The Road Not Chosen

I'm Thinking?

Wow, I am quite surprised & blessed that Jessica at Raising Joey has nominated me for the Thinking Blogger award. For the last couple of months I can barely remember my name, so it's a blessing to know that my ramblings have helped someone along their journey!

Now my challenge is to think of (just) 5 blogs that make me think! Here goes the list, in no particular order:

1. Prof. Jeff McNair at Disabled Christianity. His efforts at reminding the Church that all are to be fully included in the Body of Christ bless & encourage me.

2. Caetz at Allthings2all who has been nominated a gazillion times & deserves to be. When my brain needs a kick-start out of complacency I go here.

3. My new friend, Stephanie, at One Big Adventure. Her son, James, has Down's & is newly diagnosed with leukemia. I admire Stephanie's faith & positive outlook & commend her for the name of her blog!

4. Amy at Not Your Typical Pastor's Wife is breathtakingly honest, and hilarious to boot.

5. Last, but certainly not least, Barbara Curtis at Mommy Life. Like Caetz, she gets nominated often. I appreciate her honesty & ability to make me take a deeper look at my own life.

Honorable mention would go to the late, great blog, Proverbial Wife, which Marla Swoffer maintained for quite some time. I truly miss her posts. (Marla is alive & well, I should point out. Just her blog is gone!)

On to Evan news, for those of you who have been inquiring. (Sorry, my home computer has been at the office, filling in for my work computer which passed away last week of unknown causes.) Evan's white cell count last Thursday was 1.8. He underwent 3 days of Neupogen (G-CSF) shots to help raise his count. Well, indeed it did! His count this morning was....20!!!!! Ev is relieved as this means he won't have to get any shots between now & Thursday when they check his count again. It is Harold's 50th b-day today so he thought this was all the present he needed! (Well, we might get him something else.)

I'm off to buy some vegetables to counteract all the sugar we will consume tonight celebrating my wonderful hubby & my brave son. Enjoy the rest of your day.

Going Down?

Nothing right now seems to be easy so we should be used to the roller coaster ride. I guess I need to take some Dramamine or something since my stomach still drops to my toes on at least a weekly basis.

Evan's white count, speaking of dropping, went from 2.0 last Monday to 1.4 this Monday. This brought us a phone call from the Infectious Disease nurse. They are now officially "quite concerned", whereas last week they were "watchful". The plan is to do another blood test this Thursday A.M. to see what his count is. If it is still 1.4 or lower, there will be discussions about putting him on a med called G-CSF to boost his white cell production. There are lots of nasty side effects, so we are praying this won't be necessary. The only problem is that if his count stays this low, they can't even think about operating on him in mid-May. Low white cells mean high infection risk.

Evan is fairly bummed out about this news, as it means he can't go to the school art & music festival tomorrow night & probably not the High School Parent Appreciation dinner on Friday night. We, too, are bummed! At least he made it to church Sunday & was able to have some Senior group pictures taken (click on it for a larger view). Here is an impromptu one shot by me, not by our amazing photographer/anesthesiologist Dr. Dan. (Check out some of his work here.) 

In aide news, we interviewed a young man (28 yrs. old, not so young I guess) last Friday. We liked him & thought he might be a good fit for us. He will hopefully start sometime this week. Oh, did I mention that he is Brittney's boyfriend?! I felt such a connection with her, so this is an interesting turn of events.

In work news, my computer at the office is very ill and has been put on life support. It hasn't worked well for over a week. All manner of things have been done to it, yet it doesn't seem to have the will to live. It is in the computer O.R. today & a verdict will be given tomorrow. I continue to work from home, which has ceased to be fun or very productive. In fact, I think I hit intense frustration mode today when it refused to behave after Harold had labored long into the night to reload the operating system on it. I think I'll go take some Dramamine or at least some chocolate.

You're How Old?!?

Yes, folks, Brittany (see previous post) was indeed young & blonde. She was 19, the same age as Evan, & cute as could be.  While very professional & nice, we knew we had to decline her as a caretaker. The agency was not very understanding. Harold tried to explain that we could not have someone caring for our son that he might get a crush on. After all, his caretaker will be with him for 35 hours a week & has to do some very personal caring & we felt that it would not be appropriate for a young woman his age to be doing those things. That would be the most prolonged one-on-one female attention he had ever received. We have always tried to keep close tabs on boy/girl issues, as he does have the same raging hormones of any teenager & can get crushes like any other guy.

Listening to Harold's end of the phone conversation with the agency was hilarious: "Don't you have someone more, well, of a mom or grandma type?" Apparently, they didn't have anyone with the right certifications, as caretakers for those under 21 have to have certain clearances. They will work on that issue but for the time being, we are still caretaker-less. I wondered if they would have sent her to care for a 19 year old college student or if because Evan has Down's they felt it would be ok to send someone the same age as him? (Is anyone else seeing my point here?)

In other matters, Evan's appetite has returned with a vengeance, I am happy to say. He is eating 3 full meals a day & asking for snacks, which is really good. We also have his infusions down to 1 hour at a time, with no complications. Getting those other 2 1/2 hours a day back has made a huge difference for us! Right now, our living room is hosting a Nerf basketball tournament with Evan & his friends Jon, Matt & Andrew, an almost normal Saturday night at our house. How wonderful that is!

Is The Cavalry Coming?

We hadn’t heard from the Bureau of Special Healthcare Needs as of this morning so we called to check to see if there was any action on getting Evan an aide. I got a call this afternoon that a case nurse would be out to interview us tomorrow afternoon & she would bring someone named Brittany with her, who would possible, be the aide. Personally, I was hoping for more of a “Helga” or “Marge” rather than a “Brittany.” If she’s young & blonde, she’ll have to go! We definitely don’t want someone Evan could get a crush on.

Here is a pic of our guy while he was at Shriner’s (that’s Dad steadying him from behind):

And one of him lounging at home today. He’s propped on lots of pillows to keep bedsores from developing.

Sleepless in the 'ville

How tired can I possibly get? I haven't felt like this since Evan was a baby. It's not that Ev isn't sleeping well, he only wakes up once or twice a night. It's not that I am the only one getting up with him; Harold & I alternate nights. It's just that when I try to go to sleep my mind goes into overdrive. Or if I do sleep (& Harold has this happen also) I dream about IV's & flushing lines & sundry medical things. Quick, someone call the waaambulance! (If you've never seen "The Kid" with Bruce Willis, go rent it right now!).

Our trip to the surgeon's & Infections Disease doc went really well. Of course, it took us 3 hours just to pack everything into the van. Oh, and 3 minutes for Evan to maneuver into the van. Hooray! The surgeons spent about 5 minutes looking at Evan. They were pleased with how his hip is healing & his femur hasn't shifted out of where they placed it, which is good. I asked if there was any way to moved the surgery date closer but no go. The antibiotics have to have a certain amount of time to work, so they can't move the date up.

The I.D. doc was very, very, nice and very informative. (We hadn't met her before in person.) The good news is that the type of staph that Evan has in the "puniest" kind, as she put it. The not-so-good news was that we will have to do the IV antibiotic infusions twice a day for the next 4-6 months. (More on that subject later.) The reason is that because there are now metal pins in Ev's hip, & his femur will have metal in it also, the staph germs love to hang out around the metal. If they get there, they become resistant, which is bad. So the infusions have to continue to make sure that doesn't happen. There is an oral antibiotic that would do the same thing, except that it bottoms out your white count & compromises bone marrow production. Since Evan's white count is naturally low because of Down's, that is not an option for him.

On an up note she did tell us that Evan could get out around people, just to try to keep him away from sick people. So we all went to church on Easter Sunday! I don't think I've ever appreciated having us all at church at one time so much before. Of course, it wore Evan out, but he was so happy to go. One of his friends gave his life to the Lord, and Evan was happy to be there for that. It is a big production to get Ev from point A to point B, so we will probably only go out a couple of times a week. But it's nice to have the option for sure!

Now, about the subject of infusions for the next few months. I didn't realize it at the time, but that bit of news really set me back and, frankly, made me angry. (It would take me 3 days to figure out that I was angry about that.) As Harold & I have tried to talk it through, I realize that the prospect of Evan or either Harold or I not being able to be out past 8pm for the next several months was really depressing & frustrating me.

We are in the process of trying to find a way to accommodate this fact. I have a call in to the Bureau of Special Health Care Needs, to find out if they can make an exception to the "no nurse unless she's there for 4 hours" rule, especially since this is a long-term situation. I'm going to try to explain it as a respite care issue & also as a work issue. As a pastoral couple, a lot of what we do is in the evening (Wednesday night service for instance.) Also, good heavens, we do have a marriage to maintain! So our hope is an exception will be made on that basis. We have had a friend or two offer to learn to do the infusions, which we are also considering & will probably do.

Anyway, when I woke up yesterday morning, with a dark, fuzzy cloud over my head from muddled sleep & stress dreams, I thought to myself, "No matter how stressed I am right now, the fact is, Christ has risen and this will all be over one day. I get to go live with Him for eternity." And that is a hope we can all cling to, right?

Spring Has Sprung

Oh, the amazingness of spring! I am so happy that we got home from the hospital in time last week to see our yard turn green & our tree in the front yard burst into pink blossoms. This is my favorite time of year in Northeast Missouri. I never seem to grow tired of the miracle of seeing the death of winter turn into the birth of spring. The grass turns a particular shade of green that isn't seen any other time of year. In fact, it's almost luminescent in it's green-ness! A dozen robins staged a huge fight on our deck for a couple of days to see who would win the right to build a nest on top of our electric meter. The winning couple now proudly & diligently patrol their turf & we can't wait till the babies are born. The bunnies are chasing each other & soon babies will be hopping around in the yard. It's so fitting that we celebrate the resurrection of Christ during this season, don't you think?

Evan continues to slowly heal. We make another trip to the big city this week to meet with the surgeons & I.D. doc's. (No report back on the blood cultures. No news is good news!) This will just be an overnight trip (right, Lord?) but is taking a lot of strategic planning. I feel like we are mounting a medical expedition to Everest or something. There is not only a suitcase to pack, but all our I.V. gear, as Ev still needs his infusions every 12 hours. Then there are other meds, toiliting supplies, a reclining wheelchair, and mounds of pillows to make Ev comfortable in the van & the hotel. Aye-yi-yi!

Harold, ever the administrative planner, got Evan out of the house Sunday afternoon for a dry run to see if we could get him in & out of the van by ourselves. I am definitely too old for this but will just have to buck up! It worked ok & Evan got a ride to a couple of friend's houses where everyone came out to greet him! He was worn out but happy when he got back home.

I forgot to mention that Harold & I actually got to go to church Sunday for the first time in over a month. Our friend, Patsy, came to sit with Evan so we could go. It was wonderful to see everyone, but weird not to have Evan with us. We are so blessed with such a wonderful church family & don't take them for granted for a second! My wish is that everyone could experience such friendships. Thanks be to God who has so blessed us!