Yet another... trip.

Traveling to California has become 'not so enjoyable' anymore for Chels.  The trips are hard on her body and it takes an entire day to recover.
Was seen by Shelly Gray, Dr. Snape's NP, again today.  Yuck, another gastric emptying test also.  Test didn't go so good and unfortunately the pacemaker seems to be barely working.  It had even shifted a little which means the kids may have jumped a little too hard on her on one of their many jumping fests they like to have.
She will return back to CALI in November for some extensive testing.  This should be pretty much a week long of tests that do not sound fun at all.  We trust Shelly and Dr. Snape's office completely and know they will do their very best to help Chelsea.
Her family is growing up so fast and Micah started Kindergarten.  Can't believe they are getting so big.  Micah is playing soccer and l o v e s the days that his Uncle Zach comes to play with him.  He is still growing out his hair until his Uncle Tye gets home from his mission.  He hasn't had a haircut for almost an entire year.  We will see who holds out longer...  him or us.  It looks beautiful and any girl would die to have hair like his.  Chelsea loves her downtime with Maili in bed and cherishes each time she lays by her and they watch movies while Maili talks and talks and talks and talks.  It's adorable.

Thanks to everyone for caring!  We love you.

Cali. a g a i n!

Wow, we knew it had been a while since we updated the blog but hadn't realized that it had been months and months.  

Chels has been extremely sick these last couple of months so I am going to do the blog completely now.  So, hi everyone...  it's Sherri, I would be the MOM!  :)

I will update you on these past couple of months~  Chelsea was seen by Dr. Snape in January, insurance approved the pacemaker surgery (although we're still fighting portions of the charges) and she traveled to California for the second time the week of March 10th.  She had the pacemaker implanted on March 11.  We can't say enough good about California Pacific Medical Center.  They def. went above and beyond in taking care of my daughter.  After staying for a week and regaining some strength we headed home. 

The pacemaker worked for a couple of weeks but by April we knew she needed adjusted.  Her appt. was set to come back in May so we waited.   We found out that Jeremy's sister was set to graduate the first of June so they then decided to postpone California until the first of June.  Even though they had good intentions and really thought this would be okay it was extremely hard on Chelsea.  There have  been many, many, many days where she has not  been able to get up out of  bed and I think by the time she went  back to Cali. this time she was worse off than the first initial visit.  It was fun for them to visit family again though and sometimes these are things that Chels needs to do even though they are hard.  She needs to start living again.

So, the fabulous Dr.s in Cali. adjusted her pacer to a 7 and we should see a difference really by this next week.  She is scheduled to go back in August...  Yeah!!  maybe this time we'll take the kids...

Thanks to all that continually keep Chelsea in your thoughts and prayers.  I wish I could say that we have a handle on the disease..  maybe not yet, but am always hoping so.  We consistently pray for more funding for this horrible disease and hope and pray every single day that the doctors here at The University of Utah (which is a research hospital) will study more because the answers are right there in front of them.   Why is it that the doctor in CA can look Chels straight in the eye and say "we have options and we have solutions... we will get through this..."  but one of the best gastro docs in the state says, "sorry....  I'm done, don't know what else I can do for you"

We realize every second of the day that we are not the only one hurting in life.  We all have our challenges that we live with.  Please know that we pray daily for you all too! 

Thanks for being our strength !!

Sherri 

CALI FOR NI A!!

I'm here in San Francisco for the second week in a row.  My incredible doctor is running a few more tests on me and then by this Friday, January 28th, all the paperwork should be submitted to insurance for approval or denial of the pacemaker surgery.

It has been really rough for me to travel so long and two back to back trips are excruciating.    Let's hope it is all worth it!

In thinking of something positive to come out of these trips I can tell you I was able to meet the funniest little Asian lady selling pearls on Pier 39.  I got a good laugh out of her and she got some good money from Jeremy!! That and finding yet another JUICY store was a little bit of heaven!

Keep the prayers up friends...  I feel like this has been such an emotional roller coaster.  I hope one day soon I can say it was all worth it.  I miss my babies, they miss me.  I want to start living again!!

Ten days and counting~

I see Dr. Snape in exactly 10 days.  Traveling to San Francisco this coming Sunday.  Travel is extremely hard on me and I'm kind of freaking out about it.  It's exhausting and needless to say I've been  so, so sick this last week.  I haven't been able to even get up out of bed to spend 10 minutes with my babies.  I feel so tired...  mostly sick and tired of being nauseated and vomiting all the time.  I know I'm dehydrated but to put any more through my tubes after a feeding is just too much.  I wish I could go to the hospital and they would just 'FIX' me.  The days go by and I don't know what is harder, the depression or the illness itself.

I'm hoping by the 20th we will at least have some answers.  I'm ready for a change!!!