Saturday, October 18, 2008

Kids Update...Busy November

So, this will be as brief as I can make it.

Kids therapy ended last Thursday. This week, I met with Child Find. Child Find evaluates the kids to determine if they will qualify for therapy through the school system. This would be ideal, as we are not charged for these therapies. The kids will be evaluated Nov. 6 (their birthday) for speech therapy.

Also-as some of you probably remember, Kynsie has grade 3 kidney/renal reflux and a duplicate ureter on one kidney. On July 18th, 2006 she went into septic shock from this condition, turning blue from the elbows & knees down, and we almost lost her. She has been on a low-dose antibiotic ever since to prevent a deadly infection. So, we have seen the urologist a few times since then for monitoring. She has had no breakthrough infections, which is really good news. We have known all along that the big 'end date' was age 3. Kids who naturally outgrow kidney reflux usually do so by age 3. She has about a 50/50 chance of having outgrown it, or requiring surgery. If she requires surgery, it will likely be soon, before the end of the year. The upside is that as of April, her kidneys showed no scarring, which is a good sign. Some kids with this condition have severe scarring and end up on transplant lists. So, on Nov. 10, Kynsie will have a VCUG test to determine whether she still has Kidney reflux. This test is unpleasant to say the least. She will be strapped to a table, catheterized, and then her bladder will be filled with liquid dye until full. Then x-rays will be taken to see if the dye flushes backward into the kidney. This test takes 45 minutes. Hell on earth is a nice way of putting it. So, the doc offered that Kynsie might need to be sedated. That is a really good idea, but there is a downside. Kids on the autism spectrum often regress after having anesthesia. Kynsie did regress significantly after her cyst was removed from her face in 2007. She wasn't the same for a couple of months. For this test, she will only be put into a twilight state, so less risky, but I am still concerned. Just the same, I don't think we have a prayer of completing the test without the sedation. She is freakishly strong, and a fighter for sure. SO, once we finish the test, we will go across the street to the doctor's office and find out our fate. No waiting...which is good and bad. Just rip the bandaid off.

Nov. 11 (the next day) Kynsie and Kyan get evaluated for Occupational therapy by Child Find. Timing is not ideal due to the test the day before, but we are trying to avoid a large gap in therapy, so we decided to go ahead with the testing. If Kynsie and Kyan both test as needing OT, they may be referred to the Special Needs preschool for anywhere from one 1/2-day per week to four 1/2-days per week. I initially thought that they would likely not qualify at all for OT, but I am beginning to question that now.

I was pulled aside at preschool by their teachers (very nice--not the mean directors) and they shared their concerns about K & K. Evidently preschools do testing 2 times per year. They are testing now and K and K are struggling on all fronts compared to their peers. I mentioned the possibility of them qualifying for additional preschool at the special school and they both said they hope that works out, and that they believe it would be beneficial. I suppose I should be used to such reports by now, but something in me breaks every time I get that sort of news. One more person telling me that something is wrong with my kids...that even though they have made miraculous progress, it still isn't enough. I can't help but feel that somehow I have not done/am not doing enough.

I just ached for the rest of the day. The special school is a good place. I know that. I saw it with my own eyes. In my soul, I know they would both benefit from time there. Just the same, I want them to tell me that my kids don't need OT anymore. I just want a little normal in our lives. Evidently we aren't cut out for normal.


We have lots of important dates coming up. Please pray for us.

Nov. 6 (kids' 3rd b-day) - All 3 get evaluated for Speech therapy by Childfind

Nov. 8-3rd birthday party at cousins Curry & Caden's house

Nov. 10- Kynsie's VCUG (pray that she does not need surgery)

Nov. 11- Kyan & Kynsie test for OT

Nov. 13-I interview a new pediatrican who is supposed to be supportive of parents' right not to vaccinate-we'll see if that is true

After all the speech and OT testing, I have another meeting with Child Find where they recommend certain therapy (or no therapy) for each child. It is possible that each child will be referred to a different place-as in across town from each other- for therapy. An no, they won't accomodate me and put them in the same place just b/c they are triplets. It depends on what the specific needs are. Certain speech problems are sent one place, others to another. If speech and OT are both required, preschool is usually recommended, and it is at still a third place. Braylen will not be adding anymore preschool as far as we can tell. If he qualifies for speech, he is definitely going to be somewhere other than the preschool.

Please pray that if they are referred for therapy, by some miracle, at least K & K will be at the same place. Somehow with all of this, I have to run a business too. :)

Will post updates as I get them.

4 comments:

Kajoli said...

wishing you all the best on these dates
I really enjoyed reading your blog I live in Ktown too and I also have a kiddo with autism and he will turn 4 on Nov 9 th

Mindy said...

'Oh, girl' is all I have to say. We'll be praying.

Mindy said...

forgot to tell you that I tagged you (http://jamrmiller.blogspot.com/2008/10/ive-been-tagged.html#links)

The Zanoni Family said...

Your post broke my heart, you are all in my families prayers for sure!!! and for the record NORMAL IS VERY OVERRATED!!!!!!