Saturday, June 18, 2011

Garage Sale Benefiting the UMDF (our first prewalkathon fundraiser)

Reagan was up most of the night last night...and so were we. The worst part of it was that we were already exhausted from our garage sale yesterday and we had to get up early for the second half of the garage sale today!! On a good note...we've met some wonderful people throughout the course of these two days and were able to spread awareness about mitochondrial disease! Yesterday we met a woman that is the inpatient EEG technician at Texas Children's Hospital (and I later realized that I recognized her and she recognized Reagan's picture as well). Then I met a woman whose 11yr old grandchild is special needs and still undiagnosed (and has many similarities to Reagan). I gave her all of my contact information and told her I'd be happy to talk to her daughter about mitochondrial disorder. Then another very sweet woman that lives in our neighborhood came by and we spoke with her for quite sometime about Reagan. She has a 50yr old autistic brother and said she could really relate to what we were going through and would be happy to help out with Reagan anytime we need it!! We've had many people tell us they would keep Reagan in their prayers and one lady even stopped and prayed with Mike today. Then this afternoon one of our neighbors down the street is a member of a motorcycle club and some of them came by on their bikes and brought us a $100 donation! They were all super nice and told us they'd keep Reagan in their prayers as well! So even though it was exhausting and it was beyond HOT and humid, we met a lot of of wonderful people and raised over $700 just at our garage sale alone thanks to many generous donationed items from our great neighbors, Reagan's therapists and nurses (our neighbor Melissa had her own garage sale benefiting the UMDF as well). On the Reagan front...she's still miserable. Not crying anymore, but just very tense and serious with lots of chorea. She's about the same as yesterday...she does better in her chair by herself...when you pick her up, she gets more whiny and upset. I don't know if she's just trying to tell us how miserable she is, or what. We were actually supposed to have a nurse this morning from 6am-1pm. Of course when 6am rolled around, no one came. I get a call from the nursing agency at 6:40am saying the nurse is having car trouble! Meanwhile we're having to juggle Reagan, her morning medicines, and a garage sale all at the same time! Then around 9:30am I get another call and they say she's going to come out. The nurse (who has never been here before...and probably never will again) gets here at 10am and says that she still plans on leaving at 1pm! So even though she's 4hrs late...she's only going to stay for 3hrs!! Whatever. I'm not surprised. It was still nice to have someone to watch over Reagan, even if it was only for a couple hours. She took a decent hour plus nap today, but nothing ever since. She's pretty wired tonight. Moving, moving, moving...I can't imagine that she's going to sleep much tonight. Mike is leaving tomorrow for a business trip and thankfully my Dad has agreed to drive down and stay with us to help out! On a good note, I'll get to see my dad on Father's Day...on a bad note, Mike will be leaving us early Father's Day morning! Please continue to keep our miserable little girl in your prayers!!!

Our fund raising machine neighbor Melissa and our other neighbor Jackie who is going to help us plan a golf tournament for the UMDF!

Posing with our neighbor Tammy (on far left) and her motorcycle club the Buffalo Soldiers (Reagan wasn't feeling well enough to pose for a pic).


Jamie - AZ said...

Wow what a successful day as far as the garage sale goes. That is great news. Sorry you had nurse troubles and also the princess wasn't feeling very good. Keeping you all in my prayers. Hope the new medicine will make a difference soon. Hugs!! :)

Zoey's mom said...

Great news on the garage sale and not so great news on my little Reagan girl.Hoping she turns a corner in a day or so and so glad you have your dad coming.Your lucky like that,with both your parents,blessed in fact.

You have a whole lot of people surrounding you that love you guys and Reagan too.Even strangers have come to jump on board with fundraising and participating,all because of you and that sweet child of yours.

Prayers continue here.As always.

Stacie said...

Not so "miserable"... I see her surrounded by some amazing parents.

Teri said...

I love the photos! ...and the motorcycle group! So glad to hear the garage sale was such a huge success! I'm praying for our little angel to feel better and sleep well... see you tomorrow...

Cathy said...

I always follow your Reagan's blog and I really feel for your moment to moment struggle to find her happy spot, however elusive it is. Also, as a prn home health RN, it gives me insight on the parents' view of the nurse. Because I may only see a child every 4-6 months, I always seem to mess something up. This week, some liquid dripped onto the child's shorts when I was pushing a med and flush in a GT. I thought it was water. Next thing I know, Mom is sniffing the short and washing them out. It's really hard to come in when your not familiar with the lay out of where stuff is, because it takes so much longer to do stuff. Once I had to call a mom to find the feeding bags...I hadn't looked under the bed.
I am not defending the nurse by any means. I want to please the parents and I try to learn from my mistakes as defined by the parents. It's tricky as every parent has different concerns. That's what makes it challenging. Mostly I go home feeling good, but not everytime.
I hope you find a nurse you can depend on so that you can leave Reagan with someone you trust. Don't worry, I don't live where you do!
Have a good, quiet night.

the Grandma said...

WOW! Yea!!!.. for the Garage Sale and Yea!....for all of the wonderful people who showed their support for the fundraiser.
Also......yea!...for Cathy! I am so encouraged by her comments because it makes me realize that that there are still some providers that care and make an effort to do what they can to really offer support to a family. I know the uphill struggle that you have been through and I have witnessed too many apathetic caregivers! Therefore, when I see one that really cares....I say "God bless you and we only wish that you were here!" Love to all....the Grandma