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Wednesday, June 22, 2011

8 Months Later

Well it has been 8 months since I have posted an update. I am going to attempt a short re cap of those 8 months.
Bryleigh has continued to amaze us. She has a very big vocabulary and an even bigger personality. She is quite the sassy little girl. She loves to make people laugh. She will tell us to "watch this" and will do something to make us laugh. It is so very cute. The other day she stayed with my mom for a few hours. My mom laid her in the bed to take a nap and told her to go to sleep. Bryleigh sits up, crosses her arms, looks at my mom and says "I don't have to". Now I know this is not the best of manners, and I do not condone this type of behavior but it is really funny. Of course when she does things like this I do not laugh in front of her and I turn my head if I cannot stop a smile but telling the story later is pretty funny. Sometimes when something happens she will put her hands up and say "seriously?" Of course it sounds more like "sessly". She is always singing her ABCs. She has gotten it down great now. She is also counting to 12. Okay so I could go on and on with stories and new developments. But I will stop so that this does not get too long. :-)

Bryleigh was diagnosed with dysphagia last year so we put her in feeding therapy. A few months ago she had another swallow study done and they said she only had small trace aspiration. She was not coughing when she would drink so I think the therapy did help her. This month we were able to stop her feeding therapy and will be doing speech language therapy. The developmental doctor recommended this. This month we went for a follow up with them and they said her receptive language was about 6 months behind and her other language skills about 4-5. I was a little shocked at that because she has such a big vocabulary and I am always being told by people that she talks really well. I am still pleased with how well she is already doing and am not going to stress about it because I know this does not define her and I am with her and she still continues to defy what her doctors say.

She was put on trileptal for her seizures awhile back. She does not have them often but they are still always a concern. Her last two seizures were focal seizures as where most of the others were absence seizures. I am not sure what brought on the change but everything about them was different. No vomiting, no staring, and longer. I have been keeping a log of every time she has a seizure. I try to put what we were doing before, what she ate, what she drank, etc. and I have not been able to connect the dots. The last three seizures were after she had been playing and was a little hot, sweaty and tired. I'm not sure if this is a connection but I am very conscious of how much she exerts herself now.

On May 17, 2011 Bryleigh had surgery (Cranioplasty) to repair the bone where her occipital encephalocele was. She had surgery when she was 7 days old to repair the skin but she has always had a soft spot in the back of her head. This really scared me because there was no bone protecting her skull back there. A craniofacial surgeon and her neurosurgeon performed the surgery together. They did a bone graft using bone from her skull to cover the hole. Her recovery was amazing. Her doctor was even shocked by how little this affected her. She was out of the hospital in 3 days. She was only there the 3rd day due to a stomach bug she got in the hospital. The surgery took 2 hours. She was back in the OR for 4 hours because it took the anesthesiologist 2 hours trying run the arterial catheter. Another anesthesiologist finally went in and was able to get it in her thigh. This caused Bryleigh more pain than the surgery itself I think. She had this in her leg for the first day. She would not move her leg, cried, and vomited a few times. As soon as the nurse took it out and got her bandaged up Bryleigh looked at her and said "thank you". She was sitting up and very talkative after this.

If I can think of any other updates I will be sure to post them. I have so many pictures from the last 8 months I had a hard time deciding which ones to put. I hope this post was not too long :-) Hopefully I will be back soon.





Posing for the camera



Her cute little smile


Her bubba is trying to teach her how to play baseball (notice the bat upside down, he said it was easier for her to hold



After eating Spaghetti



Going for a walk with her Choob Choob



On the way to the hospital for her surgery. This face explains how she feels about it



Morning after surgery.



Eating dinner the day after surgery




Eating breakfast the morning we got to leave the hospital

3 comments:

Anonymous said...

She is sooo ADORABLE! I'm glad she is doing well...Continued Prayers.....

Kelly

Jenna said...

HI Bryleigh
My name is Jenna and i came across your site. U are an amazing, courageous, strong and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. U are so tough. I was born with a rare life threatening disease, and love it when people sign my guestbook. www.miraclechamp.webs.com

AmyD said...

Hi - loved the update!! Bryleigh continues to be an awesome inspiration to us and I'm so happy to see all her progress! She is such a sweet sassy girl full of personality! Glad her surgery went well. Blessings to you all!