Wednesday, November 14, 2007

Gma's Visit

Here is the group!

Here's my mom and myself at Lucille's. Thanks mom for all your help and your willingness to travel to be with us!!! We missed you Pop Pop!

Here's Jordan enjoying her new mouth! She is SUCH an eater! Now that she is able, she eats anything in sight and tons of it. It's really fun to watch.
Here are a few shots from my mom's recent visit. We went to dinner at Lucille's in Lake Forest to see what she thought of Orange County's version of deep south cuisine. We LOVED it. She still insists that her family makes the food better but I'm not so sure. This place is SO good - thank you to the Gilmores for telling us about it.
Here are the Halloween shots from Jordan's therapy. They pick a theme and set up stations for the kids to go through. You can read about it on the Halloween post previously on the blog. I just wanted to post a few pictures.

Here's Jordan's Physical Therapist. She had Christina but she is now home with her new baby. This is Brian. Noah LOVES Brian and asks about him every time he knows we're going to therapy.
Here's Terry - Jordan's Occupational Therapist. She goes above and beyond the call of duty for our family. She has given us her cell phone number for questions during doctor's visits and she has even come with me on a few appts.

Jordan in Noah's giraffe costume from last year. She was a little bear on Halloween night but I don't have pictures in here yet.

Noah used Ivy Cox's kangaroo costume this year. He was so cute!

Scroll down for another post!


We're Still Here

Hi friends and family! It is so good to be posting again. We've had a very busy time lately and have not had a chance to post anything. This post will be fairly dry with a few updates and prayer request follow-ups but I'm hoping to post some more interesting ones soon.

Fingers and Toes:
I think I already told you but last week I took Jordan up to UCLA to see Dr. Jones, her hand and toe surgeon. He took the casts off and said she looked great. Yes, "great" is a relative term. They were completely black with scabs and stitches so I couldn't bring myself to really look at them much. We've been soaking them a few times a day then putting antibiotic ointment on them and rewrapping them. Finally they are healed enough that we don't need to do anything to them anymore. However I can now get a good look at them and I'm wondering why the surgeon didn't separate the index and middle fingers more. Her fingers are webbed up nearly to her middle knuckle which leaves very little movement room. He said he increased that web space between her first two fingers but it doesn't seem to really be very helpful. I am waiting for him to call back. I'm sure he has a plan for it - we have complete faith in him as our surgeon but just want to make sure we understand his plan and what is being done to her and why.
We are scheduled to meet with him in three months to plan the stabilization and lengthening of her thumb on her "good" hand.

We met with the craniofacial surgeon who was very excited about the work in her mouth but I've since noticed a small hole in the roof of her mouth. In fact she coughed while I was looking in there and stuff came out of the hole which means it goes all the way through, which means her speech and her suction could be impacted. We'll meet with him in three weeks for another follow-up and I'll talk to him then. A hole could mean another surgery for her in six months to close it.

We met with Jordan's new foot doctor today. His name is Dr. Brage and he is in Laguna Woods at South County Orthopaedic Specialists. He's really nice and agreed with our therapists that Jordan needs some type of brace/splint to stretch that foot beyond 90 degrees. We asked our last doctor for one and he thought it was unecessary. It is now looking like we wouldn't be so far behind if we had this brace earlier. Bummer. Anyway, because her foot was tied up to her leg for the 8 months she was inside me and then the four months leading up to her first surgery, the tendons/muscles, etc. on the front of her foot/leg/ankle are VERY short and tight while the ones on the back are VERY long and loose. Because of this we've had to work at stretching her foot to pull it down. We did six weeks of serial casting to slowly pull it down before. This doctor has a bracing system he thinks will work better than more casts on her leg. You should really check out the website -
We're waiting for insurance to approve it and then for her to be fitted. We're so excited that this might finally help her stretch her foot beyond 90 degrees. With her foot the way it is now she will have a very hard time walking and will walk with an OBVIOUS "difference." Please pray that insurance will pay for it and that it works out for her. She will have to wear it for many months and is MUCH preferrable to a cast to her hip for months.

Heart Stuff:
Jordan had a Patent Foramen Ovale (tiny hole in her heart) when she was born. They expected it to close by one year so we went in last week for a follow up exam/ultrasound. I love appointments like this one. Noah hasn't stopped talking about the Thomas train table in the waiting room and the nice nurses who played with him while I was in with Jordan. They took care of him while we had our appt. Shan actually went to high school with the doctor's assistant so I think we might have gotten special treatment. :) Either way, it was a blessing.
We got a letter in the mail today with the results...
"Echocardiogram - Followup echocardiogram was obtained...which demonstrated closure of the previously known septal defects and a normal heart...she is therefore discharched from cardiac followup..." Yay! I love when doctors can say, "Have a nice life!" We don't have to go back again and I'm so glad to check one thing off our list. :) Praise the Lord!

Enough of all this business now that you've been updated. I will post Halloween pictures soon and a few other thoughts.

I miss you all during our busy seasons and love checking your blogs. Know that even if I don't leave comments I am reading them.

:) Jen

Wednesday, November 07, 2007

Sweet Judson Levasheff

Sorry that I forgot to put the website about Judson. You can visit the site at

You can also click on "Links" at the top to go to their My Space page and see videos of him. Amazing - what a sweet boy.

His mom posted at 12:30 today saying that Judson went to be with Jesus at 11:30 this morning. Please read their site, consider their suffering and examine yourselves as we all should. Would we respond in the same way?


Tuesday, November 06, 2007

Please Pray

Some of you have heard about, read about or are somehow connected to a member of the Levasheff family. Drake and Christina have two children - one of which has a terminal illness called Krabbe Disease. He seems to be in the final stages at this point and I ask you to read through their Caring Bridge site and their My Space page to find out how you can pray for them and also to learn from them and their response to such tremendous grief. I plan to write more on this but not tonight - it's too late and we have an early day tomorrow - but please read their postings and take a second to evaluate your own life and your guess at how you would face something so devastating.