Even though time is passing and Camryn is thirty months post transplant, she still heads down to UCLA for once a month clinic appointments. I am hopeful at some point the appointments will be fewer, but for now we will appreciate the health she does have and not ask for more.
Today's appointment went well...Camryn and Daddy headed down super early, because last time they went they hit horrible traffic and the whole morning was spent stuck in traffic and then delayed at clinic. So, they headed out early and got to clinic is great time! Camryn saw B, her nurse practitioner and Dr.M...of course we love the visits when this happens. They both confirmed that Camryn looks great! Her labs came back super as well...so grateful for her health.
Dr.M commented that she is right where they want her to be and that the chronic graft vs. host disease she is experiencing, will subside at some point. Research says that it won't last forever, but for now this is what we are dealing with. Camryn's skin is a mess, she looks like she has horrible eczema. The doctors said the weather isn't helping at all and to keep her super moisturized, so we will! I have to say that I am so thankful for the very sweet group of girls at school with Camryn...never once have they said a word about her skin or her scalp. I love these little girls, and I am so thankful for them!!
They are referring Camryn for a dermatology consult to have her scalp looked at further, but for now that's the extent of the issues...we are just thankful for her health.
Jason made the comment that while they were at UCLA he saw parents in various stages of the journey...and my heart paused. Inasmuch as I am SO thankful Camryn is doing well, the journey is never forgotten. I know there are children even at this moment who are on the 3rd floor fighting for their lives, children waiting for donors, parents receiving news no parent should ever have to hear...and my heart aches.
As I watched Camryn run her lap around the field with her PE class my heart smiled, there were many days when I wondered if ever. Would we ever get these moments? And the harsh reality is that we know far too many parents who don't and that breaks my heart.
Yes, we are thankful...but, incredibly humbled that Camryn is doing well. The Lord has taught us much throughout this journey and today He is gently reminding me...
Never forget...you were not the only parents walking in those shoes.
Tuesday, December 6, 2011
Monday, December 5, 2011
beautiful things...
All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
All around
Hope is springing up from this old ground
Out of chaos life is being found in You
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make me new, You are making me new
You make me new, You are making me new
You are making me new
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make me new, You are making me new
You make me new, You are making me new
~ Gungor
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
All around
Hope is springing up from this old ground
Out of chaos life is being found in You
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make me new, You are making me new
You make me new, You are making me new
You are making me new
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make me new, You are making me new
You make me new, You are making me new
~ Gungor
november...
The month has come and gone and not one single post from me...so here's the bullet point list of the month:
* Celebrated our niece Makenna's 17th birthday...we had fun celebrating a very special girl in our lives. Hard to believe Makenna is 17, but it is amazing to see the awesome young lady she is. We ate good food, but I think the highlight of the day was that the kids got to spend the afternoon with Caleb, Josh, and Makenna. One of the greatest gifts of my life are those kids...I love them and I am so proud of them and watching them with my kids just makes my heart happy! Love you three!!!
* Colds of 2011...we all got sick in November. Wyatt started it off, he thankfully got through it relatively quickly only missing 1 day of school. I got it next and I was not nearly as lucky as Wyatt...I was sick for 3 weeks and those of you that know me well might be shocked that I missed a day of work for myself. Camryn was next and of course this was the most alarming for us. We carefully watched her temperature and how she was doing...thankfully she did okay, missed 2 days of school but overall did okay. We were very grateful that she made it through a cold without a trip to the ER...grateful! Jason got sick and like he normally does fought it off and wasn't sick too badly...but all in all November was a month of coughing, sleeplessness, aches and pains, and of course lots of medicines.
* Conferences...at the beginning of the month the kids got 2 days of school off for the first quarter parent teacher conferences. Jason and I both were a bit nervous, we knew the kids were doing well, but since this was all so new we were anxious to hear how our little ones were doing. Camryn's conference was first...Mrs.B was so sweet in describing our precious girl. She is blossoming into a bright flower. Camryn is doing well with her reading, phonograms, math, science and just about everything else. She had been going to a special tutoring for new kids on their phonograms and we were told that she had caught up and she did not need to go anymore. WooHoo! We got her report card and to say we are proud would be an understatement...it's not just about her grades, but rather watching her enjoy, savor, and thrive at school brings healing. Wyatt's conference was amazing. Mrs.L is just awesome, she is one amazingly gifted teacher. Wyatt is doing super well in kindergarten...we were so happy to hear such neat things about our boy. We were a bit anxious, especially since we opted to put Wyatt in kindergarten and not hold him back. And true to our thought he is excelling academically and doing amazing! We are so proud of him...he truly is a gift, a most precious gift.
* Thanksgiving...we had a fun day on Thanksgiving hanging out at my parents' house. It was just us and my parents so it was a quiet day spent eating, watching football, movies, playing games, and of course just enjoying time together. I am so incredibly thankful for my parents, they have filled the gap for me more than once and just have been amazing helps in my life. The relationship they have with my kids is completely priceless, one of the biggest blessings in my life.
* Thanksgiving Part Two...on Friday we spent the day with Jason's family. What a wonderful day we spent together...one of the biggest blessings of Jason's family are the cousins. Camryn & Wyatt love spending time with Riley & Peighton...and we of course just so enjoy spending time with our siblings and parents. One of the joys of this year was having Jason's grandma here with us...although we missed Grandpa immensely, but the Lord has been good, allowing Grandma to be here with us to celebrate all that we have to be thankful for.
* UCLA trip...on the last day of November I spotted Camryn walking to the nurse's office at school (I was out on lunch supervision duty). I walked over and met her and tears began streaming down her face. She wasn't feeling good, her ear was hurting, and she looked like she had a fever. I walked with her to the nurse and they took her temp...sure enough low grade fever, but I was most concerned as she was really in pain because of her ear. I quickly began going into my mommy of a childhood cancer survivor mode. I called Camryn's nurse practioner and she told me to call her primary doctor or get her to Urgent Care. Can I tell you how excited I was that the ER was not mentioned?! I called UCLA and got an appointment for 3:40...we headed down and it was determined that she had massive wax build up in her ear and it needed to be flushed in order for the doctor to see if in fact she had an ear infection (that's what her nurse practioner thought it was). After flushing her ear, Camryn felt better and of course she had an ear infection. We got a prescription and headed home...thankful for UCLA, but could have done without the 3 hours at UCLA and the hour and a half drive home.
* Pictures...I had asked my friend Kelly to take some pictures of the kids and the 4 of us for possible use for a Christmas card. Camryn wasn't feeling great, so we had to cancel. Kelly ended up coming over and playing with the kids and hanging out...gosh, we love Kelly! Later that week Camryn felt better so we headed to the park and I snapped a few pictures...I'll share them in another post, but let me say I cried when I saw them. How in the world did my kids get so big?!
Well, that's a month in a nutshell...sorry, I was missing in action. I will try to do better this month, I have missed my blog...
Thanks to our faithful readers for not giving up on us...shout out to my cousin Kristi! :)
* Celebrated our niece Makenna's 17th birthday...we had fun celebrating a very special girl in our lives. Hard to believe Makenna is 17, but it is amazing to see the awesome young lady she is. We ate good food, but I think the highlight of the day was that the kids got to spend the afternoon with Caleb, Josh, and Makenna. One of the greatest gifts of my life are those kids...I love them and I am so proud of them and watching them with my kids just makes my heart happy! Love you three!!!
* Colds of 2011...we all got sick in November. Wyatt started it off, he thankfully got through it relatively quickly only missing 1 day of school. I got it next and I was not nearly as lucky as Wyatt...I was sick for 3 weeks and those of you that know me well might be shocked that I missed a day of work for myself. Camryn was next and of course this was the most alarming for us. We carefully watched her temperature and how she was doing...thankfully she did okay, missed 2 days of school but overall did okay. We were very grateful that she made it through a cold without a trip to the ER...grateful! Jason got sick and like he normally does fought it off and wasn't sick too badly...but all in all November was a month of coughing, sleeplessness, aches and pains, and of course lots of medicines.
* Conferences...at the beginning of the month the kids got 2 days of school off for the first quarter parent teacher conferences. Jason and I both were a bit nervous, we knew the kids were doing well, but since this was all so new we were anxious to hear how our little ones were doing. Camryn's conference was first...Mrs.B was so sweet in describing our precious girl. She is blossoming into a bright flower. Camryn is doing well with her reading, phonograms, math, science and just about everything else. She had been going to a special tutoring for new kids on their phonograms and we were told that she had caught up and she did not need to go anymore. WooHoo! We got her report card and to say we are proud would be an understatement...it's not just about her grades, but rather watching her enjoy, savor, and thrive at school brings healing. Wyatt's conference was amazing. Mrs.L is just awesome, she is one amazingly gifted teacher. Wyatt is doing super well in kindergarten...we were so happy to hear such neat things about our boy. We were a bit anxious, especially since we opted to put Wyatt in kindergarten and not hold him back. And true to our thought he is excelling academically and doing amazing! We are so proud of him...he truly is a gift, a most precious gift.
* Thanksgiving...we had a fun day on Thanksgiving hanging out at my parents' house. It was just us and my parents so it was a quiet day spent eating, watching football, movies, playing games, and of course just enjoying time together. I am so incredibly thankful for my parents, they have filled the gap for me more than once and just have been amazing helps in my life. The relationship they have with my kids is completely priceless, one of the biggest blessings in my life.
* Thanksgiving Part Two...on Friday we spent the day with Jason's family. What a wonderful day we spent together...one of the biggest blessings of Jason's family are the cousins. Camryn & Wyatt love spending time with Riley & Peighton...and we of course just so enjoy spending time with our siblings and parents. One of the joys of this year was having Jason's grandma here with us...although we missed Grandpa immensely, but the Lord has been good, allowing Grandma to be here with us to celebrate all that we have to be thankful for.
* UCLA trip...on the last day of November I spotted Camryn walking to the nurse's office at school (I was out on lunch supervision duty). I walked over and met her and tears began streaming down her face. She wasn't feeling good, her ear was hurting, and she looked like she had a fever. I walked with her to the nurse and they took her temp...sure enough low grade fever, but I was most concerned as she was really in pain because of her ear. I quickly began going into my mommy of a childhood cancer survivor mode. I called Camryn's nurse practioner and she told me to call her primary doctor or get her to Urgent Care. Can I tell you how excited I was that the ER was not mentioned?! I called UCLA and got an appointment for 3:40...we headed down and it was determined that she had massive wax build up in her ear and it needed to be flushed in order for the doctor to see if in fact she had an ear infection (that's what her nurse practioner thought it was). After flushing her ear, Camryn felt better and of course she had an ear infection. We got a prescription and headed home...thankful for UCLA, but could have done without the 3 hours at UCLA and the hour and a half drive home.
* Pictures...I had asked my friend Kelly to take some pictures of the kids and the 4 of us for possible use for a Christmas card. Camryn wasn't feeling great, so we had to cancel. Kelly ended up coming over and playing with the kids and hanging out...gosh, we love Kelly! Later that week Camryn felt better so we headed to the park and I snapped a few pictures...I'll share them in another post, but let me say I cried when I saw them. How in the world did my kids get so big?!
Well, that's a month in a nutshell...sorry, I was missing in action. I will try to do better this month, I have missed my blog...
Thanks to our faithful readers for not giving up on us...shout out to my cousin Kristi! :)
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