Claire Hughes: She's a year

Showing posts with label She's a year. Show all posts

May 6, 2016

Home for Mother's Day!

Claire is approaching two years old! So much has happened in the past two years, it's unbelievable. More unbelievable is that Claire's hand, which the doctor suggested would need a skin graft to heal properly, has healed on its own. (In case you don't remember or if it hasn't been mentioned, Claire's left hand was burned by a infusion of calcium that left the skin on the entire top of her hand dead). This surprised everyone and it is proof of all the miracles God has worked in our lives.

Another miracle is the fact that she was in and out of the hospital in two days (!). Apparently her dialysis catheter broke and she needed a replacement. So, she had what we believe to be her 15th surgery. They replaced the catheter easily yet she has two new scars. She woke up quickly and was off oxygen that night. She came home the next night (Thursday) happy as a clam. 😀

On an somewhat, unrelated note Claire's birthday is next week. Though she still isn't crawling or talking, she's made remarkable progress. She's finally big enough for transplant (and we're currently waiting to see if she'll be put on the transplant list. Doctor says we might have to wait until August when the committee next reviews her case, but he's calling them to see if they won't reconsider her sooner). She's babbling and eating semi-solid foods. She's throwing beautifully annoying two-year old fits when she doesn't get her way. And, she is incredibly curious; always wanting things Mommy and Daddy has for herself so she can figure it out.

Like all parents, we're proud of our daughter's progress. She's a miracle in herself. Thank you, everyone, for being with us on this journey.

And . . . Pictures!

April 16, 2016

Retry Post

It's lovely how technology seems to fail us at times. But woe is life.

Apparently, several posts that were supposed to have been loaded onto the blog over the past month have been "lost." Or so says my computer. Whatever.

The point is now that you, dear Reader, have a ton of pictures to look at. Probably not as much as there should be, but who cares?

Besides the pictures, an update: Claire is doing marvelously. She is happy and growing and has so much sass that even though she's not even two, can't say more than a few simple words, and can't crawl or walk, she can stop a person by looking at them and throw a temper tantrum better than a spoiled princess (even if that is what she is).

Nevertheless, she is happily spoiled and the family, besides tired, are also happy.

Enjoy!

March 10, 2016

It's life

Claire finally came home from her earlier hospital trip on February 15th, only to go back on February 21st. She had an ulcer that compromised half of her stomach. Though that seems to be fixed now, Claire also had an issue where an IV infiltrated and caused calcium to eat away at the skin on her hand. Mom and Dad have been told they will need to do regular dressing changes, applying medicine, until the dead skins falls and the new skin is ready for a graft.

We would like to thank everyone for their prayers and support. It's hard for us to see other children who are healthy or those who only have the short hospital visits. It's hard seeing two year olds walking and talking when our own two year old can't crawl or eat toddler food.

We know how this young, smart, but developmentally delayed child has changed our lives making us both better people. We only hope her life affects more than ours; that her purpose is as great as she is. We hope she helps you, in some way as you have helped her.

Thank you,

Mom and Dad Hughes

January 30, 2016

Merry Christmas, Happy New Year, etc. Part Two . . . Finally

Thank you everyone for your thoughts and prayers.

Claire is doing much better. We're still in the hospital, but she is needing much less oxygen support than before. Moreover, she is much more active and happy, though she complains (a lot!) about being stuck in bed. There is still no word on when she'll return home, but we're hoping it'll be soon.

Mom and Dad did, finally, get most of the pictures from Christmas and New Years gathered together to share with you today. So, that's what we'll do. More pictures and house pictures will show up in the "official" third post of this what-sounded-good-at-the-time-three-post-program to come whenever life doesn't interfere. (Insert polite laughter here).

Thank you, once again, for your thoughts. Knowing so many people care about our daughter and that her story may help someone someday keeps us going sometimes.

Truly,

Mom & Dad Hughes