Medical Update

MEDICAL UPDATE

Hello All,

Well, we've had a very long two months of testing for Jazlyn and lots of information to share.

Our first visit was in early July to the International Adoption Center (IAC) at Cincinnati's Children's Hospital Medical Center (CCHMC), where they completed a thorough exam of Jazlyn and referred us for further testing. The examine consisted of a doctor's exam, OT/PT exam, blood work, social worker visit, etc. Jazlyn has Spina Bifida, the mass that was removed in China when she was three months old is called a meningocele. Basically, the spinal cord did not fully develop and the lower half of her spine where the meningocele was did not close properly. This caused cerebral spinal fluid (CSF) to leak out of her lower back creating the meningocele.

When a meningocele forms while the child is in embryo, it does not allow the signals sent by the brain to reach the lower half of the spine. When this occurs generally everything below the meningocele does not form properly (bladder, bowels and lower legs). With that being said a lot of the children cannot control their bowel and/or bladder function, also they are either delayed in walking or do not walk at all. Some require a lot of therapy or leg/ankle braces to walk, some require catheterization of the bladder daily and assistance having a bowel movement.

Jazlyn also has Tethered Cord Syndrome, which is when the spine is snagged or caught by fibers in her lower spine. This was repaired initially when they removed the meningocele in China. Jazlyn was referred to the Spina Bifida Clinic (MM Clinic) for more testing.

Dr. Bierbauer is her Neurosurgeon and has been leading the care of Jazlyn's spine. Dr. Bierbauer ordered a MRI of her full spine and head and that was completed last week. We got the results this week and she has a pseudomeningocele on her lower back (probably due to the surgery to remove the meningocele at three months of age). A Chiari II, which is a cyst the has developed at the base of her skull (the Cerebellum) and has grown into the top of the spinal cord, blocking the flow a spinal fluid to the rest of the spine. The Cerebellum controls one's balance and movement. And they believe she will be at risk of re-tethering at some point in the future. The good news is we are not going to have any surgeries in the near future, the plan is to re-image her in six months and continue to monitor her progress. If she develops pain or any other problems they will reevaluate things then and decide the appropriate course of action.

Dr. Jackson is her Urologist and has been leading the care of Jazlyn's bladder function. Jazlyn has had a Urodynamics test, ultrasound and X-ray completed to see how her bladder is functioning. They found the her bladder is abnormally shaped, it's not holding as much urine as they would like, but appears to be emptying properly. Dr. Jackson considered having us catheterize Jazlyn daily, but decided to wait until November when we have these test redone. If things improve we will not have to catheterize her, but if not we will begin that most likely in November.

We got the results of the blood work and it showed Jazlyn needed ten immunizations. So a couple of weeks ago at one of her appointments she got six of the ten shots. They brought two nurses in at the same time and she got two shots in each leg and one in each arm. And of course Daddy had to be the bad guy and hold her down while the shots we being given. I felt so bad for my little girl!!!

Jazlyn also had a physical therapy (PT) consultation. After that visit they decided they would like her to complete PT bi-weekly and at this time do not feel leg or ankle braces are needed. Currently there are not any open PT slots at the Mason Campus and we have been placed on a wait list to get her started. They did however, give us some exercises and techniques to do while at home to begin to help stengthen her legs.

The doctors and therapists are very hopefully Jazlyn will be able to walk. They are encouraged by the strength she has in her legs. Last week she finally began to crawl...which is AWESOME, considering she was not even able to roll over 10 weeks ago.

Melissa and I are totally at peace with whatever God's will is for our daughter. We are fully trusting in Him and are taking each day and appointment as it comes. We can see the determination of our little girl and I personally believe she will conquer all obstacles placed before her.

Thank you all for your continued prayers and support. We are truly blessed to have such great family and friends along side of us! We will continue to update each of you as we learn more.

God Bless,
Scott