Starting a New Blog

as I have exhausted all memory for photos on this one (Anyone see a pattern here? First, I drop and break my camera. Then I misplace my daughter's camera. Now, I try to upload new photos and get that warning box. . .). So, it's time to start that new blog. I've been wanting to do it anyway, but I was thinking I'd wait until after Lilah's surgery. However, her new life started on May 28th, when I first held her. On May 29th she was officially and legally my daughter. On June 6th she met her sisters and her Nana. So, I'm going to seal this blog and send it for printing so we have it as a scrapbook as well. You will find our new family blog at this address:
http://extraordinary3.blogspot.com

Another Happy Drs. Appointment

I took Lilah to the urologist today. The doctor was great, very with it and upbeat. She examined Lilah and is very happy with the repair that was done in China. Everything that should be there is, basically, but she will have a few tests in 3 months, after she recovers from heart surgery.

Also up after heart surgery will be potty training. I think this will be easy, as she knows her big sisters use the potty and everything they do, she wants to do:)

Sorry no pictures this post--I misplaced the camera .

My Girl is Double-Digits!

Madeleine turns 10 today(July 5th--a little late in posting)! She has matured beautifully. She is a confident, happy 'tween who loves her sisters, math, sports and crafts. She is a natural beauty and is learning how to deal graciously with adversity.

The adversity being the constant blisters in her mouth. It's been 3 years now. She's been on medicine since April, which has controlled the fever and sore throat, but does nothing for the blisters. She's been on predisone for 2 months, which does help with the blisters but doesn't completely get rid of them. She is not a textbook case for periodic fever syndrome. I bring this all up now because in a few hours, Madeleine will see yet another specialist. There is a slim chance that with the removal of her tonsils, the blisters could be cured. It should certainly take care of the fevers and sore throats so we can get her off that med.

After the doctor visit, it's time to party:)

Maddie had a wonderful birthday. In fact, she said this was her best birthday ever. I am so happy about this! I was a little worried she would be disappointed, as this birthday was not as lavish as others in the past. There just isn't the money for it and I don't think it was healthy, either, spending like that. (This month truly kicks off my year of spending morally. And living what feels like sacrificially-but that's coming from someone who was living in excess. I will be posting on this topic several times monthly as I know some of my blogger buddies are interested).

Doctor update: No good news for us. The doctor doesn't think having her tonsils out will help eleviate the blisters. She did say we can take Maddie off the meds, though, and if the fever and sore throat comes back in a pattern (ie. every 3-4 weeks) then come back to discuss a tonsilectomy. I'm happy to get Maddie off the meds, both were heavy duty. I am not happy that modern medicine has nothing to offer my daughter in terms of healing. I have exhausted every avenue (specialist) I can think of. All doctors feel we must wait it out and hope Maddie grows out of it (studies show kids do). I am returning to prayer -- this worked for a few months last year and I have no idea why it stopped as I didn't stop believing. . .

Happy 4th!

 Nana with her granddaughters (oops--Lilah's marshmallow fell off her stick--nothing funny about that).

 My big girls.

 And again, having found some lavender eye shadow (I think they teleported to the 1980s for that).

 In one of her favorite places eating one of her favorite foods (if you look closely, you'll see Maddie and Ava found her with the eye makeup).

 Hey, anyone for the pool?

 Lunch.

 I enjoy wearing my food. . .

 almost as much as eating it.

 It gives me a certain glow:)

 After my shower, it's on to another first--roasted marshmallows. Yummy!

And just a little messy.
Hope everyone's 4th is spectactular!

Catch Up

I'm usually much better about posting. But I dropped my camera. Sigh. It was a lovely little camera and I was happy with its performance (though I could do better, what with the photography classes I've taken and the time I've spent in the dark room...). I'm using Maddie's now, until there's money in the budget for a serious upgrade to a digital SLR.

So, our week in pictures:

Sunday

We're going to take a drive up the coast this afternoon, play in the sand, and then come home and have a BBQ.

But we started out with a little ice cream--really, I put it in a clean bowl with a clean spoon, but Lilah quickly transferred it to her play dishware and is eating it with a Tinkerbell spoon:)

Yesterday, the social worker came by for our first post-placement visit. It went very well.

I'm busy getting things together for our stay in the hospital next month--pictures of the family and house, ring pops and leg warmers...

Lazy Days

 We started with a little blocks...I'll wear anything for a hat, except a hat.

 Then went to Sea World.

 I got to try some cotton candy...

 and it was so good...

I started jumping for joy:)

A Big Day

I received the call from the hospital that we've been waiting for. Lilah's open heart surgery is scheduled for July 25th. We are grateful!

 We started the morning with our usual--hiding in the curtains--this time her sisters joined her.

Then it was onto a game of train.

Then to the park...

but it was too hot. We went home for lunch, a little lawn work, and then went to the pool.

Fun!

Last night we flew ballons (yes, we have kites, somewhere in the garage...anyway, those helium balloons are easier to control).

 What does a toddler do when she doesn't want to share--wrap the balloon ribbon around her tummy!

Today, we went to Chuck E Cheese: