Friday, February 23, 2007

Blanket

We know a college-aged woman with SMA named MJ through the SMA community and her and her caregiver make these blankets for SMA kids. :) MJ is also a neat addition to our circle of influence b/c she can add so much value to our understanding of our own kids. It's a neat community we communicate with. Click on this link to visit her site: B4SMAKids

So, here are a couple of pics for you to enjoy. Emily has been doing well even though it's been a bit more stressful since Diana broke our hear.... I mean her arm. We're making it, though, and Cindy has been a tremendous help... especially during this time. We are blessed to have her with us. Thank God for secret weapons like Cindy since the Medical Director of our insurance company doesn't give a rats a**. :(

Emily's been fighting another little something or other lately, so she's wearing her BiPAP more often and her treatments are a big longer, and maybe more often if she doing poorly. I actually feel that with Diana's arm broken and the reluctance from insurance to give us more nursing we should go to the Critical Care Unit so Emily can get consistent and aggressive treatments without so much work on our part, but that would be more stressful in the end. We'd just have to fight with the hospital as always. Anyway, that was a fleeting thought -- usually when I am stumbling to Emily's room b/c Diana's poking me to go and turn her every two hours or fix her feed. btw - our case manager at the insurance company is not on my list - she's been very helpful -- even with her hands tied!!

OK - thanks for reading and shoot us an email or sign the guest book if you ever have the chance.

Peace <><

Thursday, February 15, 2007

Broken...

So it turns out Diana's sledding skills weren't as she put on -- she has broken her right arm! It's actually a cute little "Y" shaped fracture, but she's done for. No more fun for her until it is healed. Annabelle saw the whole thing and quickly jotted it down for us to "get the pircture." Here is it:



















She left no stone unturned. That is Diana on the round sled (there were some spelling reconsiderations). As you can see by the arrows she was traveling past the bare tree and SMACK! Right into the neighbors deck. And the sun was shining. Luckily the deck was ok.

So the smaller of her two forearm bones is officially fractured. The thing is, she's been on this liquid fast (that she is ending, but it's a somewhat slow process) and she can't really take any pain killers b/c there is nothing in her stomach to protect her from the medicine, so we are not sure what to do. Also, Diana is Emily's primary care-taker, so that changes things a bit. Cindy and I will step in, but is definitely changes things a bit.

Anyway, keep her in your prayers please.

Tuesday, February 13, 2007

Some things...

Sooooo many of you have been reaching out to tell us that you have been praying for us and we really appreciate it. In lieu of this spirit of prayer we had a couple of things to add to your prayer-box:
  1. We are looking into full-size, wheelchair accessible vans b/c Emily is getting a medical chair soon. First we have to SELL our minivan though. Click here to see it.
  2. THINKING about what to do in our living situation:
    • Rent town home and move to Rancher in area or something else that allows us to walk onto the main floor where maybe we can have Emily's room. This medical chair is going to change a lot of things we think
    • Move to another state where cost of living is cheaper (lots of pros AND cons for this)
  3. Continued help with nursing. We have a couple nurses that Diana is training they seem to really like Emily. So far things have been good. Pray nursing will continue to work out well. We are so glad to have qualified for 8hrs/day! :)
  4. School for me. I am going to try to take a couple of the remaining classes for me degree. I pray there are few distractions. :)
-- The picture is of Annabelle rubbing Emily's ear and sucking on her thumb, as usual. Emily has developed a habit of sticking her finger in her own ear - I wonder why. The stuff across Emily's nose is DuoDerm that protects her face from the mask she has to wear when she sleeps. We either just took it off or are about to put it on. They both tend to like moments like the one in the picture. :)

Saturday, February 10, 2007

The Mall

So we took Emily to the mall today to try and get her out and about. We decided to try the wagon like we used to do with Linnea and it worked wonderfully! We could have used another wagon to carry her other stuff like suction and extra blankets, etc. But, it was nice to get out and I had my first real food since I've been fasting (for medical reasons). I had a yummy sandwich from Panera -- Mmmm.

Anyway, we've had a couple of nurses so far and that has been good. Diana's in the training process with them, but so far it's been good. Pray that we won't have to go through too many nurses before we find the ones we like. Maybe the first three that come over will be the right ones for Emily. :)

Sunday, February 04, 2007

Over the weekend

It was unlike me not to let everybody know about this when it happened, but our days were all off b/c of it. Thur night I was at the ER with Annabelle till 3AM b/c she was having hard time breathing -- probably some environmental reaction to GLOBAL WARMING... just kidding -- it was a typical asthmatic or allergy type thing and with some steriods and Albuterol neb treatments she is fine. She can also lift 300 lb weights now, but they said that'd wear off after about a week or so.

So I slept in on Fri which was a good call b/c we ended up with the ER with Emily Fri night till about 3AM b/c she couldn't breath well. Yippie, life is so fun! It was actually a good visit. They wanted to put us in the PICU again and we said "no." They tested some blood, her urine, and did a chest X-ray and everything looked good so we are treating her for any potential bacterial infection and giving her steroid nebs too. She's lost her voice b/c they tried a few times to get an IV line in, unsuccessfully. We asked them to stop trying b/c she didn't really need an IV anyway. Next time I will just tell them not to put one in unless it is absolutely necessary b/c it just causes her a lot of unnecessary pain and irritates us. There was a short period of time where they didn't want us to feed her b/c that is the typical procedure when you get to the ER, but we had a helpful nurse that pressed the issue until the Dr. agreed (at least that is how it appeared to us).

SO - we are back home and Emily has been doing very well. We continue her treatments every 4 hours, but we are giving her some extra time on the BiPAP if she'll let us so she can relax a bit.

That was an informative entry and not very revealing. Here's your window into the "real stuff." We feel spent. Not so much with Emily's situation, but with how to live this life this way as a family. How does ANYTHING in life align itself with the care of a terminally ill child? So it is hard to know where the heck we're going with all of this. We don't know where the end is and we don't even know if it matters where the end is. All that matters is taking care of Emily, right? Well, what about the other good things that we feel deeply about?? It can all be very confusing if you can imagine. Why live where we do when it is so expensive to be here? Why develop career skills that I have no intention of using in the future. I believe that God is taking this somewhere, but not know where that is can drive me crazy sometimes... most of the time.

Peace <><

Friday, February 02, 2007

8 Hours/day

So - Our Pediatrician had the peer-to-peer with Dr. Freid (the Aetna Medical Director) today and after an apparently frustrating conversation Aetna agreed to grant us 8 hours of Skilled Nursing per day. That is good. :) However, it is not what we were shooting for. :( Anyway, we have some potential relief so that is a blessings. Continuum Nursing is going to be staffing our needs and they have been VERY helpful and eager to do what they can.

Even so, we are in the process of getting an appeal letter together. There is an incredible lady in NC, Andrea, that has decided to help SMA families by writing Letters of Medical
Necessity (LMN) and appeals for these types of situations and I guess her letters have been pretty successful in getting services. Dr. Freid must not be very interested or informed about SMA b/c he had all kinds of excuses for why we didn't need nursing, so that is what we are up against. Some people just don't get it.

Anyway - it IS great that we are getting 8 hours, and we are thankful for that -- But I'll tell you that my heart didn't jump when I heard "8." We are hoping for at least 16.