Final Follow-Up from Our Visit With the Shriners

"Grateful" is an understatement for the way I feel about our visit to the Shriners Hospital for Children. Overall, I can't say enough good things about the care Clara received there and the experience we had with all of the doctors who are a part of her care team. The fact that they even work as a team, to me, is nothing short of marvelous. As ready as I was to go home on Friday, Clara was still not ready to leave. I think that is a huge testament to the environment they have created for the children. Even with a lot of the "yuck" she had to experience, the "fun and wonderful" way outweighed the yuck, and she loved it there.

I am in awe of the way God provided for us. I am so thankful for family who helped provide what we needed to be able to go. I am thankful for the prayers, notes, cards, dinners, gifts, and words of encouragement that were given along the way. I am beyond thankful for my friend, Elvie, who got me connected with her endocrinologist who got us connected with The Shriners Hospital. I am thankful for the new friends Clara and I both made at the hospital, and for a group of people who can really relate to our experience with bone disease. I am beyond thankful for the angel God sent our way to help us through the nightmare of TSA at the St. Louis airport. O'Hare was great. St. Louis....not so much. When all was said and done, we had Clara's adaptive stroller, and six, yes six, of those little gray bins full of stuff on that conveyor belt. (Why we had to fold up that contraption of a stroller and put it on the belt is beyond me. At O'Hare they just took it to the side and scanned it. MUCH easier.)

We left St. Louis with lots of great news and information, and a peace that I have not felt in, at least, five-and-a-half years. Peace in knowing we are finally in the right hands. Before we left, they changed the dosage of medication one last time, even since the last time I posted about it. They will be monitoring her via of blood and urine every three months until we return next September. If anything is ever "off", they will contact us immediately and deal with the issue. They didn't tell me this until we were about to leave, but the geneticist said that he was so afraid her kidneys had already started calcifying because of the large dose of medication she was on. Everyone was so relieved when her renal ultrasound came back normal. They are big believers in treating the kids over the whole course of their growing years, as opposed to treating them really quickly, so there is not so much damage later in life. Honestly, and I told the doctors this on the first day, I had been beating myself up because it was so hard to get all six of her doses in everyday. Now I'm glad that I wasn't always able to accomplish all six, and they are, too. They encouraged me and affirmed me in so many areas, because as a Mom, I always question, "Did I make the right decision?", and "Have I done all I can do?". They certainly felt we had seen all the best doctors and done all we could do based on the information we had been given up to that point.

The dietitian met with us on the last day, and while they were thrilled at the variety of foods Clara enjoys, they did put some limitations on her diet because of the way some foods interact with the phosphorous she will now be taking four times a day (instead of six....YAH-HOOOOO!). Her medication also contains sodium, so we have to limit that, too, which will benefit everyone. Thankfully we eat very little processed food, so it will be easy for me to control how much salt is being added to things.

The orthopedic doctors felt really good about her legs. She does have some significant weakness on her left side, but with lots of work, that can be helped. They recommended some exercises to do at home, in addition to some sports that might help her. They also fitted her for, and made, some orthotics and told us to get some really good tennis shoes for her. They believe that her alignment (or lack thereof) is what is causing most of her pain. Because her little legs are bowed, she puts a lot of pressure on the outside edge of her foot, which affects her knees, hips, and all the way up her body.

The geneticist feels that her muscle biopsy report does indicate that she has a mitochondrial disease. However, he, and everyone else, are puzzled as to why she looks so good. He has a theory about the way her cells have divided, yada yada, that was actually the best theory I have heard up to this point, but it is lengthy and I don't really want to type it all here. (If you really want to know, you can ask me.) Whatever the theory, I believe we have a great, big God who is still the Great Physician and can use whatever method He wants to heal her little body. I am thankful for answered prayer and that she looks so healthy!

I am extremely thankful that, for the first time in a long time, I had a doctor look me in the eyes and tell me that he expected Clara to live a long, healthy life. It will not be without pain and some trials, but whose is? There is no way to know if she will need hip or knee replacement in the future, but they felt very confident that she probably would not. I do grieve some for her future children, but I have to let that go and grieve when it's time. I am excited to move forward and just enjoy this precious little girl, and the other three precious girls, that God has blessed us with! The doctors have assured me that the treatment they have her on is state of the art, so we will continue to give that to her and do all we can to help her. Beyond that, we have seen God's hand so often in her little life that we know, have absolute faith, that He will continue to hold her.

I think that just about covers it. Hopefully I haven't left out anything. Just ask me if you have questions. I am so thankful for everyone who has taken the time to keep up with Clara via our blog, and there are no words to express my thankfulness for your prayers! We felt them, and they were answered!

Just for fun, there were a few pictures I didn't share from St. Louis. Enjoy. :-)

 Just about to leave for the airport.

 We saw a Delorean on the way to the airport. The license plate cracked me up.

The Arts & Crafts room at the Haven House had hundreds of paper cranes hanging from the ceiling. It made me think of Leslie.

This is the hospital gown Clara and I made together for her Bitty Twin. She was so proud of it!

We were at the Haven House for about 12 hours. In that time, Clara managed to make a friend. (She has a way of doing that.) She made her a card in the Arts & Crafts room, and the next morning, Ms. Lori left this note on the survey she slid under our door. I thought it was so sweet. :-)

One of the incredible aquariums at St. Louis Children's Hospital.

 She travels lightly. :-)

On Wednesday they had Pet Therapy at Shriners. Clara looked forward to that ALL WEEK! On Wednesday morning, the first thing she said was, "Mom! Today is 'Pet Physical Therapy' Day!" :-) I told her that she could bet her hat on it. :-)

 Such a nice dog.

She got to walk this one all over the second floor with another little girl who was in a wheel chair. This dog's name is Faith, which is Clara's middle name. I thought that was sort of neat.

Dr. Gottesman, her geneticist at Shriners.

Balloons and a bear from Papa and Grandma!

Ms. Beatriz, one of her dietitians.

Bingo night!

Ms. Valerie, Clara's nurse...her very own. :-) She was one special lady!

Clara and Shawn had to say, "Good-bye". :-( Such a sweet little guy.

Much  Love,

Jeannie

Day 4....Some Fun Things

I know we all handle stress differently, and for me, humor is usually my go-to coping mechanism. I can remember the day of the wedding of my best friend in high school. We were in the bridal room before it was time to go down the aisle, and things were way too tense. Without even thinking about it, I just started cracking jokes. That tends to be how I handle every tense situation, which is fine when I am around other people like me, but it really just annoys most people, I think.

Regardless, as we have progressed through this week, there are some things I have found hilarious.

For one, this is the paper I had to fill out about our immediate and extended family on Tuesday:

 I guess they know we're Dawgs?

 

 

This was one of the questions on the two page worksheet (Check out # 4):

Notice that I didn't fill in any blanks before I took a picture. You'll never know what it said when I was done. :-)

 

Another interesting thing: Dr. Gottesman, the very serious (and brilliant) geneticist that Clara has been seeing here rides a unicycle. Maybe that doesn't sound that funny, but I thought only clowns rode unicycles. He didn't find that funny. Although, most people in the north don't think things are as funny as I do....maybe that means I need to be a little more serious. It could be bad to think things are too funny, I guess.

 

The hat rack has been the most hilarious...but you know all about that already.

 

Something fun that happened today: The parents of one of my closest high school friends lives here in St. Louis! They came by the hospital today to meet Clara and to take me out to lunch. It was SO GOOD to see them! I had fun catching up on their family, but also, her Dad worked with my Dad at Eastern Airlines as a mechanic, so it was fun to talk "aviation" for a while. (Even though it made me miss my Deddy.) I have always loved them...such sweet people.

 

Mr. and Mrs. Hargreaves (and me...)

 

 

A little something sweet: Clara has become really attached to the little boy acros the hall from us. We have enjoyed getting to know his family this week. She is going to be sad to say "good-bye" to him.

 

A new skill: Clara is learning how to swallow pills. The tablet form of her meds is more accurate AND more convenient. We were mixing a packet of K-Phos with 3 ouces of water 6 times a day (in theory) to get in all of her medication. Now, we can hand her the tablets 5 times a day. MUCH easier. The best part for her: They gave her mini M&Ms to practice with. :-)

There are fewer updates today on Clara's medical issues. The orthopedic doctors came by to see Clara during their rounds today. The attending presented her case, and the head orthopedic doctor released officially declared that, from a surgical stand-point, she looks good. That's the official word. Not that her legs are perfect, by any stretch, but they are not serious enough right now to warrant surgery and they believe that after staying on her treatment through her growing years, her legs will be nice and straight by the time she is a teenager. Works for me!

Clara was also fit for orthotics today (that the Shriners will pay for...woo-hoo!), and we will probably have them before we leave. The only thing we have to do when we get home is get her a really good pair of tennis shoes. They aren't too crazy about her flip-flops or her Chucks. It was good while it lasted. :-)

I just took a break from typing because the rheumatologist came in to evaluate her. Guess what she said? "Clara needs a really good pair of tennis shoes. No more flip-flops." (sigh) It looks like we'll be shopping when we get back. This whole shoe/orthotics issue has always been a frustration to me . One doctor swears by them whole-heartedly. Another doctor says that it really doesn't make a difference. Some doctors say the orthotics do her more harm than good. But as of this week, I have decided that whatever they say at the Shriners Hospital is what we will do. Case closed. One more stressful decision checked off of my list.

They have also recommended some very specific exercises for her, in addition to some sports that would be really good to build up the specific muscle groups she needs to work on. I can't even think about all of that right now. I need at least two nights in my own bed first. :-)

Tomorrow will be the last time we meet with all of the doctors at one time before next year. After that, we will be discharged and will fly home. There is a very good chance I will not find time to blog, but I promise to update all the final results of everything once we are home.

As I leave here, I can't help but feel such deep thankfulness to the people who make this place possible. I don't have enough good words in my vocabulary to express how wonderful it is here for children like Clara who have been on a medical roller coaster their entire lives. This place gives hope. I have met some children with some of the worst deformities I have ever seen, yet they inspire me with their joyful hearts and positive attitudes. I look at them and think that most of us really don't know what it is to suffer, yet they do it without complaining. They have figured out a way to live their lives as fully as they can. I have also walked the halls here, thanking every Shriner I have seen...I think I have thrown a few of them off guard. I just can't help it. I am so thankful. There is a wall on the way to the cafeteria, that I pass at least 6 times a day, that is full of pictures of past and present Shriners. I pray for those men and their families, thanking the Lord for using them to make the lives of these children better. I pray for their families that support them and the time they spend fund-raising to fund the work that is done here. Obviously, I don't know any of their spiritual beliefs, but I pray that they all know Jesus.

I will never look at the red velvet hats the same again. Anytime I see those hats, if there is anything in my pocket, something will be going into that hat.

Please pray for us tomorrow as we meet with the doctors, that if there are any questions I need to ask, God will bring those to mind. Also, please pray that we will have safe travels. I can't wait to see Jeff and my other three girls tomorrow night! I have missed them!! And for the first time all week, I don't think anyone is going to mess with Clara's sleep...THANK THE LORD! She has been a GRUMPY MONKEY today!

Praying your night is wonderful!

Much Love,
Jeannie

 

Day Three...Information Overload

Hi Everyone!

Today has been a big day with lots of information, and I am eager to share it all. Before I do, I wanted to clarify something from yesterday. When I said something happened that made me angry, it had nothing to do with Clara's medical team. Her doctors and her nurses have been wonderful. Even the urine fiasco didn't really make me angry. I was bummed that we missed an hour of sleep for nothing, and that her testing was messed up, but somehow I was able to pretty much overlook that. It wasn't her main nurse involved, and I know nurses have a lot on them. Granted, the helpers should be a little more thorough, and I'm not even sure the two that messed up her urine were actual nurses, and ultimately, we were not directly affected. The episode to which I was referring was one I don't wish to re-hash. I will just say that it involved some very inconsiderate people and Clara was in no way involved...she was oblivious. Ultimately I just keep praying for a humble heart and a gentle spirit so that none of the other even matters. A good night's sleep probably wouldn't hurt either....

As for today...we met with  Clara's team of specialists around lunchtime. (Yes, Clara's food was messed with, once again.) :-) Overall, they say Clara looks very good and healthy. That is a big praise! Her renal ultrasound came out perfect...no calcium deposits. Woo-hoo!! Her x-rays look good...bones look much better than they did compared to previous x-rays. They are reducing her dosage of her medications just a little, for the simple reason that Dr. Whyte likes to operate on the safe side of things than have to deal with other consequences from too much medication later. Furthermore, they are changing our method. So instead of having to mix a powder with water 6 times per day, she will now take a capsule or tablet 4 1/2 times per day. That just feels much more manageable to me. When a kid is only awake for twelve hours a day, it is hard to get in 6 doeses of medication. This team of doctors will now be in charge of Clara's care, which means, no more trips to the U of M, but one big trip to the Shriners Hospital every year. We will also have to have blood drawn and a urine specimen taken to be mailed to Shriners every three months. The hard part is going to be getting the lab on board. Basically, they don't want the lab to do any testing. They have the lab draw the specimens, spin, freeze, and whatever else needs to be done to them, and then mail them here to this hospital where they will do the testing.

Clara will have hypophosphatemic rickets for the rest of her life. There is a 50/50 chance that her children will get it, too. She will only be dealing with the consequences of it in her own body until about a year after menses, though, and who knows? Maybe the research we have taken part in here at Shriners this week will help her future children if they, too, deal with the same disease. We are still unsure where Clara's came from. They will be drawing blood from me tomorrow to see if I am a carrier, and they said that they may want to test her sisters, as well. There is also one more genetic test (about the only one she hasn't had) to know, once and for all, if hers is a sporadic case, or if it was handed down to her.

The long term affects are also unknown at this point. Up until now, you were almost guaranteed a knee and/or hip replacement in your adult life if you had hypophosphatemic rickets. However, there has been no study done, yet, that follows up with the adults who have been treated the way Clara has. This Shriners hospital is the only facility anywhere that studies XLH the way it is being studied here. The study has been running for almost 30 years, and they are just about to start trying to follow up with the people they treated 30 years ago. They want to know if the outcome is the same if you were treated for the rickets, versus never having had any treatment. I think the only thing stopping them at this point is funding. The only thing they will say for Clara's future is that she will be short, but not a dwarf. Everything else is unknown at this time.

This is Clara, right before going in to meet with the doctors.

It does feel like there is some finality finally coming to our search for help for Clara. This has been 5 1/2 long years of doctors, hospitals, and tests. We don't have all the answers, but I think we almost have as many as we are going to get...I think I will just have to live with that. Everyday, I am feeling a little more peace about the whole situation. The biggest question that still remains is, "What about the mitochondrial disease?" That is a question to which we may never have an answer, at least until more research is done and more genes are sequenced. Right now they have Clara's testing classified as "inconclusive", which I think will line up with the way Dr. Kendall, her geneticist in Atlanta, has felt all along. The geneticist told us this morning that what is there, is a mild case. That is a good thing.

As far as Clara's pain is concerned, they don't have any real answers except, "That's just rickets." They do want us to meet with the rheumatologist here to possibly figure out some ways to help her. The biggest thing that doesn't make sense to me is: If her rickets is getting better, why is her pain level increasing? I asked that question, and they don't know.

At this point, my brain hurts. I feel like I have been holding onto this information for so long, and I am tired. Maybe with this new information and new care team for Clara, I can just let it go for a while. Some of our sweet Michigan friends have been sending the sweetest notes this week, (They timed it so we would get one every day...isn't that precious?) and today, the one Clara received had a place to list all the things that make her happy. One of her answers was, "Having a hospital that takes good care of me." I think one of the reasons she has been such a sport about the 24 hour urine tests and the special diet is because she understands that the doctors here need this information to help her legs not hurt. She has basically said that to me in so many words. This girl just takes my breath away. Such a jewel.

Some of you have asked how Jeff and the girls are doing. I haven't been able to talk to him much, but they seem to be doing really well. When I talked to Jeff this afternoon after the meeting, he sounded as tired as I always feel, but I think he's done a great job with the girls. Their school work is getting done, they're eating (They've had a little help from friends in that department....so thankful), and they all seem pretty happy. If you think about it, please pray for him tomorrow, as he will be taking the girls to co-op by himself. Last week was my first week and I was toast when I got home. I think we will all be glad to get back together. Clara told me today that she is missing her sisters. Two more days!

I would also like to thank everyone for your notes and messages via e-mail and Facebook. I am reading them all....and love them!! I just haven't had the time to respond to them all. Please know I am getting them, though. They have been such an encouragement to me. They help me not feel quite so alone in this great, big place. :-)

There was something really funny I wanted to share with you, but since this post is already so long, I'll wait until tomorrow. I am not sure what is on tap for tomorrow, aside from my fasting blood test in the morning, but Friday will be another very busy day of meeting with doctors and heading home!

 

And just for fun, some pictures of Clara in the RT room...her favorite place!

 

She has lived at the air hockey table!

 

She has thoroughly enjoyed the crafts, as well.

 

 



Thank you for your love and prayers.

Much Love,
Jeannie

Day 2....Urine Good Hands, Baby.

This girl of mine is pretty laid back and easy going, as long as you don’t mess with her food or her sleep.

 This morning, they messed with both.

 This is what her morning was supposed to look like:

5:00 am-Urine Sample

6:00 am-Blood work

7:00 am- Urine sample

8:00 am- Blood Work

9:00 am- Breakfast

 

What her morning actually looked like:

5:00 am- Failed attempt at urine sample and a meltdown because she felt like she did something wrong

5:05 am- (after the nurse left the room)- My angry 6 year-old with her thumb in her mouth said to me, “Mom, I thought they were going to wake me up in the morning!” (They really should install artificial sunshine on the outside of the windows with a switch the nurses can flip before they wake up the kids.)

5:15 am- another failed attempt at a urine sample, Clara is given a cup of water to drink (at 0-dark-thirty….YUCK!)

5:40 am- One more failed attempt

6:00 am- 2^nd nurse comes in; Clara succeeds!..But nurse forgets to put the hat in the toilet that was supposed to catch urine. Ooops!

6:02 am- Clara is now wide awake, dancing around the room,  and ready to play board games. I am ready to fall back into a coma.

7:00 am- Blood work

8:00 am- Another successful attempt at a urine collection, and Clara is about to STARVE TO DEATH...at least she thought so. "Mom, normally I get to eat as soon as I wake up." It's a gift my children have always possessed....being able to eat the second their feet hit the floor, unlike their mother who needs at least three hours and a cup of coffee to wake up before eating.

In light of the before-mentioned state of her stomach, the second blood draw was canceled, as it had to be done before eating, and she couldn't eat for an hour afterwards...after one more urine sample...which would have put her breakfast at 10:00 am. I was a little bummed, because I really wanted them to be able to have as much information as possible, but at the same time, I was thankful for their sensitivity to her situation. She is at the borderline age for needing that second sample, so this year, she gets away with it. :-)

Once Clara had eaten breakfast and the RT room was open, Clara was chomping-at-the-bit to go and play. That was my opportunity for a shower....a much needed shower. I left her in the RT room and an hour later, I was a new woman. However, I was not able to bask in the bliss for long. I took Clara back to her room, and in a round-about way, found out that Clara had been to the potty while in the RT room.

The urine saga continues...

They are collecting her urine every single time she potties this week, 24 hours a day. (Once she goes, we hang the hat up on a rack in the bathroom. Who knew there were racks for that?) It seems that the volunteer in the RT room took her back to her room to potty and handed her over to a nurse...a different nurse than the original one who lost her urine....and that nurse took Clara into her potty and

forgot.

to.
put.
the.
hat.
on.
the.
toilet. (sigh)

Because I am Southern Baptist, and somewhere deep in my bloodline there is a gene that makes me convinced that everything is my fault, my stomach was in knots. Hopefully their research on her is not totally blown...but either way, what was I supposed to do? I was in the shower!

I have been reminded many times today that as a Christ-follower, I am never released from the Great Commission...the whole world is my mission field. I don't get to take a break just because I don't feel like it. There were a few times today I wanted to lose my cool, to be a real jerk. Thankfully, by the power of Christ in me (because there is not enough power in me to keep me from blowing my top a few times today), I was able to bite my tongue, smile, and be loving to those around me. As a result, I was given the neatest opportunity today to get to know another precious mother here at the hospital. The burden she bears with her daughter seems almost unbearable....proof that God gives grace when grace is needed. She is a believer and is not wavering in her faith, but life is just hard for her right now. I talked to her for a long time in the RT room, and it so happened that we ate lunch in the cafeteria together. I think she really needed to talk.....and I really needed to listen. When lunch was over, we went to the parent lounge and prayed together. It was such a sweet time....a gift from the Lord..that I know I would have missed out on had a been a jerk to the person I wanted to be a jerk to just a few minutes earlier....and I have a new friend, to boot!

Clara also had PT today, which was unexpected, but fun! The therapist here gave me some great ideas for exercises to strengthen some of her weakest muscles, and ways to make it fun. I am always amazed at the creativity of Physical Therapists. I am also amazed at their hearts. I haven't met one yet who doesn't love the children she works with.

Clara and Ms. Donna, the physical therapist.

After lunch today, we took our trip to the St. Louis Children's Hospital. That place is fantastic! It is ranked #5 in the nation, and after just a few minutes there, I knew why. Clara made instant friends with Ms. Gloria, who checked us in, and gained a few more goodies for her loot. I really think I should have brought an extra suitcase for all of the gifts she's been given this week. She went to the hospital with her backpack containing a teddy bear and her toy laptop. She left that hospital with two new stuffed animals, a new pair of gloves, and six new princess stickers. Spoiled. Rotten. The ultrasound went great..took less than ten minutes. We won't know the results until tomorrow.

Leaving for St. Louis Children's

Clara with Ms. Gloria, our new friend at St. Louis Children's.

Tomorrow is a really big day. At some point right after lunch, every single person that has taken part in Clara's team (geneticist, nurses, lab techs, radiologist, physical therapists, etc.) will be meeting together to discuss Clara's case. We were told that they would talk for an hour or an hour-and-a-half and then call us in to ask us both questions. Please pray that my mind will be clear....clearer than it was the other day when I bumbled like an idiot to the geneticist, and that Clara will not be nervous, but will speak up when spoken to. After tomorrow, we might have some more answers, but most of our answers will likely come on Friday before we leave.

I do know a few things for right now.

1) They feel nearly 100% sure she can avoid the surgery on her legs...at least until she is a teenager. Her geneticist thinks her legs will straighten right up and she will never need the surgery. Praise the Lord!!

2)According to her x-rays, she definitely still has hypophosphatemic rickets.

As for the rest, I will post as I know for sure.

Overall, this is still a really productive trip. I am so thankful to be here! I must say, though, that getting a little taste of the outside world to go to the other hospital today made me dread coming back to our little room. Clara couldn't wait to get back, though....she is happy. Therefore, I will find my contentment. :-) For this week, it seems that "Home is where we hang our hat". :-) (You get bonus points if you get that one.)

Thank you again for your love and prayers. Your messages have been so encouraging!

Much Love,

Jeannie

 

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 fast...as 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!
Jeannie

Last Thoughts Before We Go

Suddenly, I want to change my mind...to stay home with my family.

Suddenly, I just want to say, "Never mind! I was just kidding! I don't really want to go!"

But I can't. I know this is what is best for my sweet girl.

Suddenly, for the first time in quite a while, I am angry. Angry that Clara has to suffer. Angry that the spirit that is inside my little girl is held back by the limitations of her physical body. And selfishly, that the only family vacations we seem to have revolve around a hospital visit or doctor's appointment. Would it be too much to ask to have a normal vacation like normal families? You know...like...to go to the beach? Or an amusement park? Or somewhere fun?

But that is not the life we have been given for now, and somehow in the midst of all of this, we have to focus on One. The One who created us....created our beautiful girl....and trust that He knows best. Trust that, somehow, this whole situation will serve to sanctify us...especially Clara.

Tonight, as I am finishing up packing, I have had a few minutes to stop for the first time all week, and that's when these sort of thought start taking over. Realizing how much I am giong to miss Jeff and my other three girls, and how long a week really is when you're trapped inside a hospital with a precious, and very talkative, six year-old. The realization that Clara is going to suffer....some more...albeit for a good cause.

My hope is still that we will get answers and a treatment plan that will work to get her our of pain and get her body growing normally. Ultimately, my hope is in the Lord. I know He never makes mistakes. He has allowed this, and He has also provided everything we need to take care of Clara.

I am especially thankful for our family and friends we love so much who have helped us, prayed for us, and loved us. Thank you from the bottom of my heart. Please continue to pray for us this week...Clara and me at the hospital, and Jeff and the girls at home. Thankfully, Clara is mostly excited. She is excited about flying in an airplane, and after a shopping trip with Grandma Jackie, she is well-equipped with cute pajamas for herself AND her Bitty Twin. She and I also worked together to sew a hospital gown for Katie (her baby), complete with a Shriner's Hospital logo iron-on....and those are the things that were packed first. Ya know...a girl has to have her priorities. :-)

I am hoping to update my blog each day...maybe even with pictures (if I can figure out how to do that on a different computer.). We have some sweet friends at church who have loaned us their laptop, so it should be much easier than having to leave Clara to go to the computer room.

Thanks again for everyone who has played a part in this trip. We love you so very much.

Much Love,
Jeannie