What do I need now?

Okay, so here's my newest challenge: clear, meaningful communication. Those of you who know me well know that I can use LOTS of words and STILL not communicate a clear message, so this post is an attempt to answer what some of you may be thinking, and in the process to clarify how people can continue to support us as we walk through this phase of our journey. I'll even use bold type to make sure it's clear. :)

I need conversation. I need people to call me. It can be really hard for me to call people, and it's pretty easy for Jamison and Nathanael to take up my whole day...but I need to talk about something other than dinosaurs, volcanoes, Disney characters, and what one animal said to the others. Don't get me wrong - I'm thrilled that Jamison loves to talk to me, and I love that he's so curious about things (He asked me the other day if God could move an active volcano, and when I told him that He could move it into the sea if he wanted to Jamison answered with, "Wouldn't the fire burn up the water?" He was referring to my favorite OT story in his children's Bible where Elijah prays on Mt. Carmel and the fire burns up the whole alter and all the water around it. I LOVE that he thinks that way!) BUT I still need to talk to friends about life, parenting, work, sports...whatever. I do also like to talk about Nathanael's treatment, doctor visits, medications, and how both boys are doing in general.

I need help cleaning and organizing. Because the vast majority of our time (well, mine, Jamison's and Nathanael's) is spent in our house, I am finding that there is a lot of work to be done here to create a calm, relaxing environment. Keeping a clean, organized home has never been my strong suit, and I could use help finding things that work for me. Of course, Brad and I both have moms who are naturally clean and neat, and are great at these things, but only so much can get done during their visits, and then I still have trouble keeping up with the systems set in place. A good friend recently lent me a book on organizing, and I subscribe to FlyLady.com, which would be really helpful if I had a way to check email throughout the day for the cleaning reminders.

As a side note, we can have people in the house, but I like to know that whoever is coming over is healthy, that the members of their household are healthy, and then I have them remove their shoes, wash their hands, sit on a sheet on the furniture, and keep their distance from Nathanael. Everything we can do to limit the introduction of new germs into our home (including pet dander) makes it easier to keep the boys healthy.

I need help with random errands. This one occurred to me today when I realized that I have LOTS of plastic bags to be recycled, but I rarely get to a place where I can recycle them. And even though I could get the boys in the car and drive to the store I can't get out and leave them in the car while I run in to drop off the bags. Ugh! Also things like dropping off dry-cleaning, making photocopies of various paperwork for applications for programs like the Medically Dependent Children's Program (MDCP) and mailing things through the post office or FedEx/UPS would be really helpful. Most of these things are rare, but tend to pile up since I can't do them without help.


I need understanding, or compassion, even in the face of confusion. This one must be the most difficult, but I had to at least mention it. I know that many of my friends will not get what it's like to be in my shoes now, and to many my self-imposed restrictions may not make sense at all. However, please consider that everything we do is geared towards protecting the health of our boys, and keeping our family together. With that in mind, I wash my hands MANY times a day (more than I can count, I'm sure) and limit contact between the boys, wash any toys, clothes, burp cloths, etc. that hit the floor before Nathanael can touch them again, change my clothes (and Jamison's) after we play or work outside or in the garage before re-entering the house and sitting on the furniture...ALL so that we limit Nathanael's exposure to new germs. I tell Jamison that we want Nathanael to stay healthy because it helps his recovery, but also because it allows our family to stay together, rather than two of us having to go back to the hospital. I pray that it doesn't scar him (no, that's not a typo...I meant "scar" not "scare") for life, but I feel like I need to be honest with him and to motivate him with something that's not only in Nathanael's best interest, but in his interest as well.


Where is Nathanael in the recovery process?

*He does not take any more IV medications at home! (I do have to flush his central lines daily.)
*He takes 10-12 oral medications each morning and night, and one around 3pm daily. It normally takes me around 30 minutes to get them ready, and an hour or so to give them.
*Most of his labs (drawn every time we see the doctor) look normal, BUT he still has not started to make B cells, and has very few T cells (specialized lymphocytes that play an important role in the immune system). His recovery was set back by the treatment of his autoimmune hemolytic anemia in May.
*If all continues to go well, we expect that in 6-12 months he will have T and B cells, and at that point we'll probably start to expose him to more germs and allow him to be around other people.
*We are moving towards having both central lines removed from his chest, hopefully later this month. That means that one medication will have to be given weekly at home, using small needles and an infusion pump. I never wanted to have to stick my baby with needles, but I'm sure the parents of diabetic kids say the same thing. It would be so good for him to not have those lines anymore though, and to not have to have a port-a-cath in his chest would be nice.

*Both doctors have agreed that we can start to allow Jamison to be around other kids, but only in very controlled situations, and not in places like church. (Feel free to contact me if you're interested in a playdate! I'll have to work around Brad's schedule so he can stay with Nathanael, but Jamison and I would LOVE to get out!)

And why can't I get out more? I'd LOVE to, but at this point it's still difficult for Brad to handle Nathanael (and keep him from pulling on his central lines during diaper changes!), I want to be home when Brad is home (since we don't have a lot of time when all four of us are together), and by the time he gets home in the evening we need to eat dinner, prepare the medicine tray, get Jamison bathed and ready for bed, give Nathanael his medications (which can take anywhere from 30-90 minutes these days) and then collapse into a pile and fall asleep. That takes me from about 5 or 6pm to 10pm or so each day. Afternoon nap time is a time when I can sometimes get out, but that can only really happen on a Sunday (when Brad doesn't have a meeting), or on his day off when I'm not at the hospital with Nathanael. At this point I'm not really comfortable asking someone else to care for the boys during the day, as those central lines in Nathanael's chest still can make ME nervous after 9 months. Oh, and the other major factor for me is that Nathanael still breastfeeds about 6-7 times a day (yes, that is by choice!) and we're not working on weaning in any formal sense of the word. He can drink from a cup, and when he feels good he eats plenty of solid table food (low bacteria only), but when he feels sick he reverts back to a milk-only diet, which he has done for the past couple of weeks.

So I guess I'm asking here that friends would try to put themselves in my shoes: What would you do if every misstep could cost your child his health? How cautious would you be if you knew that your small risks taken for personal gain could land him back in the hospital, pumped full of more medications, setting back his recovery by weeks, or even months? I loved seeing my family in August, but when I thought that he had developed respiratory problems as a result of staying in an old hotel room with very poor air quality I was devastated, and began to blame myself for sacrificing his health for my needs. (As it turned out, he was hospitalized for a urinary tract infection (UTI), and his lungs sound clear (though if he did ingest a mold or fungus we might not see any signs of a problem right away...it could take months to surface.) It is possible that he was irritated by something which caused the coughing.) But having spent many weeks in the hospital (about 9 in the past 9 months), and having talked with many other parents, I know enough to know that each small risk can be costly. I ask each day for Jesus to help me trust Him, and then I live, in whatever way I can, to take care of my family.

Okay, so I just re-read that last part, and while it sounds a little morbid, and more than a little paranoid, but I don't think it's an exaggeration. However, I know that it can also hold true for healthy kids...there's just not such a great risk with exposure to everyday germs and other people.


Most importantly, I need continued prayer. I am exhausted pretty often, overwhelmed by the responsibility of caring for both of my boys, and in need of spiritual refreshment, support, encouragement and a listening ear. In the hospital it's easy to not feel as lonely, because your community is all around you. I used to tell the nurses and social workers that they were my cheerleaders. While in the hospital in Cincinnati we parents would talk in the family lounge, which was helpful. But I haven't been to a church worship service since last year, and miss that time, as well as the fellowship that goes with it. A good friend gave me a copy of "Jesus Calling" by Sarah Young, and that devotional has been incredibly helpful, but it still seems to me that my faith is stagnant rather than growing during this time. Please pray for me, and for my family.


Congratulations if you stayed with me through this long post! I realize it's a lot less clear than I would like it to be, but honestly, I don't have the time or mental energy to edit it, so I'm going to accept that it's far from perfect, and post it anyway. So I welcome your questions or comments, as I also appreciate your friendship and support throughout this journey.

Bree

Pictures

I'd love to write about the past month, but in the meantime, here are a few pictures:

What a trip!

So, we made it! In early August we went to Cincinnati for Nathanael's 9-month-post-transplant check-up. His doctor was thrilled with his progress, his blood counts looked great, his skin looked clear, and all his virus tests were negative again. They did warn us again about the dangers of sun exposure, so I really need to start using sunscreen even for car rides, and even when I plan to keep Nathanael completely shaded or covered. Any sun exposure at all (for now, at least) puts him at risk for Graft vs. Host disease (GVHD), which can lead to all sorts of problems. Even for years to come, long after his immune system is working and he's out playing with other kids, we will still need to be diligent about protection from the sun, but really, all little kids need to be protected from sunburn to reduce their chances of developing skin cancer later in life (yes...this is a public service announcement...), so it's really just a matter of making it a priority all the time.

We enjoyed our stay with a friend, spent some time swimming in her pool, and then spent the weekend with my family for Jeff and Julie's wedding. It was great to see my parents, my brothers and their wives, and my cousins...I was just sad that we needed to keep Jamison away from everyone too. Of course, I knew Nathanael would need to stay in the hotel room, but I wished that Jamison could have been out playing with his cousins.

Our drive up took over 19 hours, and we found that driving overnight was not as good an idea as it had sounded when we discussed it. In fact, both boys were awake from 1am to 5am, which made for a much less peaceful time (and less sleep for me) than we had anticipated.

Our drive home took 23.5 hours (UGH!) and included several phone calls to the on-call doctors at both of our hospitals, as Nathanael developed a cough (and some gagging) that concerned us, AND included a punctured tire at 1am in rural northeast Arkansas (Prarie County, to be exact). We were just so thankful to finally get home, as I did NOT want to take him into a hospital where we didn't know how things worked. I get nervous enough when someone I KNOW has to access his central line, let alone someone I've never met! God provided for us in lots of ways, and gave us a few interesting stories that have already made their way into some of Brad's messages... ;)

So this is only a fraction of what I had wanted to post when we first arrived home, but a lot has happened since then...so I'll write more later. Thanks for checking on us, and for keeping us in prayer!

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!