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Showing posts from July, 2013

Last week of summer break

Our summer break is winding down. Wish I could say the same for summer but that will be hanging around until late October. :) Towards the end of the school year I saw an article online by a tired mom who talked about feeling like she was limping across the school year finish line. Sadly, that's how I feel about summer break. We have a short summer break here but we've been at home all summer and it's to got to play outside. We have the same kind of cabin fever that people in other climates have in the winter. We all love each other dearly but I think we're all ready for school to start. (except I've really enjoyed not having to get out of bed by any particular time in the morning...) We have a busy couple of days ahead of us. We have a meeting with Raya's teacher tomorrow to go over all of her medical needs. The theme of the meeting will lean heavily on emphasizing the importance of not having her do crafts or activities with food and not letting her eat any…

An insurance vent.

I will preface this by saying something that I've said countless times before. I am beyond grateful for health insurance and for the very generous coverage we have been blessed with in the past 3+ years since Raya was born. In her first year of life, she racked up about a quarter of a million in insurance claims and goodness knows how much the last 2 1/2 years have tacked onto that amount. For the first 15 months (before she was able to get secondary insurance) we had a sizeable amount of out-of-pocket expenses that kind of sealed the deal with us having to sell our house that year, but even so, we have been incredibly blessed with good insurance coverage and we are very, very, very grateful for that.

That being said, insurance red tape is so unbelievably frustrating sometimes. I had kind of moved on from our unpleasant experience at the hospital with Raya's pyloric botox injections getting canceled at the very last second (and very early in the morning). Then we got the offici…

Applesauce

Another week has come and gone and summer break is slowly winding down. The first time I ever saw that Office Max commercial (or is it Staples??) with the parents doing the back-to-school shopping while the song "It's the most wonderful time of the year" plays in the background, I thought it was kind of mean. I get it now. Don't get me wrong, I love my kids and I love having them home and I love not having to get up and get everybody ready for school in the morning, but yeah, I get it.

Therapy appointments are a little harder when everybody has to tag along. For Raya's OT appointment on Tuesday, she went back with her therapist by herself and the rest of us sat in the waiting room until she was done. It wasn't pleasant thanks to one darling but crabby child. For feeding therapy, I can't stay in the waiting room so all the kids got to come to the teeny tiny little feeding room with us. In the hustle and bustle of getting everybody ready and out the door on…

What to do when your child can't eat

I've been asked many times in the past several months how we handled the whole unpleasant task of taking all food away from a child who is used to eating. There are a lot of reasons why a child who is used to eating at least some food could suddenly need to stop eating and drinking. Kids who are diagnosed with eosinophilic disorders often need to go on an elemental diet, meaning no food or drinks other than an elemental formula. Elemental formulas do not have any whole or partial food proteins in them. The proteins have been broken down into free amino acids, which makes it nearly impossible for the immune system to recognize the formula as something it should react to. Many kids on elemental diets because of eosinophilic disorders are able to eat Dum Dums, as they are manufactured in a way that prevents cross contamination with allergens, and most flavors don't contain any natural ingredients. Eosinophilic disorders aren't the only immune system-related reason to stop eat…

No-go on the Botox

In what was an amusingly fitting end to a really crappy week, Raya's botox procedure did not happen yesterday as planned. I had been told on Thursday evening at 4:45pm that we still did not have authorization for the botox from the insurance. I was told that we could sign a waiver saying we would pay the $1200 for the injections if the insurance company ended up denying the claim and go ahead with the procedure. I told the scheduler that we would not be willing to do that. She reminded me more than once that Raya's doctor had opened her schedule specifically for Raya and doesn't normally do procedures at the main hospital or on Fridays, (i.e. guilt tripped me) and said that since our insurance company is in a different time zone, there was a chance that we could have the authorization by the time the procedure was scheduled to start at 8:30. She said it was completely up to us what we decided to do, whether we rescheduled or went ahead with it, or just went to the hospital…

Conversations that sting

Raya has become quite the conversationalist. Most of her recent conversations are one sided and probably fit more into the lecture or diatribe categories than the conversation category. It amazes me sometimes how many words she can get out in a single breath of air. Of course the facial expressions and hand gestures just put the whole thing over the top and none of us can really help but laugh when she gets like that, no matter what the subject is. She also likes to contradict everything I say. The other night she asked me if I wanted to do something and I said I would after I was done with my dinner. She said, "Um, that's not dinner, that's pizza." I said, "Kid, I'm eating pizza for dinner. The pizza is my dinner. Stop arguing with me and eat your tortilla chip and ice." ha ha. She really is a hoot.

Today I had a different conversation with her. It was probably the deepest conversation that I've ever had with her, and as deep as it can really get w…

Having a better day...

My apologies to anyone who was unfortunate enough to read yesterday's emotional vomit episode. Things are much better today. My car still isn't fixed and nothing else has really changed either except that we were able to figure out how we could make some adjustments so that things will work out better for us and I'm just feeling better. Sometimes you just have to have a good meltdown. :)

We've had kind of a funny day today. Last night I could NOT figure out why Raya wasn't going to sleep. It was almost 10:30 before she fell asleep and she was SO fidgety that she literally could not be still for even 5 seconds right up until she fell asleep. It's sad to see how hard it is for her to calm and relax herself even when she's really tired. This morning, I walked into the kitchen and saw that the syringe of her "nigh-night medicine" on the counter. I was actually relieved because I was worried last night that it had suddenly stopped working for her or th…

I'm having a sucky week.

This entire blog post will pretty much be nothing but me venting and complaining about things that I usually don't even discuss publicly so if you don't want to read it, now is your chance to stop. So far my week has really stunk. We seem to have really crappy luck with our cars every July. Yesterday started off great. I finished up some things that had been hanging over my head, which always feels nice. Raya's respite provider came and since she was here and I didn't have anything pressing to do, I decided to take the big kids to the library. The library is about 5 miles away and I made it about 2 1/2 miles and then got in a fender bender. Everybody in both cars was fine but it still sucks. My car was still drivable and I left it running the whole time we were there so the kids wouldn't overheat. Cole had to get out of the car after a while and dry heave in the shade of a tree for a few minutes because he had taken his pain medicine before we left and it upset his…

Another new food

Raya added another new food to her diet last night. I hadn't really planned on it but we had some fresh peaches and I thought she might like them so I let her try some. I think it was the first time in her life that she's ever had peaches because I don't think we ever tried giving her baby food peaches during our brief and pathetic attempts at baby food.
She was not overly impressed. She ate a couple of pieces but it didn't really do anything for her. All she wanted to eat was the corn. She ended up eating about 2 tablespoons of corn so that was good. The jury's still out on whether or not peaches agree with her body. To put it mildly, there is some funk coming from her today and I'm not sure what else it could possibly be coming from, but it could definitely be the peaches.




Her oral intake has really gone down lately. She'll do well one day and then not want anything the next day. This morning we went to the Independence Day breakfast at church. Usually b…

GI and Botox

Sometime very soon, I will get around to blogging about my wonderful week in Hyannis, Massachusetts at the Oley conference but I need to do it when I have a little more time so I can do it justice. 

I got home LATE Friday night and bummed around trying to catch up on sleep all weekend but we hit the ground running this morning. Raya had an appointment with her wonderful GI doctor at 8:30. She was SO excited to go see Dr. S! She has come a very, very long way from the days when she cried through the whole appointment and we felt good getting out of the clinic with just one vomit. She's even getting to the point now where she doesn't get hit with major anxiety when we walk into an exam room and she'll talk to Dr. S and be her usual silly self during the appointment. It's a huge relief to see her so comfortable in these appointments that are so important. I know that sounds strange and yes, it's kind of a sad statement but the fact is that these frequent doctor visits …