Thursday, January 9, 2020

Heading to D.C.

I wanted to update everyone and let you know that we are headed to Washington, D.C. on February 9th. Ana will see doctors in clinic on the 10th, and then be admitted on the 11th. If testing goes well, she will be discharged on February 14th. At that point, if surgery is deemed necessary, we will return home until it is scheduled and insurance stuff has been submitted. We are not sure how everything will work out at this point with travel and Shey being without PTO, but we know that God has a plan and that He is faithful. Ana wants both of us to go and that is our prayer. 
Anyone interested in donating to Ana’s Special Needs Trust can do so through the donate tab.
Thank you all for your prayers. 
 #sharingiscaring #whymito

Friday, November 22, 2019

Here We Go Again...

The Collaborative Team at Children’s National met this week and it has been decided that Ana needs additional testing, under anesthesia, at their facility. They are also consulting with gastroenterology. Once the testing is complete they will have a better idea of what they can do to help alleviate the pain that she is having. I will not go into further details on what they are thinking at this point to refrain from causing unnecessary worry on Ana’s part. We are leaving it at that for now, since nothing is for sure until after the actual tests are complete. 
We have lots of concerns that revolve around the logistics of all of this. I will file FMLA, but Shey has no available PTO or resources to be able to accompany us. Unfortunately, with government contract employees, you are at the mercy of whomever the government gives the contract to and this particular business has decided on no PTO until September of 2020. As for me, I should be ok for the testing and then it could get sticky once they know what needs to be done next. If surgery is the only option, then that will mean out-of-state surgery and recovery. With Ana, recovery time is unpredictable. To further complicate things, we have the holidays and the potential of having to make two trips pretty close together. Thankfully, I have a little PTO and my work will add two weeks of full pay before the short term disability pay kicks in... which is not great pay... but nonetheless, it is something. Add school and selling a house into the equation and it gets pretty overwhelming. And then there is Christmas... We do care about that being special for her. 
We are waiting to hear back from the team on dates for the testing and consults. They will then refer us to their concierge who will work with us on housing once we arrive in Washington, D.C. The Ronald McDonald House will obviously be the cheapest option if they have rooms available. 
For now we wait and pray. Pray for answers. Pray for the financial situation as a whole. Pray for the timing of everything. Pray for everything surrounding this situation. Pray for a cure for mitochondrial disease. 
Sorry for the absence in updates on this page, but we are using Facebook more often than Blogger these days. This is the latest. 
Her Facebook Link: Help Cure Ana Maria

Thursday, November 19, 2015

Times Flies!

Where does the time go? This week has flown by and for that I am thankful! Ana is doing great! Prayers were answered and things look great. I know everyone won't understand what that means, but Ana is at an age where I have to carefully choose how things are shared with everyone... for her sake and her privacy. Just know that God answered yours and our prayers because He knows all and that is all that really matters! Oh, and yes, that means NO SURGERY!!! Yay!!! We are super happy about that!!! Again, thank you so much for your support and prayers!!! We look forward to driving home tomorrow. Please pray for safe travels!
Some great friends took us out for dinner!

We got to visit family a couple of hours north of Columbus!

Hanging out with Ronald at his house!

Sage trying out the RMH slide!

Ana trying out the swing at RMH!

Ana had her hair cut in the RMH spa!

Monday, November 16, 2015

Wow... just wow...

Things are going well. We have met some great people up here and Ana's treatment is going great!

Today the girls were extremely bored and asked us to take them to a mall to walk around. We used google, found a mall, and off we went. Once we arrived, the girls were bummed because it was an "outdoor" mall... and of course when you are from our town, outdoor mall = outlets, which to my kids equals no fun. lol

I told them to give it a chance and they might just have some fun! We started walking around and they found a Barnes & Noble... after a half hour or so in there they were ready to explore some more. We ventured back outside and they found a good ol' fashioned telephone booth!

Not long after that they found a massive Christmas Tree!!!

All of this peaked their curiosity and they were ready to look around. They found a lego store and loved looking at all of the play sets... and then they found IT! They found an American Girl store!!! They have always wanted to visit an American Girl store... I think every little girl does. 

They were so excited to look at everything. They haven't ever had an American Girl doll... but they have seen the movies, read the books, and looked through the catalogs! They knew what this was all about and they were super happy to be in it! We explored every nook and cranny of that store... they spent well over an hour looking at everything. They chatted about which doll they would pick if they had the money to buy one. They picked out accessories that their dolls would need and outfits for every occasion. They had so much fun! 
I felt bummed for them... it's every little girl's dream to go into an American Girl store and pick out your very own American Girl doll! After about an hour and a half I told them that they could get an outfit for their "off-brand" dolls at home. They were so grateful to be able to do that. Ana knows the financial strain of being sick and having to travel... she thought about it and said, "mom, it's ok if we don't get anything." She's so considerate... she's always thinking of others first... her motives are always so pure and God is continuously blessing her. 
As we were finishing up this adventure, an employee asked the girls, "If you could have any American Girl doll, which doll would you pick?" Ana responded, "Grace" and Sage said, "Josefina."
And a few minutes later the unthinkable happened! 
God chose to bless her beyond what she thought imaginable. He used the special people at this store to bless her and her sister with their very first American Girl dolls! I think we were all in shock through the whole thing! It was almost unbelievable! Ana and Sage just couldn't believe that these were their very own dolls! 

As soon as we arrived back at the RMH, the girls wanted to take them straight to the princess room! 

But that wasn't where it ended... some sweet friends took us to dinner tonight and when we returned to the RMH, there was a package for the girls! An American Girl employee dropped off the accessory kits for each of their dolls! 
To those of you who made all of this happen for our girls, Thank You! Thank you from the bottom of my heart. They have been smiling about this all day! God's gifts are so sweet and it was so encouraging to see Him bless the girls for their obedience. They didn't whine or cry when they were told that we couldn't buy them the dolls... they were content to just be there. 

Saturday, November 14, 2015

Safe and Sound

     We made it to Ohio at about 3:00am. Things are going well at the moment. We were able to check-in at the RMH and we are extremely thankful! Thank you to everyone who prayed about that! We are running on very little sleep, so this post will be super short. 
     Ana was seen at the hospital today and I will let you know more as the week progresses. 
The Hot Chocolate Race is in Columbus this weekend.
This race benefits the RMH, so Gumy
from JVC paid the girls a visit!

Gumy gave the girls headphones and then
they got to enjoy Thanksgiving Dinner
fixed by some awesome volunteers!

Relaxing in the RMH library after a long day.

Wednesday, November 11, 2015

Ohio Bound

     I wanted to take a moment to catch everyone up to speed. I am extremely tired and I apologize if this post is all over the place. 
     Ana was seen at MUSC last Friday and the motility specialist was in agreement that the children's hospital in Columbus, OH was our best option for her current issues. 
     We will be there for treatment until the 20th and hope that this will either correct her current issues or get her by until the summer. She will not be having surgery. If she does need surgery then it will happen on a return trip, but NOT this trip. 
     We did speak to the RMH and it is looking like we will most likely have a room when we arrive tomorrow between 1:00am and 2:00am. God is so faithful! 

Prayer Requests:
  • Travel mercies. We are driving at night and will be arriving in the wee hours of the morning. We have never been to Columbus and pray that God will make this an easy trip. 
  • For our children who are staying home. Two of them have minor illnesses and need prayer for quick healing. 
  • For my mom who will be holding down the fort while we are gone.
  • For success with the treatment. Pray for the doctors wisdom and that God would guide their decisions.
  • Pray a special pray for all of those who have come along side us through all of this. I could never fully express my gratitude to you, but know that I thank God for you.
     I will update once we know more. Thank you so much for your prayers and support.

Almost done packing medical supplies! 

Matthew 6:25-34

25 For this reason I say to you, do not be worried about your life, as to what you will eat or what you will drink; nor for your body, as to what you will put on. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they? 27 And who of you by being worried can add a single hour to his life? 28 And why are you worried about clothing? Observe how the lilies of the field grow; they do not toil nor do they spin, 29 yet I say to you that not even Solomon in all his glory clothed himself like one of these. 30 But if God so clothes the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more clothe you? You of little faith! 31 Do not worry then, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear for clothing?’ 32 For the Gentiles eagerly seek all these things; for your heavenly Father knows that you need all these things. 33 But seek first His kingdom and His righteousness, and all these things will be added to you.
34 “So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.

Thursday, November 5, 2015

Quick Update

Thank you to those of you who have supported Ana through prayer, donations, and meals for our family!
Our church family constantly amazes me. 

     Ana's contrast study was completed Tuesday and we are officially headed to Nationwide Children's next Thursday. We are hoping to hear back from the Ronald McDonald House today about whether or not we have a room there. Tomorrow morning we are headed to MUSC to see the new motility doctor. We spoke with cardiology about the syncope episode, and they aren't going to change anything until we get back from Columbus.

Prayer Requests:
  • Pray that we can stay at the RMH in Columbus. This would lift a huge financial burden! 
  • Pray for travel mercies tomorrow to Charleston and for next week's travel to Ohio. 
  • Pray that her appointment tomorrow is beneficial to her care.
  • Pray for Ana's heart. Pray that the doctors can figure out what is going on with it and how to fix the problem.
  • Pray for all of our needs to be met financially for this trip. 
  • Pray that the doctors in Ohio can find a bowel regimen that will work. 
  • Pray for our kids that will stay home with my mom.
  • Pray a special blessing on all of those who have so generously supported our family.