Wednesday, July 18, 2012

New York - It must be the water!

Hi everyone,

(***There are pictures and video with this post that may need to be viewed online rather than in just email.)

Well Wednesday is here (just barely), and I am happy to report that our visit to NY was both therapeutic and just plain fun.  The "water" not only makes the bagels so good but may be responsible for giving Lucianna some "good days".   We had two days at the beach with the grandparents, one afternoon at Aunt Nancy & Uncle Manny's backyard pool and lots of time with friends and family.  Lucianna absolutely loves collecting rocks at the beach and digging in the sand.  Bella is turning into quite the swimmer and I think she'll be swimming on her own soon!  Thank goodness for their Daddy...if I had my way, they would be in life jackets until they are 30.

Pictures from our visit

"Nonna" scooping jelly beans into an envelope at her work for the girls...please notice the size of her jelly bean jar.  Lucianna was literally pushing Bella out of her way!

 Such pride!

 Seriously happy kid...(see, told you she likes jelly beans!)

Time at the beach and the pool really made a difference in her spirit and her mobility:

There is no one that loves Ariel more than my girls...I am certain of it.

Nonna, Papa and Me

Mommy in the pool!

How is she doing?

She had several "good days" in NY.  She did a pretty good job at getting around independently and had a really nice disposition.   Below is an example of a good day, albeit, she is challenged with the step as you'll see.  

The car ride home (5.5 hours) was tough - even though it was a breeze for us with no traffic.  She doesn't complain during the ride, but once we got home she could not walk or stand and struggled on Monday as well.   I think the lack of motion while on long car rides and sleeping/resting really takes a toll.  We've tried stopping and doing a stretch, but it never seems to be enough.  She's had two trips to NY since the symptoms started and the car rides have caused her to regress a bit.   I am not happy about that since going to NY is very important to us so we will continue to try different things to ease the burden on her joints.

Today it appears that her hip is causing her some pain.  We haven't really noticed the hip bothering her much prior to now, but I have seen her wince a few times in pain when she turns her leg wrong or moves funny.  Tonight she struggled at bed time more than usual due to what seems to be increased hip pain.  She is also difficult to get to bed/sleep at night.  She wants to sleep with us now.  I believe she wakes in pain at night and it's frightening for her to be alone.  Therefore, I roll with the punches and hope it's a phase and it passes. She should not suffer alone in the night...period.

Have you ever opted to get a "used" book off Amazon?  They have options for new and used.  Well I have been wanting Dr. Lehman's book for weeks now but it's $33 and I prefer not to spend that much.  Well I found one for .66 (cents) used and $4 for shipping!  It took a couple of weeks to receive but I can't believe I got it for $4.66!!!  It's in great shape--it's an old library book so it even has the clear plastic cover to protect the book jacket.  Anyway, I had to share that in case you ever want to save a few dollars on books!  

Book:  It's Not Just Growing Pains: A Guide to Childhood Muscle, Bone and Joint Pain, Rheumatic Diseases, and the Latest Treatments" by Dr. Thomas Lehman

I am trying to learn about what to expect with the Naproxen, what the next steps are if it doesn't work, what are the other treatment options, and a million other questions that I have that I cannot seem to find out on the web. Dr. Lehman is one of the top pediatric rheumatologist out of NY. His bio is incredibly impressive and he's definitely in the top of his field. (Just like our doctor.)

Food for medicine and plans for the school year:

Daddy did a ton of research on what foods reduce inflammation and which foods/vitamins have healing effects. He's great that way. Yesterday he came home from a trip to Costco and the grocery store with tons of interesting foods! Lucianna does indeed like fish...but not Quinoa. lol.

We also have an email out to her school. She was slated to attend preschool this year at the same school Bella has attended the last 2 years. We need them to understand her limitations and see how accommodating they will be to us and her. We certainly can't afford to pay for in-home daycare for her "not so good days" AND school tuition. Additionally, we need them to understand that there will be times that she cannot walk and find out if they can work with us. We hope so, because we love this school.

There is so much to consider. Many of the things I used to think about have changed - I just think about different things now. Besides thinking about what the future will be like for her, I have to consider short term activities too. For example, I had planned a play date for this Sunday a long time ago but now realize our original plan to visit a park would not be good for Lucianna. So I came up with a puppet show and ice cream. I wish I could just take them to park, an indoor moon bounce place, or even outside in our yard...but I need to rethink a lot of things so that I can accommodate her limitations. Is it bad to say that I want my old life back? Sorry...pity party moment.

Thank you so much for reading. It is very helpful that everyone is updated on how she's doing without us having to repeat ourselves many times. Please feel free to join as a follower or for the email alerts.

I know one thing - one day, I will look back at these times and feel grateful that Lucianna is finally better.

Lucianna's Mommy

Love, Lucianna


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