Thursday, December 13, 2007

Hodgepodge.

A quick sidenote, the doctors feel strongly that Jakie will pass today, perhaps even in the next few hours. His pulse has left his feet, the pulse in his wrist is faint. However, yesterday, Jake was peaceful and lucid for a while, they were able to take him outdoors and have some incredibly special time with him. At a time like this, that is an immense gift for his family. Today is going to be hard, harder than any words can express, but they have the peaceful memories of yesterday to help them through it.



****

I've been out of my groove lately and as such, I owe you all some smallish updates. Nothing too major, but a few things here and there.

Last week, KayTar had strep. Yup. Strep. Again. Aren't we predictable?

The good news is, we can now get KayTar to (secretly) take oral medication, so she didn't have to get a nasty shot. We crush and hide 1/2 a Flintstone vitamin in her baby food vegetables every day, without problem, so we decided to try the same thing with a chewable antibiotic and it has worked like a CHARM. When she is seriously ill and refusing food and drink, she'll still need the shot, but at least not EVERY time. This also means we are no longer completely limited by our fever reducer options. Motrin clearly works better than Tylenol, but we have never been able to use it for KayTar because it does not come in the bottom rocket form. Now, as long as we can talk her into eating some veggies, we can sneak in medication. That is like one giant sigh of relief.

BubTar spent Friday night with my parents and his cousins (no injuries this time!) and by the time he got home on Saturday he was sick as well. The Fever of Doom started and we thought surely is was strep and prepared for a trip to the pediatrician on Monday, but just like that the fever left and all that remains is an annoying cough that is controlled well enough with a wee bit of cough medicine. He's back to himself again.

KayTar's therapy schedule is being turned on its ear (is that REALLY the phrase? Can someone please explain it to me, because I don't get it). Last week she was released from OT (yay!). We've had to cancel deaf co-op for two weeks due to BubTar's thumb situation and illness. I received a call from her speech therapist on Monday to notify me that she is having to take an extended personal leave of absence, and she will be coming in one Fri/Sat a month to try and get her kids in. So KayTar's speech therapy, the one she needs the most, will be down to once a month maybe. Then on Tuesday, her developmental therapist told me that our physical therapist, who has been here from the beginning, the ONLY one who has been with us since the beginning, is leaving in January. They will be down to only one physical therapist, which means KayTar will be wait listed and probably won't get anymore PT services before our transfer to the district. So basically, we are down to DT, which she doesn't really need all that much, and deaf co-op, which we haven't started yet and I have no idea what to expect.

While I am happy her schedule will be less packed, I am frustrated for multiple reasons. The pediatrician and I both feel that hyperlexia is on target for KayTar. The key to "treating" it is intensive speech therapy. I was looking forward to discussing this with her therapist and getting a plan in place to work through it. KayTar's speech is improving, a lot of it seems more spontaneous and natural, but still the percentage of echolalia is very high. For example, in DT this week, she did not say ONE spontaneous phrase. She repeated what the therapist and I said, and she also quoted a couple cartoons, but nothing spontaneous. Her DT and I were discussing how frustrating it is, because she APPEARS to be on target unless you know enough to recognize otherwise. Or unless you spend the day with us. So, she won't be receiving the ST she needs right now, and of course, the insurance that covers private therapy runs out in February. I completely understand her therapist having to take this time, and I don't begrudge her that. I am just a bit miffed with the situation. My child needs help she won't be getting. The other issue is physical therapy. This one is needed. She isn't running or jumping like other kids. She's not going up the stairs on her own. She can't walk across grass without falling over. She can't even walk on slanted pavement without falling. She needs physical therapy, she needs to strengthen her muscles and learn how to make them function the way she would like. But again, she won't be receiving it. We will have today and next week, and I think that will be it. It isn't anyone's fault, of course. It is just frustrating. The district services are still a big question mark. She doesn't even get evaluated until next month. I worry that she will be missing the last of these very important therapies and then have nothing to replace them with come her third birthday. Even if she does qualify for services (ST/PT), she is still missing some extremely important time in her private therapy, which will be gone for sure come February. I hope she gets really excellent district placement and that perhaps we might come in contact with someone who is familiar with hyperlexia. It seems that we will not be able to get a formal, official diagnosis before her placement, so I'd love someone on staff to be familiar with it. It seems to be rare, especially when not comorbid with autism (this is still shady territory, sometimes it is classified as a high functioning spectrum disorder and sometimes it is classified as a SYMPTOM of autism, and sometimes it is classified as a non-spectrum stand alone disorder that sometimes co-exists with autism, go figure). I'm thinking of calling and talking to the district speech therapist about it and see if she has any advice to smooth the transition and get KayTar in the meantime.

In other news, KayTar has become quite the little singer lately. I love it so much, her little voice and intonation. Adorable. So consider this my early Christmas gift to you all, a musical medley a-la-KayTar.

24 comments:

Hetha said...

What a beautiful picture, I'm so glad they were able to see those big brown eyes yesterday. It's all so unimaginable and they are so brave.

I know this frustration you're feeling about the therapy and insurance - we're dealing with it too and it surely is maddening on so many levels. Email anytime you want to vent about it hon.

Maddy said...

We shall be thinking of you today.
Best wishes

Becca said...

How sweet! And also, how frustrating! So sorry.

carrie said...

My thoughts are with Jakie's family. May they all be at peace today.

And -- no more strep for your little angel, okay? She needs that beautiful voice.

Julie Pippert said...

Prayers and thoughts for your friends, and you.

Stay healthy. Glad you have new delivery methods fro the medicine.

How frustrating about the speech therapy.

Oh and to add to that, did you see what Bush vetoed yesterday? (Deleted personal opinion and editorial because this is your blog and PG)

I hope you get something worked out. What can the school district do?

Now to the good stuff. That video of her singing is GREAT! I love it. And that was back and forth interaction with spontaneity. That was almost as cool as the songs.

Julie
Using My Words

Amy said...

I can't stop thinking of Katie. That picture (and the one of her and Jake) just pulled on my heartstrings so much. I can't even imagine.

That is so frustrating regarding the therapies, especially with the insurance ending so soon.

And that video was precious!! Jingle Bells is definitley Julia's Christmas song favorite!

Amy said...

I can't stop thinking of Katie. That picture (and the one of her and Jake) just pulled on my heartstrings so much. I can't even imagine.

That is so frustrating regarding the therapies, especially with the insurance ending so soon.

And that video was precious!! Jingle Bells is definitley Julia's Christmas song favorite!

Emily said...

Wow, hodgepodge indeed! So many different things I could comment on, but I'll just add this 2cents...
I would DEFINITELY call the speech therapists with the district ahead of time, speak to someone "in charge" or whoever assigns patients to therapists, and discuss the hyperlexia with them. That way, they can figure out if any of their therapists DO have experience with or knowledge of it. Kaytar could be assigned to the knowledgeable person, OR it could give the therapists time to familiarize themselves with it, to correspond with doctors/therapists/experts elsewhere who can guide them and have them prepared for Kaytar when she explodes on the scene in February.

REMEMBER thru all this... the squeaky wheel gets the grease! (but don't squeak so much that it seems the wheel is beyond repair)

flutter said...

I love you Kyla and I am thinking of you and Jake's family today. That sweet little angel will be at rest soon.

Emily said...

I'm here via Slouching Mom.

I'm so so sad to read about your dear friend, Jakie. I will be thinking of you and of Jakie and of his parents, today.

Family Adventure said...

She is so lovely, Kyla. Such effort to reach the high notes!!

I am so glad you posted that picture of Jake and his parents. Thank you. It is amazing how he was able to give them that time - maybe that's what he's been hanging on for. I wish them peace.

Heidi

Aliki2006 said...

This post had me in tears--it was all up and down, tragedy and joy. That picture of Jake being held by his parents makes me want to cry out loud. And KayTar's sweet voice--also makes me cry.

What a world...it's so hard sometimes, so hard.

Beck said...

Oh, that picture of Jake and his parents. My heart.

And the sweetness of Kaytar - what a lovely, lovely little child.

painted maypole said...

hope you are all well now, and I am holding jake and his family in my heart.

Christine said...

What a terrible thng to go through, for you as a friend and for them as parents. My god.

It really is just unbelievable. My cousin lost her three year old daughter years ago, and man, it's just indescribable.

Junie's Blog said...

What an awesome singing video!! Kaytar is adorable!

I'm so sorry to hear things are getting so frustrating.

Oh and what a beautiful picture Of Katie, David and Jakie.

PJ said...

You tell Jackie's story so well...I've been following Katie's blog too and the CaringBridge journal. I know then only through the internet, but I weep everytime I read of her pain.

I know that it is in our brokenness that God uses us. There must be great things ahead for kate and David. And you, Kyla, are a marvelous communicator. Thank you for sharing your caring heart!

And KayTar's singing is WONDERFUL!! She's so full of life.

Lisa b said...

Oh my goodness Kyla. So much to deal with. It am so glad Jakie was able to be outdoors with his family.

How frustrating about Kaytars services. Even though you understand why, it is still awful to have these disruptions.

~aj~ said...

I'm so glad you shared that picture of Katie, David and Jakie. It completely warmed my heart.

KayTar's video was too cute for words!

So sorry about the therapy frustrations. I hate that getting the help KayTar needs is so hard.

jen said...

smallish updates i view through tears for katie. there are no words for this.

nomotherearth said...

That picture of Jake & fam speaks volumes.

Sorry for the frustrating develipments with Kaytar's therapies. Hang in there.

Mimi said...

Wow, Kyla, you've got a lot going on, and a lot in your heart. I'm sorry for all the loads you're carrying.

On the upside, KayTar is getting more adorable, and maybe ... MAYBE! the current round of illness means you'll all be healthy for the holidays. Fingers crossed.

dawn224 said...

I'm still keeping watch over Katie. I can't believe it's been a week.

As for the speech/hyperlexia - I'm an SLP and I know nothing about hyperlexia ... is it possible that this is one of those (gag me) door closed/window open opportunities where you can find an even better suited SLP?

(looking for the silver lining ...)

Christine said...

i am just stuck on that picture of your friends with their sweet boy. i'm all choked up. . .

Running on empty