New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Tuesday, November 30, 2010

Another Hospital Stay; Fun at Home

After about 10 weeks at home, Nathanael and I went back into the hospital on Monday. He had been showing signs of something not being right by mid-week, so it was no surprise to us that when he was seen in clinic on Monday they decided to admit him. He did also have his first fever in quite awhile during his check-up. Unfortunately because he no longer has any central lines, he quickly became a pincushion (although he didn't bruise nearly as easily as last month during his regular blood draws). He had blood drawn in clinic, then an IV was put in an hour or so later, then he had another draw on Tuesday morning, and an injection in each thigh on Wednesday (at least he didn't have labs drawn that morning, as everything had looked good the day before). He also had two days of heavy IV antibiotics, which is standard practice for BMT kids who spike a fever, and in his case, since we were convinced he had a UTI it was the best way to start treating it early.

However, his UA (urinalysis) was clear (showed no signs of infection), and NONE of the cultures they collected (urine, blood, stool, nose, armpit) were positive for ANYTHING. This is good news of course, as he has none of the viruses they test for, but it doesn't help us really know what's going on with him. Ugh. They suspect a mild GI bug, but he only vomits when something gags him (oral meds, feeding), and in our experience with Jamison, that's not the way it usually works.

So after staying in the hospital for just over 48 hours (including 2 nights with not much sleep for either of us) we were sent home. I'm thankful for that. We also had a nice evening with some friends on Wednesday who brought yummy dinner and then fixed our ailing garbage disposal - yay! They had expected to just spend time with Brad and Jamison, but it was fun for all of us, and Nathanael smiled at everyone, though he still looked pale and blotchy all over. We are now just trying to keep the little guy hydrated, rested, and getting all his medications so he can deal with whatever this is without being readmitted to the hospital.

The very good news is that despite this recent hospital stay, our medical teams have reevaluated his medication list, and have decided to stop two medications now, and may stop one more in a few weeks - YIPEE!!! That leaves us with 7-8 meds in the morning, 1 in the afternoon, and 6-7 in the evening - a BIG improvement. The one in question will be decided upon after more blood tests are done next week. If his mitogens and antigens look like they are responding more normally then we may be able to stop his antifungal med (voriconazole). His immunologist here has also ordered his T and B cell studies to be done next week, since his last test was in early October, and his steroid dose has dropped significantly since then, AND because we don't expect to go to Cincinnati for a check-up until March (we had expected to go in January, but we won't do that unless his condition worsens or is cause for concern). I hope that we'll see a major improvement since his steroids have been cut back, but we'll just have to wait for the results.

In other exciting news our little guy has learned to pull himself up to standing! This is a huge development for him, and though delayed, he is continually making progress. He can also sit himself back down, which is a good skill to have. :) I think he loves the view from above the crib or pack n play rail.

Jamison helped me decorate for Christmas this year, and we've had a lot of fun getting out the tree, ornaments, stockings, and even putting lights and bows on the shrubs out front. He is quite the little helper in so many ways, and even our tree bears the mark of a height-challenged lead decorator (75% of the ornaments are 2-3 feet from the bottom!). He also seems to have found a new favorite book for the seaon, "The Little Drummer Boy" (one of my childhood favorites). We even sang it while playing his drums the other day (thanks Uncle Jason for the cool South African drum!).

My almost-4-year-old (who regularly asks for things for his birthday - he seems to think it's next week, not in several months!) is starting to write his letters. I've included here a picture of him showing off the word 'pentaceratops' on his doodle-pad. He copies dinosaur names from the back of his puzzle pieces. I feel like I should be teaching him to write, but he's practically teaching himself!

Oh, and we did have a nice Thanksgiving together - just the four of us, but LOTS to be thankful for!

Saturday, November 20, 2010

One Year Check-up (in Dallas)

It hit me the other day that November 15 was our closest check-up to the one-year anniversary of Nathanael's cord blood transplant, so I asked Brad to take a picture of the two of us before we left for the hospital the other day. At this point our doctor in Cincinnati doesn't need to see us until after the first of the year, so we won't have a one-year check-up there. It was relatively uneventful, except that we discussed the weaning schedule for Nathanael's oral hydrocortisone. :) Barring any GvH flare-ups or other issues he should be off all steroids by the end of January. Yay!!!

I should also mention that this visit also substituted for a normal 15 month check-up, and I was a little discouraged that his weight is almost exactly 1 kilogram more than he weighed 12 months ago, at the time of his hospital admission. His current weight is about 8.2kg, and at just under 3 months of age he weighed 7.14kg. He has weighed as much as 9.5kg (while on IV fluids and lots of steriods), and we have seen fluctuations based on things like medications and teething patterns. The good news is that he has grown almost 2cm in the past month or so! He's now around 67cm long (around 27 inches). For now, the endocrinologists are not concerned about his growth, though he has "fallen off" the growth charts. We do expect to see quite a bit of growth once he is off steroids in the spring.

Please keep us in prayer during this RSV and flu season, that we would all stay healthy, and that Nathanael's immune system would continue to grow.

Tired little boys...tired parents

So here's how things were in our house the other day...but not a whole lot has changed. Some days we are just so wiped out! I thought you'd all enjoy some pictures - even tired ones! - of our precious little boys...however, Brad and I are less cute when we're tired, so you're going to have to take my word for it that we're tired too!

Friday, November 12, 2010

1 nap x 2 hours = 3 haircuts...I love this math!

Many of you have commented on Brad's hair lately (or at least that's what he tells me)...and since I noticed he was pulling it back from his face and twirling it with his fingers I realized it was time for him to have a haircut! I also noticed that Jamison's hair was starting to fall over his eyebrows and ears. So since Brad took Thursday off so we could take Nathanael to the endocrinologist, we were all home together in the afternoon, and here's how we utilized the little guy's naptime:

And just in case you're wondering, I did NOT cut Nathanael's hair yet! The third haircut was mine, and I didn't take any before and after photos. Suffice it to say that Brad couldn't even tell the difference, even though I felt much better about losing those split ends!

Thursday, November 11, 2010

Halloween 2010

Here are a few pictures from one you'll even see the praying mantis catching a ladybug, and in another he tries to pounce on a large spider from across the street! Oh, and as much as Jamison was excited to dress up, Nathanael clearly lacked enthusiasm for his cow and bear outfits. He was still awfully cute though! All in all, we had fun as a family, and saw some friends, which was, after all, the goal this year. Maybe next year we'll participate in more neighborhood festivities...but for now we're thankful for small blessings like getting out for an hour or so. :)