EB Race & Halloween
Last week was EB awareness week. On Friday Kendra, Lacey and I drove to Winston-Salem, NC to meet Jonah and his family and also the Ringgold's (Bella's family). We had such a wonderful time eating and talking with everyone. I have to admit it seemed a little weird going there knowing so much about 2 families that really don't even know me back. Although after being there 15 minutes that didn't seem to matter anymore. They were all very welcoming and great to talk with. We have been following these families for so long it was great to finally meet them.
Ali (Bella's sister) & Jonah
Tim and Ali
After the EB gathering we drove the 2.5 hours home and woke up early the next morning for our EB awareness 5K race. It was a very chilly 32 degrees that morning with frost on the grass. After about 1/4 mile I couldn't feel my face, hands or toes. By about the 2nd mile I was regaining feeling everywhere but my hands. Next year gloves will be a necessity. Even though it was cold it was totally and completely worth it to get out and support such a great cause. I figured if these little kids can endure pain everyday I can endure the cold for 30 minutes.
Kendra and me before the race with the shirts we had made.
We had lots of people ask us questions about the kids on the back of our shirts. We wore them all day long and it was a great conversation starter for us to educate people about EB.
Me, Lacey and Kendra after the race
The race will become an annual thing and we hope to help out more with it next year and try to get more support and awareness for EB. The 3 of us are currently working on sending out a survey to the hospitals in our region to see if they have any kind of EB protocol in the event they have a baby born with EB. Our goal is to educate and possibly make EB protocols for these hospitals so they can properly care for these delicate babies. That was the biggest issue the families we know seemed to have was that since this disease is so rare no one in the hospitals knew how to initially care for their babies. So we are excited to try and bring awareness to the hospitals in our region. We will keep you posted.
Moving on....
The week before last Eli had his very first preschool field trip. It was to Sky Top Orchards. We had a wonderful time looking at all the apples and pumpkins. My favorite was the hot apple cider and the apple cider doughnuts!!!
The boys!
Eli - 3.5yrs
Liam 1.5yrs
However the frog was a little irritable because he wasn't feeling very well. The night before we had decided to take the kids out to look at the progress on our house. After that we went out for dinner at Outback. Liam seemed a little on the quiet side and upon sitting down at the table I noticed he felt a little warm. We decided to eat quickly and get him home for bed. He wouldn't eat anything and kept putting his head on the table. So I picked him up to hold him. Within about 5 minutes he puked ALL OVER ME!!!! Even though I may be a nurse I do not do well with vomit. Jared usually does the clean up and I take the kid to the tub. Not so much in this case. Luckily we were by the side exit door and I was able to easily sneak out of the restaurant. We got our food to go and left the waitress a generous tip. Liam never threw up again and his fever was gone by morning. Okay enough about puking....we met up with friends from work and their kids to go trick-or-treating.
Ladybug, Spiderman, Pirate, Harry Potter, Dragon, Ninja, Bumble Bee, & Frog!
Aren't they all so cute!
Kids trick-or-treating!
Our lot
Pad for the basement dug out.
From a distance
and one of our kids new best friend - meet Lily!
Lily is Jared's parents dog. Eli took this picture of her - she is posing quite nicely! The kids love her and like to throw the ball or a stick for her. I'm afraid my kids may want a dog after this. I like dogs, I just don't want to have to take care of one....right now I have enough kids to take care of. Okay this is long I know - Goodnight!
Ali (Bella's sister) & Jonah
Tim and AliAfter the EB gathering we drove the 2.5 hours home and woke up early the next morning for our EB awareness 5K race. It was a very chilly 32 degrees that morning with frost on the grass. After about 1/4 mile I couldn't feel my face, hands or toes. By about the 2nd mile I was regaining feeling everywhere but my hands. Next year gloves will be a necessity. Even though it was cold it was totally and completely worth it to get out and support such a great cause. I figured if these little kids can endure pain everyday I can endure the cold for 30 minutes.
Kendra and me before the race with the shirts we had made.
We had lots of people ask us questions about the kids on the back of our shirts. We wore them all day long and it was a great conversation starter for us to educate people about EB.
Me, Lacey and Kendra after the raceThe race will become an annual thing and we hope to help out more with it next year and try to get more support and awareness for EB. The 3 of us are currently working on sending out a survey to the hospitals in our region to see if they have any kind of EB protocol in the event they have a baby born with EB. Our goal is to educate and possibly make EB protocols for these hospitals so they can properly care for these delicate babies. That was the biggest issue the families we know seemed to have was that since this disease is so rare no one in the hospitals knew how to initially care for their babies. So we are excited to try and bring awareness to the hospitals in our region. We will keep you posted.
Moving on....
The boys!
Eli - 3.5yrs
Liam 1.5yrsHALLOWEEN - This year we had Harry Potter, a Ninja, Spiderman and a cute little frog.
However the frog was a little irritable because he wasn't feeling very well. The night before we had decided to take the kids out to look at the progress on our house. After that we went out for dinner at Outback. Liam seemed a little on the quiet side and upon sitting down at the table I noticed he felt a little warm. We decided to eat quickly and get him home for bed. He wouldn't eat anything and kept putting his head on the table. So I picked him up to hold him. Within about 5 minutes he puked ALL OVER ME!!!! Even though I may be a nurse I do not do well with vomit. Jared usually does the clean up and I take the kid to the tub. Not so much in this case. Luckily we were by the side exit door and I was able to easily sneak out of the restaurant. We got our food to go and left the waitress a generous tip. Liam never threw up again and his fever was gone by morning. Okay enough about puking....we met up with friends from work and their kids to go trick-or-treating.
Ladybug, Spiderman, Pirate, Harry Potter, Dragon, Ninja, Bumble Bee, & Frog!
Kids trick-or-treating!For those curious here are some pictures of the progress on our house.
Our lot
Pad for the basement dug out.
From a distance
Footers poured and block delivered!
I don't have the picture uploaded from today but there are foundation block walls there now.and because I couldn't resist - a cute picture of Liam at the park!
and one of our kids new best friend - meet Lily!
Lily is Jared's parents dog. Eli took this picture of her - she is posing quite nicely! The kids love her and like to throw the ball or a stick for her. I'm afraid my kids may want a dog after this. I like dogs, I just don't want to have to take care of one....right now I have enough kids to take care of. Okay this is long I know - Goodnight!
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