Monday, September 10, 2012

Day One, Half-Way Done!

Hi Everyone!

I just want to start by thanking you all for your prayers, encouragement, and concern for Clara. I am amazed at how smoothly everything has gone so far. God has answered prayers in a huge way!

As nervous as I was about making it through the airport yesterday, it went remarkably well. We hit a ton of traffic in Chicago, but thankfully we left our house a little earlier than we thought we needed to, so it worked out fine. When we arrived at the airport, they had a little fella named Justin help me through security and to the gate with Clara. He was able to take us through a special gate at security, and he helped me get everything onto the conveyor belt that goes through the x-ray machine, so security was a dream! No line and I didn't have to juggle everything on my own. Huge blessing. I don't know what they pay him, but I am sure it isn't enough. :-)

We arrived at the gate about 45 minutes early. I had these grand visions of Clara drawing or playing on her toy laptop so I could read. NOT! She was far too excited for that! She watched planes and people and planes and people, and before we knew it, they were calling us to load! The flight was smooth (and soon as we were up, we were headed down), and I would give anything if I could have gotten pictures of her sweet, little excited face. She had a hundred questions, but it was so fun to see something that has become very normal to me through the eyes of a six year-old little girl who has never flown before, and to experience the wonder all over again!

Waiting to board.
On the plane...waiting for take-off!

I have always had a soft spot for old men, and when I saw the Shriner that came to the airport to take us to the Haven House, I just want to scoop him up and take him home to be very own little old man! He was precious! His name was Bill and he has been a Shriner for over 25 years. I asked him to tell me his favorite part of being a Shriner. He said, "This is!". He said that they have a hard time getting some of the younger guys to be a part of the escort system, but he said, "I don't want to tell them how great it is, because that might cut into my time." So sweet. He had his wife, Linda, in the van, so I really enjoyed talking to them and getting to know all about their family and their involvement with the Shriners. More than anything, it was so great to finally be able to say, "thank you" to an actual person.

Clara with Mr. Bill, her very own Shriner. :-)

We arrived at the Haven House (similar to a Ronald McDonald House) around 5:00, ate dinner (that was provided by volunteers), and for the first time in days, we were able to relax. Clara went to the craft room for a while and a large playroom that is there, and I just enjoyed sitting back and watching her. I know every Mom feels this way about her children, but every once in a while, it is so nice to sit back and marvel at how beautiful she is. I think she is truly one of God's most magnificent creations....all four of my girls. Just love 'em!

Modeling Day #1 of new PJs for Clara and her baby, Katie, from Grandma Jackie. If a girl's got to be at the hospital, she might as well be cute, after all. :-)

We rode a shuttle from the Haven House to the Shriners hospital this morning, and... aside from everyone having to get off the first van and get into a bigger one because all of mine and Clara's stuff wouldn't fit (None of the other people were living at the hospital all week), and hitting terrible traffic and thinking I was close to death a few times when our driver was racing forward and looking behind him...we arrived safe and sound. :-)

This is Clara with Ms. Valerie, her nurse.

All checked into my room!!

This has been a big day. We first met with the dietitian, who is responsible for making sure Clara's diet this week is nutritionally close to what she eats at home. There was, then, a ton of paperwork/releases to be signed, then we spent at least an hour, if not an hour and a half with the geneticist looking after Clara this week. Remarkably, Clara has her own geneticist and nurse this week. There are usually two children per doctor and nurse, with a total of four children in the research center per week, but this week, there are only two children, so we get our very own. :-) It was a very casual conversation. He sat back and crossed hi legs and we just talked....talked about Clara, her history, and a myriad of other things.

This afternoon, Clara went to radiology for a bazillion x-rays and a bone density scan. I am always amazed, as are the staff, at how well she does with these tests. That is a blessing in the midst of this, because if she didn't do the testing well, I think I would be in the loony bin. Tomorrow will be two blood draws and they will collect urine for the next three days to get an accurate picture of what her body is doing.

Beyond that, we wait. Wait for test results. Wait for the team of doctors to collaborate. And then wait some more. I was given a lot of information this morning by the geneticist, but until things are final, I will not share. Some of it was speculation about what "might' be, based on what they can see for now, and some of it was not significant in light of what we already know. What I can say is that she is not nearly the most severe case they have seen, and they all marvel at how healthy she looks. So thankful for that!

There is one concern for which I would like to ask for prayer....I know my prayer warrior friends like specifics. :-) There is a possibility that she has been on a higher dose of her ricket medication than what she needs and as a result, she could have some calcium in her kidneys, which they can do nothing about. We go to another local hospital tomorrow for Clara to have a renal ultrasound tomorrow, and I am praying that her kidneys are still healthy.

Wednesday, we meet with the whole team of doctors/technicians/nurses/staff on Clara's case. They said there would be about fourteen of them, and then Clara and me. Sounds intimidating. That is the day we will meet Dr. Whyte, the one we came to see, for the first time, and I need to be prepared with questions. If you can think of something I need to ask that I may forget to ask, feel free to share. :-) I'll take all the help I can get at this point. :-) On Friday, we will meet with Dr. Whyte once again so he can fill us in on her treatment plan.

Beyond that, they said they will want us to do x-rays and blood work every three months from home, and we will come back here once a year until after puberty.

I will give more information as I know it. I can say, with certainty, that I finally think we are in the right hands. Dealing with XLH is like breathing to the people here...they have been doing it for thirty years. Ms. Valerie, Clara's nurse, has been here for twenty-seven years! I find that amazing. It really does seem to be an amazing place. Maybe we are finally stepping off of our merry-go-round.

I am very hard to reach by phone right now, but I am frequently checking texts, Facebook, and e-mails as I am able. I love getitng messages! Please keep them coming!!

I love you all and greatly appreciate your prayers!

Much Love!


  1. Tell Clara I love her pjs. They are adorable, as is she. Praying for you.

  2. I agree with you Jeannie, enjoy your time just adoring your little miracle! You take great pictures! I love her P. J's too especially that they match her doll.