Family Weekend with pics and updates on Surgery.

First - Surgery in Boston....
We are planning our trip to Boston the weekend of Halloween. It looks like Michael is going to be staying here with Grama and Granpa. The temporary housing will cost $30.00 a day for 2-3 weeks; this will depend on how her surgery goes. So we're thinking about $650.00 just for housing not including meals or gas to get us there. I will have to take non paid time for this trip as well.

I want you to know how important all of you are to us and say thank you for all of the support. We will not have the chance to squeeze a golf tournament into our schedule before her surgery. If you want to help us in anyway, please let me know. The necklaces on this site are terrific because 75% of the proceeds go right into Emaleigh's "CLOVES" account and will be used for expenses like these and/or medical bills. (http://humantribeproject.com/tribes/em-blankenships-tribe/blog_posts)

Thanks for the information Rosemary, they do have a Ronald McDonald house but it's for cancer patients only. The good news is that the hospital has the housing we were approved for, that I mentioned above and the floor plan looks nice.

The weekend - was terrific, we had a chance to hang out with Michelle, Eric, and the kids AND Jamie and the kids :) (Grama and Granpa too) The pictures turned out terrific! See for yourself ~ these are just of the babies to start :)

Back to Emaleigh!! - As I post this, a friend (Liz) called to let me know that she is going to send money to pay for the cost of the housing in Boston. I cannot express how grateful we are for all of the support. We are truly blessed to have you in our lives!

Everyone has been so supportive, between the kind words, prayers, purchase of necklaces, and the willingness to help is amazing. I couldn't ask for anything else ~ except maybe....a baby that isn't sick ;)!

Thank you again!!!!

With Love,
Adrienne

Weekend Fun with The Blankenship and McConnell Clans

We are having a great weekend so far. We had a friend of Grama's take some family pictures, but didnt swim with the babies because it was a little chilly. All of the bigger kids swam. We made our way over to Amazement square too and the babies did ok. Michael slept most of the time but we managed to get a few pics with him.

Emaleigh sucking on the puppets tongue

EM and em sitting with the penguins

Em watching Daddy play TV soccer (look in the background)

Em playing on the wooden horsey

Looking in the funny mirror

Daddy and Michael playing on the horsey

Michael and Auntie Michelle relaxing on the farm

Me - Em in an artery

Vv's party at Olive Garden. Uncle Larry telling Em no beer for you

Baby Update 8/11/10

We we have a few things going on.

Em -
We're still trying to organize a golf tournament to raise funds for Em's surgery. We might have to wait until the Spring but the plan is still for a night golf tournament.

Em had an appointment with the gastroenterologist today and she looks terrific, so he was happy to see that she is gaining weight and muscle tone. She is still thin in her arms and upper chest but I think she's that's just part of her condition. We received the ok to give them a few different types of formulas without having to transition them over.

We had an appointment with community services to get Em's Medicaid, Physical Therapy, and Disability paperwork rolling. We wont really start Physical Therapy until January.

Michael -

This week Michael has learned how to push himself into a sitting posting from laying down. Grama found him sitting in his crib playing. So it looks like we need to lower the crib mattresses for both babies.

We have a busy weekend planned with the Blankenship/McConnell clans. I hope to have some great pictures soon!

Surgery

The surgery is tentatively set for November 3rd. We will need to be in Boston at least by the 2nd, maybe even the 1st, to talk to the Anesthesiologist. I need to call them back and ask if the surgery will be inpatient or outpatient and if we will need to stay in Boston for a couple of weeks. 

 

I'm thinking the surgery will be inpatient and that we need to stay in Boston for post surgical care for 2 weeks.

 

Now to work on:

• Care for Michael (it's going to be hard to leave him with Grama for 2 weeks)
• Housing while in Boston
• Insurance Information
• Pet care

 

 

With Love,

 

Adrienne

August 6th! Baby Update

Em Update
Well I tried to schedule Em's surgery today but the lady is out of the office. We're hoping for a November surgery date. They did tell us we might need to stay in Boston for 2 weeks for follow-up purposes but we are hoping to follow-up here at UVA. We'll see what they say.

I need to work with our insurance to find out how all of that will work. We really feel that she needs the surgery done in Boston. They have experience with CLOVES and we know this is where she needs to be!

As for fundraising, Chris agrees with Tracey, we should try to do the night golf tournament at Ivy Hills. They have a pavilion and have experience with night golf. If we cannot schedule a date this fall, we can always wait until the spring.

As for the non-profit, Ashleigh offered to help to get this up and running. We know we really need something and certain disbursement rules kept me and Kristen (Riley's mom) from jumping in feet first. It will take a few months to create the organization, but once it's up and running, we can offer tax breaks for people when donating money to our cause.

Today, we discussed the need to find a way to educate people about CLOVES syndrome. It's a new syndrome but if you ask a doctor anywhere but Boston, they do not have a clue.

So this is the short-term plan. I'll post another update as soon as I schedule her surgery.

Michael Update
Michael is doing great, he is starting to get on his knees and move a little. Not quite ready to crawl but we're excited that he's catching up.

The boy is also a "tag" boy. If something has a tag on it, the tag will be in his mouth. It's so funny! Tiffany told me about tag blankets so I found some online and had them monogrammed. They came today and He LOVES his!!!

Fundraising - Night Golf Tournament

Well,

We are still working on some fundraising ideas to help cover some of the medical costs that insurance will not cover this year. We are planning to schedule Em's surgery in November with Boston Children's Hospital.

The newest idea is a "night" golf tournament in September or early October. Chris is thinking about the location. We will use glow-in-the-dark balls and glow sticks on the greens. I haven't heard of a tournament like this here before, so we might have a great turn out.

If you have any other fundraising ideas, please let me know. As I learn more, I'll post an update :)

The Human Tribe Project

Matt & Tracey, friends of ours, found a site that will allow people to purchase a necklace and 75% of the proceeds will go toward Emaleigh's medical expenses.

I have posted the link to this page on the right under important links.

Here is the link, if you need it:
https://humantribeproject.com/tribes/em-blankenships-tribe