. That is what the surgeon expected after the surgery in September. Yes, she had one at Disney, but we at our resort for the night, so she was able to sleep afterwards and it didn't slow us down. We are adjusting some of her medications now and it is expected that we will go back for a week long video EEG sometime after the first of the year. Doctors are hoping that the area that the seizures are starting from has been narrowed down from the surgery and they will be able to pin point the exact starting point of the seizure. This is a little ways down the road, so we are keeping this far out on the horizon for now. I am planning Camille's B-Day party, Christmas, and then Anna's birthday, before we plan any more doctor or hospital visits.

Anna and I are at Dell Children's Rehab Center 3 days week and then she is attending school as much as possible. The therapy is working and her right side continues to get stronger. It is expected that it will make a full recovery with intensive therapy.

Thanks for checking on our sweet baby Anna! Please continue to pray for reduced seizures and full mobility.

Love,
Rebecca

Another Busy, but healthy week

Anna survived almost a full week of school, therapy and doctor appointments. She tuckered out on Thursday and we kept her home to rest on Friday. Just too much between school and travelling to Dell almost everyday. This week is more of the same. We have appointments at Dell everyday this week, except for Friday. Anna continues to get stronger each day and is tolerating and enjoying therapy and school. She has had 2 seizures since coming home from the hospital on 10/27. Doctors have suggested that we increase one of her med's and lower another one to see if it keeps the seizures further apart. The drop seizures seemed to have been eliminated with the surgery, although we have seen some seizure like twitching from time to time. Not sure what this means. Doctors have also suggested that we go back into the hospital in about 6 months for an extended EEG to see what the seizures really look like and where they are coming from. Too much to think about now.

For now, we are going to focus on Disney World the week of Thanksgiving and being grateful that we are able to go on vacation and that we have survived a roller coaster of a year! We could have done it without your prayers and our family's support!

Thanks for checking on Anna and continuing to pray for our sweet baby.

Love,
Rebecca

First Day Back to School

Anna's first day back to school was almost as emotional as her very first day leaving her mommy. :) Anna had PT and OT this morning at Dell then we got to school about 11:30, just in time for lunch. According to her sweet teacher, Anna had a fun day filled with painting, gluing glitter, turkey feathers, and some music. All smiles when I picked her up today and now she is taking a nap. Tomorrow will be her first full day and then the rest of the week is filled with therapy and half days of school.

Thanks for continuing to pray and check in on Anna.

Cleared for School

Anna went for her post op appointment this afternoon and was cleared to start school on Monday, Nov. 9. She is doing really well and is getting stronger everyday. We are averaging about 6 therapy appointments per week and this will be cut in half when school starts next week.

We are still not sure if there are any changes to her seizure patterns. She had a seizure Friday, so for the next couple of months we will track them to see if the surgery provided any relief.


Please pray that Anna stays healthy, seizures are reduced, and she continues to improve everyday!

Love,
Rebecca

A GOOD UPDATE!!

What a difference! Anna was very fussy day yesterday, but today she seems more like herself. No pain medication! She is moving slowly, but has a smile on her face and is wanting to play! No swelling, no seizures, just happy!

We are planning to rest this week and restart all therapy and home bound services next week. The next 3 weeks are busy with post op appointments, and 6 therapy/home bound appointments each week.

Please pray that Anna stays healthy with no swelling or seizures. We also pray that she tolerates and enjoys her therapy sessions.

Love,
Rebecca

Going Home

They changed the setting of the shunt last night to slow down the draining. Her CT scan showed her ventricles much smaller then they needed to be, which caused low pressure. No swelling overnight and she doesn't seem to be in as much pain today. Still a little fussy, but who wouldn't be?

Please pray that she is able to tolerate the current setting of the shunt, with no swelling, and no seizures. PTL! The air bubbles around her lungs have cleared. Please pray that Anna NEVER has to come to the hospital again! MIRACLES!

Love,
Rebecca

Another Night

Anna will remain in the hospital tonight. She has been fussy all day and just can't get comfortable. Because she is non-verbal, we don't know if it is her head, lungs, or what. We just got back from doing a CT scan of her head. Depending on those results, they may turn up the shunt or leave it as is. If the shunt drainage does not need to be change, they will increase pain medication. The air bubbles around her lungs can be painful not to mention the three incisions from the surgery on Saturday. It will take a few days for the air bubbles around her lungs to be absorbed, but they will go away on their own.

Please pray that Anna starts to feel better and her discomfort will be resolved. We also pray that she does not have any seizures.

Love,
Rebecca

Monday Update

I sure wasn't planning on spending my anniversary in the hospital. We are waiting for the word on whether we will be going home today or not. Still some concern that she may be over draining, which could be corrected externally with a remote to her shunt. Easy fix. Just want to make sure that it is the right decision. She is fussy and may be in some pain or discomfort.

Updates will follow as we know more.

Sunday Update

Anna's chest x-ray from the morning showed no big change. Doctor says he is not too worried about and would like to see her take it slow and easy today. We are most happy to report NO swelling! Yeah! The surgeon explained this morning that he has to be sure that she is not over-draining. A careful balancing act. She slept very well last night and all most all day today. Doctors aren't sure if this is a sign of over-draining or if she is just plain tired from the surgeries and pain meds. Poor angel has been through so much! She is eating well and all other functions of the body are working just fine! We are not going home today, but maybe tomorrow....

Please continue to pray for no swelling, good lungs, no seizures, good and quick recovery with no pain.

Love,
Rebecca

Surgery Update

It's late and I'm tired! Anna's surgery took place this morning from 8-10. The surgeon put in a new shunt and instead of the it going to her tummy (as the previous shunts have) he placed the drainage next to her lung. The fluid will be absorbed by her body and the compression from her lungs will help create a negative pressure to pull more fluid down from her head. She had a rough afternoon dealing with pain and an air bubble next to her lung that made it difficult to take deep breathes. Another chest x-ray in the morning will determine if the air bubble has corrected itself. They gave her some good pain meds and by mid-afternoon she took a long nap and had dinner around 5:15. There is a little - teeny weeny swelling, but hopefully that will clear.

Please pray for the swelling to be eliminated, air bubble next to her lung to clear, no seizures, and a quick recovery.

Love,
Rebecca

Surgery Time

Anna's surgery is scheduled for around 8 am Saturday morning at Dell Children's Medical Center. We do not know the exact surgery that he will be doing to correct the shunt, so at this time we are not sure how long the surgery will last or how long we will be in the hospital. I am praying for not more than 2 nights.

Anna is tolerating the swelling okay. It got bigger Wednesday and she had a seizure. She has been a little fussier each day. Hopefully and prayerfully after Satuday this will be over.

Camille will have her first sleep over with a friend Friday night (she is way excited). Louis and I are celebrating 13 wonderful years of marriage on Monday, Oct. 26. One of Anna's former teachers and now a family friend has offered to come over Friday evening for us to go for a couple of hours to celebrate our anniversary, since we may still be in the hospital on Monday.

Please pray for wisdom for the surgeon and his staff, successful surgery, no more seizures, quick recovery, and for little to no discomfort.

Love,
Rebecca

Surgery on Saturday

Received a call late this afternoon stating that Anna's surgery has been scheduled for Saturday morning at 9:00. Not sure why we have surgery on a weekend, but that was the message.

Love,
Rebecca

Pending Surgery Time

Anna's surgery will not take place this morning. They are still working on fitting her into the schedule, so it will be late today or tomorrow. We are waiting on a call.

Thanks for all the e-mails and prayers!

Love,
Rebecca

Surgery tomorrow....

Anna's swelling continues to go up and down. The surgeon had asked that I manually pump Anna's shunt 30 times twice a day over the past week and a half. By Friday when it was still swollen, I pumped it 400 times and it look smaller over the weekend. I continued pumping it 400 times Saturday and Sunday, but left a message with the surgeon on Monday to ask if I could be pumping too much. His assistant called this evening to say that they are scheduling her for surgery tomorrow. Not sure on the time yet, but we should be ready to go in the morning when they call. He said if I am pumping that much, then it just isn't working. It is very disappointing, but it has to be fixed. We are crushed that Anna will have to endure another round of surgery and all the post op poking and monitoring.

The surgeon is probably going to move the shunt to an area around her lung. He is reviewing and thinking about it tonight.

Please pray for the wisdom for the surgeon and his staff, for Anna to tolerate the surgery, for the shunt to finally work, and for big sister who is so flexible and understanding.

Love,
Rebecca

Update

Anna's swelling still looks smaller today than last week. Keep on praying that it continues to reduce. We also pray that the seizures reduce. Busy week ahead with Botox for her legs/feet on Monday, homebound services on Tuesday, PT/OT on Wednesday, and Speech on Thursday and Friday.

Overall, she seems stronger and happier. We are taking it Day by Day!

Love,
Rebecca

Update

Anna's swelling reduced a little, so we are waiting a few more days to see what happens. She is feeling well and doing good.

Love,
Rebecca

Update

Doctors say if the swelling doesn't decrease by Friday morning, we will go in for another CT at Dell tomorrow. Please pray that the swelling decreases in the 24 hours and Anna does not need any further surgeries.

Love,
Rebecca

Seizures and Swelling

One day we're up and the next we're down. It is a true roller coaster in the Barkhuizen house these days. Anna had a seizure Tuesday morning and the swelling would increase and decrease. We're not sure if the swelling caused the seizure or not. She has had 4 big seizures since the surgeries. Then she had some drop seizures this morning. Those were almost guaranteed to stop after the surgery on 9/9. Very disappointing. The head surgeon left a message today and said for us to watch her a few more days to see if the swelling decreased anymore. I'll talk to his nurse again this afternoon, since they are unaware of her seizures. I'm sure we have another CT scan in our future.

Please continue to pray that the swelling decreases, seizures stay away, and there is no more surgeries.

Love,
Rebecca

Swelling Update

Anna's swelling increased on Saturday and then decreased by half on Sunday. She went in for a CT scan this morning and we received a call this afternoon stating that it looks like the ventricle has decreased. Yeah! The external swelling comes and goes and was up a little this afternoon. The head surgeon has been in surgery all day and will not review the scans until this evening or in the morning. It looks like she will NOT have surgery, however we need to hear from the head surgeon and watch her carefully.


Please continue to pray for decreased swelling and for this to all clear!!! Mickey and Minnie are planning to see us in November!

Rebecca

Post Op Appointment Update - Prayer Time

Today wasn't a great day. Anna has had swelling on the left side of her head (incision site) on and off this week, but we didn't worry too much. She seemed happy (with fussiness mixed in from time to time), eating well, playful, she tolerated PT/OT on Wed., etc...Today was her surgical post op appointment to get the dates for her to return to normal activities, i.e. school. Well, her head was swollen at her appointment and they sent us for a head CT and then we returned to the surgeons office. The surgeon was paged and I was told that not only are we seeing swelling on the outside of her head, but her left ventricle is enlarged, larger than the pictures (CT, MRI) from when we were in the hospital. They asked if I would stay to see the head surgeon who was in a meeting. I waited 3 hours with Anna getting fussier and fussier. It was now past 3:00 (I had been there since 11:45) and still no surgeon. I ended up leaving to go home and asked them just to have him call me. Just when I was half way home, they called and asked me to come back. The surgeon wanted to pump her shunt and reprogram the drain (all external stuff). He explained that if this didn't work over the weekend, that he would need to move the shunt to a space near her lungs that would help push the fluid down faster with her breathing and the compression from her lungs. I can't quite explain it as well as he did, but it made sense. He was very compassionate and doesn't want to do surgery again if he doesn't have to. As my Mom said, it's knee time, so all my praying friends help us out and pray that Anna's left ventricle is relieved from the fluid that is causing pressure.

I finally got home around 5:30 (from a 12:00 appointment). We are scheduled to go back Monday for another CT.

Love, Rebecca

Update

Anna is recovering pretty well. There is swelling from time to time, but it seems to go down after she rests for awhile. She is getting stronger everyday and her right side is improving. Her right arm and hand still need quite a bit of improvement. She can move them, but will not use them on her own. We start PT/OT at Dell today, a home session tomorrow, and then speech at Dell on Friday. This will be our schedule for the next few months. We have our post op appointment Friday and they will tell us when she can start school again.

Thank you for continuing to check on Anna and for all your prayers!

Love,
Rebecca

Loving Home

Anna has enjoyed being at home, as well as the rest of us. We are all taking it easy the next few days and then we will start PT, OT, and speech next week. Going forward Anna will have all of these services on Wed., Thurs., and Fri.'s. Busy, Busy! Anna is getting stronger is relearning how to get on and off the couch, starting crawling a little, and doing a lot of sitting up. She is having trouble rolling over, since her right side is still weak, but hopefully she will overcome this as well. She is such a trooper and so brave.

Camille couldn't be happier! She loves coming home in the afternoons and playing with Anna and crawling in bed with her in the mornings. Anna just laughs at her!

Updates will follow!
Love,
Rebecca