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Showing posts from October, 2011

Happy Halloween Indeed!

Last year, Raya spent her first Halloween as a little caged turtle at Phoenix Children's Hospital:
She was on contact precaution and she wasn't even allowed to leave her room, so only about 5 people even SAW her Halloween costume last year.

This year, she's our little blue Angry Bird. :)
Life is MUCH better on the outside! :) Happy Halloween!!

Lab results & feeding changes

We made another trip to the "red and purple doctor office" today, AKA the GI clinic. Any time my 4 year old would come with us to the doctor, she HAD to know which doctor's office we were going to, so we identify which is which by things like the colors of the outside of the building, the one with the red table that has movies on, the one with the germ room, etc. :) Anyway, today we were at the red and purple office so Raya could have a visit with her GI doctor. We hadn't seen her in 2 months and I was crossing my fingers that she'd had some weight gain this time since she only gained a couple ounces between her last GI visit and her weight check a month later.

The whole visit just started off on the wrong foot. Last time Raya did great and was friendly & happy to see everyone and did everything the doctor wanted her to, so I thought we'd be fine today. Raya got really mad at me when I started trying to take her clothes off. Usually she can't wait to s…

Stress over unknowns and other ramblings

Every now and then, things just pile up and you just have to let it all out, so here's what's stewing right now. Since this is mostly for my own cathartic purposes, feel free to skip reading this. :)

Being Raya's mother has changed who I am. Well, really each of my 4 kids has changed me in different ways, but Raya has changed the way that I deal with the things that life puts in front of me. I can look back on so many situations before she was born that stressed me out, frustrated me, made me angry, or scared me and realize that even though my feelings were valid, those situations probably weren't as significant as they felt at the time. I think we can always look back and see how things would be different if we'd only known then what we know now. :)

Several months before Raya was born, we entered the awful process of trying to modify our mortgage loan. Anyone who has done that will understand why I used the word AWFUL. It was months upon months of phone calls to…

First day of respite

A few more threads of the apron strings were cut today. We FINALLY started using the respite care that Raya's been eligible for since sometime earlier this year. We met Megan a couple weeks ago and Raya instantly loved her. We feel like she will be a good fit for Raya. 

It really shouldn't have taken that long to start making use of this great resource that we're blessed to have available to us. I'll admit that part of the reason it took so long was that I was having a hard time with the idea of leaving her with someone, especially when she still had the GJ tube. Her care was MUCH more complicated then. Another reason was that I was trying to find a family member or friend that was willing to do it and couldn't find anybody. I had called one agency a couple of times and they only returned my phone call once, and after a month of trying to get somewhere with their agency, I gave up on them.

A few weeks later, I happened to be at an event for Down Syndrome and there w…

Strange...

Raya had a strange thing happen this week that I thought was worth documenting, so here it is. On Wednesday morning, Raya helped me make some Jell-O Oreo pudding. I would have taken a picture but I was too busy trying to keep her hands out of the bowl. I'm sure it probably wasn't the most sanitary process and there was definitely some double dipping involved.
Anyway, we made pudding, which I didn't expect her to want since lately she doesn't want much of anything. I dished out some for Kaida and some for myself and we sat down at the table to eat it. Raya climbed up on my lap and begged for bites, so I fed her as much as she wanted. After mine was gone, she still wanted more so I gave her some of her own, which promptly ended up smeared all over her hair. She had eaten about 1/4 cup total, which was the most she'd ever had of a milk product (except for maybe yogurt but that's a little different). I hosed her down and the day went on as usual.
At 10:30 that night,…

What a difference a year makes

This morning as we sat in the little exam room waiting for Kaida's GI doctor to come in (yes, big sister has digestive issues too), I realized that it was exactly a year ago today that Raya was admitted to PCH for "the big one". It was a Monday, and Donny had flown out of town the day before and wasn't coming back until the following Sunday. It was the kids' last day of fall break and we had gotten up that morning and decided to do some serious cleaning. I had gotten tired of the smell of Raya's pack & play that she had been vomiting in several times a day for many, many months. I took the smelly bed out of my smelly room and put it in the kitchen on some towels so I could clean it. I got a tub of hot, soapy water and a scrub brush and soaked that thing down. When I had scrubbed all that I could scrub, I turned it upside down to dry.
While I was cleaning Raya's bed, I had made her a makeshift "cage" out of the baby gate and some waterproof m…

Surviving the weekend & bumps in the gov't road

Well, everyone survived Mommy's weekend away. Not that there were any doubts about that since SuperDaddy was on duty. :) When we got home, the kitchen was clean and everyone was happy. As far as I heard, there was only one minor incident of Raya taking apart her feeding tube when she was supposed to be taking a nap but she didn't break anything so no real harm done. Perhaps I should leave more often. :)
Speaking of leaving, we have hit an inevitable bump in the road to getting respite care. I really try not to complain about Raya's state-provided long term care insurance since it really is a huge blessing to us and we feel lucky that she was able to get it, but the fact of the matter is that it's still insurance and there are still road blocks and red tape involved. Evidently, because there were changes made to the allowances for respite care that went into effect on Oct. 1st of this year, everyone is now waiting for approval for their respite care services.
I'm a l…

Dear Raya

Dear Raya,
Mommy misses you. However. Mommy really REALLY enjoyed sleeping in today until 10:15. Mommy is feeling very refreshed for the first time in about 2 years. 
See you tomorrow, my little vanilla-scented stinkerpot!
Love,
A very rested Mommy :)

The anxiety is mounting...

I think the longest I've been away from her was about 6 hours during the day, and she was at home with Donny during that time. As is probably the case with a lot of moms of kids with special medical needs, I have not been away from Raya overnight since she was born. That was 702 nights ago. (except for the 3 nights that I slept at the Ronald McDonald House across the street from the hospital but that SO doesn't count!)  702 nights of waking up to either a crying baby or a beeping feeding pump or both. Or kicking Donny so he'd wake up and silence whatever was making noise.
Lest you should feel sorry for us, there have been plenty of nights with several hours of sleep in a row, but there has not been a solid, full night's sleep without having to get up at least once since the girl was born. Thanks to Raya's overnight activities, I've never felt like I could leave her overnight. I've had a hard time asking anybody to watch her for an hour, let alone overnight. …

Walking a fine line

Some days I feel like I'm walking a fine line between being at peace with Raya having a feeding tube and being TOO comfortable with the simplicity of feeding her through the tube. (note: simplicity is not the same thing as ease :) Today is definitely one of those days.
Her lack of willingness and/or ability to eat makes it really easy for me to not feel like it's worth bothering to try to give her food. What's the point if it's just going to get thrown/smashed/smeared instead of eaten? She swallows some of it but lately, more gets spit out than goes down. Or it doesn't go in her mouth at all. Even things she's done great with in the past are getting spit out now, like crackers. Then there's the yogurt. Who really wants to clean up a mess like THIS multiple times a day:
Lucky for me, she's totally lost interest in yogurt now so all she does is make a mess and say, "Yuck! No wannit!" when I give it to her. She's been saying that with pretty m…

"It was just frozen pee from a jet-airplane!"

Can anybody name that movie? :) It's one of our favorites but nobody else seems to appreciate it. :)
So yeah, collecting urine from a 22 month old who isn't potty trained is a bit of a challenge. I ended up standing Raya in the bathtub and letting the water run until she gave me what the lab needed. Then we froze it since they need it frozen upon collection. Fun.

Friday was a heck of a day. We dropped Kaida off at a friend's house so she didn't have to be there for the blood draws. Next time I want to go to a friend's house too so I don't have to be there for it. :) We went to OT and Raya got to play with Jello. That was a new one for her. She's never had Jello before. She wasn't much interested in tasting it. Her OT gave her a little baggie of Froot Loops and they squished the cereal into the Jello. Raya made all kinds of amusing faces ranging from shocked to amused to thoroughly disgusted. The disgusted face came mostly when a Jello-coated Froot Loop w…

Neurology update

Raya had her annual visit with the neurologist today. I have to say that it feels REALLY good to say "annual" since we've seen all her other doctors MUCH more frequently than that. :) Overall, things went really well and it was a good visit.
For starters, Raya's hyperreflexivity has decreased significantly since her last visit, meaning that when the doctor taps her knees with the little hammer, the reflex response is not as overly reactive as it was a year ago. She also evaluated Raya's gait while walking and "running," i.e. walking fast, she's impressed with how well Raya walks. She said that her stance is still wider than it should be and she still has her arms in high guard position (raised to shoulder level with her hands up)
but that she is SO much improved since our last visit. She does still show increased tone in her legs but that has improved since the last visit as well. (THANK YOU, THERAPISTS! :)
We talked about the labs that had been done b…

A well-stocked cupboard

A well-stocked cupboard is a thing of beauty :)

PT Gymnastics

Last week for PT, we met up with Miss Jessica at a local gymnastics gym. It was a GREAT change of pace from being at our boring ol' house. :) The girls were in HEAVEN, especially Kaida.
She was SO excited to have an excuse to wear her hand-me-down gymnastics outfit out of the house. :)

Raya was a bit hesitant at first. Jessica & I weren't sure how she would do sensory-wise in such a busy environment. There were so many soft, squishy, uneven and unstable surfaces to walk on and those are the things she has always had more difficulty with. Since there were a lot of other kids there that were running around and having fun, she knew she should be having fun too and that helped. Peer modeling can be a huge blessing!
She was really funny when we put her on the tumble track. It's a long skinny trampoline with big mats at each end, and even for me it felt funny to walk on it. It feels very different than a normal trampoline because the shape is so much different. Anyway, we put R…