Joy Inexpressible (by Brad)

Good evening from Cincinnati, Ohio. I know that many of you have been curious as to what it was like when we finally got to see each other after 3 and a half months apart. It was good. So, how about all that snow?

But seriously...it is funny to me that I can say that about the snow and people from both Dallas and Cincinnati can relate. It's like the stuff followed us here. Bree will post the whole thing from her point of view but I thought that since I was the first who had free time, I thought I'd try and convey what it was like more for Jamison than for me, or at least what I saw Jamison experience.

The snow thing is goofy. The day before we left to drive the 14 hours from McKinney to Cincinnati, more than a foot of snow landed in North Texas. I couldn't believe it. It started snowing well before daybreak and didn't stop for over 24 hours. For Dallasites, that's not a snowstorm, that's the apocalypse. I wondered for a second if God was trying to tell me something about our impending trip. Leave it to me to make a once-every-30 years snowstorm about me. Two days after we got here, Cincinnati was inundated with 9 inches of its own.

Driving for 14 hours with a 3 year old is not a one day trip. We broke it into two days, stopping halfway in Memphis. Hats off to Paul Rasmussen who not only shared in the driving but patiently endured Jamison's constant queries of what was inside each and every semi-trailer that we passed on the highway.

I didn't sleep much on the overnight. The bed in the hotel was a little high off the ground and knowing my boy is an aggressive sleeper I didn't want him falling off so I basically stood vigil all night. It was a good thing I did. Somewhere around 3:00 AM, he had turned around completely and rolled several times reaching the foot of the bed before I picked him up and carried him back to the head of the bed.

All of that is to say that on Saturday, I was exhausted and by the time we were crossing the Ohio River, I was operating solely on adrenaline. After dropping Paul off with Craig Knisley, who with his wife Niki, attended Faith Bible while in seminary, we drove to the apartment.

I honestly have to say that emotionally, it didn't hit me until those last 10 minutes or so. I'd held our departure loosely knowing that any of a number of factors could delay our leaving McKinney. I did my best to focus on the task at hand while we drove across Texas, Arkansas, Tennessee, and Kentucky. However, as we drove those last few miles, it all hit me at once. I got very tired and nervous only because I didn't know how Jamison would handle seeing his mom after all these weeks. I had flashbacks of what it had been like to leave at the end of October, to drive out of the parking garage, and strangely, I got sick to my stomach.

As we drove up, I asked him if he remembered the apartment complex. He said yes. We pulled into the parking spot and I asked him to tell me which building it was and he got it right and when I looked at him, I noticed a big grin on his face. We walked into the building and, truthfully, the smile never left. I asked him what apartment it was and he remembered. When we were here in October, we'd used that hallway to do a little running and so it didn't surprise me when he started to run. We stopped at the door and I got ready to open it but Bree took care of that. It flung open and she scooped him up into her arms. He smiled and giggled and didn't seem to care that mom had tears in her eyes. He just kept talking and talking and explored our small apartment. He found his bed and the stuffed alligator that we'd left here and did nothing but talk to his mommy. I was able to hold it together until I saw Nathanael. My youngest son had just changed so much since I last saw him and Skype for all it's worth didn't do those changes justice.

To say that it feels good to be together again is to surrender to the fact that the English language doesn't have the words but really it's just one more chapter closed in this ongoing saga that would have made some great reality television. I've discovered that Nathanael's health regimen is intense as far as what has to be done when as well as the caution that needs to be exercised to protect him as much as possible from germs while his immune system continues to reboot from the transplant. We should know in a week or so what the remainder of our time here in Cincinnati looks like. Day 100 is March 3rd. That's supposed to mark the end of the critical window. For now, I'll continue to hold it all loosely. Jamison has a few things that he says often. He asks if we in fact all together again (he doesn't say "in fact"). He asks mommy if she's happy and he asks when it is that we will go home to Texas with mommy and Nathanael. Pray Lord that it will be soon.

Together! (And then apart again...)

Sorry it's been so long since our last post. As you can guess, we've been quite busy! (I started this post on February 19, and it's now March 13...)

Brad and Jamison have been working on the concepts of "apart" and "together", so it has been fun to talk about how we are all together again. He has repeatedly asked me, "Are you happy, Mommy?" to which I reply, "I am SO HAPPY that we're all together!" That makes him smile, and I just LOVE to see him smile.

Here's a picture of "Dr. Jamison" getting ready to examine a patient. :) He used his plastic animals to look in my eyes and ears after listening to my heart and lungs...what fun!

Here's Nathanael napping in one of his favorite places...and Brad wonders why it's so hard to get things done... The next picture shows Nathanael after eating some pureed peas...yummy!

Well, we were together for about two weeks before Brad headed back to Texas for a week. It was fun for all of us to be reunited, and yet a challenge to meet all the needs of both boys at the same time, as there are so many needs right now. Of course Nathanael still needs lots of medical care, and has been a little more clingy lately (sometimes he'll cry if anyone else but me holds him), and Jamison needs a lot of attention. It's not easy to balance it all.

The one of Jamison in his car seat was his "nap" after a long day at the hospital. Since Brad left for Texas on March 4, I took BOTH boys with me to the hospital on March 5, and we spent most of the day there. I was so glad that a friend could drive us there, and the hospital van and driver were available to bring us home in the afternoon. After an early morning, a picnic in the hospital room, a few videos and some books, Jamison was worn out. Both boys fell asleep in their carseats on the way home, and the driver offered to carry Jamison (still strapped in, as you can see) into the apartment. :) I got a few minutes to rest while both boys slept, and that was great!

The last picture shows Nathanael, happy with himself after he grabbed a pile of napkins off the countertop. All I did was go into the kitchen to wash my hands, and I turned around to find this! (In the background you can see the medicine tray on the kitchen counter.) Love that mischevious smile!

I tried to include a video of Jamison singing...not sure if it will work. Ugh! Anyway, if you can see/hear it, you'll hear him singing about everything in the room. Brad says it reminds him of that scene in "Anchorman" where Steve Carrell's character starts to say things like, "I love lamp. I love toaster." It's pretty cute and creative. Enjoy!

We're hoping/planning to come HOME HOME around March 25. Please pray for no illness or hospitalizations between now and then so we can come home! Jamison prayed last night that Mommy wouldn't have to go back to the hospital. It breaks my heart, but I'm praying that he'll learn and grow a lot through this experience.

They're coming to Ohio! (by Bree)

Brad sent me this picture today. He pulled out the suitcase and told Jamison about their upcoming trip to Ohio so we can all be together. Awhile later he heard the zipper on the suitcase, and Jamison seemed ready to go. When he opened it to inspect it's contents, this is what he found:

So cute!!! I love how he packed puzzles and a balloon, and no clothes!

So the good news is that they're leaving tomorow, and will arrive here on Saturday night...YAY! I can't wait to see them!!!

While we expect the rest of this journey to still be long and somewhat difficult, we are thankful that this chapter of separation is almost over. It is our prayer that the Lord would make up for the time we have lost with each other and our boys. There is a promise of restoration given to the Israelites in the Old Testament book of Joel. While my belief in the separate identities of Israel and the Church prevent me from claiming that verse as written specifically to me/us, I do believe that it is within the Lord's will to ask Him to bless us that way, and to pray accordingly, as it could most certainly be used for His glory. Here is a short passage from Joel 2:21-32:

Surely the Lord has done great things!
²¹ Don’t be afraid, my people.
Be glad now and rejoice,
for the Lord has done great things.
²² Don’t be afraid, you animals of the field,
for the wilderness pastures will soon be green.
The trees will again be filled with fruit;
fig trees and grapevines will be loaded down once more.
²³ Rejoice, you people of Jerusalem!
Rejoice in the Lord your God!
For the rain he sends demonstrates his faithfulness.
Once more the autumn rains will come,
as well as the rains of spring.
²⁴ The threshing floors will again be piled high with grain,
and the presses will overflow with new wine and olive oil.

²⁵ The Lord says, “I will give you back what you lost
to the swarming locusts, the hopping locusts,
the stripping locusts, and the cutting locusts.
It was I who sent this great destroying army against you.
²⁶ Once again you will have all the food you want,
and you will praise the Lord your God,
who does these miracles for you.
Never again will my people be disgraced.
²⁷ Then you will know that I am among my people Israel,
that I am the Lord your God, and there is no other.
Never again will my people be disgraced.

³² But everyone who calls on the name of the Lord
will be saved,
for some on Mount Zion in Jerusalem will escape,
just as the Lord has said.
These will be among the survivors
whom the Lord has called.

Happy 3rd Birthday Jamison!

Today is my big boy's third birthday! While I'm sad that I'm not there to celebrate with him, I'm hoping and planning to celebrate with him in a few weeks. We love him so much, and are so proud of him!

Here's a picture from February 2007...so precious!


The other picture is of Jamison with a cupcake after dinner tonight...so grown up! We sang and marched to the "Birthday Parade" song on his new (personalized) CD, and gave him a balloon through Skype, which delighted and amused him...until the balloon popped. Oh well...it was fun while it lasted!


Thanks to Colette for this last picture from his birthday party...and thanks to Chris & Lisa, Jeff & Ale, Jackie, Amy, and everyone else who organized his Elmo Birthday Party (and to Nana Bonnie for the idea, supplies, etc.)!

Two weeks! (by Bree)

One of my parents' favorite movies is "Money Pit", a silly 80's flick starring Tom Hanks and Shelly Long about a couple whose relationship barely survives their purchase and remodeling of a poorly-built but beautiful house. Whenever they ask the builders, who seem like shady guys, how long the project is going to take the answer is the same: "Two weeks!" Well, of course, the project drags on for months, and when it's done, it seems that so is their relationship. But the builder reminds them that no matter how much work they had to do on the house, the foundation was good, and that made everything else worthwhile, and in the end they get married, having worked through their conflicts.

So, why am I rambling about this? If I had written this post when the thought crossed my mind the other day, it would have been two weeks until Brad and Jamison's arrival here in Cincinnati, so the phrase, "Two weeks, two weeks..." keeps coming to mind. Of course, the lesson about a solid foundation is also encouraging, as we are reminded that Jesus is our foundation, and that He cannot be moved. At this point I hope that nothing sets back their departure plans, but barring any illnesses we should all be together in LESS than two weeks. YAY! That will bring to a close this chapter of our journey that will have lasted for 3 1/2 months.

I think that one thing that kept me going during those long days in November and early December was the hope that Brad and Jamison would visit us for Christmas, and then the hope that they would visit us in January, and then February. Even though the date of their visit became a moving target, it was good for me to have started this journey not knowing how long this separation would be. But now we're at less than two weeks, and we are all so excited to get back together! When I told Jamison on the phone the other day that he and Daddy were going to come to Ohio to stay with Nathanael and I, and we would all go home together, his response was something like, "Just like the zebra in Madagascar! He left home and his friends went to get him, and they all went home together!" I was sure that Brad or Joyce had made that connection for him when they'd watched the movie a week or two earlier, but after talking with them I realized that the analogy was all his own...I was so proud! He has also started asking for hugs via skype, so I know he's missing me too, and when we finally all see each other next Saturday there will be lots of hugs and plenty of tears.

Please continue to pray for us. Nathanael is doing really well, but we have not been able to decrease his tube-feedings as I had hoped we could, since the tapering of his steriods has adversely affected his appetite. Pray that he would eat well, that he would be well-hydrated, that he would nap and sleep well, and that he would continue to show no signs of Graft vs. Host disease. Pray also for his continued protection from viruses and bacteria, especially with the addition of his big brother to our household. (Kids can manage to find germs anywhere, and generally present the greatest risk to their immuno-compromised siblings.) We also want to be sure that we teach Jamison to wash his hands without creating an OCD-like pattern. We need to find some balance in all of this. :)

Visiting Friends (in the Hospital)

Well, Nathanael must have decided that he missed his friends in the BMT Unit at the hospital, because this week we spent a few days there. It started with him being a little more fussy than usual, then an unplanned visit to "day hospital", the outpatient unit for kids being treated on the Hematology/Oncology floor, and then a visit to the Emergency Department (ED, not ER anymore...) on Sunday, which culminated in our admission back to 5A North, the BMT (Blood/Marrow Transplant) Unit.

In addition to the symptoms we noticed, the doc who saw us Sunday appreciated that Nathanael's fontanelle, or soft spot, was bulging, so he ordered a head CT to rule out a brain bleed, and a spinal tap (now known as a lumbar puncture, or "LP" for short) to rule out meningitis. UGH! The CT went fine, as the little guy slept through it, but I was really scared of the LP. (As a side note, those of you who know me well know that I have a bit of a fear of nerve damage (previous experience with it has been frustrating), and had hoped to avoid epidural or spinal anesthesia for myself with both of my deliveries, and of course was unable to do so. My experience the first time was not positive, while the second time was not so bad.) HOWEVER, that's all to say that I was NOT in favor of someone sticking a needle into the spine of my baby, for fear of the damage that can occur with such procedures. I prayed silently for strength, and for the doctor to be skillful, and asked questions about the necessity of the test. After being convinced by the doctor and my husband that the test was necessary, I relaxed a bit. Nathanael handled it like a champ - he cried less than he did for the placement of his NJ (feeding) tube! The doctor took a few minutes to find a suitable place, then had an attending come in to get his assessment, and once the nurse and I held Nathanael still for the actual procedure, it was done in a matter of minutes. I was SO THANKFUL!

So the head CT and LP both came back negative, which is to say that he did not have a brain bleed or meningitis. They still decided to admit him, however, to treat him with IV antibiotics and to watch his symptoms more closely. We had noticed over the weekend that despite what we had been told about how his condition (including his behavior/personality) should have improved, he continued to be very fussy, to experience what felt to us like abdominal spasms or dry heaves, and that he was not at all interested in eating. When we called the BMT doctor on call Sunday morning he told us to come in so Nathanael could be seen, and at that time we put our overnight bag in the car (and I took a quick shower!) just in case.

So we ended up staying inpatient from Sunday night through Wednesday around 2:00pm. It wasn't too bad, as I had my mom around to bring food, to come up and watch Nathanael with me during the day, and it was less stressful than our previous experience, in most ways. It was however, tough to get sleep, difficult to have Nathanael's sleep interrupted by hospital routines, and all of a sudden I was not in control of his medications, which was simultaneously liberating and challenging. I could write more about all of this...but for the sake of time I'll cut to the chase: it's good to be back "home" in our apartment. It's lots of work to take care of a baby who needs so many medications, but I would MUCH rather keep him at home than stay in the hospital, and I am SO THANKFUL that the Lord has allowed us to get back home so quickly. Thank you for your prayers!

Oh, and as for the title of the post, it was great to see some of the friends we had made during our earlier extended stay, but we left them with a picture of him, and in the hopes that we'll just visit them sometime when we're in for the day, rather than during another inpatient stay. ;)

Jusi in case you're wonderimg, this picture was taken a home, with Nathanael's new NG tube in place...but that's another story...

The Perfect Storm

If I had written this a week ago I might have titled it "Smooth Sailing...", but this week a number of circumstances came together to create "the perfect storm" that rocked our little boat quite a bit.

We were sailing along - doing well enough that Nathanael's doctor thinks we may be able to go "home home" (to Texas) in early March instead of late March - until our little guy began to eat less and less. His labs showed that his kidney function was somewhat diminished, not enough to normally be of concern, but an issue for him because of the number of medications he still takes every day. The bottom line is that he needs adequate food (fluids) in order for his body to properly flush his kidneys. So when he went from 70+ minutes of nursing each day down to less than 40 minutes, we were obviously concerned.

So what's going on? We suspect that he's been teething for the past month, but that it has gotten much more intense in the last week. Teething often causes babies to nurse or eat less often, and for a normal infant, that's not a big deal...they'll self-regulate and eat as much as they need. However, as I mentioned above, Nathanael doesn't have the luxury of choosing not to eat and being okay. He needs to stay fully hydrated!

We also know that as the doctors wean him off the steroids he's been taking for the past 7 weeks or so his appetite will change. Steroids tend to cause an increase in appetite, so it makes sense that as he has lower levels of steroids in his system he will want to eat less often. My first thought in regards to that was that we should wean the steroids more slowly...but really, why would I want to subject my son to the effects of medications for a moment longer than the doctors deem necessary? Just because nursing is easier for me than tube-feeding? Certainly not.

Oh, and then we spent two days last week in the (outpatient) day hospital that were each 8 hours long...back to back! We normally have a day in between appointments, but the schedule this week was different. That interrupted his sleep, so he did not nap well at all on those days. While I might eat regardless of how tired I am, some people tend not to eat as much when they're tired...so that could have had an impact on his consumption this week.

So, in order to keep him hydrated we have increased the amount of milk he gets each night through his feeding tube, which in turn could cause him to be less interested in nursing. Like everything in the treatment regimen here, the goal is to find a balance between the two types of feeding. For me, this means nursing him as often as he will nurse, and also making/finding time to pump so I have 15 oz. of milk available for him each night. I'm so glad I have my mom here to help with cooking, cleaning, and baby-holding so I can get everything done! (Of course, I'm also thankful for my dad's help each weekend, and for my mother-in-law's help in Texas, as well as the many friends who continue to support us through this time.)

So, for those of you who read my recent Facebook post, I AM thankful for pumps: the feeding pump, the breast pump, and the medication pump, as despite their inconveniences (loud beeping, etc.) they all play a role in my son's recovery, and enable me to care for him at home.

Despite the situation I've described, Nathanael continues to do really well. His blood counts continue to improve, he shows no signs of Graft vs. Host disease, he is doing fantastic with regards to normal developmental milestones, and he is a happy little boy. The doctors expect him to have a fully functional immune system in another year or so, which is really exciting. Praise God as He continues to answer our prayers in ways we could not have imagined!

I've included a few pictures to show how much both of our little boys are growing up! I hope you enjoy them - even the ones that turn sideways, despite my best efforts to fix them.

(Oh, and you also might notice that Nathanael's cheeks are growing, and his eyebrows are getting darker. Both are temporary side effects of his medications.)