Thursday, April 24, 2008

Pamidronate Infusion :: Day 3 + Home

So I'm a day behind, but here's the update. We're HOME!

Thanks for your prayers. Emily had a pretty good stay and they did end up doing the last infusion despite her fevers and grumpiness. In three months we will go back for another infusion, but it will be a 1-day visit, rather than 3.

Like I said, Emily did get fevers from the Pamidronate, which was a possible side effect. She continued getting fevers throughout the night and also today, but all were treated easily with some Motrin. Tonight she is pretty grumpy and just wants to be left alone - and she has some blotchiness on her chest, probably from the fevers. All-in-all we think she's fine and it will just take a few days to get things back to normal. Additionally, Emily's blood lab results are off in some ways, Thyroid test not where it should be and Vitamin D is too low, so we'll add some supplemental vitamin D to her diet and test again for hypothyroidism next infusion treatment. If she is still low we will have to add thyroid medicine to her diet as well.

Anyway - that's sort of it for now. I've wondered what it is like for your bones to start strengthening. Denser bones, of course, weigh more - so we're wondering what that's like for a little girl like Emily. We'll be paying attention to see what we can learn from her.

Jobs - I'm still waiting to hear back on some jobs I've applied for out of the area/state. It could take some time, but thanks for the inquiries and I'll be sure to post when I've landed that dream job -- or anything other means of income in a place other than here. :)

Peace <><

Wednesday, April 23, 2008

Pamidronate Infusion :: Day 2 and this morning

So day 2 was great until bedtime. The infusions didn't start until 4pm, or so, and they take 4 hours to complete. Around 10 or 11 Emily started to get a fever and this morning she is not feeling to well. She's at 102 and not happy. :( The doctors are figuring out what to do and they may not do the last infusion today, the third day. The plan was to start the third infusion first thing this morning b/c she's been doing so well and so we could go home as soon as it was finished.

Anyway, we'll see what transpires. Pray that Emily will get over this little hump and get back to normal quickly.

Day 2 involved a DXA scan of Emily's bones. Since there are no samples of 2 yr old's bone density they can only compare Emily's to 3 yr old bones or adults, so it's fairly inaccurate. Nevertheless, her bones are very small and very fragile. Her blood tests also reveal continued fluctuations in scoring. Apparently her thyroid is UNDERactive, which usually means that the person has a tendency to gain weight easily, but if you've ever seen Emily, she does not gain weight easily! She's so small and we are just now finally getting her to gain some weight. She's 2.5 yrs old and weighing in around 18 lbs - she's 35" long. So, the thyroid thing doesn't make much sense, but whatever. Some other blood level are off, I'll try to get those details up another time.

That's the news. Peace <><

Tuesday, April 22, 2008

Pamidronate Infusion :: Day 1

So we are in he hospital for three days for Pamidronate Infusion therapy. Pamidronate is an IV drug that strengthens bone density. Emily has severe Osteopenia, which means her little bones are very fragile and highly susceptible to fractures. Pick her up the wrong way and something could snap. Not something we ever want to experience. About 1.5 years ago Emily did, in fact, experience a hairline fracture in her right arm, but we didn't know about it until it had already healed and she didn't really fuss all that much about it. Baby's bones are flexible and soft at that age, so it must not have bothered her all that much.

Anyway, Kennedy Krieger has been great and it is "comfortable" to be there (yeah right! It's still a hospital). We'll see how Emily does today. :)

Peace <><

Saturday, April 19, 2008

The park and a pedicab

Hey - we've had a pretty good week I guess. It's been super busy with social stuff, but Emily's been able to be a part of it all, so that's great.

A couple of things going on with us -- Emily has a 3-day in-patient hospital stay at Kennedy Krieger Institute for IV therapy for her dangerously low bone density this coming week, so that will be taxing on her. The side affects are "flu-like symptoms," so that's not going to be any fun. Let's pray that she breezes through this just fine. Other than that Emily's been peachy.

We spent a couple of hours at a park that is new to us, right on the Chesapeake Bay. It has like 5 miles of walking/nature trails and is wheelchair accessible! :) We had a great time, but it was hot and she started to not have a great time until we got her back to the air conditioned van. Check out the pictures below.

Lastly, I've been trying to figure out a way to get Emily out and about without using the van or pushing her in her chair -- so I turned to peddle-power. It's green, good for the body, fun for the family, and easy on the pocket book. I've chosen to start out with a rickshaw (pedicab). It's basically a bicycle taxi, or a large adult tricycle, and I want to redesign the passenger area to accommodate Emily better. I'm thinking two bench seats, but we'll see what my legs can do with that configuration. There are some MUCH better rickshaws out there for thousands of dollars, but we'll see what we're able to do in time. This is a good start and will be lots of fun. :) Let me know your ideas if you have any.

Now, for the pictures ::



Peace <><

Saturday, April 12, 2008

A great day even though mom's away

We had a great day today, me and the girls. Diana is gone for a weekend of luxury at a Women's Retreat (I better add this in -- Diana was on a church retreat at a camp with ladies from our church), so we'll be expecting big things from her when she returns. ;) Just kdding - we're anxious to have you back. Also, Diana's sister, Cindy, was my helpmeet for the weekend as well as night nurses. I have to add this in so there are no unattainable expectations set on other SMA dads. :)

Who the heck knows what to talk about when mom's away anyway?! We just sorta sit around twittling our thumbs trying to think of a craft or something to do. Seriously though, we had a good day. B'day party, the mall, a van ride, a walk, and sleeping. Emily had a relaxed day that involved two decent naps. I think she aspirated some saliva last night b/c we had a bad situation where she suddenly couldn't breath and it took about two hours of cough assist, draining, CPT, cough assist, suction, etc, etc to get her back up to where she need to be, oxygen wise. Finally we removed some stringy stuff that she was finally able to cough up -- and then all was well. She and I slept all night and our nurse tended her night-time routine needs. Anyway, so I was relieved when she woke up happy and remained that way all day. In fact, 1.5 hrs after waking her and the morning routine she fell asleep with her biPAP OFF for like 2.5 hrs or so. I selfishly let her sleep off her biPAP for the ENTIRE time!! I was there ready to put it on if she stopped breathing, which she has done, but she did great and was obviously deep into her REM sleep. She was beautiful to watch sleep with no mask on her face. :)

So, the weather was beautiful again -- near 80 again! Crazy!

Ok - so that's a quick update. Thanks for checking in!

Sunday, April 06, 2008

Cherry Blossoms :)

We had a GREAT day at the Cherry Blossom Festival here in town on Saturday. It was supposed to rain all day, but we never felt a drop and it was just sunny, warm, and beautiful. :) We couldn't have asked for a better day to see the cherry blossom's in full bloom with Emily. Here's a video of our fun.

Wednesday, April 02, 2008

24 hrs, no major desats

I didn't put this information up last time, but Emily's been giving us a hard time with her oxygen desaturations over the last week or so. :/ She'll be fine one minute, then next thing you know she's not breathing, at all. Totally unable to cough or anything, but obviously trying. Anyway, this had been happening once a day or more for a few days, until this last 24hrs +. We are not sure what the deal was, but we were giving her extra treatments and CPT (percussive therapy on her lung areas to loosen secretions) throughout the day and night to stave off any infections or colds coming.

It could've been the weather changing, it's been VERY nice here, or something else. She only had a fever one of those day, I think, so -- who knows. The good thing is she's doing ok and was happy through the whole ordeal despite these dramatic drops and scary times for her. Normally Emily's O2 saturations are >97%, or so, and she dropped as low as the 50's on a couple of occasions. That is scary - really scary.

OK - so we're doing ok. I'm doing some heavy looking for jobs in some other areas of the country b/c we are anxious to move. I guess I hadn't told some people that b/c I've seen some surprised faces when I've mentioned it lately, so -- WE'RE TRYING TO MOVE. :) We love the friends we've made here, but we've got to get somewhere cheaper and with medical care that we don't fear. So, I've applied for a few jobs here and there (you can email me if you want to know where) and we're just waiting to see what the Lord provides. As my dad reminds me, "man makes his plans in his heart, but the Lord directs his steps." A good verse, for sure.

Take care! -- Peace <><