Jan 13, 2010

time for a little Addy update...

Well, I realize it's been a VERY long time since our last update. Lots of things have happened, mostly all good things, and I didn't want to jinx any of it, so I've really hesitated posting about them.

We were finally able to get Addyson signed up for the Medicaid A&D Waiver, which enables us to received skilled nursing respite care for Addy. This means we'll get a set number of hours per week in which a skilled nurse will be here at our house to care for Addyson, giving Nick and I a bit of respite. We can use this time to get chores done, run errands, sleep, basically, so whatever things we need to get done. This is wonderful, especially in the winter (cold/flu season) when we don't like to take Addy out to run errands. I'm hoping to use the time to visit the library and work on some of my personal goals, unrelated to Addy. I think the extra socializati
on and structure will also be good for Addyson.

We were also able to get approval for Medicaid Disability, and since she qualifies for the A&D Waiver (above), the monthly spend down is $0. This means that we are able to have excellent health insurance for Addyson, which she desperately needs, for no out of pocket monthly fees or co-pays. Honestly, I had been working on this since May and finally got all approved for the start of December.

We've been cleared by the pulmonologist to discontinue daily breathing treatments, and just keep the script and nebulizer for an as-needed basis, when she is sick, which, thank goodness is not very often (thanks to our persistance with hand washing and little to no exposure!). She will continue taking the Singular, which is given through her gtube for issues with inflamation in the lungs.

The gastroenterologist suggested we use a medicine called Ondansetron to control nausea, in hopes to reduce the vomiting. It's primarily used in cancer patients, those who become sick from the radiation/chemo. It's been a miracle drug for Addy and has really assisted in controlling her vomiting. As most of you know, it was not uncommon for her to vomit multiple times a day, and now... the vomiting is once every few weeks!!!! We will continue to also give Addy the Omeprazole (Prilosec) to help with the GERD (reflux disease) that she has issues with in hopes to keep the acid from destroying her esophagus.

A decongestant (Dallergy) is also given to Addy daily in attempt to keep inflamation and congestion under control, since that tends to be a trigger to her lung and vomiting issues. Just last week, the developmental pediatrician wrote a script for a different decongestant that he'd like us to subsitute. It's also known to stimulate hunger, which is something we wonder if Addy has the ability to feel or understand.

Because of the way Addy's body is fed, her digestive system needs some assistance, so she continues her daily dose of Miralax. (I'm sure as she gets older she'll hate that I share this info with the world!!!)

But, there is lots of great news!!!

We've been working on oral feedings more and more, as she's showing some interest. In the past few months, we've been able to work on "controlled feedings" on the weekends. This means that for two days a week, we offer oral feedings only and use water through the gtube, just to keep her hydrated. She still gets her typical night time feeding, so she is getting some calories. The idea behind this is to encourage hunger so that she will have the desire to eat... it's easy for all of us to eat when we are hungry, but when you've been fed through a tube on a 4 hour schedule all your life, it's hard to understand the link between your belly growling and needing to put food into it. It's been working fairly well. It's still a slow, long process, but we've been encouraged by her progress. While it's hit and miss, we've watched her eat 1/2 of a pudding cup or 1/2 of a yogurt cup, a few tablespoons full of macaroni & cheese, 30+ pieces of dry cereal (Dora Cereal, Froot Loops, and Honey Kix are her favorites!), and a scoop of icecream. She has also eaten vegetable soup, cheetos, scrambled eggs, shredded cheese, and a whole lot of other things. Basically, if she asks for it, we let her try it! Lots of food still gets spit out after she's chewed or sucked on it for a while, so we have to just keep trying and encouraging her.

She weighed 24 1/2 lbs at her appointment last week, and she's still a shorty, but her height to weight is proportionate, so we're not worried about her size. Most of her pants are 18 month in size, while her shirts are 2T, they have to be long enough to cover that g-tube and big belly of hers! :)

We had a little incident this weekend, and Addy fell out of her crib. She's OK, but it really scared me. So, we've converted her crib into a toddler day bed. It's low enough to the ground that if she rolls out of bed, it's not a big deal, and I've put a long pillow on the floor to help that too. So, she's in a BIG GIRL BED!!! I have to really make sure she understands that she can't just get up and walk out of bed, since she's hooked up to her night time feeding pump all night, so I'm sure it will take some getting used to. We've had 2 nights in the new bed, and she's shown a lot of promise!

And of course, now that she's in a Big Girl Bed, she's really shocked us and has been asking to sit on the Big Girl Potty! We've been talking about it and asking her to sit on it for months now, but after the first night in the Big Girl Bed, she asked to sit on the Potty! She sat a few times during that day, and we were so proud of her. Today, she actually had success on the potty, so it's been a HUGE weekend for Addy!!! We couldn't be more proud of her!

She's talking up a storm, and although most people don't have a clue what she's saying, it's mainly because she talks so fast. GUILTY, both Nick and I are so guilty of that. We have to watch ourselves and encourage her to slow down so we can understand her. Like most 2 year olds, a lot of understanding comes from the context of the discussion. She's such a funny girl and we laugh a lot at the things she comes up with!

The therapy that she recieves (Speech, Occupational, Nutritional, and Psychological) through First Steps will no longer be available to her after her 3rd birthday in April, so we are meeting with the local school system to determine if she will qualify for developmental preschool, which would provide continued therapy services. We are really torn and aprehensive about this next step in her life, but we know she could really benefit from the structure and socaial aspect that the preschool would provide. We are unsure of what direction we will take if she does not qualify for developmental preschool, so we are researching our options.

Mark your calendars, the March of Dimes walk falls on Addy's birthday this year, Sunday, April 25th. We will be walking as Team Addyson again and collecting donations as well. Please let me know if you are interested in being a part of our team or making a donation! Here's the link to our Team Website. You can sign up to be a part of the team HERE or make a donation HERE. It's a great way to celebrate Addy's life and help others!

Ok, now I'm going to work on getting some new pictures up here in the next week or so, so stay tuned!!!