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Peace. And chaos.

Posted Jul 01 2010 10:07am
As I sit here overlooking the ocean from a couch in my aunt and uncle's ocean front home, I feel the desire to blog. To try to catch up my blog. It is raining outside, but ain't no rain gonna stop my husband and kids from catching waves in the ocean. And here I sit, watching them pounce on the waves from afar.

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I'm pretty sure I have not felt peace like this in a long time.

Our life is chaotic, there is no doubt about it. Sometimes I sit back and wonder what our life would be like without having to sit through six speech therapy sessions, four occupational therapy sessions, two physical therapy sessions, countless doctor appointments and so on per week. Knowing the alternative would not include my girls, I am happy to live the chaos.

But having peace every once in awhile is so nice.

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My dearest daughter Payton.

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Several months back, we began to think Payton had Childhood Apraxia of Speech. We had her evaluated at the Down Syndrome Speech and Language Center for Excellence at Loyola College Columbia Center , which was founded by Libby Kumin ... who in my book is the Down syndrome/speech guru. The evaluation was very extensive and informative ... and she was officially diagnosed with apraxia. 

Since that time, we have added a PROMPT certified speech therapist into our regime ... and Payton has come so far. She still has a really long way to go, but it is so nice to see her making progress. Knowing that she will be starting kindergarten next fall has sort of put me in a panic to get her all the help we can to get her talking before then.

In conjunction with all of this, we finally decided to have her seen at a craniofacial clinic to see if indeed she has a submucous cleft palate. The history on that is when she had her tonsils and adenoids removed back in February 2008, her ENT noticed that she has a bifid uvula ... which is sometimes indicative of a submucous cleft. Although Payton's palate was palpated at that time and no evidence of the cleft was found, her ENT left some adenoid tissue in tact as a precaution. 

Given her ongoing speech delay, we just really wanted to know if she indeed was dealing with a submucous cleft. At the clinic, we saw numerous specialists ... a craniofacial surgeon, an ENT, an audiologist, a pediatric dentist, a speech therapist, a pediatric orthodontist and others I'm forgetting. The bottom line was that everyone was satisfied with Payton's progression. Given the fact that Payton can produce certain sounds, the speech therapist did not feel that she has a cleft. We left not having a 100% answer, but agreed with the craniofacial surgeon in that we will never know for sure until Payton will allow us to stick a camera up her nose so that they can see her palate.

A couple years ago, Payton was diagnosed with moderate sleep apnea and restless leg syndrome. After removing her tonsils and adenoids, her apnea was reduced to mild. A few months ago, she had a follow up sleep study done. And now ... she has severe sleep apnea and she still has restless leg syndrome. Groan. The average between her apnea and hypopnea incidents is 24.5 per hour.

Cue the BiPAP .

The day after we received her diagnosis, we had someone in our home installing Payton's new machine and instructing us on how to use it. We get one month to desensitize her to the mask and then we will go through an overnight study using the BiPAP to figure out pressures or something like that. 

Surprisingly, she has done very well. We have a daily schedule that tells us how to introduce it to her and she is moving faster than they expected (i.e. let her play with the mask for week one then move into having her put it to her face for like 3 seconds). She has already fallen asleep several times with the mask held to her face by her Daddy ... the hardest part seems to be getting her to wear the headpiece that holds the mask in place. 

She is making progress and that is all that matters. We are very hopeful that allowing her to get a better night sleep will affect her cognition and her speech. It might be a long shot, but that is what we are going for.

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The girls will both be attending preschool this fall through the county Child Find program. We recently revisited each of their IEPs and requested placement for both of them in peer modeling programs, which is what Payton was in this past year (i.e. 6 typical children, 6 children with special needs). I felt confident that Payton would get the placement since that is where she was last year, but I was not so sure about Nika. But she got it and I am beyond thrilled!  

The girls will go five days a week to different schools, so as to not have them in the same class. I think it would inhibit both of them so this was a request that I made that was granted.

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Onward and upward ... the beach awaits!
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