It's with great sadness that I post this. Alex's grandpa, my step-dad, was shot and killed in a robbery at the restaurant where he worked as a cook in Tulsa. Please pray for our family.
http://www.tulsaworld.com/news/article.aspx?subjectid=11&articleid=20100521_11_0_Police50618
http://www.newson6.com/Global/story.asp?S=12519763
Friday, May 21, 2010
Monday, April 19, 2010
FUNdraising time for Alex & the SBAC
It's time again for the SBAC's Walk-N-Roll for Spina Bifida. The event is Sunday May 9th (Mothers Day). We actually plan to bring Alex this year - we couldn't last time since she was in the hospital.
If you are in Denver, we'd love for you to join/sponsor us. 70% goes to SBAC, and 30% into a fund for Alex to provide equipment, therapies, camp, etc. (If you pre-register for the race by 4/23, you're guaranteed a t-shirt and a reduced registration fee)
View our fundraising page with more info on it by clicking the button below:
Also...here's the latest video of Alex and her new signing skills - well...sortof.
Wednesday, March 17, 2010
Thursday, March 11, 2010
Bathtime pics
Since we didn't post any photos - I thought I'd give a little follow up with some cute bathtime pics.
Alex really loves taking a bath. She especially likes picking up her cup full of water (with holes in the bottom) and letting it drain everywhere, even if it's in her face. As you can see from the 1st pic, she's still in one of the basic infant tubs, which we're hoping to upgrade tomorrow. We really need something that supports her upright, since she has such a hard time sitting up on her own.
In fact, that was the focus of SB clinic the other day - supportive equipment and what's available that would most benefit her. She really needs something that will support her lower back & allow her to focus on controlling her head & neck. It's just too much for her to do all 3 at once (for more than a few seconds anyway). But we're hoping the HGH therapy, combined with regular physical therapy, will get her trunk control back to where it should be. So far, the HGH therapy seems to be going well, but they tell us it will be a few months before we really start to see significant changes. She does seem to have grown another inch in the past few weeks, which is def a good sign.
Her fevers are still coming & going, but just low enough grade to keep us from taking her to the hospital (around 100F). And still pretty sporadic. But they don't seem to be going away completely, so we're going to wait until the weekend's over & see if we need to make a call to her doc on Monday. Since everything else seems fine - we're trying not to be too concerned about it, but there's always that chance that something unknown's lurking around the corner.
Alex really loves taking a bath. She especially likes picking up her cup full of water (with holes in the bottom) and letting it drain everywhere, even if it's in her face. As you can see from the 1st pic, she's still in one of the basic infant tubs, which we're hoping to upgrade tomorrow. We really need something that supports her upright, since she has such a hard time sitting up on her own.
In fact, that was the focus of SB clinic the other day - supportive equipment and what's available that would most benefit her. She really needs something that will support her lower back & allow her to focus on controlling her head & neck. It's just too much for her to do all 3 at once (for more than a few seconds anyway). But we're hoping the HGH therapy, combined with regular physical therapy, will get her trunk control back to where it should be. So far, the HGH therapy seems to be going well, but they tell us it will be a few months before we really start to see significant changes. She does seem to have grown another inch in the past few weeks, which is def a good sign.
Her fevers are still coming & going, but just low enough grade to keep us from taking her to the hospital (around 100F). And still pretty sporadic. But they don't seem to be going away completely, so we're going to wait until the weekend's over & see if we need to make a call to her doc on Monday. Since everything else seems fine - we're trying not to be too concerned about it, but there's always that chance that something unknown's lurking around the corner.
Thursday, March 4, 2010
Spring Fever
I'm sitting here in disbelief that it's been a month since our last post. Where does time go? We've certainly been busy and hit some speed bumps but we are still hospital free. Alex recently finished a two week dose of antibiotics for aspiration pneumonia. We had been to see the pediatrician a couple of times over a 3 week period for unexplained fever and fatigue and finally pinned down the problem. She's doing much better but the fevers are back as of this weekend. Unexplained fever always seems to put us on edge. It can mean so many things and the spectrum is anything from a typical virus running it's course to an infection requiring a hospital stay and anything in between. We are never sure what to expect and just try to remain positive.
We had a speech consult last week and the therapist recommended that Alex have speech therapy about twice a month. Not too sure how we'll fit 2 extra sessions a month into our schedule but somehow they'll get squeezed in. This will make 11 in-home therapy sessions a month for us. Now you know why we are only posting once a month :)
We have spina bifida clinic tomorrow and since Alex is a little older she now goes to clinic every 6 months. We always look forward to clinic and it really helps shape what the next 6 months will look like for us.
Love,
The Diffees
We had a speech consult last week and the therapist recommended that Alex have speech therapy about twice a month. Not too sure how we'll fit 2 extra sessions a month into our schedule but somehow they'll get squeezed in. This will make 11 in-home therapy sessions a month for us. Now you know why we are only posting once a month :)
We have spina bifida clinic tomorrow and since Alex is a little older she now goes to clinic every 6 months. We always look forward to clinic and it really helps shape what the next 6 months will look like for us.
Love,
The Diffees
Tuesday, February 9, 2010
Our little Bansai
I know it's been a while since our last post, and not a whole lot has changed since then. We've had my Mom staying with us, which has been a huge blessing. She's really been helping us out a lot over the past month - either watching Alex for us or helping out around the house - it's definitely nice to have her with us. And of course Alex loves having her here (instead of just seeing her on the webcam).
I'd love to say that Alex is just "growing like a weed" but that's not really the case, as she hasn't been growing at all for the past 7 months. And her weight hasn't changed since she was 9 months old. We had some blood work done & consulted with Endocrinology and it turns out she has a growth hormone deficiency. So we've added hGH to her battery of daily meds, which we're hoping will help significantly with her muscle tone as well as physical development.
This may sound like another setback, but to us it actually feels like a big step forward in getting to the root of some of her problems. If the hormone deficiency is causing her weak muscle tone, then that could explain her difficulty with head & trunk control as well as swallowing and aspirating (and the myriad of respiratory problems). And the hGH treatment can be a wonder drug with very little side effects in cases where the body really needs it. So let's hope & pray that this really is a big step forward. I guess it takes several months for noticeable growth improvement, but we're hoping to see increases in her energy level sooner than that. Either way, we'll be sure to keep you updated.
Much love,
-Jimmy & Nicole (& Carol)
Thursday, January 21, 2010
Check out my new teeth
I took this photo today during Alex's double therapy session. She has physical therapy once a week and then once a month we have a home visit from a teacher of the visually impaired. She comes to help us learn the best ways to enhance Alex's sensory experiences and learning.
I think we've mentioned this before, but just to give a little history, Alex's vision is fine however she does have some issues with eye function most likely caused by her Spina Bifida. Early last year her PT noticed she was having difficulty looking to her right side along with some other issues so she had a vision test and functional vision evaluation done. She was diagnosed with two functional issues and the doctor recommended we take her twice a week to an infant and toddler class offered through Anchor Center for Blind Children. It's a non-profit organization dedicated to providing early intervention and education to blind and visually impaired children throughout Colorado. The center is amazing. It was built in 2007 and it's about 2 minutes from our house. When I took her there for her initial visit last summer they had us wait in a dark room filled with lights, textures, and sounds. As good as this option sounded to us (and Alex too who I'm sure would like to be around kids her age) we couldn't risk Alex being exposed to so many germs. We've settled for home visits for now and maybe this summer she can attend class.
Did you check out those two front teeth. Alex got those for Christmas :)
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