Monday, October 7, 2013

one great dad and the end of Wisconsin

Man oh man did we ever learn a bunch in Wisconsin.

And man oh man again was I ever glad Dave and I got to do this together.

I mean, he could have done it singlehandedly, but I would have been a mess.  He always asks such good questions and check out his fathering skills here:
 ...here we go a little closer:
...and this is where Lu, but the time we got to the third ultrasound of the day, was starting to get frustrated and Dave had her talking on her banana phone to the purple and red zebra at the zoo about her day.

Oh, and then there was a good long wait in the cardiologist's office while they read all the scans they had:
Yeah, I'm pretty sure Lu and I were both pretty lucky to have Dave around.

We learned so much and met so many wonderful people.  I have written all the details from my notes over on the "I Love Lucy" blog HERE and HERE and HERE.

On our last night we had a nice dinner with the other families who were also there in Wisconsin with their BBS kids.

Brenda and Nell and a couple other women made it up sooooo nice for us all, complete with Halloween inspired food.

...and face-painting.
Lucy had fun meeting new friends.  These girls are the daughters of one of the ladies helping to make this clinic work.
I'll add pictures of the BBS kids who were there when I get them, hopefully soon.

Here are Nell and Brenda who put on this great dinner:

After the dinner we headed to Lucy's sleep study.

Dave and I were cracking up with how many wires they attached to this girl!!
 ...and with how calm she was through the whole process (her new "Busy Town" DVD worked magic I tell you!)

This is how she went to sleep:
 And woke up all refreshed for some more appointments the next day including Physical Therapy:
 Occupational Therapy:
 Some art work during Gastrointestinal appointment...
 ...and leading into her Endocrinology appointment as well.

All the technical information and much more detail on all that day entailed over HERE on the I Love Lucy blog.

We were in a huge rush there at the end to run pick up her new orthotic and say our goodbyes before we ran to catch our flight, but were able to get a picture with these wonderful mothers before we left:

And a very grateful goodbye to Dr. Haws and Brenda (who put our schedules together).



As we ran off to catch our plane I wondered to myself how do you ever really, truly thank people like that enough?  

For making your life that much better.  

And helping change the course of the life of someone you love so dearly?  

We are wanting to help Dr. Haws with setting up a "National Registry" for kids with BBS.  There are so many unknowns, and so far we have such a small pool of people affected with BBS to draw information from.  There are sixteen different genes affected with BBS.  Lucy has BBS 10.  Others have BBS 1, 4, you name it up to sixteen (there may even be more now).  We'd love to see how different genes affect different kids and try to put some sense to which symptoms manifest themselves in which ways.

The goals of the registry would be the following:

1) Help collect data which would be uploaded so researchers all over the world could access that information to help figure out how to help these kids more appropriately.  They want to find and understand the needs to the best of their abilities.

2) Give families with BBS a list of things they can do and be aware of for their children and actually work with kids to help facilitate needs.

3) Figure out phenotype differences and the natural progression of BBS and work toward finding and linking up with appropriate clinical trials.

They are shooting to have 300 in the registry within two years.  Dave and I want so much to help.  We are working with the BBS board to try to figure out how to fund-raise for this.  There is so much involved in creating a database.  It needs to be web based but with capacity for use of the visually impaired kids and families.  It would help figure out who can benefit most from clinical trials of TUDCA or other new medicines/procedures that could help these kids.  At this point no one center has enough people to do this.  

We want to help Dr. Haws make this a reality and a lot of work lies ahead.

Until then, how grateful we are to have all this information under our belts, and a renewed drive to help Lucy and all those families affected by BBS.

We drove through the beauty of that gorgeous fall weather mixed with rain back to catch our flight in Minneapolis with hearts full of gratitude.

I wish any pictures could do that glory justice.

Claire was so excited to see Lu when we got home she could hardly stand it.
They spent an hour talking and playing with all Lucy's new loot until we scooped Lu up and tucked her in bed after a very eventful week.

7 comments:

  1. Wow what a great guy you have. He seems like a great husband and great Dad.

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  2. I'm so proud of Lucy for being so calm during her sleep study! I've done my own and it's hard to sit still while someone glues stuff to your face and head!

    You guys are an inspiration.

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  3. Lu is so blessed to have BOTH of you as parents, so involved and supportive!!! Wisconsin sure does look beautiful in the Fall, I'll have to put it on my bucket-list of places to visit!

    p.s. My son is diabetic, and there is nothing better than getting together with parents who are in the same boat as you, you have an immediate connection and understanding of one another, glad you had that opportunity!

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  4. She is lucky to be so loved. :) and those pictures above of her smiling as happy as can be made me happy. She is definitely an angel!

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  5. such GREAT info. Thanks for sharing. How grateful we are for all those people who organized this. What a wonder! That hug at the end is priceless. So is Lucy's art. How lucky is Lucy to have you and Dave? Blessed beyond words!

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  6. You are such a special family. Lucy is a brave girl!

    A couple of random things: the Haws were in my ward when I lived in Gilbert years ago. It looks like he's gone on (and continues) to do some incredible work.

    Also, I came across the Daughters of God Mormon Message and was so excited when I saw a gorgeous flash of you with your camera. Such a powerful video.

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  7. I can't help but admire you and your husband for being such incredibly devoted parents. Lucy is a lucky girl!

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