How are we doing?

Brad tells me that he is often asked, "How's Nathanael? How are Jamison and Bree?" Since we still don't get out much to see people (my big adventure this week was taking BOTH boys to the hospital, and spending 7 hours there, plus 2 in the car) here's the lowdown on us:

Nathanael still has no immune system of his own because he is still on steroids, which suppress the immune system, and in his case, keep him from growing T and B cells (lymphocytes required to fight off infection). He will be off steroids (except for a small "physiologic dose", which will be taken orally - no more IV meds at home!) after August 5. :) Yes, I'm THRILLED about that!

Besides that he is a generally happy little boy, doing most of what almost-1-year-olds do: eating a lot of everything (he now loves beans, peas, crackers, cheese...he tried zucchini tonight), babbling up a storm, grabbing everything within his reach (and sometimes things out of his reach), watching his big brother, and just wanting in on all the action around him. If I let him loose on the floor I think he'd end up rolling all over the place.

Developmentally he's on track with everything except gross motor skills (he doesn't yet pull up to standing, and cannot move himself from lying down to sitting up). His doctor reminded me that his weight gain (he weighs around 19.5 lbs now!) and leg weakness (caused by his time on steroids) both factor into this, and while she's not too concerned, has recommended a PT consult, which should happen sometime next month through ECI.

Jamison is doing really well, although today he tried testing the limits a few times, and spent some time in "time out"...not fun for either of us, but it does help. Well, that along with the removal of favorite toys. He's growing and changing so much right now that we just keep trying to adapt. He loves to sing (today it was "Twinkle, twinkle little star" but instead of "like a diamond in the sky" he'll substitute things like, "puzzle" or "flag" or "truck" for "diamond". It's cute to see what he comes up with), he LOVES puzzles, and now tries to do them quickly, and he plays with his cars in the parking lot (kitchen table) and his animals at the zoo (basket) or on the table in the living room. He also LOVES to hear us make things talk (i.e. "Make Nathanael talk" or "make my carrots talk") and wants to hear us make up stories about the pictures in his puzzles, or make up songs about various states (J: "Sing the Minnesota song." Me: "What Minnesota song?" J: "The Minnesota song!" Me: "Oh, I guess we need to make one up..."). He is very creative, he even has imaginary friends in various states, and a few in Canada! On Monday, when the doctor addressed him as the "famous Jamison" he said, "Miss April calls me Jamison the Puzzle Master." It was so cute!

So how am I doing? Tired, busy, thankful, worn out, overwhelmed. I could write a lot here, but it's late, the computer battery is almost gone...the story of my life these days. Please do keep us in prayer, and feel free to call (just call on the home phone, as cell minutes are a precious commodity these days!). :)

Bree

Two Happy Little Boys

Here are a few recent pictures of our two happy - and busy! - little boys:














Almost every day, I thank the Lord that I am home with my family, and that BOTH boys are with me. In spite of all the limitations of our relative isolation, I LOVE being able to hug both my little boys each day. :) Please keep praying that we'd all stay healthy, and that Nathanael's immune system would start to grow as soon as he is off his methyprednisolone (last dose of IV steriods is Thursday, August 5!). Then we have his 9-month-post-transplant check-up on August 11 in Cincinnati. Please pray for travel plans and safety as well. Thanks!

Outside!

So we're thankful for the break in the weather (rain, lower temps) and have spent a little more time outside lately. We still have to keep Nathanael out of the sun, but if he can stay shaded in the stroller (or inside, while we listen on his new monitor!) then we're okay. :)

The other day before the rain started Jamison "helped" Brad water the lawn, and discovered what fun it is to outrun the sprinkler!















Another day we played outside (while Nathanael took a nap inside) and Jamison found a new friend...a grasshopper! It was so cute to see him catch it, but despite his best attempts to be gentle, the poor, helpless creature wound up with two broken legs. We did finally put him in a jar to take inside, and we fed him grass, and gave him fresh air, but he didn't last the night. I think the broken legs would not have helped him much in his natural habitat.














The third day shown here is of our first walk with both boys in the new stroller! (Or at least this is the first one I can remember!) I figured out that I was pushing over 50 lbs worth of kids (32 + 19.5) and 15-20 lbs of stroller for 45 minutes - quit a workout! The good thing was that Nathanael conked out after about 10 minutes, so Jamison and I could look for birds, talk about trees, and enjoy the time together.

Long day tomorrow

Tomorrow Nathanael and I will spend all day at Children's Medical Center Dallas, where he will see BOTH his immunologist and his transplant doctor. He will also have two infusions, one of IVIG (immune globulin, the one he's been taking almost weekly since September), and one of Pentamidine (an antibiotic that he takes monthly, only in the hospital, that is given over several hours). Not really a big deal, as these are both old hat...it will just be a long day for us since we'll leave before 7am and hope to be home by 5 or 6pm.

Please pray for the logistics of tomorrow's appointment, as we also have to do his cap and dressing change (for his central lines - done every week) and that's usually a little stressful for me. Also please pray that we would not encounter any sick people in the hospital tomorrow, and that people would honor my request to be placed in a room immediately to avoid exposure to other kids and their families in waiting areas.

Just a note: I hope my Facebook updates and posts on the blog don't sound liking I'm whining. I am VERY thankful to be home with all of my boys! There are still many challenges we face on a regular basis (toilet training while keeping the house as germ-free as possible is just one...), but at least we can face them together. I do want to share honestly without sounding ungrateful for all that God has done for us - much of it through the prayers and support of all of you! There are days that are downright exhausting and discouraging, but again we have so much to be thankful for. I am still sorting out how to process and handle all these changes in a way that is healthy, authentic (as opposed to putting up a facade), and helps us to open our eyes to see God at work in our lives and in those around us.

One more set of prayer requests: Please pray for J.M., as he is in the hospital right now, dealing with a post-transplant infection. Pray for his recovery, and for his parents to get the rest they need. Also pray for L.B. and her family as she prepares for her transplant. A praise is that she was well enough to attend her daughter's wedding last weekend - thank you Jesus for answered prayer!

Happy Anniversary to us!

Today is our thirteenth wedding anniversary...and our gift this year is a week with NO DOCTOR VISITS! This is the first week since October that we haven't had to go in for tests, check-ups, or treatments...praise God for a day of rest! We did have the home health nurse come to assist with cap and dressing changes, but that only took an hour or so out of our day, and we didn't have to drive anywhere. :)

So to celebrate Father's Day, our anniversary, and our day home all together, I made a cheesecake, we had gourmet pizza (well, I had gourmet pizza with garlic butter sauce instead of tomato sauce, Brad and Jamison just had cheese pizza), and we set the table and even put out candles...Jamison couldn't figure out why we had candles out at dinner. It was a good day.

Nathanael started to say "Da da da" just in time for Father's Day, which was really fun, and is very cute. He just turned 10 months on Friday and is becoming such a little boy...I can't believe how fast he is growing up! Of course Jamison seems so grown up to me now: he's learning to use the toilet, is talking up a storm, loves it when we tell him stories, and is a great helper around the house and yard. His new interests are volcanoes ("When can I see a volcano outside?"), the "Statue of Livertry"

a (see the "pose" in this picture - thanks in part to a recent issue of the DTS magazine, Kindred Spirit, with its focus on immigration and its great pictures!), and the "50 states that rhyme" song. I get tired just trying to keep up!

I've also managed to miss posting a major milestone: we hit 200 days post-transplant sometime earlier this month! The 100 day mark was such a big deal (special immune studies were done, etc.) that day 200 came and went without a mention at all. I can't believe it has been 7 months since we were admitted to the hospital for treatment. Our prayer now is that Nathanael continues to recover well, gets off steroids, and starts to grow his own immune system. Of course we'd love to be able to stop giving 8 different oral meds twice a day too. (Brad actually described it as "waterboarding" the other day...a very disheartening description, but probably somewhat accurate.) The plan is to see our doctor in Cincinnati again in August when we can combine that visit with the trip to Columbus for Jeff and Julie's wedding. Fun!

Oh, and to see a video of Jamison listing the 50 states, check out Brad's Facebook page at: http://www.facebook.com/home.php?#!/video/video.php?v=440105515198&ref=mf. It's a little hard to hear, since he's facing away from the camera...but it's cute. (The lyrics can be found at the link listed above.) Enjoy!

Routine...what's that?!

OK, so I haven't posted in two weeks again...where does the time go? Well, I'm trying to establish a routine around here, but most of you know that has never been my strong suit. Or at least having an organized, formal routine hasn't really worked for me. You could say that my "routine" had been procrastination! At any rate, here's the latest at home:

*Nathanael is doing well overall. It seems that his blood counts have stabilized, in fact his hemoglobin was 12 the other day...completely normal! That's not to say it couldn't change or drop again, but for now we're only having labs drawn once a week since his numbers have stayed so good. That also means we're only going to the hospital once a week for labs, check-up, IVIG, as well as central line dressing and cap changes. It's nice to get all of this done in one day, and it also means no home health visits for now.

From a developmental standpoint he's doing pretty well: he sits in his chair and eats whatever we put in front of him (though zucchini did NOT go over well yesterday...), he smiles, makes lots of noise, reaches for toys and people, cries when forced to take his oral medications (UGH!), and apart from not crawling or standing yet (ok, I haven't given him enough "floor time"...) he's on track, and we are very pleased.

*Jamison continues to adjust to being a big brother. He still loves doing puzzles, playing cars, building with blocks, reading, and constantly asks, "When can I be loud?" His speech is continuing to become more understandable, and he's not pronouncing his "s" sounds at the beginning of words - so he can ask for the "swiffer," not the " 'wiffer" when he wants to help sweep up the kitchen floor. :) He really is a great little helper, and is really a sweet little boy. When I was stressed this afternoon he said, "I need to rub your back," then ran to get the "Happy Massager" and proceeded to use it on my back for a few minutes. Of course he also wanted to brush my hair, which - I've learned the hard way - can be a little less relaxing!

*I am trying to figure out how to get everything done, and still have the emotional energy to really care for my family. Some days are better than others. Yesterday I steam-cleaned the kitchen and bathroom floors, washed all Nathanael's oral syringes (yes, that's a whole task...we must have over 100 of them...), did laundry, made meatloaf, and played with the boys. I was exhausted. Today I accomplished a lot less. Of course the minimum is to get the boys fed, give Nathanael all of his meds, keep them clean (well, change Nathanael's diaper and help Jamison on the toilet for #2), and spend some time playing with each of them. Oh, did I mention dinner? Ugh. So please pray that I would prioritize well and make good use of my time and energy.

*Brad is also keeping really busy with work and helping around the house. He's still handling all the grocery shopping for now, and continues to help with cooking and dishes, cleaning the kitchen, Jamison's bathtime, laundry, and whatever else isn't done by the end of the day so we can start the whole process over again in the morning. He also takes his day off on Mondays so he can spend the day with Jamison while Nathanael and I spend the day at the hospital. It would be nice to have a day together at home, but for now we'll take whatever time we can have as a family.

We are so thankful to be home together again, but still need your prayers for continued good health, for Nathanael's continued recovery, and for us to find what works best for us in our current situation. Since Nathanael is still on steroids (immune suppression) we want to be very careful to limit his exposure to the germs of others, but Jamison and I need some social time as well...I guess that'll be another post, since it's getting late and sleep is calling!

Please also pray for our friend LB whose transplant was delayed due to some complications. Pray for her counts to stabilize, for a quick recovery, for strength, and for her family as they come around her for continued support.

Gratefully,
Bree

Settling in at home (by Bree)

It's SO GOOD to be home! I wanted to share a few pictures with you of life all together. The first one shows the boys at the table after a meal. Nathanael has become a lot more interested in sitting in his booster seat and feeding himself. In the past two weeks he has eaten green beans, sweet potatoes, butternut squash, rice, yogurt, banana and pretzels. He still doesn't really enjoy it when I try to spoon-feed him, but he LOVES to use a spoon - or his fingers! - by himself.

One day after lunch Jamison wanted to play with his cows and sheep - as well as his jungle animals! - on the table...so cute!

Some of these pictures are from my two-week stint at home in April, so I'll post more recent ones in a few days. Joyce and I have been keeping busy unpacking, organizing and cleaning. It's great to have her help!

So these are the smiles that light up my day... and here's one of the sad faces that makes me sad...

When you pray for us, please pray that we would spend our days together in creative, fun activity and work. Being home so much of the time - and with so many restrictions - is not easy, but it keeps Nathanael as safe as possible. Please also pray for our weekly schedule, including our hospital day (hopefully only one day a week!) and home health visit, as well as medication delivery. Many details need to be coordinated, and I sometimes get tired of dealing with them. Also, please pray that we'll find ways to be a blessing to those around us, even those we can't see in person. Thanks for continuing to stand with us!

P.S. Regarding Nathanael's autoimmune hemolytic anemia, his labs show that he is still stable, and does not need a blood transfusion, which is great news!