Vacation - again?

Myrtle Beach - September 2011

Thanks to the generosity of some family members, the boys and I were able to take another vacation this year. We spent a wonderful week at a beach house in North Myrtle Beach with my mom, my aunt, two cousins (and their kids), and a few other friends.

The boys and I spent LOTS of time on the porch, on the beach, playing in the sand, and a few hours here and there sleeping.  ;)  A few mornings we were on the beach before 7am playing in the tide pools (which were wonderful!) and watching hermit crabs while looking for shells to throw into the waves.

As much as I loved being with family and near the water (yes, the house was ON the beach, which was great!), I think my favorite thing was watching my boys learn to play with their cousins and interact with others.  After so many months of isolation it was hard not to worry that we had scarred them for life with regards to their relationships with others, but seeing them learn to take turns, share, deal with frustration from not getting the toy they wanted, etc., was so good.  (Don't get me wrong, I'm not saying they LEARNED all that in one week!  They had plenty of opportunities to PRACTICE!) 


I also loved watching Jamison grow in confidence throughout the week.  He is normally somewhat reserved, and was quite cautious at first.  (I did appreciate that, given that this was only his third visit to a beach, and he was going to have to learn how things worked.)  As the week went on he even tried something new: laying on a boogie board while my cousin pulled him along.  Despite his initial hesitation, and only being willing to run alongside while another cousin was pulled on it, he eventually decided he loved it!

 Two things that were so cute were the "labels" given the boys by one of their cousins.  She dubbed Nathanael "the little fast guy" (probably in comparison to her own brother, who is only 14 months, and walks well, but doesn't move as fast as Nathanael at 25 months).  She also said that Jamison, "that OTHER four-year-old, knows a lot of words." after she heard him making up an alphabet song.  Both labels kept me laughing at how perceptive she is! 

 We did have a little trouble when Nathanael woke up Wednesday night (or was that Thursday morning?!) with a fever.  Once we gave him some ibuprofin his temperature dropped back to normal, and we were playing on the beach in just a few hours.  However, the problem continued even after we got home, so we continued to treat regularly, but once it had been almost a week we saw a few doctors, had blood work drawn, and had a chest x-ray (yes, we spent 6 hours in the emergency room in the middle of the night), and he was finally diagnosed with bacterial pneumonia!  After 2 treatments of IV antibiotics he was put on a course of oral medication, and he recovered just fine, without any problems.  We are so grateful.

We are grateful for God's provision through our family to have made this week possible.  Of course we all missed Brad, but had a fantastic time with family at the beach.  :)  Though some parts of our week were a lot of work (yes, there were 6 kids ages 4 and under!), we shared and helped each other, and really enjoyed the time together.  We will have many fond memories of this summer for years to come. 

Nathanael's stats - good reports all around!

So Nathanael had his FIRST EVER well-child check-up last week! It was pretty exciting to take him in to see a pediatrician who was not an immunologist, hematologist/oncologist, endocrinologist, or surgeon...someone who sees and treats generally healthy kids! The visit went really well, and I wanted to share some stats:

Height/Length: 31.5 in (2nd percentile)

Weight: 23 lbs, 1 oz (4th percentile)

Head Circumference: 19.75 in (85th percentile)

He's growing really well...in fact, he is now following a more typical growth curve than he's been on in over a year. From about 4 months of age to about 18 months, he hardly grew at all (wore mostly 6 month clothes and size 3 diapers for a majority of that time), and since February (after he was off steroids) he has grown considerably, and is now wearing mostly 18-24 month size clothing and size 4 diapers (though the size 3 would probably still fit!). He's still on the small end of the chart but it's nice to see him even ON the chart! It's also funny to note that at 2 years old Jamison was around the same height, and his head was about the same size. Nathanael weighs a little less than his brother did (Jamison was about 25.5 lbs) but given his past treatment and current growth, it's really not an issue. We have rather short boys who will have plenty of room for their growing brains! ;) We're just thankful that they're growing and doing well!

I recently checked on our progress on the COTA fundraising page (the fund that we're using to help finish paying Nathanael's transplant-related medical bills, and that will help pay for future transplant-related bills, such as post-transplant check-ups and travel expenses) and noticed that we're almost to the halfway mark, which is our goal for the first year. With a little bit more help we could raise $2000 in honor of Nathanael's 2nd birthday, and the 2nd anniversary of his transplant, which will be in November. If we could raise that much during this timeframe we could meet our goal and earn a bonus from COTA. If you are able to make a small gift during the next two months or so, OR if you know of someone else who might be interested, we invite you to help us meet that goal.

We also saw Nathanael's immunologist last week (it was a busy week, as I saw my oncologist as well!) and had blood drawn for monthly tests. His IgG level FINALLY started coming up on its own! For the past several months the level has dropped (since we stopped giving the medication that boosted it), but this month the number finally came up, so this is very good news!

I included this short clip to show some of Nathanael's vocalizing...he LOVES to make noise, and is starting to say things like "car", "truck", and "dog"...though they normally come out missing the first consonant. We're not concerned though, as he continues to make progress in this area, as well as in all other areas of development. We're grateful for that. Oh, and this also shows him climbing up and drawing...two other things he LOVES to do!

Happy Birthday Nathanael!

Our sweet and crazy little boy has been such a blessing to us - and to everyone he meets! - these past two years. He is consistently happy and smiley (unless he doesn't get his way, of course), loves to imitate his big brother, and makes us laugh with his silly antics. He is also much more thrill-seeking than the rest of us, which has caused me to add gray hairs more quickly this year than in years past. He loves to climb and fall down, throw himself backwards, and when he's really excited he runs around with his tongue hanging out!

While we are thrilled that he's doing so well, it's a little ironic that each year on August 19 Nathanael has been sick in some way. We hope this isn't a trend that continues!

2009 - A minor bleed on his brain was discovered shortly after his birth, and he was transferred to a children's hospital an hour away to be given washed, irradiated platelets. The bleeding resolved within a few days.

2010 - We were finally all home in Texas again, when he was hospitalized for a urinary tract infection for several days. We were sad, because Pop Pop David & Valerie were in town to visit, and they ended up meeting him through a hospital door while he was hooked up to IVs. The staff at the hospital did bring him gifts and decorated our room with a big sign though!

2011 - After fighting off an upper respiratory infection in July, he developed a cold a few days ago, and has been coughing a little. However, he has otherwise been completely himself, throwing food, splashing in our hotel pool, and trying to climb out of his car seat. I'm pretty sure I even found proof tonight - don't ask me how! - that he's been eating a green crayon. (I'm sure I'll find the rest of the offending piece of wax when I clean the car out this weekend!)



On the bright side, each year around his birthday Nathanael has been able to see one or more of his grandparents!

2009 - Joyce was here when he was born, helping us with Jamison while I was in the hospital with Nathanael, and then stayed for a few more days once we were home.

2010 - We saw my parents for Jeff & Julie's wedding in Columbus, OH the week before his birthday. (It was hard for me to keep the boys away from almost everyone else in our extended family, but with his low immune system and the risk of illness, we decided it would be best.) Then David & Valerie came to visit on his birthday, and while they could only see Nathanael briefly at the hospital, Jamison had a blast with them!

2011 - We visited Great Grandmom Jane in Spokane, and were able to celebrate (early) with her, as well as with David & Valerie, who came up for a visit, and with Uncle Doug & Aunt Chris, as well as cousins Carrie and David and a few others from Aunt Chris's family. We loved seeing Nathanael (and Jamison!) interact with everyone. We spent his birthday driving from Colorado Springs, CO to Amarillo, TX on our way home, but we did get to swim in the hotel pool that night, which he LOVED!

I should mention that we're really grateful that he has not been hospitalized at all since last December, so the fact that he has been able to stay home and fight off several minor illnesses is AMAZING progress from where we were even a year ago. It is still our prayer that God would use our family, and this whole situation, for His glory...we are just thankful that for now His plan includes having two healthy little boys at home.

Vacation Continues

Here are a few pictures from the second week of family vacation: lots of time with family and friends, lots of relaxing and playing, and lots of silliness! All-in-all we had lots of fun, and are thankful for the time we've had together.

The boys enjoyed "making sandwiches" with some borrowed toys (thanks Jerri!) that we too

k along on the trip.

They also enjoyed wearing the hats from Nathanael's impromptu birthday celebration.

Jamison was especially intrigued by the secret playroom under the stairs at Aunt Chris & Uncle Doug's house, but he let Nathanael play with him for a short time as well. ;)

Oh, and Nathanael had to "borrow" Grandmom's shoes to walk around. We laughed and laughed at his facial expressions, but I couldn't seem to capture the best ones.

Nathanael loved the "art room" at the Teague's house, and quickly decided that his favorite place was in front of the chalkboard easel!

We spent half a day at a park near their house (north of Seattle) and walked on the pier (saw a small dog shark!), played on the playground, and picnicked. It was great fun in a beautiful setting!

The boys all played really well together...and it was fun to see them get to know each other again, since it has been so long since t

hey've seen each other! They did all get a little rowdy, but for three little boys ages 2, 3, and 4 they didn't get hurt very often, and had lots of fun! Meanwhile we had time to visit with wonderful friends!

We did spend a few hours downtown Seattle, and saw the aquarium, where the boys all had fun checking out the octopus, seeing the sea lions, and running around.

We were sad to leave, but glad to have been able to visit, and were glad we could have a few more days with family in Spokane before heading back towards home.

Family Vacation!

Being such spontaneous people (ha ha ha) Brad and I recently decided to putthe boys in the car and take a trip to visit his grandmother in Spokane, WA this summer! (This was a little spontaneous for us, as we only made the final decision to leave about 3 weeks before our actual departure. Apart from missing our church's VBS this week, the timing could not have been better...we're missing 108 degree weather back home right now!) After over 30 hours (5 days), 4 museums, and 7 states, we finally arrived, and have been enjoying time with family for several days now. Here are a few pictures from our adventure so far! (They are out of order...if anyone can teach me an easier way to move pictures around in Blogger I'd LOVE to hear about it!)

• Nathanael wanted to help with the packing. :)

• Brad was so excited to escape the heat in Texas that he could hardly contain himself.

• The boys had fun in our hotel rooms each night - I think Jamison is "hiding" in this picture!

• We visited the Denver Museum of Science & Nature and a kind staff member offered to take our picture on the balcony. It was a great place to visit!

• We drove through the Bighorn National Forest on our way from Thermopolis, WY to Billings, MT, and saw some gorgeous scenery.

• We snapped this shot of the boys overlooking Hell's Half Acre in Wyoming just before hearing an eerie rattling sound that prompted us to scoop up the boys and head back to the car...stat! Other people told us they had seen a snake, but we sure didn't want to see the one we heard!

• The boys and I are checking out a triceratops at M.O.R.
• 
  
• Brad and the boys posed with "Big Mike," a replica of a T Rex outside Museum of the Rockies in Bozeman, MT, another great place to visit!

• Posing in front of Shell Falls in the Bighorn National Forest - another stop at a scenic

area that was well

worth our time!

• Playing at a rest stop in Montana just to stretch our legs for a few minutes. The boys loved this!

• Beautiful mountains somewhere in Montana. :)

• Four generations of the Banks family - see the resemblance?
• Visit to a fire station in Spokane where cousin David works - the boys had a ball!

• Valerie and I enjoying a fun evening together with the rest of the extended family: Uncle Doug and Aunt Chris had some other relatives over, grilled dinner for us, and we all sang "Happy Birthday" to Nathanael to celebrate his special day. (August 19th he'll be TWO years old!)

• Grandmom Jane and four of her six boys (Nathanael was in bed, and Jason is in Atlanta for the PGA tour).

We're off to Seattle tomorrow to visit friends, and will return to Spokane before starting our long drive home. More highlights of the trip to come! :)

Normal Nathanael?!

So I know it's been quite some time since I've posted anything. So much has happened, and I'll have to write about all of it later...but I wanted to share some news on my little guy: last month he passed his ACTH stimulation test, which means that his adrenal gland is awake and working normally! After so many months of suppression (due to the steroids he needed to take to prevent other post-transplant problems) we knew it would take some time for his adrenal gland to begin to function on its own, and we are so thankful it's now working! What this means for me is that I no longer need to think about ever using that large intramuscular needle on his thigh to inject steroids at home because his body will make what he needs. Yay! After 7 months of sticking small needles into his thighs every week and 11 months of torturing him through weekly dressing changes on his central lines I am VERY thankful that this is one medical procedure I did NOT need to put into practice.

We also just learned today that for the second month in a row his IgG level is normal. NORMAL! Now of course, it doesn't SOUND normal to me, since for so many months we were adding IgG to his system, and our goal was to keep it over 600 (it was over 400 in June and is currently just over 350), but the nurse told us that it's normal to experience a drop in the level before it starts to rise. This is really exciting!

We have also witnessed Nathanael's first upper respiratory infection, and he seems to have handled it pretty well. We didn't give any medications (though his new pediatrician recommended some more natural remedies, and we added lithy tree oil to his water for a few weeks), and he continued to eat, drink and play pretty normally. (His sleep was interrupted by coughing almost every night for about two weeks, but now it's back to normal, in that he only wakes up after he's soaked his pajamas and bed.) We're pretty sure Brad had it first, then Jamison, then I came down with it about a month ago, and two weeks later Nathanael had it. However, three of us were diagnosed with and treated for bronchitis. Not Nathanael! Of course I am thankful that at present he is still not fully weaned, and since I had this infection before he did, he has been getting antibodies through milk.

Like a normal little brother, Nathanael wants to do everything Jamison does. (Sometimes it drives Jamison crazy, but I try to tell him this is part of being the older sibling...I'm not sure that explanation ever worked for anyone, but it's true!) He likes to play with the same toys, "read" the same books, sit in the same chair at the same time...you name it! One of Jamison's favorite things to do lately is to hide. He loves to call out, "Mommy...come find me!" and then wait for me to look in several places before finally finding him. Sometimes he likes to hide under couch cushions, and I have to "give up" and say something like, "Oh well...I just don't know where to find that Jamison. I'll just rest for a few minutes on these nice, fluffy pillows." And when I fall down on the pile of pillows someone erupts into giggles and squeals with delight. Well, just recently Nathanael decided to hide on the couch. It was pretty cute. See if you can spot his little feet in the first picture before looking at the second one of his big grin. (Oh, and yes, that laundry is clean and waiting to be folded. At least it's clean!)

So there's a lot more going on at our house, but some things are still "normal". Besides missing church for 3 weeks (while the boys and I were sick) we are enjoying time with friends, going to the park about every other week taking Jamison to Soccer Shots every Wednesday morning, and going swimming when we can. (Did I mention that the boys LOVE the water?) We are planning for a few trips in the coming months: one to see Brad's grandmother, uncle and aunt in August, a trip to Myrtle Beach in September for the boys and I (with my mom, my aunt, and two cousins and their kids), and a trip to Cincinnati in October for a check-up, followed by a visit to Wisconsin to see my parents and extended family. It's daunting to think about so many hours in the car (okay, one trip will be by plane) with two little guys, but we are so excited to take them places. Our trip to Spokane next month will include three national parks and two or three great dinosaur museums!

The not-so-much-fun part of life in our house right now is that I have a fast-growing desmoid tumor that requires immediate treatment. I will have another MRI next Thursday (8/28) in Dallas, and will then take my first dose of daily oral Raloxifene (Evista) to try to stop its growth, and hopefully shrink it (and the three others that are currently dormant) into non-existance. So that's my big news. I'm not sure I'm ready to write about all of it yet, as I'm still pretty raw emotionally. (I cried for almost a week when we got the news.) I recently met a woman whose email address starts with "cancerblessings"...I told her I wasn't really there yet, and thankfully, she understood. Please pray for me. This medication will (at least temporarily) put me into menopause, and August in Texas is no time to start to have hot flashes. If this doesn't work in 6-8 months I will probably try Gleevec, and then would move onto Methotrexate and Velban (IV chemo given once a week through a mediport - which I would need to have surgically placed). I hate that this has to be part of my life for many reasons. I am grateful that we didn't find the new tumor during Nathanael's treatment. That would have pushed me over the edge. So please do pray, and please keep in touch with us. If you're around here, please invite yourself over, or invite us out. If I get depressed like the last time I was on chemo (2000) it will be hard for me to reach out at all. So I do need help getting out of the house and getting the boys out for fun with friends...and I need to take my mind off this mess!

Lots of love to all of you who pray for and support us!