Tuesday, July 29, 2008

V-EEG scheduled

I received a call from John Hopkins today, jailynn is scheduled fro her
Video EEg December 15-22nd. That is when I will be on break from colleg
and will be able to be with her the whole week. Her seizures are not
frequent enough to need to do it asap. her docotr said that is fine.
she hasnt had any seizures that we know of in a week i think, i dont
have my "calender" in front of me. Its gonna break my heart to have to
watch her seize, to make it happen on purpose. I hope they can get
enough info in less than one week. it is so close to christmas too. My
husband also is trying to get his shoulder suregry around that time so
i will be available to help him take care of the Jailynn while he

Saturday, July 26, 2008

Milestone reached!!!


Jailynn is now 27 months old. She just started this wednesday walking independantly! Before we would have to hold her left hand for her to walk. Now she can do it on her own! We are so excited and proud. Jailynn is proud of herself as well. you can see it in her face. Now she just needs to learn how to pull up to stand/ stand up on her own. She is still pretty wobbly so we have to stay close to her when she is walking. She is getting better at turning around too. I was at school when she started at night and work during the day so I got to see it myslef on friday. I had to go sow her off to the neighbors.
Here is a video of her walking, copy and pste this address to see it:


Meet Jailynn

Jailynn is now 2 years old.
She was born May 31st, 2006 on my due date. I had a completely uncomplicated pregnancy and labor. She was 7 pounds and 7 ounces and 21 inches long. Shortly after birth she began to develop 3 hemangiomas, some peopl ecall them strawberries. 2 on her head and the largest on on the left side of her belly. At her 2 month old check up her pediatrician noticed Jailynn wasnt focusing light in her eyes correctly. She sent us to an eye doctor, that just wanted to do surgery for a weak eye muscle. We didnt like her but she did reccomend we see a neurologist "just in case" because she said jailynns eyes were not sspaced properly. The neurologist thought she was fine, cause 2 months olds dont do much anyway but she wasnt smiling at anyone on purpose. He sent us to another eye doctor and to have a CT scanjust in case. Well we went to the eye doctor at Wilmer at John Hopkins and She said Jailynn had a pretty bad astigmatism in both eyes. At 9 months old Jailynn got glasses. The neurologist gave me devastating news over the phone about the Ct, I ended up getting the report faxed to my job and googling all the medical words. We needed an MRI to get a better Diagnosis. The Ct said she had Complete Agenesis of the corpus callosum and probable lissencephaly. The night before tehe MRI Jailynn had her first seizure.Well the MRI ruled out lissencephaly (which is way worse of a DX) but it confirmed the ACC and right dysplasia. She had an EEG at 3 months old and was put on Tegretol ( the generic though)

Jailynn would do good on the medicine for 2-3 weeks and then we would need to increase. She reached her max dose of 10 cc twice a day and April 2008 we added Keppra. She is not at her max dose 4 cc twice a day along with the tegretol.

I have talked to her neurologist and he feels she will benefit from a right hemispherectomy. I was so upset when he first metioned it last year. Now it is looking like it may be the right choice. Jailynn should be having a Video EEG in December, when I am on break from college. She may end up having the hemi surgery done May 2009.

***I copied this from another diary I have******* someone asked what was on jailynns head but i didnt have access to their dairy so i thought i would post some info. jailynn started developing hemangioamas after she was born. they started as dots and grew big. she has 3 2 on her forehead and a big one on her belly. 1 of the ones on her forehead is growing under the skin partially and thats why it looks like a purple bump. i did a search online and got this info to share I also put info about her brain disorder ACC A hemangioma is a type of birthmark. “Hemangio” means blood vessel and “oma” means tumor. Hemangiomas look like a thick mass of blood vessels above the skin and are usually harmless. Who gets it? Just 1% of newborns are born with hemangiomas. However, most are not present at birth. Premature babies tend to have a higher incidence of hemangiomas, approaching 25%. Hemangiomas are not as common in black children. What causes it? Researchers do not know what causes hemangiomas. What are the symptoms? Most hemangiomas aren’t obvious at birth. However, they grow rapidly shortly after birth. After this burst of growth, they often become smaller and lighter in color, called “involution,” over a period of years. Some hemangiomas will eventually disappear completely. Some rare hamangiomas, called “cavernous hamangiomas” can become sore and bleed. In severe cases, these can cause uncontrollable bleeding, delayed growth, or impairment of vital functions. How is it diagnosed? Hemangiomas are diagnosed according to their appearance and growth pattern. What is the treatment? In most cases, hemangiomas require no treatment. However, your doctor may recommend surgery for growths that gradually disappear, but leave behind scarring. Cavernous hamangiomas may require treatment with steroid medications or embolization, where the hemangioma is injected with a material that blocks the flow of blood into the growth. These types of hemangiomas may also need to be surgically removed. The drug interferon may show promise in treating more serious types of hemangiomas.

Agenesis of the Corpus Callosum...put in easy to understand words..the connections between the two hemispheres of the brain are either missing completely(C-ACC), or are partially missing(P-ACC).Some have argued that this is a natural split brain with each side working independently however, there are some ACCKIDS who have shown that both sides of the brain do communicate. The brain is a very redundant organ and CAN compensate for areas that are affected. No two children that have ACC present the same, which makes research on this condition very difficult, and almost impossible to predict the outcome of cognitive abilities. Many ACCKIDS do benefit from physical therapy as well as speech therapy, occupational and vision therapies. ACCKIDS can run the gamut of related disorders such as, Septo Optic Dysplasia/ONH, Hydrocephalaus,Seizures, Spina Bifida, Feeding issues, CP,ADD/ADHD, Sensory Integration Dysfunction etc. Some are affected genetically although it has been difficult to prove that ACC is a genetic disorder.