Two Mice Fell into a bucket of cream…

The first one quickly gave up and drowned.

The second one wouldn’t give up. He kicked and he kicked and he kicked so hard that he churned that cream into butter and out he crawled out.IMG_7679

Ladies and Gentlemen – Kendall IS that second (minnie) mouse!

{disclaimer": I just ate an inordinate amount of ice cream and am tired so you MIGHT call this a bit of “slap happiness/sugar high”…}

For those who aren’t lucky enough to be regaled with my random movie quotes on a daily basis, the above is from the 2002 movie “Catch Me If you Can”, based on the real life story of Frank Abagnale, Jr. as portrayed by Leonardo DiCaprio. (you do not even want to get me started on Leonardo Dicaprio…”gilberttttt, where’s mom????”….sigh. i’ll save it for another boring day.)

Anyways.

today was kendall’s IFSP meeting – which stands for something like individual family service plan – but I am tired and probably have that messed up – but the bottom line is – it’s how we assess what therapy is doing to help Kendall and how much she has caught up/is still delayed. The therapists each use an assessment tool that is based on percentages of delay, in order to quantify each child’s need for services based on their delays. Blah blah blah – basically it’s just a number. And in my head i know that, but it’s always still so hard for my heart to process that. Because I see her working SO hard, week in and week out, hour after hour. I see her completely conked out after therapy DSCN0025sessions because she has just utilized every last ounce of energy on putting shapes into containers and pointing at pictures in books. And while I know that the therapists are all only trying to help us get the services that kendall needs, it’s still a bit of a shock to the system to see “55% delay in gross motor, 67% delay fine motor, 88% delay expressive language”, and to realize that means kendall is still operating on the level of an average 12 month old. On a GOOD day.

I am not complaining – really I am not. I know that so many of my friends deal with SO much more and on such a more severe scale. we are so lucky and blessed to be able to receive such great services through our state’s EI (Early Intervention/Birth – Three) program. And kendall has made HUGE HUGE HUGE strides this past 6 months (we assess every 6 months). I know that my above paragraph sounds like it was a bad meeting today, when in reality it was anything but.

It was really and truly a celebration of how very far she HAS come, and how hard she HAS and IS working. And it was less about what her delays were, and more about, how can we keep her and help her keep moving forward? Especially when it’s so easy to see the drastic difference in her skills when she starts to get sick/too tired to function – how do we keep her at a good baseline, allowing her to retain MOST of what she works so hard to master?

So – we will continue with the insane therapy schedule. We will go back to the PMR doctor to get her feet re-casted for braces, but hopefully for lower foot braces than her knee high ones she got last year. We will begin the process to get her an augmentative communication device (I’ll have to do more research on this one and let you know what it means! I think it’s an electronic, or semi-electronic, little notepad type deal that allows kendall to use pictures/buttons to communicate her needs/desires/pain level/etc. with us during those times when she just doesn’t have the energy available to process language, either expressively or receptively.) I know that there’s a few of you out there who know EXACTLY what I am talking about and can probably explain it way better than what I am doing now! This will require another evaluation at a different clinic.

kendall1 And, we will continue to pray for many many more good days to be added to the good run of them we have had the past few weeks. We will continue to keep our fingers crossed every time one of the other girls comes home with a stuffy and runny nose. We will continue to know that the other shoe hangs precariously in the air, but we will try to ignore that nagging feeling that is ever-present that it might drop at any time.

(pic is kendall at 15 months)

Her 2-year “well child” checkup yesterday went, overall, pretty well. it’s never a normal visit. Of course she isn’t doing most of the questions that they ask at the beginning. And of course i have questions and concerns for the doctor. But most of them involve a crystal ball and a magical cure-all, so let’s just skip that part too, k? They put her on the scale once and she appeared to have lost  2 lbs, and then 1 lb, neither of which was giving me warm fuzzies (we have since weighed her on her regular scale and it seems like she has NOT in fact lost any weight from her week of overgrowth meds). And the dreaded discussion about placing a port (permanent IV access) again. We aren’t jumping in to it, but if she has to go inpatient for another infection this sick season, the surgical team will be consulted immediately. At least according to Dr. N. Which was a somewhat shocking, no, startling is a better word. Startling declaration to hear from her, and yet, she is right. We continue to dink around with these kinds of decisions, and it’s time to just start committing to something. This doesn’t mean she will definitely GET the port – it’s just that we will have a discussion regarding the best decisions for her based on the circumstances and projected future decisions (starting the IVIG therapy, needing IV antibiotics, needing more IV fluids, etc.). Trust me that there is a LOT of discussion that has already ensued to get to this point, and that it’s not something we would ever agree to lightly. But the fact that we are all tired of decisions being punted around while Kendall suffers brings us to have to make a hard and fast decision like this – which is simply that we will have a more in-depth discussion with an actual decision process IF she has to be inpatient again anytime soon. I have everything crossed that can be crossed that it is a moot point. We are also supposed to follow up with a local allergist/immunologist to discuss the whole vaccine reaction/possible new food reactions/IVIG options thing again. Yay. (obviously, i am uber excited at the prospect of going through kendall’s history/issues yet again only to be told that she makes no sense and they have no idea what else to do for her, but good luck and hopefully she just magically grows out of all this craziness! God bless modern medicine. I mean, at least back in the old days they’d stick a fricking LEECH on your torso or something if they were stumped. Geez.)

BUT –

overall, we are overjoyed at the progress Kendall has made, and is making, day by day. She is starting to show more and more glimpses of the impish little personality we have always known was in there. We are starting to hear her giggle far more than the whimpersDSC_0017 {banshee yells} of pain that have been her main form of communication for her first two years. It is hysterical (and just the teeniest bit sad, as you realize the implications) to hear her “imitating” her therapists with certain things. Singing something that resembles the “clean up song” is one, but my personal fave is when she “counts”. it is a sound that is very common in our house, as we have therapy going on more often than not, and in many aspects of each session, there comes a time when things are being counted. While you or I would say “onnnneee, twoooooo, threeeeeeee – GOOOOOO!!!!!”, what comes out of kendall’s mouth in her tiny little voice is more like this :”aaaaaa-ooooooooooonnnnn, aaaa-tooooooooooooooooo, aaaa-toooooooooooo” – oh i am not doing it justice. I’ll have to video tape it. It’s precious beyond words and cracks me up every time she does it, which makes her do it again.

(pic is kendall at 11 months)

but it’s just so danged awesome to see/hear her finally doing “regular” kid stuff.

So, for that, I am beyond grateful.

I have so many thank-you’s tonite, but I’ll try to sum them all up with her birthday post later this week. As we think of another mito angel who earned her wings last nite after a good long 13 year battle, i mostly am just thankful that she is here, with us, when things are super good, and when they start to take a dip to the not-so-good.

love and hugs~

T.

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Comments

  1. I love you Terra. Just look at Kendall’s sweet little face. There is a darling girl! She’s lucky to have you and Ben. I can’t imagine the heartache and fear you must fear constantly, and yet you scratch and claw your way to positive. You are amazing. So is Kendall. You are made for each other.

    Love to you and all the family.

  2. Terra, your ability to make me cry and laugh simultaneously is amazing…just like Kendall and YOU and the rest of your magnificent family.

  3. I love reading your posts. I can only imagine the kind of mixed emotions those sort of semi-annual meetings produce… Go Kendall for working so hard (and Go Mama for orchestrating the whole thing!) I am very familiar with augmentative/alternative communication devices and work with them daily. The one thing I would put out there is that I often use these devices with students that ARE verbal or somewhat verbal. The research we work off from at school clearly states that giving a child an AAC device (augmentative/alternative communication) will NOT discourage verbal communication and will actually encourage it. I have seen this to be true with many different students. If you can get over the mental hurdle of Kendall having one and figure out how to use it functionally in your home it can be awesome!!! You’ll have to let me know what you end up using. (this is my nerdy therapy side coming out) 🙂