A couple of cute Videos

Both Emaleigh and Michael are doing great! I'll post an update soon. I did want to post these video's now!

Michael Snorting: http://www.youtube.com/watch?v=AlERH4onv6w
Emmie trying to snap her fingers:

http://www.youtube.com/watch?v=f_wXwW-4HhQ

August - Where has the time gone?

We are doing absolutely wonderful. Mr Michael and Miss Emaleigh are growing like weeds and we love to see them grow and learn each day. These babies are our miracles and we cherish every moment!

Let's see - where do we pick up? Michael decided to escape from his crib, right after we lowered it 2 inches. He was sucessful, so within 2 days, they are BOTH in a toddler bed. They LOVE the freedom. I wont lie, the first night was pretty tough, it took about an hour of us going into the room and telling them it's night night time while laying them down in their beds, The next night was 45 minutes, then 35. We're still working on about 30 minutes but the room is safe so they can tucker themselves and fall asleep whereever they want. With that in mind, this is what we have seen this week:

They both are talking up a storm and repeating everything (we're trying to be careful). They are both running through the house and Emmie tries to keep up. Michael can drink milk again, so the allergy is gone thankfully!



Emaleigh has a surgery coming up in April to remove 1/2 of her feet and move tendons. All of the doctors recommend that this is the best thing for her right now. We'll have to manage other symptoms (right now... through surgery) as they become a problem in the future.

I finally caught Emmie on tape dancing again: http://www.youtube.com/watch?v=E3wzida4PQc (I'll post it below)



Chris and I have been super busy with the foundation and we hope to start fundraising soon.

With Love,
Adrienne

21 Months and I dont have babies any longer

I can't believe my little ones are 21 months old. It seems like yesterday they were snuggling with me. We have moved into the terrible 2's. Almost! Both Emmie and M are about 23 pounds and are really starting to get tall. We have competitions for mommy's lap and daddy's chair. It's cute until some little boy gets physical. Both are learning time-out and that seems to be working fairly well.

Vocabulary wise, it's amazing what they can say and I'm glad that I've been able to keep bad words to a minimum. Signing is good and Emmie is still doing great and moving along. M isn't very interested but we keep trying. Grama has him counting to 5 (ok...1,2,3), we'll have to work with Em on that.

M has really been wrestling lately, which is great that he wants to roll around with me BUT he is head butting me constantly, so I'll have to work with him on that because it kinda hurts.

We're doing better in the pool, it did help that the pool was 86 degrees the other day. Em and M had a great time just floating around with Grama, Mommy, and daddy. I think this weekend Em and M learned how to kick their feet, finally!

I try to play hide and seek with them every night, M is a great seeker and Em has learned to hide, it's usually the same place everytime but cute that she'll sit in the corner and wait for me.

Last night I started reading a book before bed. They were super excited to see mommy "playing" with the books. I think I was handed 5 books and then each of them grabbed a book and flipped through pages like mommy did. It was very sweet.

M is back to regular milk as of today, I hope his cow milk protein allergy is gone now. We had an episode in Cincinnati, where a full Pediasure caused hives all over his body. The good news is that he wasn't itchy. After some benedryl for a couple of days and Rice milk for 4 weeks, we hope to be back to normal.

Em's surgery is tentatively set for November 12th in Cincinnati. I'll have to follow up with them in a couple of weeks, to see how that date works out. She'll have all of her toes and metatarsals amputated and her tendons will be moved. Recovery time for this surgery is 2 to 3 months and I have no idea of how long we'll be in Cincinnati or if we can follow up with doctors here. I'm a little nervous about this surgery, not only because it's her 3rd s but it's going to be tough on her. I'm not sure how to keep her from walking or if she'll have walking casts. I just dont know, so I'm putting together a list of additional questions for Dr. McCarthy and Azizkhan. We know that we have to do this surgery sooner than later, it was very clear by both teams in Cincinnati and Boston that the surgery needs to happen before the age of 3 or 4. So that's where we are. I have nervous energy already!  We'll start talking about her right buttock when this surgery is behind us.

May/June Update

I know, It's been a while for this update but we're doing great! Sorry

Michael and Emaleigh both are talking and talking. I think they are doing very well developmentally. We bought them little four wheelers and they are finally starting to push the button and ride as of yesterday.

 

We had a nice vacation with our friends Tracey & Matt (they have twins that are 3 weeks older). I have included pictures from that trip.


Both Em and M are still signing away. Michael isn't super interested but he is starting to really talk in sentences. We're not really sure what he is saying but Emaleigh seems to understand :)

We are working on swimming we just haven't had much time with teaching them how to kick and float. Hope to have two little swimmers by the end of the summer.

They both love to swing and blow bubbles. We have kiddie swings on the porch and we go out there often to let them play!

Yesterday Emaleigh climbed their mini play place and went down all by herself, she was so proud. Michael is a little scared on his own, that is only because when climbing he fell a few weeks ago.

Styes... UGH! Michael seems to be having a bunch of problems with allergies and styes. The doctor prescribed some meds and we'll do some allergy testing when he is 3. I think he had 6 or 7 over a two week period. Poor guy, he was miserable in the sunlight.

Eating... Em has been doing better eating but she is still a picky eater, we're working on it and yesterday she sat in her high chair until she ate her hot dogs... I felt bad after watching her because the skin is a little thick on the all beef premium dogs, so she was eating around the skin. She did eat them though.

The  foundation is coming along and we hope to have our 501c3 soon. I have changed the website if you are interested in checking things out (http://www.clovessyndromefoundation.org/)



 We are heading off to Cincinnati to see doctors about Emaleigh. Dr Adams is there and she does a lot of the research for CLOVES symptoms and we will also have the ability to talk to her about Emaleigh's overgrown right buttock and right leg. We hope to get another opinion about surgery on her feet as well. Boston wants to amputate 1/2 of her feet.







I have uploaded two videos, one of Emaleigh and Michael playing in the car, and the other one is our interview with WSET for Children's Miracle Network giving an update! (look in the brown section below for linked videos)

Take Care,

Adrienne

New Videos - April 2010

I'm posting a quick update but mainly a couple of  new videos below.

Both Em and M are walking everywhere and talking up a storm!!! They are both up to 22 pounds too!
I have Michael's Walking video and Em's dancing video (too cute)

Michael is walking!!!!

As of yesterday Mr. Michael is walking!!! I tried to get some video footage but he wouldn't cooperate, I'll keep trying. He said "baby" and "ball" this week as well. He is so cute trying to keep his balance. We are so excited for him - knew it wouldnt be long!!

Emaleigh is saying ball, bay bee (my little girl with the southern drawl - thx grama), and many more words... She did almost fall at Tiffany's and said "Woah". I'm waiting to hear that one! Emaleigh is walking like a champ! It's only been a couple of weeks and she is walking... almost running everywhere! I forgot to add: Little Miss Em is so cute when she walks. It's almost like she doesn't know what to do with her arms so she waves them and grabs her head, butt, and/or back. Very Cute



Last night both Em and M kep walking out the play room and I guess making sure we were still there.

Playing with baybee and.... playing catch-up

I heard it!!! Emaleigh said Em Wee and Baybee yesterday. Tiffany and Grama told me she has been saying baybee but I didnt hear it until last night. Emaleigh is almost running now. She is doing terrific with walking.

Off to Boston in the morning for the official MRI results with Dr. Fishman and the CLOVES family gathering. We are so excited to meet some of our CLOVES friends.

Michael is trying to catch up.. He isn't walking yet but he is pushing himself more than ever trying to walk. It wont be long!

Both of these little ones are a little "mommy" clingy lately. Not sure if they are just hitting that stage.

I'll post another update soon!