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Showing posts from October, 2012

Ugly day.

I try to keep a positive spin on things on this blog but also not sugar coat the truth because I want it to be an accurate representation of what it's like raising a child with complex medical issues. In reality, as long as you're dealing with multiple medical providers and insurance companies, SOMEBODY is going to be a thorn in your side. If anyone happens to be looking for warm fuzzies about the special needs life, you should probably stop reading now because this is not it. We have a lot of good days, a few bad days, and some ugly days too and this has been an ugly day. (Don't worry, Raya's fine.)

I had planned on spending my day reading my textbooks, studying course materials to prep for the quizzes I have to take this week, and prepping for the lab I have to conduct this week. I really REALLY needed to spend the day doing that stuff. Instead, once again I have spent the majority of my day trying to untangle insurance and medical provider red tape just so that my c…

A Dose of Reality

Yesterday and today have been difficult. It's been more in a string of days full of slap-in-the-face reality checks. Not that there was any particular terrible incident or anything, just a difficult and exhausting day yesterday and less of the same today.

Since last fall, we have had the privilege of having the most wonderful respite provider for Raya who is willing and able to come on Sundays to stay with Raya while we go to church. This has allowed us to minimize her exposure to illnesses & infections and the risk of accident or injury involving her G tube, not to mention the great pleasure of getting to sit through church and actually listen instead of wrestling with a busy toddler. To be perfectly honest, I have loved being able to leave her home. The other 3 kids are so well behaved during church that we really do get to just sit and listen. It's been exactly the break from reality that I've needed and I usually come home feeling recharged. Last Sunday and yesterd…

Very exciting news...

The short version: Raya qualified for early intervention preschool. Yay! Now I can stop stressing about it and maybe one of my Raya-induced ulcers will go away... :)

The lengthy version:
One of my (many) sources of stress involving Raya for almost 2 years now has been wondering whether or not she'd qualify for early intervention preschool. To say that it's been an emotional roller coaster would be pretty accurate. When she was diagnosed with cerebral palsy, I thought that it meant she would automatically qualify to transition to preschool as well. When I found out that this was not the case and she actually would have to be evaluated, I thought for sure that she would not be going to preschool. At the time, she was only 10 or 11 months old and I didn't really care if she qualified for preschool or not. However, as she's gotten closer and closer to turning 3, I have come to understand why she needs it and the thought of her not qualifying has gotten scary. I have hoped …

Better day

I'm happy/relieved/grateful to report that Raya had a much better day today. Today her crabbiness only reached what would be expected from a child her age, which is nowhere near what she's been like the last several days. I'm nit completely sure why she did better today but it may have had something to do with dropping her feed rate a little more and spacing her out 4-5 hours in between feeds. Today when I checked for residuals (leftover formula in her stomach from the last feed) there was only an ounce or less and what was there was definitely more digested than what I've gotten out of her the last few days. This means that the slower feeds and longer time between feeds is allowing her stomach to empty. She wanted a hug after her evening feed and when I knelt down to hug her, she almost spit up on me. Lucky for me, she swallowed it. I asked her if her tummy hurt and she said it did so I asked her where and she pointed to where her stomach really is. Obviously she…

Next stop: wit's end

I love my kids but I was totally ready for bedtime tonight. As fussy/crabby/whiny/difficult of a day as Raya had yesterday, it was just as bad today only we had to be out in more public places today. She ate a buckwheat/tapioca pancake around 8:30 this morning. Or most of a pancake, anyway. Then she watched Backyardigans and went to bed for a nap that didn't actually happen. She was tired enough that she climbed into the crib but couldn't go to sleep. 90 minutes later I changed her poopy diaper, opened all the windows to air the place out from said poopy diaper, and we left to go test out a few strollers at Babies R Us. I need her to have a stroller very badly and the dinky 8 year old umbrella stroller we're using right now isn't cutting it. After that we headed to our last OT appointment with Miss Jen. We will miss her but hopefully we'll cross paths with her again at her new job.

After therapy, we went grocery shopping. It was pretty much a nightmare. I don't …

A little relief

To recap, last week we realized that Raya was showing signs of not completely tolerating feeds so we slowed her down from a 25 minute feed (which she's been on for a long time) to 45 minutes. We also started using Farrell bags again because they allow any gas or air to escape from the stomach during feeds and allow the formula to run in as the stomach is ready for it.

So far it seems to be helping a little. She definitely seems more comfortable during and after her feeds. The tricky part is that I have yet to get the Farrell bags to work when she's out of the house and we don't have something to hang it from so that it's a couple feet above her stomach. If we don't have it that way, the formula will NOT go into her stomach. (ask anybody that happened to see us at parent teacher conferences. we were a circus act with all that extra tubing and a bag full of formula+chocolate floaties from the M&Ms she got into earlier that afternoon)

So yeah, we're currently o…

The October Blahs

I love this time of year but I'm starting to think that we should just go into the month of October with low expectations. Raya's first October was just plain awful (i.e. vomiting blood for the 2nd month in a row, miserable, half the month in the hospital, etc.). Last year was exponentially better than that but still no picnic. I was reading back through last October's posts and realized that the only thing that's really changed since then is that Raya's list of suspected food allergies has grown. :) Other than that, we've pretty much broken even with progress towards oral eating. I feel like we've gone way backwards recently with all the foods we've taken away from her but her eating skills have improved and her willingness has increased so that's a plus.

I'm starting to wonder if corn is a problem too. She's been eating primarily corn products for a couple weeks now (Fritos, Puffcorn, Tostitos, Kix, etc.) since she's been wheat-free a…

Knowing your kid

You would think by now that I'd easily recognize all of Raya's quirky little indicators that something is wrong. The problem is that it's all so subtle that I often feel like I'm imagining things when I start to think she's a little off. The past 2 weeks, she's been WAY off in a lot of her sensory processing issues. At first I thought that maybe she was coming down with something but it's been over 2 weeks now that she's been acting strange. The constant need to be hugged, less coordinated than usual, frequently sliding off of whatever she's sitting on (especially the couch or me while I'm on the couch), reduced clarity of speech (specifically not completing words when putting multiple words together and softening of letter sounds), running into things, and an overall decrease in body awareness are just a few examples.

Another thing that's been way off in the last 2 weeks or more is her inability to fall asleep at nap time. I didn't real…

OT progress check & some new foods

Every now and then it's nice to go back in my archives and look at old posts to see how far we've come. I was reading back through the post from our first month of OT back in January 2011 and it's pretty crazy how much things have changed since then. I have learned SO much about the purposes of OT for children with special needs and I learn a little more every time we go. Then there's Raya. Back when we first started, I really didn't comprehend why she needed OT. I knew very little about occupational therapy and what I did know most definitely didn't apply to my 1 year old. She had never been in an accident that resulted in her needing to re-learn her ADLs (activities of daily living) and she didn't have significant fine motor delays. But yeah, like I said, I've learned a LOT since then. :)
And then there's Raya. That girl has come SO far. When we first started OT, we worked on getting her to touch various textures. The only one she liked was sandpap…

"I nee hudds"

"I nee hudds." This is what Raya has been saying pretty much every 10 minutes all day every day this week. I don't know why she's doing it and I'm sure if it was any other kid, I wouldn't think twice about it. Every 10 minutes or so, she'll stop what she's doing and find somebody to hug. If one of the big kids is around, she'll hug them. Even THEY have commented about how strange her behavior has been. :) They're not those little one arm patting hugs either, they're tight squeezes and she expects to be squeezed hard too. There's been a fair amount if crying this week too.
The need to be squeezed isn't the only thing that's off with her this week. She's having a bad sensory week altogether this week. Today, she was leaving off the second half of any words that were used in sequence and all of her letter sounds were really soft and slurred. I could hardly understand anything she said unless she was completely happy and con…

Icing Smiles

With all of the negative that goes on in the world, it's always a breath of fresh air to find organizations where people are volunteering their time and talents to bless the lives of others. One of those wonderful organizations is Icing Smiles Inc. Here's a description of their organization's mission from their website:

We are Baking a Difference
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.
Memories have magical powers. Long after the cake is gone, the memories linger-- memories of the kindness of a stranger, of the art of the design, of the sweet smells of a special treat, of the smiles and laug…

Super Mommy-1, Food Allergies-0

That's right. Score one for Team Super Mommy. I showed that possible wheat & rice allergy who's boss around here and made Raya some wheat-free, rice-free pancakes for dinner. Booyah!

She (we all) had a long day today. The big kids are out of school all week for fall break so they accompanied us to OT today. This was the first appointment in her 20 months of occupational therapy (or any therapy) that she's gone back all by herself. I usually at least walk her back while the therapist and I chat & catch up on the week but today I just sent her off with her OT. We've tried it before and it resulted in meltdowns and leg clinging but today I was sitting down in a chair and I don't think she realized I wasn't following her when she went through the door. :) By all accounts, she had a good session today.

After that, we went grocery shopping. (cue ominous music) It was unpleasant. 4 kids walking through a giant, brand new and very crowded grocery store at 1pm on…