Merry Christmas 2010

Merry Christmas from the Banks family!

We pray that you rejoice with us as we celebrate God's goodness in so many ways. Our hope in Christ has given us strength to get through a challenging year following Nathanael's cord blood transplant last fall. We feel blessed to have two precious boys in our lives, one healthy and the other moving towards health, as we finally share our first Christmas together as a family! May you and your family know His love in this season and in the coming year.

Brad, Bree, Jamison & Nathanael

Photo captions:

Jamison, at 3.5 years old, loves his role as big brother

Nathanael at 14 months, after the removal of his central lines

Caption from the family picture:

Transplant = $750,000

Homes in 2 states = $25,000

Being together = PRICELESS

Birth Announcement (a year late!)

So now that our precious little boy is 16 months old I'm finally sending out birth announcements! I'm also posting it here and on FB. Hope you enjoy the beautiful pictures by Kay McIntire of KM Digital Images. More of her work can be seen here:

http://kmdigitalimages.com/

I also realized that Friday, December 17 was exactly one year after Nathanael was discharged from the hospital (after more than 5 weeks inpatient for transplant) - what a great day!

Just in case the text is hard to read, it says:
Share in our joy as we welcome
Nathanael Zachary
August 19, 2009
8 lbs, 7 oz, 20 inches
Brad, Bree & Jamison Banks
"When Jesus saw Nathanael approaching, He said of him, "Behold, a true Israelite in whom there is no deceit." - John 1:47

Our friend Jackson

We are so thankful for some friends who were introduced to us shortly after Nathanael's birth. Their son, Jackson, has a rare immune deficiency disease as well, and had a bone marrow transplant in March. Since we have kept the boys so isolated, our doctors (we see the same ones here in Dallas) agreed that having them play together would be fine, so in early November we set up a time for them to come over to play. (Of course, Nathanael was only a spectator...)




I was still pretty nervous that something would go wrong, that we'd share germs with Jackson and he'd get sick...so I steam cleaned the furniture and the floors, sanitized some toys, and prayed. Of course, as soon as the boys got comfortable playing with cars in the living room, off they ran to Jamison's (uncleaned) room full of (uncleaned) stuffed toys, and they both came back with lots of "furry friends" in their arms...I was horrified, and they had so much fun! The animals played games together, and eventually they were abandoned in favor of a pillow fight on our bed! We also played outside together. The boys were thrilled to play together, and Melissa and I were so thankful that despite their extended isolation, both boys had retained/learned enough to handle themselves appropriately. God's grace was clearly evident.

While I was worried about Jackson before he came over, I noticed that he washed his hands often, didn't put things in his mouth, and was great about only playing with Jamison. At 3 years old he's very verbal, and has an INCREDIBLE understanding of his condition, the "rules" (he wears a mask and hat when outdoors), so I understood why Melissa was comfortable with his being here...even playing with Jamison's toys. He is also farther along in his recovery than Nathanael, so that set my mind at ease as well. One of the challenges of Nathanael's age is that he doesn't "get it" and can't understand why things happen. Jackson showed us his central line and g-tube button, and told us that he got medicines through them...what a great attitude!

Of course, it was such a blessing to me to be able to talk with Melissa. She has an in-depth understanding of our situation and is incredibly compassionate. I love all of my friends, and am grateful for all of you who pray for us, but (thankfully) so few of our friends know what this road has been like, that it's a great comfort to share it with someone who also shares your faith, can laugh and cry with you, and can understand the unique challenges we've faced this year. We do hope to have both families together again soon.

It was such a great day all-around. Of course Nathanael was an observer of all the fun, both from his exersaucer and his booster seat, but that didn't bother him, and the benefit to the rest of us was well worthwhile.

Please pray for Jackson and his family, as he continues to recover from his transplant. We praise God with them for his continued good health, and look forward to lots more fun together!

Out of the frying pan...

I wrote the title of this post almost a year ago, and I had no idea how true it would prove to be. At the time I had just been told by the nurse in charge of discharging transplant patients that we would be sent home before Christmas. (I've said it before, but it bears repeating that in the BMT world, NOTHING is certain until it actually happens...) Nevertheless, around that time we were planning to go "home" to the apartment in Cincinnati after almost 6 weeks in the hospital. It was scary for me, as I knew that I would become Nathanael's primary caregiver and would have to give IV meds, milk and meds via the NG tube, and would have to carefully watch him for any signs of illness or infection. It felt like an impossible task, and I even created a spreadsheet for myself to use as a reminder of everything we had to do (and so we could write it down so we didn't forget that we had done it!). I was glad that my mom was going to be with me, but I still had no idea that I'd learn to do so many things, and would become so comfortable with them.

What I had no idea about at the time was that it in a year we might possibly feel like we had made almost no progress. Well...it's not really true that we've made no progress, but it often FEELS that way, since we still live in isolation, we still give oral meds 3x daily, and we still obsessively wipe and clean anything that Nathanael is going to touch. It breaks my heart to hear Jamison tell me that he's sanitizing his hands (3x in 10 min the other day) to keep Nathanael from getting sick, but that's such a big part of his world...and I'm not sure how it can be any different right now. Yes, the central lines are gone, and we've stopped some meds, but then we added some to our home routine that used to be done at the hospital. And it feels like we're always on the brink of another inpatient stay. Ugh!

Several months ago Brad asked me if he thought we'd all be in church together for Christmas. I think I laughed at him. That wasn't very nice of me, but it seemed so unrealistic, and I couldn't even dare to hope for that. Now I think I'd just like to get to church together NEXT Christmas. Yes, we were told 1-2 years for the rebuilding of a healthy immune system, but we're ready to be done with this ordeal NOW. Out of the frying pan into the fire, indeed.

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!

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!

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!

Halloween 2010

Here are a few pictures from Halloween...in 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. :)

Nathanael talking and playing

Vent: I just needed to share this...

Okay, I noticed that in the last several days it helped me to share some of my frustrations with friends who understand our situation and some of its limitations. I'm sharing this now to make myself feel better, and to give a glimpse of our daily ups and downs to others who pray for us and want to understand. So here goes...

In Cincinnati we have one lead doctor, a nurse-practitioner, and a nurse coordinator who help us communicate with that doctor. Of course she is backed up by an excellent team of other doctors, and there are other wonderful NPs and nurses, as well as child-life specialists, social workers, a speech pathologist, nutritionists, etc. Every time we went in for clinic or infusion visits we were seen by a doctor - many times someone else, as our doctor travels internationally on a regular basis. One of my favorite doctors was a hematologist who always wanted to take Nathanael home with her! We also had great experiences with other teams: the pain team docs and nurses, the CVC (central venous catheter) team nurses, the lactation nurses, the pharmacists, radiologists, and many others. They all answered to our doctor, who is both an immunologist AND a blood/marrow transplant specialist, and who handles MANY transplants for children with rare immune deficiency diseases.

Here in Dallas we have a BMT doctor in the Center for Cancer and Blood Disorders, a nurse coordinator, and a team of residents/fellows/nurse practitioners. We also have an immunologist (in the Outpatient Pavilion) who has another nurse coordinator and a team of nurse practitioners. Additionally we have now been referred to a dermatologist (outside the hospital), a team of endocrinologists (inside the hospital), and a general surgeon (who handled the surgery a few weeks ago), as well as the team in Special Procedures, where immunology patients go to get infusions. What's difficult for me right now is that I feel like we have a team with no quarterback...so I end up taking the snap every time. What's the problem, you may ask? I AM NOT A MEDICAL PROFESSIONAL!!!

I realize that our situation may have been complicated by our choice to have the transplant done somewhere else, but I still have no regrets about that choice. I recently found something on the website of a family whose sons had bone marrow transplants at Cincinnati Children's (our visits overlapped a little last year, though I didn't know the family personally), and after losing both sons to the same rare disease they have started a foundation in memory of their boys. Their story is gut-wrenching (get the tissues if you plan to check out their site), but the description of their decision to start fund-raising for an outpatient housing area for transplant patients at CCHMC really sums up much of what we love about the hospital. Below is the link:

http://www.matthewandandrew.org/why-cincinnati-childrens.html

"In addition to the knowledge, we thought the team approach to rounds was extremely important and helped reduce the rate of error. By having a doctor from each discipline present, everyone was able to discuss the issues, concerns and plan for each day. Daily rounds typically consisted of between 12-15 people."

Here are two quotes they used from the CCHMC websit that really stood out to me:

"Our multidisciplinary team has performed more than 1,300 transplants in the program’s 20-year history - currently about 80 children each year. In 2009, our experts performed 93 transplants- making us one of the largest programs in the United States."



"The immune deficiency and histiocytosis team at Cincinnati Children’s treats patients with more than 80 different kinds of immune deficiency and histiocytic disorders. Our physicians have developed treatment regimens that improve survival and are now the international standard of care. These specialists manage each stage of patient care, from immunologic testing to bone marrow transplant, if needed."

http://www.cincinnatichildrens.org/svc/alpha/c/cancer-blood/bone-marrow/default.htm

Having said all that, I do understand that it must be a challenge to be the "caretaker" doctor for someone whose lead doctor is out-of-state, and not available for questions. When I call Cincinnati I almost always talk to the BMT/Immunology Nurse Coordinator (I should have his number on speed-dial by now!) and if he's not around I call our nurse practitioner. They both have access to our doctor, and ask her all the questions they can't answer for me themselves. However, everyone involved in the situation presumably agreed to their assigned role, and I thought that also meant they agreed to communicate with the others involved in Nathanael's care.

If you're still with me, thanks for listening! I don't expect everything to be easy, but there are challenges to our current situation that are different than I had expected...and it helps me to share this with friends so I don't feel so alone.

Bree

Who is that masked man?

He's looking for places to "pounce"... Anyone want to open their door to a praying mantis before too many other kids are out on Sunday night? Drop me a note to let me know if you're in McKinney and are interested. We'd like to get him out a little bit and he'd love to show off his costume for some friends. :)

breebanks@earthlink.net

No more heparin syringes in my diaper bag!

This afternoon the house is quiet...what a treat! Since the boys are all fast asleep and it's storming outside, I decided to work and clean in the kitchen. I threw in a load of laundry, washed a bunch of Nathanael's toys, and then decided to organize and consolidate medical supplies.

Now, you know that it's been just over two weeks since Nathanael's line-removal surgery, but it just hit me today: I no longer need to carry heparin syringes in my diaper bag! :) This is one more step towards becoming a more "normal" mom. (Please note that the word normal is in quotes... that's on purpose since I know that normalcy is a relative concept.) For me this is a lot like the time following my second surgery in 2002 when I stopped carrying Neurontin and Oxycontin in my purse: I felt "normal" again. (I'm pretty sure most of my friends don't carry narcotics around, just as they don't carry heparin.)

Don't get me wrong. I feel like I had adjusted to our "new normal" and had learned to be prepared, with Central Venous Catheter emergency kits in our cars and in the house, with heparin and saline syringes with me in case I needed to flush Nathanael's lines while waiting to see the doctor. I even carried Duoderm (extra thin skin protectant) and Hypafix (flexible tape) for when he had an NG tube, as those were the most helpful things we found to keep it in place. I'm just thankful that these things are no longer part of our life. (Well, we could possibly use an NG tube again, but unless he gets sick it's not very likely.)

So today I am thankful that the Lord has closed the chapter that included my little boy having tubes in his chest. We still have a long way to go towards recovery - in many ways - but this is progress.

Oh, and do y'all know anyone who needs 27 syringes with 3mLs of 10u/mL heparin? They don't expire until 2012.

First "real" bath in 11 months!

Here are a few pictures from the past week:

The day before surgery (10/6/10 - with the extra dressing covering the end of the red/left line after it seemed to rupture/break):

In the hospital: isn't the gown just too cute on him?














A few days later, during his first "real" bath in 11 months! (Yes, apart from once when he made such a mess that I HAD to cover his chest with plastic wrap and clean his legs and bottom in a small tub of water, this really was the first time he's ever been allowed to just sit in water and play!) So he's not exactly in a bathtub yet, but this is better than sponge-bathing, which has been necessary in order to protect those dressings on his chest all these months.

These pictures are funny to me because of the way he put his foot up on the edge - he does that in his booster chair too, and he also puts his right foot up in the air when he nurses...it's really funny!

Here he is showing off his chest - not even a single stitch! (No stitches were used - the lines were so small that the surgeon just let the skin heal without them, and they're now just small scabs.)


Jamison wasn't really too interested in the whole thing, but he LOVES to sit around in his bathrobe after taking a bath. Someday the boys will splash together in the bathtub, but for now this is a significant improvement!

Lines are out! Let the fun begin!

Thank you for praying for us this morning! Though I was quite nervous, all went very well this morning, from getting up and being on time for our 7:15am check-in, to having BOTH procedures done at once, despite the fact that only one was scheduled, to Nathanael waking up quickly and feeling pretty good immediately after surgery. God blessed us in many ways today and we are very grateful.

Please do continue to pray for Nathanael in the next several days as his incision and line-openings heal. We need to change his diapers as soon as they're wet (and especially if they're dirty!) in order to promote healing and prevent infection. Now all that's left on his chest are a few band-aids covering the holes where those lines went in...no stitches were used! In fact, once his incision and openings heal we can even put him in a real bath and let him splash!!! :)

Thanks again for keeping us covered in prayer today,

Bree

Pull those lines!

Just an update, for those of you who know how much I am tired of those central lines in Nathanael's chest...please pray for our family tomorrow:

Nathanael's central-line-removal surgery has been rescheduled for tomorrow. I'm pretty sure that one of his lines split this morning while I was flushing it, and I was pretty scared. (I've done this almost every day since January, most days I can do it without thinking much...but today once it happened my hands were shaking.) After hours on the phone with our nurse-coordinators both here and in Cincinnati (also trying to set up consults with a dermatologist and an endocrinologist) I heard back from a surgeon who was willing to do the surgery tomorrow morning while he's on call. This is a blessing, as it needed to be done soon (it had been scheduled for 10/15), now we can go ahead with his immune globulin treatment on Monday (which we would have needed to postpone), and I didn't have to drag both boys in to the hospital today to have the nurse check the line.

Please pray that I would get up on time to leave by 6:00am, that Nathanael would go back to sleep in his car-seat, and would sleep until he gets into the OR, as he'll have to fast after midnight (and it's easier not to eat when you're asleep!), that we would not encounter germs as we enter the general surgery area, and that all the doctors and nurses would be especially cautious because of his lack of an immune system, AND especially that the surgery (line removal and circumcision) - and his recovery - would go smoothly. Oh, and please pray for Brad, Jamison and I, and praise God with us that after 11 months these lines will no longer be part of our lives! :)

Sorry for all the details...but I wanted to share how to pray/praise specifically. Thanks for praying with us!

Bree

Day +300 and nothing new to report...

So, here we are...300 days post-transplant. Not like that's supposed to be a big milestone, but I think when we started this journey 13 months ago we thought we'd be farther along by this time. Doctors say that it takes 1-2 years to rebuild an immune system, and in the past 200 days or so we've learned why: setbacks.

By all accounts Nathanael sailed through his first 100 days, but after that things got a little more complicated. His central line infection (in March) put us back in the hospital for 2 weeks (and on heavy antibiotics and high-dose steriods - which needed to be weaned over 12 weeks). His bout with autoimmune hemolytic anemia kept us in Cincinnati for a month instead of a week, and put him not only on steriods again, but also on retuximab (which supressed the growth of his B-cells, an important part of the immune system). His two urinary tract infections in the past month have put us in the hospital twice (again on heavy antibiotics...at least we're not on high-dose IV steriods anymore!), we've seen his weight fluctuate, and have had to use an NG tube again for a few weeks. Now we're at home, but still giving IV antibiotics (Gentamiacin - at least it's Q24hrs, instead of Q6 or 8!) for another two days. We're also facing a VCUG test to make sure that he's not experiencing any kidney reflux that could be causing these UTIs. Any time a catheter is inserted (as was done for urine collection, and will be done fpr the test) we run the risk that he'll get an infection, so I'm not thrilled about this. We also need to get a surgery date for circumcision and central line removal. (Part of the issue here is that before his lines are removed we need to test out a new form of immune globulin to make sure he tolerates it well. If he doesn't, then we'll have a port put in his chest, but if he does, he can be free of lines!)

So those are a few of our setbacks, but another result of all that is that Nathanael still takes between 8 and 13 oral medications each day (some of them 2x and some 3x daily). Giving them is stressful for all of us (I think it's even hard on Jamison to watch...) as it seems like some awful kind of torture. Despite all my best efforts, the most effective method I've found is to lay Nathanael in my lap, squirt medicine in his mouth, and pinch his nose so when he cries he is forced to swallow. UGH! Yes, I've tried blowing in his face, tickling/kissing him, putting it into the side/back of his mouth, distracting him with Daddy/TV/big brother, hiding it in some of my milk...you name it, we've tried it. I may resort to putting an NG tube back before too long. It stinks for my baby to have another tube in him, but giving meds becomes EASY with it in. Even checking placement (a little bit of an irritation) is pretty simple - just get me my stethascope and a clean, empty syringe...all I need to hear is a little "pop" of air in his tummy. So because most of these medications are given to prevent illness/infection, he will need to take them until his T and B cells grow, which could be MANY more months.

Last year I met a woman who spent day +365 back in the hospital with her son, and I was so sad for her. She had been so kind to me on my first day inpatient with Nathanael, and I couldn't imagine being that far post-transplant and having to go back into the hospital, but at this point it actually seems feasible. This really has been a much more difficult journey than I had imagined. I now realize how little I knew about this from when Jeff had his transplant...so much has changed. It does make me see how God had protected my brother though. How else could he have survived having two older siblings in school, bringing home germs every day? What about the possibility of GVHd with all of the sun exposure? (Or was it just God's providence that we lived in northeast Ohio, where they get fewer days of sun than the pacific northwest?)

So, apart from all of that, Nathanael is a pretty happy little boy. He is quickly becoming more mobile now that he feels better. He is starting to try out an "army crawl" and today reached the edge of his blanket on the floor and grabbed hold of some of Jamison's (large) puzzle pieces. (Of course, I quickly grabbed the pieces and wiped his hands with Wet Ones - away with the germs!) He LOVES to watch his big brother, and he is interested in everything around him. He has started to eat solid foods again (he really liked the mac n cheese in the hospital!), and is now taking sippy cups with both spouts and straws.

Jamison is becoming more and more independent...just ask my mom, who just spent a week with him! He wants to do everything himself, and sometimes that wears me out, and sometimes it warms my heart. He has been asking us recently, "Teach me to pray" so his most common prayer these days is "Dear Jesus, thank you for this day, thank you for this food (yes, even at naptime!), thank you for ______ (loving us, for Nannie getting home safely, etc.). Please give us a good day (or night's sleep), and please use us to glorify your name. In Jesus' name, Amen!" It is so sweet! Of course, what's NOT so sweet is when you want to pray something else and he throws a fit. Sequence is very important to him, so he likes things in the same order each time. And he is very proud that he's growing up into a big boy. He likes to talk about how someday he will grow big enough to reach the ceiling. We just keep reminding him how tall we are, and that someday he'll be as tall as (and hopefully taller than!) we are! ;)

I thought you'd enjoy a few recent pictures of the boys. I'll post some videos later this week, and I've been meaning to find some one-year-old pictures of each of them to post side-by-side...I'd like to see the similiarities and differences, and it would be fun to see how much Jamison has grown.

Please do keep us in prayer, as it's so easy to get discouraged these days. Pray for opportunities for Jamison to play with other kids and to learn to share, for Nathanael to continue to recover and stay healthy, for him to respond well to his new medication, and for the right date for surgery, for Brad and I to be focused on the Lord and caring for our family, and for God to use us in some way to bring glory to Himself through all of this. Thank you for standing with us!

Happy Birthday Nathanael!

Happy Birthday Nathanael!

Since we spent Nathanael's first birthday (August 19) in the hospital we didn't really celebrate at home until later. However, the Child Life staff in the Hematology/Oncology unit made a wonderful banner and put it up in our room (it's now in our living room!) and brought gifts! They offered him a cake, but I decided against ordering a sheet cake for him, as I didn't want to eat it all myself!

So when we finally sat down to open some presents Jamison was more excited about it than Nathanael, but I thought I'd try to chronicle the present-opening. After thoroughly washing Jamison's hands I asked him to help his little brother...and it was so sweet!

While we were at the hospital Brad and Jamison enjoyed a visit with PopPop David and Valerie, and we enjoyed a short visit (and some clean laundry!) when they came down to the hospital. :) Hopefully next time we get together we'll all be in the same place at the same time, and we'll get to celebrate at least one family birthday together!

Okay, so I tried to upload some cute videos, but I'm not sure if they'll work, and I'm having trouble (could be browser-related), so I'll probably try again in a few days. Hope you enjoy the pictures though!

d