Thursday, August 4, 2011

Cleft Palate Clinic

Yesterday we attended Scarlette's yearly cleft palate clinic (CPC) appointment. This is comprised of 5 appts in a row (Plastics, Dental, Speech, Audiology, and ENT), then we have a 1 hour lunch and a "team meeting" with all the dr's/nurses and myself to discuss Scarlette's progress and any new developments.

Scarlette's day was actually quite eventful. We learned that she most likely has minor to moderate hearing loss in her left ear (she already wears a hearing aid on her right ear) and that there was also fluid in that left ear that could be causing the obstruction and throwing off the tests. Both audiology and ENT feel that it is best if Scarlette gets replacement ear tubes put in as soon as possible. She HAD ear tubes place last August but the first one fell out within a few weeks and since she had no ear infections ENT thought it would be fine to just leave it out for the time being. Her right ear tube had actually been knocked askew (we learned this about 2 weeks ago at her civilian audiologist) and so yesterday they pulled it out. That was an interesting thing to watch! They actually had a camera hooked up to the microscope so I saw them insert the instruments into her ear canal and pull out the tube. It was uncomfortable for Scarlette but not painful, and though I felt awful for her, I have to admit it was interesting to watch!

ENT and I also discussed the possibility of a tonsillectomy/adenoidectomy because we feel that her breathing is impairing her ability to eat, speak and breathe adequately. ENT felt that although her tonsils are abnormally large for her size, she is still too young/small to have a tonsillectomy performed. However, they do feel that performing the adenoidectomy simultaneously with the ear tube placement WOULD be tremendously beneficial to her breathing. So probably late September/early October we will be having both of those procedures performed. Thankfully, they are outpatient so we are supposed to go home the same day if all goes according to plan! Audiology will also come in and perform a sedated ABR (the test that measures brain wave response to sounds) to see if we need to get her fitted for a hearing aid in her left ear (my gut is telling me that she will end up with one).

So all in all, LOTS of news at this CPC. Most of this news would be bad to a parent of a normal child but I'm actually very excited for her adenoidectomy because I think it's going to help her gain feeding/speech development at a much faster pace than she is now, and the tubes will hopefully help her hear even better than she is now with her corrected hearing.

We also found out today that Scarlette will be having a 6 hour pre-op appt for her upcoming surgery on August 17. After that I will be able to describe more in-depth exactly what the procedure is that will be performed on her heart. We learned today about a very cool program that Children's offers for it's heart surgery patients. Most likely Scarlette will need a blood transfusion or platelet transfusion during her surgery (most children do, and some adults do). At Children's they offer the opportunity to have people donate their blood on your children's behalf. This way, you can feel confident that your child is getting blood from someone you know and trust, AND Children's blood bank is able to replenish their stock and not be at risk for depleting their blood supply. I have asked any friends who live locally that are a match to Scarlette's blood type if they would want to do this and we have had an overwhelming response! I am not allowed to donate because I am pregnant, but so far we have approximately 7 people who are willing and able to donate! Tomorrow I find out whether or not they will accept O+ blood (Scarlette is O-). They told me today it's possible because sometimes they use just the platelets. We are hoping to have a group go over to CNMC next week sometime and all donate together. This brings me to tears, as it's truly a sacrifice of one's self and a testimony to how many people love our little girl. We are so thankful that God has brought SO many people int our lives that have supported us emotionally through this journey. If you cannot donate because you aren't a match or don't live locally PLEASE donate in honor of Scarlette in the upcoming weeks. There are so many babies that don't have the support that Scarlette does and they need blood just as badly! Giving blood is one of the greatest (and relatively easiest) things that we can do for others, and as someone who tries to give blood as often as I'm eligible, I encourage you to seek a center locally and give blood in honor of Scarlette. I know there will be a family out there just like ours who will be eternally grateful!!!!

the Skrove's

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