Monday, April 26, 2010

Kyleigh's Weight Update

Kyleigh was measured today by our nutritionist in the home. She only gained 6 ounces this past month. However, given she endured a surgery and has been battling severe reflux recently, at least she gained. She is now a whopping 18 lbs 8 oz. We go to Duke GI this Wednesday morning to address the reflux issue and then we will see the speech pathology team to evaluate her post op cleft palate development in regards to feeding and speech. I am hoping that both appointments will lead us to answers for how best to tackle the feeding time woes we have had recently.

Tuesday, April 20, 2010

Not much change...

Dennis took Kyleigh to Duke for an eye check up. There isn't much to report on except her pressure is up and way UP, but the doc isn't too concerned as this yo-yo effect will continue until the drainage system they put in starts working when the stitches dissolve. They have changed her eye drop regimen and she returns to Gateway tomorrow. I spoke with her teacher and they have greatly missed the little munchkin. Ms. Carrie wishes she could just keep her full time but she is thankful that Kyleigh is well enough to go to school.

Friday, April 16, 2010

A week to remember...

I should say a birthday to remember, as I turned 32 this past Tuesday and of course Kyleigh made it so very eventful for me. She was seated in her booster chair that is attached to the dining room chair. She was buckled in safely. I moved to go get her more food when she dropped her spoon and started crying and reaching for it. Before I could get to her she had toppled over, chair and all and bumped her head hard on our wood floors. Luckily, if that is even a word to use in this sentence, she fell on her left side of her head. The surgery was on the right eye so it was not injured but her left eye orbital area began to swell immediately and it appeared she was getting a black eye rather quickly. After an hour of phone calls to doctors we spoke with the surgeon, Dr. Freedman, and she suggested we come in on Wednesday to have her checked. Needless to say I was still too worried to go out for my birthday or celebrate in any fashion. Dennis was so sweet he brought home my favorite food (Japanese) and an icecream birthday cake just for me. So although there was a traumatic event on this birthday it ended with a smile.

The next day I took her to see Dr. Freedman's associate doctor, Alice Lin, because Dr. Freedman was out of town. Dr. Lin said that everything looked fine. Other than scrapes and bruising the fall had not caused any further damage---phew! So glad to hear that news. Now we go back this coming week on Tuesday for her 2nd pre-op appointment for the right eye. Until then we make sure she is wearing Kaitlyn's old pair of glasses as they were so helpful in protecting her during the latest gymnastic event (fall from the chair).

Kaitlyn had a great week at pre-K. She has learned to recite "Little Boy Blue" and she blows me away with new words daily such as "suddenly" and "magical". I love that kid.
I know I'm a little biased being her mommy and all but she is a good seed.

Dennis and I have had a long hard week of working at work and at home. We are so thankful it is the weekend and hoping to find some time to spend as a family.

Monday, April 12, 2010

ENT update

Kyleigh had her post appointment with the ENT and Audiology team today since her cleft palate repair. And we welcome the good news it brought to our house hold of "all is well --- see you in 6 months"! Really???!!! Are you positive? Are you sure you looked at my kid? Those were the things running through my mind all at the same time "WOOHOO!!!". So her hearing is within normal limits and her tubes are in place and there is currently no infection. Amazing that she had such terrible ear infections for so long and now she is doing well.

Saturday, April 10, 2010

Post Op Appointment was Good

Kyleigh's pressure has already come down about 9-10 points since yesterday morning prior to surgery when it was 39. They are thankful for the small decline. They do not want it to be a huge decrease at a time as this may cause damage to the eye structure as well. She is somewhat fussy today at times but has been more playful than yesterday too. The doctor explained the "freckles" a little more in detail as "CHRPE" familial polyposis in the eye. She said that they shouldn't cause any eye related problems but she should be followed by a GI doctor. We have a eye drop regime to follow in addition to her normal medicine routine. We are thankful for naps and sleep and the small happy moments she has right now.

Friday, April 9, 2010

Home from Surgery

Kyleigh did very well this morning during her surgery. Her pressure was checked before surgery began and it registered 39 which is very high! The surgeons began at 9:17am and she was in recovery at 12:12 pm. We were on the road headed home by 1:30. Dr. Freedman stated that Kyleigh did very well through the entire process and things went as expected. She noted that Kyleigh does have "freckles" on her retina which is not a problem but more of a sign down the road for her GI doctor to be watchful over. According to her they are harmless to the eye but are signs of polyps later in life. Weird?! But I'm glad she knows that little piece of information and shared it with us and her GI doctor. For the evening, Kyleigh has Tylenol for pain and discomfort and must wear her eye patch until the doctor removes it in the morning. We report back to Duke Eye at 8:30 for a post-op. I must say it is great to be home for once and not stuck in a hospital room listening to IV machine and pulse O2 machine beeping. Kyleigh is pretty fussy when awake and she wants the eye patch off. It is making life pretty hard right now. She is currently napping which is the only time I feel like she is safe from hurting her eye. Please pray that she has a restful night.

Thursday, April 8, 2010

Eye Surgery in the Morning

Kyleigh's surgery is scheduled at 7am. We will leave Greensboro by 5:15am to head to Duke Eye Center. We are not slotted to spend the night this time unless she warrants observation after surgery. Will update after surgery---until then keep us in your prayers.
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