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!!!

January can't come fast enough!

It has been a while since I updated this blog.  These last few months have been extremely hard on me and my body.  Hoping that January will bring a better year to finding answers and a new me.  I have an appointment with Dr. William Snape on January 20th in San Francisco to see if I meet the criteria for a pacemaker to be put in my stomach.  I am really hoping that this doctor appointment will turn out tons better than the UCLA one.  I have been so nauseated and vomiting multiple times a day that I really feel that the pacemaker may be my only answer in fighting this terrible disease.  I wish so bad that I could just get up for one day and not throw up; just one day that I don't have to run to the bathroom in a hurry.  My kids are getting older as the days go by and I'm sad I'm not with them.  They see too much and know way too much about a mommy being sick.

So, onto 2011!!  Let's hope and pray that this will be a turnaround year for me.  Thanks for all your love that you show me!

Me, myself and my machine~

I have a nutritionist now!!  YEAH~   Thank you so much to Katie McDermott that made the recommendation to see Merin Kinikini at IHC Medical Center in Murray.  Katie also suffers from Gastroparesis severely and I pray every day that she can feel some comfort.  It's no fun fighting this horrible disease.  Anyway, Merin and her assistant, Hilary, have been my lifesavers.  They have not only taken care of me physically, but they understand me emotionally and that helps me so much.  I am now attached to my favorite machine, that I love to hate, 24/7.  I was given a different formula made from Nestle and it seems to be helping me tons.  Also, with the G tube inserted into my stomach I seem to be less nauseated and I am able to drain my stomach anytime I feel pressure or pain.  I'm glad we made the decision to put the tube in even though it was a 3 day hospital stay.  I'm still in some pain from having the tube in but that is to be expected.  I have pain all the time with my Gastroparesis...  so this is nothing new.

The Standard Examiner Newspaper did an article on me with the hope that we could get some additional awareness to the public about Gastroparesis.  Here is the link if anyone wants to read the article:
    http://www.standard.net/topics/health/2010/09/12/syracuse-womans-life-without-eating-gastroparesis

With the newspaper article being published good news came our way.  We are so grateful to Nestle Corporation for calling the paper and giving them our personal information.  They contacted us and we filled out the paperwork for the formula to come to me free.  Nestle has said they would send my formula to me for free, but unfortunately, this has yet to happen.  I suppose everything takes time and a process of getting things approved etc.  We are still hoping they pull through.  It would be such a huge blessing.  I have gone months without proper nutrition because of my health insurance denying me this.  Even though I despise being hooked up to the machine, at least I now know the food will be there and I have a way of being fed without worrying so much about the cost and what affects it is having on my family.  I will be forever grateful to Nestle.  Please cross your fingers this all works out!

I also wanted to mention the 5k run/1 mile walk we are having on October 9th.  It will be fun to have so many friends and family around and a yummy breakfast that I can SMELL and you can EAT!!

Thanks for being here for me everyone.  I love you!

Changing of the tubes!!

First and foremost, I need to say "thank you" to so many of you that came out and supported me and my family this weekend. We had a huge turnout for the Spaghetti Dinner and Auction. I was able to see lots of friends and neighbors that I haven't seen in so long. I appreciate everything that was done to put on such a huge night. There were so many people that helped and gave of their time and I love you so much for that. Thanks for caring so much about me~

So, today I'm headed back up to the hospital to put an NG tube in for decompression. They are admitting me because of the amount of pain I have whenever they mess with my tubes. The NG tube should be a temporary one until they see if I can handle the pain. If all goes well, they will put a G tube into my stomach on Wednesday or Thursday. I will still have the J tube for my feedings but the G tube is to help with decompression. I have heard alot of good when people have the G tube in so I'm hoping that it really works for me. I have been told that with the G tube in and staying hydrated I would feel sooo much better! I really hope so. Hoping and praying this will be a good week.