Wednesday, July 13, 2005

Keeping Busy

We've really been keeping busy and have experienced a lot of "firsts" with the babies over the past couple of weeks. Let's see, there were the first fireworks, first time staying at a hotel, first time swimming, first time seeing a live band, first time spending the night at Nana and Papa's, first friend's birthday party, and Eden's first time sleeping through the night! We took a mini family vacation to stay at the Quaker Square hotel in Akron, Ohio over the 4th of July weekend. The hotel is an old quaker oats silo that has been converted and all the rooms are round. There is some really cool art in the lobby, as well as a couple of nice restaurants, little shops, and a pool in the hotel. I remember staying there as a kid and thinking it was really cool. I have wanted to take John there for a long time, so we thought it would be fun as a relaxing getaway before a really busy week.

John took a vacation from work last week to help me out with doctor appointments because we had 3 important ones in a row. I use the term "vacation" very loosely because he actually ended up having to do some work from home and was probably more busy with that and appointments than he usually is! We had our developmental appointment at U of M on Wednesday. Holland now weighs 14 pounds 12 ounces, and Eden weighs 12 pounds 13 ounces. Holland has jumped up to almost the 50th percentile for very low birthweight girls, and Eden has dropped to a little below the 25th percentile. Holland is 26 inches long, and Eden is 25 3/4. Their head circumferences are exactly the same. Holland is pretty close to target with her motor skills, except for slightly decreased central tone. Eden has more of a developmental delay with motor skills in the 3-4 month range. She has more significant low tone in her trunk and mild tightness in her legs. The doctor, who is a pediatric neurologist, said that at this point Eden's tonal issues are too mild for her to feel comfortable making a diagnosis of Cerebral Palsy, but we are fairly sure that the diagnosis will be made sometime in the future. For now, we are doing all that we can to help make sure that Eden continues to make progress by getting physical therapy and working with her stretching and exercising at home. All of the therapists and teachers working with her now are very pleased with the progress she has made in a very short time. She has a great attention span, and seems really motivated to move and play with her toys. It's a lot of fun to watch how excited she gets when she sees something that she wants!

This is a picture of Holland and Eden with their buddy Giovanni. Gino and his family spent time with us in the NICU. He was born at 27 weeks on July 11th weighing 2 pounds 2 ounces. Look how big and adorable he is now! It was a lot of fun celebrating with his parents and seeing how far we've all come over the past year. It's just unbelievable.


Anonymous said...

hi guys! it sounds as if you have been very busy. what a cool little trip to the quaker house -- i've never heard of it. i'm sorry to hear about the possibility that eden may have CP, but i am very glad to hear about all of the progress she is making. if we know anything, it is that these girls are amazing and tough. nothing is impossible :) i will be home soon and can't wait to spend some time with you all.
love, lis

Anonymous said...

Hi! Very cute pictures again!! The girls are always so busy aren't they? I was happy to hear of the bd bash, and can't wait!! Aunt Lisa will be home in time too!
I will see you all then with big hugs and smooches for all!!!
Love, Mamma Jules

Kendra Lynn said...

Hello, Billie and John:
Its nice to hear that you had a little getaway with the girls...I know your week was busy...your mom filled me in on Saturday. As always, you and the girls are in our prayers...they are beautiful, and I'm so thankful that they are making progress in so many different ways. Isn't it wonderful that you are celebrating their first birthdays? We will be stopping by the birthday bash.
Can't wait to see you.
take care.

Anonymous said...

hey! i know i just posted, but i just recieved my extrmemly precious birthday invitation in the mail and to tell you how happy it made me. i will be there -- in fact i waited to make my reservations to make sure i would be! can't wait.

Anonymous said...

I bet all the "firsts" are very exciting and I'm so happy to hear about the family trips! It's great to get away every now and then. The girls look fantastic and I'm very glad and so amazed at their progress in catching up. It saddens me to think Eden may have CP, but I know with all the love and special care you've provided the girls everything will work out just fine. Looking forward to seeing you soon! Love, Donna

Billie said...


One of Eden's physical therapists told me that based on Eden's patterns of movement she thinks she will be diagnosed at some point down the road. The diagnosis of CP generally isn't made until 18-24 months unless it is severe. Right now it looks pretty mild, but Eden isn't meeting her developmental milestones, even based on her adjusted age. She is developmentally 8 months old now, and still isn't able to lift her head up for long, and isn't able to sit up very well, even with support. She also tends to stiffen her legs and arch her back when trying to hold herself upright, and will sometimes scoot herself across the floor on her back doing this. These are all signs that she may have CP.

On the bright side, the neurologist mentioned that she has seen other kids with the same issues as Eden who have gotten early intervention and PT in their first year, go on to develop normally in their second year and never get a diagnosis. So, there is some hope that she does not have CP, but for me it helps to prepare myself for the worst while hoping for the best! At this point I think I am okay with whatever happens.