UVA Updates on Both Boys

We are finally home after a long day at the hospital and a long afternoon traveling in holiday traffic.  We arrived in Charlottesville late last night and we had to be at the hospital (with all five of us dressed and ready) by 7 a.m. 

The amazing news is that David's  Creatinine was .7!!!!!  That is really good news for his remaining damaged kidney.  That number tells us that despite not functioning 100% it is basically happy and is hovering around the high end of the "normal" range.  After the beating that kidney has taken that is music to our ears!  The amazing news of the day is that the scan was clean-no evidence of any disease/cancer!!  Glory be to God! 

My pictures are out of order, but one of the things that we wanted to get checked out was this nasty bruise on Kyle's leg from last weekend when he was hit in the thigh with a stray pitch.  While David was sedated Kyle had an appointment with a wonderful pediatric cardiologist.  She said that it is simply a nasty bruise and that time should heal it.  After an EKG and echocardiogram, he does still have a murmur but it is benign and he is cleared for all sports and activities!  That made him smile:)

Kyle's vitals were great except that his blood pressure was elevated???  Of course Momma got nervous because they made him lay down and recheck it, then they checked it manually, then they rechecked it again before we left and it stayed elevated???  I freaked, I will be honest, but the wise doctor advised us to check it weekly for a month and call her back with his pressures.  We wonder if it is because perceptive Kyle was well aware that it was scan day, nervous about his own appointment,  or he just had white coat syndrome???  If it is still high after a month, then he will be referred to David's kidney doctor for additional testing. 

David really gave the anesthesia nurse a run for his money this morning:)  The drill is that when we arrive he is given Versed orally so he will not remember the mask.  That works beautifully except he dislikes that Versed so much and this morning he spit it back up all over the nurse.  Thankfully it rinsed right out and he gets it because he is a Dad himself.  After that medicine gets into David he is a little loopy and hilarious!!!

I took Kyle upstairs for his appointment and it is the same place where David goes for clinic.  It was so weird to see Kyle in the vital chair instead of David:)

Thankfully Kyle did not mind the EKG or the echocardiogram. 

We were so blessed with so many texts, emails, and messages today from dear friends encouraging us.  One of the many that made me smile was a picture of Rocky Duke (David's monkey in my chair) who took his spelling test for him today.  Rocky Duke has been with David's classes since chemo and it was so sweet of his teacher to remember Rocky Duke and to send us a picture.  It really made David smile. 

Hope went along with too and was entertained with all the spinning chairs in the doctors offices:)  She was suppose to stay with my parents but last minute decided to "go with my family."  She is in a mommy phase right now. 

David was sleepy after his scan and really only wanted Mike or Kyle to hold him.  He is very unstable on his feet for the first few hours after the scan and Kyle stuck to him like glue.  I love when we can go to clinic as a family. 

 

Overall the day was long and tiring but we are so thankful to God for such amazing news.  David has now reached a milestone of remaining cancer-free one year past  treatment.  We know we still have a long ways to go with many more hurdles, but we will stop and celebrate and give God the glory for each victory we win along the way.  The boys are celebrating tonight by going to a local football game and Hope and I have had a tea party and we now have plans to watch a movie and call it an early night.  Thank you dear friends for the love today-we felt covered in prayer and surrounded by love.

The Journey

Last night we had the three-year old open house at preschool. Finally after all the organizing, cleaning, praying, and lesson planning, children showed up with their parents!! 

 

Last night I met all of my new three year old students and what an adorable and awesome class it will be!  There are blessed with not only church support but with great families.  It is going to be a great year. 

 

Last night Miss Emily walked into my classroom.  As you can see, she looks just like my David and is rocking a little extra chromosome.  I know her parents from our Down Syndrome family group and they are awesome people.  Emily just jumped right in with her new friends and toys.  Her parents were watching her with big smiles, but I recognized that look on their face.  This will be her first entry into the world outside of their loving extended family.  I get the sheer terror and excitement they must feel, because I too have had those same thoughts and feelings with David when he started preschool. 

 

I went to bed with them on my hearts last night because there was so much I wanted to share with them in those brief moments of open house last night.  I could not find the words to share with them then except for the promise that we will love her and that we will hold her to a high expectation. 

 

I also wanted to tell them that we will NOT patronize her by only talking about how "cute" she is and we will use the time out chair if we have to because we know she can learn right and wrong.  We will treat her like everyone else but we will also cherish that God did indeed make her unqiue and awesome and that He will use her to teach us about Him. 

 

I wanted to tell them that as she enters not only our sweet little christian preschool but "big school" she is going to blow their minds how smart she will be.  David re-taught me the oceans and continents this past week when we were studying and got them right without hesitation.   It may take children with DS a little longer to get it, but by golly they will.  You will be astounded how much she will learn and grow.  Never,ever let that little arbitrary IQ number stop you from expsosing her to knowledge and expecting her to get it.  You are in for some amazing surprises!

 

I know you are worried if she will be accepted by her peers, but from our experience with David you are in for another surprise.  Except for a handful of children (that simply were not taught properly) David has been greeted with acceptance and love from his peers.  Our children with DS are so blessed now because of inclusion that they start out in school included and with "typically developing" children .  In the past our children would have been segregated and therefore, different, now they are part of the class literally.  I see that David brings out the best in most people and I know sweet Emily will do the same. 

 

Sadly there maybe a teacher or other professional along the way that will not get her.  There have been whole meetings where all we have talked about are all the ways that David is "lacking or not measuring up."  Our children with DS often do not measure up on standardized timed tests but I promise you that there will be meetings with amazing professionals where she will collectively blow the minds of all involved.  Your heart will not be able to contain your pride and love for her. 

 

With our typically developing children you take for granted that God has ordained certain people in their lives because we do not dig too far to see it.  With our angels with DS, God's handiwork will be so evident in their lives that you can only praise Him for the amazing people that He will put in her path.  When she overcomes milestones that you thought were not possible you will simply have to give praise and glory to the Creator who made her. 

 

I know you are scared to send her out into the big world. I have often pondered keeping David under a rock too to "protect" him.  Just know that this teacher is honored that God put her in my life and that we will love and cherish her.  We will also prepare for her "big school" so she can continue to amaze those around her.  My heart is so excited for you and Emily because you are about to buckle up for an amazing ride.  I am just so thankful and humbled that I am her first stop in this awesome journey. 

Happy Birthday Mike!

Happy birthday Mike! I know you hate when people make a fuss over you, but today I just want to take a minute to say that we love you!

You are an amazing Daddy who always puts our kids first. Despite your huge and demanding job you are always one of the Daddy's that is always out there and involved in any sport that we are doing. I know you are squeamish about being a dance Daddy this year with Hope, but you will learn to love recitals too:)

I often get annoyed how much you give your job, but I do respect your work ethic. You take your job as superintendent seriously because you love all kids and want a great school system for them. I often threaten to throw your phone out of the window, but I pray that our kids get your unbelievable work ethic.

I love that you are more open with your faith these days. You are a strong and devoted man and I am so thankful that our kids see you going to church faithfully so they can follow your example.

I know we have been through some valleys with our kids in the last decade or so, but our faith and committment to this family have gotten stronger. I know David's surgery and treatment were so hard on you because not only were you as terrified as I was but you also had to juggle work and hospital during that time. I will never understand how you did all that.

This year I cannot give you the one gift that I know we both want. We want reassurance that we will never have to go down the chemo/radiation road with David again. Sadly I cannot guarantee that or that his scan this week will be clean. I can promise you that you are loved and appreciated, that we are in this for the long haul, and that God will continue to be the center of our home. Happy Birthday and hopefully this weekend we can celebrate your birthday and a clean scan-in the meantime my lasagna and a cookie cake will have to do for tonight. Happy Birthday!