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.
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.
My dearest daughter Payton.
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.
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.
Onward and upward ... the beach awaits!
You are an awesome mom, Bethany! :)ReplyDelete
That view looks fantastic! My son also has Apraxia and I have found the most important thing is finding the right therapist who knows what they are doing and it sounds like you have already found one! You truly are a warrior! I have loved reading your entries and love your pictures! Your kids are beautiful!ReplyDelete
I can't believe that view! Enjoy yourself!ReplyDelete
We just got Avery's tonsils and adenoids out due to the fact that she has sleep apnea..hers was 17 an hr but the dr is hopeful that taking them out has fixed it..we will see..we have to have another sleep study in three months..if this one checks out..ill have to remember to repeat it later just to make sure..Was it your request to do another sleep study or was it just routine????ReplyDelete
What a perfect place to be experiencing such peace!!!ReplyDelete
wow, that is a lot to swallow. i am glad you get some time off on vacation. i think that can be the best therapy of all. every time we return from vacation, jimmy has a new skill to show his therapist. enjoy this time! lots of love!ReplyDelete
Oh that beach is peace for sure. That is great that she seems to be tolerating the Bipap mask so well. A good nights rest certainly should help. Busy Busy. You are such a great mom and advocate for your kids.ReplyDelete
Ahhh, the beach whish I could go,but wait we have tar balls and oil all over. :( It is beautiful there, enjoy!ReplyDelete
I have some apraxia ?'s for you if you don't mind me getting in touch with you some time.
Have a great time
I love love love that what you choose to reflect on, after you have established your peace is your sweet girl! I've been reading for a while now. Love it when you update!ReplyDelete
Best wishes dude! Sarah Kate.
I love all your pictures. So miss the East Coast adn the beautiful ocean.ReplyDelete