The end to a great week! Baby Update August 29th

We had a great week followed by a great weekend.

Michael

• Has been bouncing and bouncing on his butt (he actually will get up on his knees)
• 17.2 lbs and 27.5 inches according to the doctor
• We thought he had an ear infection but was cleared by the doctor.
• After his afternoon nap, he was standing in his crib, barely holding on... but he pulled up (sooo proud!)
• is officially mobile. He is really starting to get around and even crawling/scooting out of the play area too!
• He has been trying to crawl into bed with Storm.

Emaleigh

• she is now growling like Michael (it's really funny)
• when she gets close to the ottoman, she is trying to pull up
• she has a top tooth (thinking the left lateral incisor) coming in. The bulge is huge and we can see while  under it. I guess she will skip the top front teeth for now. She is also chewing and chewing and chewing on the sides of her bottom teeth. She'll probably pop out a few teeth at one time...soon!
• We are doing a lot of brainstorming for setting up the CLOVES org. Ashleigh is starting to get the paperwork together.

I think that's it for now.

Grumpy and Chatty and a LOT of Development!

This morning was VERY interesting. My little man turned into "mister grumpy gills" (that's from NEMO) and Em was chatty as can be. Michael doesn't usually get a fever when teething but he had one this morning, so I guess that explains the grumpiness. These poor babies and the teething issues... they are having a tough time!

I think I'm going to switch Emaleigh back to 20 calorie formula, I haven't noticed an increase of weight in her arms and it's a pain keeping the mixes separate. I know I have to stop constantly and think... how many scoops to how much water, every time I do it (which isn't often anymore...maybe that's why)

Little Em - is doing terrific sitting from a laying down position, Tiffany said she's just popping up. As for grabbing snacks and putting them in her mouth, she's doing a great job too (it's obvious that Tiffany is working with them). Em is wanting to pull up, so I've been working with her pulling up on the Ottoman. I really dont think Em is going to crawl. now when on her knees, she just wants to sit. She'll scoot and roll but she's not interested in anything else.

Social Services took a preliminary report about Emaleigh and now it's time for the case worker and nurse to come out to the house to meet Emaleigh. Since Emaleigh has been listed as disabled, the state will pay for her child care, so this interview/visit is in response to that.

The surgical coordinator called from Boston and confirmed that Emaleigh is "on the books" for Surgery on November 3rd. As I said before, the housing is approved from 10-31 to 11-23, if needed. Thank you Liz, for your generous gift (the cost of the housing while in Boston) and thank you Rosemary for the "get to Boston and back" money. We will need to be in Boston earlier than the 3rd, to meet with the Anesthesiologist. The coordinator is working with Dr. Spencer to see how long Emaleigh will be in the hospital and if we can come home and follow-up with Dr. Rodgers at UVA for post-op care. Michael will be staying home with Grama & Granpa (& Tiffany). I really want Michael with us, but we know that we will have to care for Emaleigh and it will be too much especially if she is in the hospital. From what we understand, she will have casts to her knees for a few weeks after the surgery, unless something changes.

After all of my shopping and researching, I REALLY need to find a reclining "single" umbrella stroller. I'll check out some second-hand stores.

Let's talk about Michael!
This little boy is night and day with development over the past couple of weeks. He is grabbing snacks and getting most of them in his mouth (Em is definitely better)! He is doing the downward dog a lot (from Yoga) and is bouncing on his knees and spinning while sitting Indian style (so funny). He is almost there, pulling up. I barely have to hold or help him. I will say that I need to watch because he forgets to hold on especially when he finds something on the coffee table that he wants to play with. Last night I held his right hand and he stood. He was a little wobbly but he didn't act like he wanted to sit. As for moving, I tried to get him to walk and this was soo funny. He lifted his legs like he was going up stairs and put them down very deliberately. Crawling, I would say Michael is a couple days away from crawling. He is EVERYWHERE and nothing is slowing him down. He's not 100% sure of the fastest way to get there but it'll be soon! All I can say is... poor Storm (she's our Weim), she is watching them and she gets a little nervous when they get close.


With Love,
Adrienne

Thank you & a Baby Update

First, I wanted to say thank you again and again. Thanks for the donations, necklace purchases, prayers, and kind words. We are amazed with the amount of support that has been given. As Emaleigh's surgery approaches, please continue to keep her in your prayers. She has the best spirit and is such a joy to be around. I hope that someday soon you will "all" get a chance to meet her!

My little Em
 *** New Video*** http://www.youtube.com/watch?v=vd--fWXK1Qs
The new thing for Emaleigh is babbling. She'll talk and talk and talk. Mostly saying Ba Ba over and over, then SCREAM, then back to babbling. It's ok if you don't have a headache. What I'm doing is showing her the bottle when she says Ba Ba.

Tiffany let us know that Emaleigh is now sitting up from a lying down position. The work with her paid off! Basically I've been showing her how to pull her smaller leg under her (her big leg isn't very flexible) for a few days, so it looks like she's got it!

She is also doing terrific moving through the house, not really crawling but pushing and scooting. Last night Michael went toward the spare bedroom and Emaleigh toward the kitchen over and over again. So, they are mobile but not too fast yet, I'll be in trouble soon!

She is also now into size 3 diapers :)

I'm still waiting to hear back from Boston about Surgery details.

My little M

He is starting to move both legs and his arms so he's crawling but not crawling. He crawls sometimes but maybe it's faster to move both legs then both arms? He'll get there :)

We've been working with Michael, to get him to pull up. I'll sit him facing the ottoman and sit his hands on it. He has the motion and is pulling up! We did let him drop down carefully and now he has learned that he has to hold on. (The crib rails have been covered)

We haven't seen any more teeth yet. We checked out the manufacture labels on the old car seats and it looks like the babies cannot be over 29 inches or 22lbs. So I'll have to do another measurement soon. Michael is very close.

:)

Emaleigh with no socks

Hi!

I wanted to post a picture of Emaleigh without socks, so you could see the true scope of the problem and the purpose of her surgery in November. I have a problem seeing her feet like this so it's extremely hard for me to post this picture. I believe it's important for you to see "why" we want to go to the specialists in Boston even though, I'm sure there are many surgeons capable closeby. Unfortunately since CLOVES syndrome is so rare, we would rather put our trust with the doctors at Children Hospital in Boston regarless of the overwhelming cost difference.

I cannot say it enough, of how grateful we are to everyone for the support, donations, prayers, and well wishes. Emaleigh is extremely lucky!


With Love,
Adrienne

Fundraising - MaryKay

Hi Everyone,


I just wanted to let you know that an old friend, Danielle, (she's not old... we're old friends) ;) has offered to donate a portion of her proceeds (for the next 30 days) from her MaryKay website, to Emaleigh. If you purchase MaryKay or wanted to start using it, please check out her website at: www.marykay.com/daniellemhong


She is also looking into some other options for fundraising as well!


Danielle - thank you so much!

FundRaising...Mary Kay

Hi Everyone,

I just wanted to let you know that an old friend, Danielle, (she's not old... we're old friends) ;) has offered to donate a portion of her proceeds (for the next 30 days) from her MaryKay website, to Emaleigh. If you purchase MaryKay or wanted to start using it, please check out her website at: www.marykay.com/daniellemhong

She is also looking into some other options for fundraising as well!

Danielle - thank you so much!

A few new things....

A few new things to report and of course something I forgot to post last week.

Michael update:

• He is rolling his tongue over his bottom gums and we do feel more teeth starting to break through.
• He is sitting from a laying down position. The other day, we were practicing and he pushed up with his arms and swung his feet under him. It was great to see him comfortable moving like this!
• He started to growl, probably my fault - but it's better than the alternative of high pitch squealing. We LOVE his little noises! (He started this last week)
• His hair is really starting to come in thick now ~ daddy is jealous!
• He is just over 17 pounds but is 27 inches, so we will have to do the whole installation of the new car seat soon.
• Michael LOVES bath time and toys. I think he'd sit and play with the water and toys for hours!

 Emaleigh Update

1. Emaleigh seems like she's been teething for a month now. She has bulges where her eye teeth are thinking about moving in and she's had a low grade fever off and on for 2 weeks now. It's making her pretty miserable. I just wish these teeth would come in already!
2. Yesterday, Tiffany told me about a little episode with Emaleigh. She's pretty feisty so it really didn't surprise me, and yes, I would have disciplined her like Tiffany did (by telling her no), but it would have been hard not to laugh (quietly). Tiffany told me: M and Em were sitting in the floor facing each other playing...Michael reached over to grab Emaleigh's pacifier out of her mouth and she gave him the most serious look, sat straight up, pulled her arm back... and just smacked him right in the face! Now we know that Michael is terrible about taking toys from her and we actually started separating them more when playing(forgot to tell Tiffany) because she's a hot head. I've NEVER seen her get mad like this about a toy... but we're talking about her pacifier (you will hardly EVER see Emaleigh without one)
3. She is having a hard time getting into a sitting position like Michael, but we try to help her. She knows what to do but she can't because her right leg and left her foot are not flexible enough (or too thick)  to get it under her easily.
4. She is about 16 pounds and is really gaining some additional fat in her right leg. Ugh... how much is thing going to grow? I'm hoping for more length!
5. Insurance Insurance Insurance ~ this is on the top of the list of worries. I never thought that "we" would be affected by health care woes. I'm not sure Obama's plan will help us just yet, I'm still researching but she will have coverage so there is a HUGE weight off of my chest!
6. Thank you so much to everyone for the contributions, prayers, support, and guidance. Obviously this is just the beginning but just to know that we have all of this support, is amazing.

Here is the picture I took down and replaced with a newer one:

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