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Thursday, July 31, 2014

Summer break is winding down

Yes, really, the kids go back to school on Monday. The first Monday in August. It's early compared to the rest of the country but we're ready. It's too hot to do all the fun outdoor things that people who live in cooler climates get to do, so the kids might as well go back to school while it's still hot (112 degrees today) and have a few breaks during the school year when the weather is nicer.

It's been a nice summer. We haven't done anything big and exciting (except for the big kids going to the karate tournament in Vegas with Daddy) but we have stayed busy and had about as much fun as I've had the energy for. We're trying to pack in a few more fun things this week before summer break is officially over.

Yesterday was the last time I'll have to take any of the older kids to therapy with us. (thank goodness. bless their hearts.) Taking extra kids to therapy is not always pleasant but sometimes we just have to do it. Kaida used to have no choice but to get dragged to therapy with us, but now she goes because she wants to. We are so blessed to have a really great OT who is very kind about finding ways to have Kaida help with Raya's therapy program. With the exception of 1 therapist, all of Raya's therapists have been good about trying to let Kaida participate when it was possible. (one of them was just downright rude to her sometimes but that's in the past) Kaida is a great reader now, so Raya's therapist let Kaida read the questions off of the cards to Raya while Raya balanced on the balance disc and put blocks in the bucket.
I can't get over how grown up Kaida looks in this picture. She was a teeny little 2 year old when Raya started all her therapies and now she's about to turn 7.

I decided that Piper might as well do some therapy too and made her do tummy time while Raya crawled back & forth through the tunnel. That gave Piper something to watch, which distracted her from thinking about how much she hates being on her tummy. Win-win.

We also had feeding therapy yesterday. It was another in what will be a long string of bittersweet moments involving Piper and Raya. Even though we haven't officially started Piper on solid food yet, she was MUCH more interested in the peach I brought with us than Raya was. The therapist loaned me one of those mesh food bag things and Piper wasted no time mushing every last bit of that peach through the bag. There was nothing left but stringy bits.
She really did consume as much or slightly more peach than Raya did. Raya is just not feeling like eating food now. She has gradually lost interest over the summer and is down to practically nothing most days.

Today was our last swim day with friends from church. I didn't take any pictures. I also forgot to put sunscreen on Raya, as evidenced by this picture I took later in the afternoon while we were at the library:
Okay, well it doesn't look that bad. Thankfully she had on her swim shirt & shorts today so she was much more covered up and her face seems to be the only thing that got burned. We have had a great routine this summer of going to the library every week and the big kids have absolutely loved it.
My sweet little Piper has been a pretty cooperative library-goer too. With the exception of a couple of near-blowouts, she has made the library easy on me.

Before the library today, we had Raya's meet-the-teacher. I am so, so happy that she has the same teacher she had last year! We were able to talk to the teacher and the health aide both, and I filled them in on the changes that have happened over the summer. The GJ tube is obviously the biggest change, and the plan is to take advantage of the shorter pump time and send her to school without her feeding pump, She will be SO happy about that! I'm going to have to take some time this weekend to get all her emergency supplies together and everything else the health aide needs to keep in her office, and make sure all the paperwork is up to date. (it's not. I have work to do.) Raya decided to show off and wear big girl underoos to meet-the-teacher. It was our first trip out of the house without a pull-up or diaper on, so it was kind of a big deal. She was SO excited to tell her teacher what she was wearing and that she's been using the potty a lot over the summer. She really has been doing well with it and I'm starting to get my hopes up that she could be out of diapers before kindergarten.

We are 3 days into the antibiotics for the cellulitis in her arm. Just to review, here's what it looked like Sunday morning a few hours before I took her in:
It had spread significantly between Saturday morning and Sunday morning and had developed a hard lump under her skin, and was hot to the touch. I was actually relieved when the doctor told me he was putting her on antibiotics because it validated me bringing her in.

Now we're 3 days in and here's what it looks like now:
I circled the area that was red when we went in Sunday evening. The redness is pretty much gone except for the original little bump in the middle that she scratched, which set the whole thing off to begin with. It's hard to tell in the picture but the redness has been replaced by bruising, which is either from the pressure of the J tip that was used to pop open the sore so they could swab it to culture it, or from the pressure of the now huge lump that has formed under her skin.
The distance between my fingers in the picture is how big the hard lump is. It will be interesting to see how it continues to evolve over the next few days. She will be on the abx until next Wednesday, so I'm crossing my fingers that she doesn't have the "severe diarrhea" that the pharmacist warned me about but it's very likely that she will. I've already seen a difference in her stools, which I will spare anyone from hearing about. Hopefully the medicine is doing its job and won't have too much collateral damage in the process.

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