fab four

Camilla turned four on August 14th and she had a family party that night and then a family and friends party on the 22nd! She loved both of her celebrations and has gotten good at tearing into those gifts! I can't believe she's four! It seems like just yesterday...now I'm really sounding old!!!

pics from hospital stay-

Finally-these are the pics from Camilla's hospital stay at Children's a couple of weeks ago. This was the test for her 48 hr EEG. The pics give you an idea of how confing this test is and how she is actually 'hooked up'. Thanks for all the prayers - I KNOW they were answered! She cried herself to sleep after 10 minutes of applying the leads - so the last 50 minutes were easy on everyone. She did so well having to stay in that same small bed for the entire 48hrs - she never even tried to get up! She sleep alot during the time and never once had to be sedated. I don't think I would have done as well as she did! We will go back for her MRI in a couple of weeks and then after that the follow-up for all the results. Please continue to pray!

medical update:

It's been a couple of weeks since I posted a medical update so here goes! Camilla's seizures have improved drastically since beginning Banzel. They are back to the milder myoclonic jerks that many times only Brandon and I will notice because of the way she tenses up or her eyes move or arms move. We are VERY thankful that the horrible seizures that were a constant part of our summer seemed to have disappeared. We were very unsure about beginning Banzel and still have our reservations but so far we have not seen any major negative side effects with the exception that she is back to mouthing EVERYTHING (and of course it's flu season)! She continues to take Phenobarbitol and Clonazepam daily. Camilla is also coming off of a growth spurt that lasted most of the summer and we believe that may have contributed to the severity of the seizures and why they are improving now (growth spurts have certainly affected her in the past). Camilla's seizures are still present everyday and right now she is averaging 5-20/day. These are usually spread throughout the day and may come in clusters of 2 or 3 or more but also may not.

Developmentally she is showing some progress. Our favorite words right now are dog, bubble, bath, no no no, baby and bear. She is attending the BEST program at Westside full time (8-2:30) and is doing well in this environment. She loves going to her classroom every morning and loves her teachers and snack time! She recieves speech therapy 3 times weekly at the school and we are in the process of refferal to the Speech Center at Children's.

Camilla goes next week for a checkup with Dr. Blount, the neurosurgeon that placed her VNS in Feb., and we hope to have a good visit with him. Camilla discovered how to pull on her VNS battery that is located to the front of her armpit on her left side and has managed to pull so hard that a wire is now visable in her neck under the skin. This is a cause for concern and we are worried that she has possibly disconnected the device, damaged the nerve it was attached to or ?????? We look for him to test the device and do x-rays next week. Please pray that everything will work and be OK and that there will be nothing that has to be 'surgically fixed' with this.

In a couple of weeks we will return to do the MRI that we were not able to have done during our hospital stay (we were bumped for a child with a newly found brain tumor) and then after that a follow-up with the neurologist to hear the results of that test and the 48hr EEG.

Camilla continues to be happy, otherwise healthy and a joy and blessing to our lives! We have so much to be thankful for-