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Wednesday, July 21, 2010

Back with a Bryleigh Update

Okay well I am well over due for an update. I still read a lot of the blogs I follow but am horrible with updating my own. Bryleigh is 18 months old now. She is getting so big. She really has a fun personality. She is very sweet and loves to talk and give kisses. She has about 15 words (not counting family members) that she uses. We recently had a developmental appointment and they have her at 17 months for her language skills. Everything else is at about 14 months. I wouldn’t say she is a “walker” but she does take a lot of steps sometimes. She is really wobbly but in time she will have it down. Her therapist told me that the longer she crawls, the more muscle she will build up. She is about 26lbs right now. Her doctor said that she is in the 25th percentile for her height and 95th for her weight! The percentiles are suppose to be a little bit closer. For now we are just going to wait and see what her endocrinologist thinks. In time we may need to meet with a nutrionist to see what we can do. She said that since she has low muscle tone that her body does not burn the calories that a person with normal muscle tone would.
Bryleigh had her first seizure back in February. It was not a very bad one but still very hard to watch. The hospital said they thought it was a febrile seizure but her neurologist was not leaning towards that. He has always said he thinks she will have some sort of a seizure disorder. We opted to wait on daily medication but had some diastat just in case she had another. Well in April she had another seizure and that lasted about 15 minutes. The morning she had it I heard her spitting up in her bed. I picked her up and she could not sit up straight. I immediately thought she had something wrong with her shunt. I started to get ready to take her in to the hospital and she started seizing. About 5 minutes in to the seizure I gave her the diastat. I waited another 5 minutes and it did not stop so I called 911. They got there about 5 minutes later. We decided to put her anti seizure meds. He put her on Kepra. I noticed a change in her personality. She was very moody and would hit everyone. We talked with her doctor and he said that what we were explaining is a side effect of Kepra. We switched her to another medicine. I cannot remember the name at the moment.
Bryleigh had surgery in May to strengthen the muscle in her eyes. Her left eye would drift out sometimes (called exotropia). The ophthalmologist decided to do both eyes the day of the surgery. He noticed her right eye turning sometimes too. She did really well and healed very fast. Her eyes no longer drift out. She had a surgery scheduled in July to repair the bone where her encephalocele was. We decided to hold off on this surgery until she is about 2.5 or 3. They were going to remove bone from another place on her head and cover the hole in the back and go back later and remove bone from another place, split it in half and use one to cover the place where the removed it for the first surgery and put the other half where they just removed it. Her bones are not thick enough to split right now so she would have to do two surgeries. When she is 2.5 or 3 her bone will be thick enough to split and they can fix it with one surgery. So for now I have to be the nervous mommy and freak every time she bumps the back of her head.
She still has quite a few doctors but the frequency of the visits has gotten better. Although in the next month and a half she will have an appointment with her endocrinologist, a hearing test done, her 18 month check up, and a swallow study done. She chokes a lot on juice and water. She is not very good at using a sippy cup either. Her developmental doctor thought it would be a good idea to get the swallow study done to see if she is having a hard time with swallowing certain things. We may need to thicken her juice and water up.
I could write a lot more about Bryleigh but since I haven’t posted anything in about 6months I tried to cram as much as I could in this post. I will try and be better!


Silly girl. She got in the potty (yes it was clean). I am going to have to put something on them to keep her out.

Before her eye surgery

After her surgery. Her eyes looked crossed for about a week and blood red for about two weeks.

She loves talking on the phone!


6 comments:

Kristen said...

What an update, full of so many happenings. So sorry to hear about the seizures...yuck! She sure is a pretty little thing!

Nola's Journey said...

Nola had eye surgery on July 8. Her left eye turned in- I think its called strabismus- due to the hydrocephalus. Glad her eye surgeries went well! I hope the seizure medication will ward off anymore seizures.
She is a cutie!

Anonymous said...

What a sweetie...good to get an update on her...hope she will continue to do will....Best Wishes....

Hannon! said...

What a little sweetheart! That toilet picture cracks me up!

Audrey needed to be on thickened liquids for almost 8 months. She had laryngeal penetration which meant that anytime she drank something, it would hang out in the back of her throat and cause a lot of problems. The fluid in the back of her throat would drain to her ears causing a lot of ear infections. We had electro-therapy done on her for 6 weeks at Presby in Plano, it's called Vital Stem Therapy and it ended. We stopped thickening her liquids, we were using Simply Thick and with a prescription your insurance can refund you. I hope the swallow study shows a reason for why she chokes up on her fluids. I know that's stressful.
And, I hope that the new seizure medicine shows good results. Audrey was on Keppra too and it caused her to be a little monster.
And, I hope all the appointments over the next few weeks go very well.

AmyD said...

Hi - Bryleigh is such a beautiful little girl! Reading your post has been an inspiration to me, as my daughter has the same diagnosis and is due in Oct 2010. I just started a blog in my daughter's honor beacuse I thought what you are doing is so wonderful!! http://giannamaried.blogspot.com/
Thank you and may Bryleigh and your family continue to be blessed!!

Jolene said...

She is soooo cute!!!