Hospital World

Lily went in for a cardiac cath on Monday November 30th. We ended up staying for 4 days total. It was going well the first time Dr. Wax, Interventional Radiologist, came out. Then he said that he found some collateral arteries . So he coiled/plugged two of them. That should have made her oxygen levels higher. Finally he came out to say that they found blood in the lung in the lower left lobe which was blurry on the xray we later saw. In the end, we came in with Lily sating in the mid 80's and left with a kid sating in the 78 to 84 range and added Viagra/Revatio to her list of drugs. It was either that or go home with oxygen. I am waiting to hear from our card about the discussion that had about further steps for Lily they had in conference on Monday about her.

The best thing about our stay was again the nurses. They rock!!! It was strange being back in the PICU for the first time since 2007 after her Glenn. They were fantastic. Andrea, Rachel, Megan, Tommy...kept me calm and thinking about other things like travel and language, two of my favorite topics. aside from LILY!!


One of the nurses said that she knew how to take care of these kids in the hospital, but when her son was born, she had no idea! I would have never thought of that. 5 years ago I never would have guessed that now I would be able to understand when someone says " We are going to go in an explore the LPA and coil any extraneous arteries." I could sound like a nurse of a doctor now.


Speaking of medical issues, my cousin Cindy was featured on Mystery Diagnosis on the Discovery Health Channel this past Monday night at 9pm CST. She has MPA or microscopic polyangiitis. I had no idea how absolutely painful and invasisve this disease can be to your life. I hope Cindy stays in remission! Get more information at http://www.vasculitisfoundation.org/microscopicpolyangiitis.

Lily is starting to want to stand now and not fighting us when we help her to do it. She still fights the PT/OTs though. Big surprise.

Our Anniversary

Jim and I have now been married 6 years yesterday. It almost came and went without us both acknowledging it. We had a good laugh over it. We've been so busy with the move and Lily.

I was married once before. It was rather like being on an elevator with someone where you just happened to be there with at the same time. You weren't "together", you were just there. He would get on and off occasionally while I just stayed there, alone. And eventually I gave up and got off, and never looked back.

Eventually I met and married Jim. He is the most sentimental, thoughtful, creative, funny, sensitive man --not to mention great dad -- that I know. We have been through alot in the past year. And it seems like we have had to say that every year -- my cancer, Lily's birth and the following chaos, moving, and some other things I won't go into. But the whole time he has always been there. It is just fact that we are in this together. We didn't exchange cards or gifts this year, but just knowing that he is here for us is the best anniversary and life present I could ever get.

I love you Jim.

Fall Fun 2009

Just chillin'...LITERALLY!

I pick THIS one!

We took Miss Lily to the Cosley Zoo nearby again to see if she would pay attention to the animals. She didn't. I think my husband had more fun looking at and photographing a few of them. I was busy wondering if she was warm enough because I forgot to bring a blanket. We have been using a Peg Perego stroller that one of my sis's-in-law gave us that Lily loves. It actually has a cover that we could zip around her legs, but I forgot that too. What kind of mother AM I?? Well I know!:)))

Mommy and Lily

Daddy and Lily among the pumpkins

Moving On

Life throws crveballs ocassionally and one is that we had to move. We are still getting settled in altough our furniture made it here 2 weeks ago. I'm sad that Lily won't have her own swingset anymore and the dogs won't have a larger place to run and poop. But it's been good so far. We got to paint all the rooms the way we wished they had been at the old place. Lily's room is now shocking green/yellow color. It's Valspar's Tender Bud, but didn't turn out quite like the paint chip. Nonetheless, what's important is that it matches her personality! Bright! Happy! Feisty!

Speaking of That Girl, she is babbling up a storm lately with her own long sentences of Lilyisms. Duke-ah duke-ah duke-ah, namenahnamenahnamenah...In the morning I just lie in my bed and listen to her when she wakes up. She is definitely my daughter and Jim's being that she talks sooo much. Now if we can get her to say actual words. Our DTH has been impressed and says that she says things very clearly which is a good sign.

On the AT front we are getting a gaittrainer (KidWalk), a stander (Easy Stand) and a a chair (Leckey) which are all awesome. She has tried all but the stander. We have a great equipment guy that our Respiratory PT uses for Ei and his day job and he is awesome. Vince (www.pinnaclerehabsolutions.com)doesn't just walk away after fliping some switches and knobs. He makess sur eyou are absolutely comfortable withe the equipment and that the child is comfy in it too! We were going to go through Easter Seals for some communication AT evals, but they are months behind. So we are looking to Rehab Institute of Chicago which has a decent rep. We have a friend who brings her daughter there for ortho.

Please pray for our friend Moriah, www.momentswithmoriah.blogspot.com, who is a another little Charger who has spent almost a year in the hosital. She is much more complicated than Lily and she and her family are fantastic, warm people.

May 2010

Just want to make sure that any Illinois families are aware of this conference.

I received a flyer that said:

Save The Date
Family Leaders Conference
Illinois Family Leaders Collaboration Group
Presents

The Fourth Annual
Parent Conference

Resources and inspiration for adult family members and caregivers of children with disabilities

Saturday, May 1, 2010
Villa Maria, lake Springfield
Springfield, Illinois

Childcare will not be provided

For more information contact Mary Smith at STARNET
mk-smith@wiu.edu

I went to the one last year in East Peoria and it was so nice. Great families and information. Got to meet some other Charge parents there:).

Stomach Flu

Anyone else having problems posting photos on their blog? I keep doing what I always do and get a ton of HTML garbage...

Lily has just not been herself all week. Well, it sort of started the week before. She just was very crabby constantly. This week she threw up twice and was lethargic and very quiet. She is just now starting to get her babble back and some energy. We got to cuddle alot lately which is pretty new for us. This morning we laid in my bed with the Melissa and Doug farm puzzle on he rlap and watched Word World and Super Why. She watched every moment and I sang and read along so she could feel the vibrations. She seemed to enjoy herself.

We Love Autumn

So it's been awhile again. thanks to all of you have written and or posted too. i will get back to you. We are in the process of moving. I won't go into detail but we are moving over the month of September and at the end planning on having a giant garage sale.

We saw Lily's cardiologist last week and she said that we can wait on the cath for 6 months! Plus Lily has finally passed to 20lb mark! She has also passed gas:) LOL. Ok it's late. She has been doing ok on this new Elecare formula that we started at the end of July. She still fights eating by mouth. She has had a few very bad gassy episodes in the past week. We will have a meeting with her nutritionist coming up soon so we shall see. We just had her last annual IFSP. We have a new therapist on the team -- a Respiratory PT. I would have never have thought of this until Lily's nutritionist asked me to take her shirt off to see how she breathes. She referred us to Brian who is just excellent. Lily is not breathing correctly because of her heart surgery scar (as well as lots of other things) -- she doesn't use her diaphragm much and uses her neck and shoulder muscles much more. I think that the next Charge Conference should have Brian's mentor, Mary Massery, speak on this issue.

And I finally gave in....and joined Facebook. i guess Twitter is not far behind. Suddenly I have so many friends:)). I hope all of you ar ehaving a wonderful Labor Day weekend!