Emaleigh and Michael

Emaleigh and Michael

Sunday, August 29, 2010

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.

Thursday, August 26, 2010

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

Tuesday, August 24, 2010

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.

:)

Saturday, August 21, 2010

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

Friday, August 20, 2010

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!

Thursday, August 19, 2010

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: