Just some pictures (for Aunt Becky especially)

Note to Travel Group

Here's a note I sent to our travel group. I thought I would share it here too to bring my blog buddies up to date.

I am glad to hear from everyone too. I have been following the few blogs that I know, Jadyn is one of those so I have been seeing all of her great pictures. Melissa and Alyssa both look very healthy and happy. I can tell they have both gained weight and their hair is growing out! I can finally get a little ponytail holder in Lila's to attach a bow so it will stay in.

Lila is doing really well. People keep commenting on how well adjusted she seems. She STILL wants Daddy when she's tired or scared but she knows she has to put up with me too! We really have a great bond now. She's funny and goofy and we were just saying again how she's the perfect match for us.

Gerry's still on family leave, he goes back next Monday. That will be a big change for all of us but we're ready.

Lila and Grace are sisters so we have a lot of drama but a lot of love, hugs, and giggles too.

We had x-rays of her colon on Friday, it was awful. They strapped her to a board so they could position her during the process so she was terrified. I can only imagine the memories of having the same x-rays done in China coming back to her. I was so thankful that I was there with her this time so she didn't have to go through it alone. They said our next step in the diagnostic/treatment process will be a biopsy of the lining of her colon. I have to talk to the doctor's office in a couple days about that.

TTYS
Chrissy

One giant leap...

The tiny things are so important in this adoption journey. She came running to me today with her arms up to be picked up. I was filled with joy that she has come so far from the scared child in China who only wanted Gerry. I looked at her today and said "Lila" she then put her hand on her chest and said "yiya". She said her name! She has only said mama and tai jien up to this point. She also said "yummy" this week when it was time to eat. This all sounds like normal developmental steps for children but when you've only been together only 8 weeks you are struck with each little moment how amazing this little person is.

Megacolon

I just responded to a comment from a family considering a child from China with megacolon. I hope adding what I told her might help others looking for some basic, first-hand, information.

Our information said Lila was found at 2 days old with a swollen abdomen so she has had problems since birth. The research I originally did led me to some sites about Hirschprung's disease. It was hard to find any definite information on-line with the limited info we received from China. Even so, we decided right away to accept our referral because my sister has worked for a colon-rectal specialist for over 30 years. They referred us to a pediatric internist.

When we got Lila the orphanage said the only treatment they have been using is glycerin suppositories. That's what we used (sometimes twice a day) in China and until we had her doctor's appointment after we got home. I felt so bad having to give a child that didn't even know me a suppository (no wonder she bonded with my husband first, poor baby..) If she doesn't go she gets uncomfortable, cranky, her tummy gets swollen, and I can feel hardness on her right side if it's bad.

We were given the xrays that had been done in China. From what she could see, our specialist here does not think Lila has Hirschprung's disease. Hirschprung's is surgically treated by removing the section of the colon where the nerves are not functioning. During the healing stage they have to have an ostomy to give the colon time to heal. Lucklily Lila won't have to have surgery. We use Miralax which is a stool softener daily. I adjust the dose depending on if she went the day before, what we ate, activity level, how much liquids she drank, etc. Usually 2 1/2 to 3 teaspoons mixed into a little juice or milk. It's a flavorless powder so she doesn't even know she's getting anything.

Our doctor here also said if babies are constipated when they are very little they learn that it hurts to poop so they don't. This holding it in causes the colon to stretch then the muscles can't contract properly which adds to the already existing congenital problem.

We didn't know for sure how severe her condition was until we got there, I guess we're still learning. If you are not afraid of a lot of poop coming out of a little child, I would go for it! We had colic/constipation problems wtih our bio daughter when she was an infant so it's not much worse than that was. We have added a lot more whole grains, fruit, veggies, to our diet that we all should be eating anyway.

Only in the midwest...

We took a day trip to Des Moines to get Lila's birth certificate. Somewhere in the middle of Iowa this passes us, just driving down the freeway to her next destination like it's totally a normal vehicle. So Grace asks, "Is that a real cow head?"

Sisters

A sister is a little bit of childhood that can never be lost.

Marion C Garretty

Our first doctor appointment

Lila had her first appointment today with the pediatric internist. She agrees with the megacolon diagnosis from China. She does not at this point think it is the more serious Hirschprung's disease that would require surgery. They did x-rays in China that we took along today, from what the doctor could see she doesn't want to do any more x-rays or biopsies at this point. She will have a radiologist review the x-rays also. We have started a stool softener, 3 times a day for the next 3 days, to get everything cleaned out. Then only once a day for 4 weeks. We will go back to reevaluate at that time. When we accepted Lila's referral there were a lot of unknowns about her medical condition. We weren't sure if she would require surgery or medication or dietary management. We feel really lucky and very relieved that she won't be having surgery at this point.

Say a prayer for little Jadyn from our travel group, she undergoes open-heart surgery on Wednesday. http://ourjadynpanda.blogspot.com/

Chrissy