Knocking on Wood.

Yep- we’re still here. Everyone’s mostly healthy, everything is mostly calm, things are just kind of movin’ along as they do in life. {Knock on Wood!!!!}

We are hitting that point of “time we’ve been out of the hospital” where everyone who asks me how things are going asks with a tentative voice and looks around quickly for something wooden to knock or some salt to throw over their shoulder. We are definitely not above a little superstition around here – but are mostly just very grateful for the amazing run of “good health” that littlest missy has been enjoying the past few months! It’s not to say things are necessarily all smooth sailing – but the things that have cropped up here and there are mostly resolved with some of the interventions we have worked so hard to have in place AT HOME this past year!

I feel like I probably have SO much I could and should catch up on – Kendall’s IEP (special education) meeting, did I ever update about our GI appointment???, karissa’s following in my blind-as-a-bat footsteps, my fun weekend with friends in MI (aka the day I learned how to dougie), and of course the other various and sundry minutiae that makes up our day to day lives. OH – and Kendall’s big birthday celebration bash!

Let’s start with that…

Kendall’s Birthday Party!

For people who are NOT on Facebook – we are celebrating Kendall’s 3rd birthday by asking all of our friends, neighbors, relatives, and family who are able and willing to come to her party which will be November 19th (Saturday) at 6”30 pm at the Fire Station #5 (by our house). If you are local enough to want to come be a part of the celebration, please let me know! And for those of you who have been asking, I will have a page up here soon of ideas for things that Kendall needs/would like for her birthday (but gifts are NOT necessary!) We really just wanted to have an opportunity to say thank you to the many many many people who have been so instrumental in her story, in helping her reach this milestone birthday, one that comes at the end of a very hard-fought year! Reading this blog, praying for her, or for our family – that makes you a part of her story. We would love to see you there!

Kendall’s IEP

If you have never had the privilege of having to draft an IEP *Individualized Education Plan*, then you may just want to go get a nice slice of bamboo and start shoving bamboo splinters up under your nail beds in order to get a glimpse of the torture that this process entails. We began the process back in May when Kendall was 2 and a half with her team of therapists through Early Intervention (birth-3 program for kids requiring therapy/development support and services). After schlepping down to our “local” special education preschool three separate times for various evaluations of Kendall’s “mad playtime skillz”, and spending over 5 hours on the phone with the head nurse for our entire district, we finally had a sit down meeting to draft the official IEP document. We had no idea what they would recommend, as we have seen some MAJOR strides forward in Kendall’s developmental abilities since starting on the TPN earlier this year.  However, her entire EI team felt that services were definitely warranted and necessary in order to ensure that Kendall’s skills stayed age appropriate in preparation for entering the school system. I was torn. On the one hand, all we know is therapy therapy therapy, all the time, week in and week out. A few years or even a few months off of that wouldn’t have been that bad! On the other hand, 3 years ago in this situation with Karissa, I did not fight for the services I felt that she needed at that time, and now she is continuing to struggle with many of the same issues that I should have fought for then. On another hand, the thought of sending my immunocompromised, low-energy, sensory overwhelmed child with a central line, feeding tube and oxygen into a preschool type of environment (read:germ and grabby-grabberson central) seriously makes me need to use my inhaler. So I went into the meeting with an odd mixture of momma-bear-ready-to-fight and utter trepidation. Luckily I am used to having to rectify these two polar extremes into one cohesive personality on a day to day basis.

But the bottom line is that their recommendations addressed all of my concerns before I could even raise them, and the only tense part of the plan came when it came down to WHO would pay for the nursing coverage that she needs at school. Our awesome nursing program coordinator was there and was able to whip out a few legal documents to “help” the school realize that it was indeed THEIR responsibility to pay for it, so that was quickly tied up! All of that to say that Kendall will be starting school the week of her birthday, going 2 days a week for 3 hours a day, with an RN (nurse) at all times, and getting bussing service to and from school. I cannot even TELL YOU how excited this kid is! If you see her, ask her how old she is! You will get the whole story like this:

“Free-busss-Ryda. Fowa. Matsy Patseeeeeee!!!”

I’ll interpret:  Three, Bus-Rider, Four, Miss Patty Class – which means that she will be three, and she will be a “bus-rider” (which comes from me discussing with the big girls every morning whether they are bus-riders or will be in the car pickup line). She has started adding in that she is also FOUR (because Kaylen is), and finally, her class will be Miss Patty’s class, which gets mashed up into Matsy Patsy. It works. She’s excited.

and even though I am NOT a germophobe, I’m scared to death. Not so scared that I’ll keep her away from this awesomely fun opportunity – but scared enough that i’m going to probably start chewing Xanax-laced gum. Luckily her nurse from home will be her main school nurse also, so i won’t have to retrain someone else that pale = normal, smurf-colored = turn her oxygen up, red = start fluids, etc. Still, I am sure that her first day of school outfit will probably consist of a hefty layer of duct tape and/or ace bandages to wrap and protect all her lines and tubies from grabby little germ covered hands. And possibly a bubble. My goal is to have her be able to go from her birthday through the Christmas break, and if there are a lot of viral illnesses being reported in January, or February, or whenever we feel it would be a prudent choice, she will go on “homebound”, which means a teacher will come to our house for six hours a week.

She is so very excited, and I am so glad that the IEP was written without tons of heartache, and yet with some very realistic goals to help Kendall continue to learn and grow in a safe environment.

 

Karissa Needs Glasses

This is rather self-explanatory. She “kind of” needed glasses for reading situations at her eye check last year. Since we didn’t think the problem was really bad, we opted to wait and see if her eyes strengthened at all as she got more used to reading/schoolwork/etc. Clearly we chose the wrong box. Her eyes are now almost three times worse than they were last year. A rather drastic decrease in vision over a short period of time. So we ordered the glasses this time, and now they are not just for reading but are for all the time. She was very excited about the prospect of seeing, truly SEEING, with her glasses and begged me EVERY morning to call and see if they were in yet (they just came in today, a week later!) Hopefully the glasses help address some of the other issues that have been getting more worrisome with karissa (things that i’ll talk about in another separate post sometime – nothing super serious yet, just a bunch of annoying things that are “off”). But here she is in her glasses with the included “sunglasses” accessory clip-on. Yes this was the deal-sealer for her wanting THIS pair. yes I know she will likely lose them before Christmas.

 

I know I have so much more to catch up on, but i am so tired, and have a long day tomorrow. Part of my reason for being so absent from the blog is that my laptop battery is DEAD – which means that unless I have hours of endless time to stay tethered to the table that I use as my desk, I don’t have a whole lot of computer time. If anyone has an extra HP battery laying around, let me know! I can put it to good use I’m sure! Also it would be awesome if Kendall’s IV pumps would stop alarming every half-hour throughout the nite – that would really help in the “cohesive sleep” department. Our pharmacy sent us out a new pump this morning so I’m hopeful that tonite will be some good sleep! We got a busy weekend ahead! Hope yours is well also!

Thanks for checking in! (and keep on knockin’ on that wood for us!)

 

terra