Wednesday, August 31, 2011

Sunday afternoon , the weather was lovely and we played

We went outside after Lila's party to play.

Even Mady tried to play soccer and Anna came out to watch.

 Soccer anyone ?

Ava and Isaiah did their own thing .

Tuesday, August 30, 2011

A Princess if there ever was a princess...Happy 3d Brithday Lila

Lila's birthday was on Sunday and we celebrated what a gift she is. In every sense she is a "princess". She has been a bundle of energy and joy since she has been home. Watching her discover a brand new world has been a gift of life for our family. She experiences life to the fullest and loves to play dress up and with her babies. Happy Birthday to our dear Princess Lila.

Monday, August 29, 2011

Crazy but we really do fix this many drinks - 3 times a day

I mean who cooks for 30 people 3 times a day : ) We do and part of that is fixing drinks. We have a chore that one person does drinks for everyone for every meal. This was taken at yesterdays lunch and does not include the older kids and adults cups. Amazingly it feels very normal for us now.

Sunday, August 28, 2011

Celebrating Isaiah's day of birth....Cars Style

Let me tell you about our dear , sweet Isaiah. He is very affectionate and loveable. So easy to please. He is very sensitive and can get his feelings hurt easily but there is something very endearing about his tenderness. He plays with everyone and shares his toys easily.  He is active but can easily sit on your lap with a book or watch a movie. His smile tells alot about his personality. We are so very blessed that he is our son. Happy 5th birthday to you Isaiah. We loved celebrating the day of your birth...Actually your first birthday ever celebrated. In the bottom picture he spontaneously got up and ran to hug daddy after he opened his thankful for them.

Friday, August 26, 2011

There is no place like home....

She had her surgery yesterday and it went great. The surgeon was able to get 5mm of her jaw moved already. You can already see a big difference. She threw up some last nite until about 1 am and has done remarkably well since. So much so they let us go home tonite . Which for those of you who have ever been overnite at a hospital you know how wonderful it is to come home.

Wednesday, August 24, 2011

Anna's surgery in detail- A warning some is hard to look at.

 This is the device Anna is having placed on her head . It is called a Rigid External Distraction RED l l System. It looks and works like Mya's and Luke's external fixators they had placed on their legs. When we were told by 4 orthopedic surgeons that Luke need to have his r leg amputated...there was something that did not seem right in our hearts and we kept pursing another opinion. Fianlly after we saw the head of orthopedics at Childrens she said, "His case is to much for me but I know where to send you." We were sent to Dr. Shawn Standard at Sinai Hospital in Baltimore. Thus began a relationship with a man whom we all love and watched do miracles. His recommendation was surgery to release Luke's leg from his back and to place him in the ex. fixator which I would distract daily and it would move his very bent up leg to more than 180 degrees . ( They over compensate for growth by about 20 or 30 degrees ). We did this and Luke now walks and runs and plays sports ( right now he is canoeing with some brothers and Mr. Dick - our friend from church).

Then when Mya was evaluated by Dr. Standard he recommended again the external fixator and again we watched her femur grow several inches and she now walks and runs and even rides a bike :) For other families with children with arthrogryposis or polio or even cp doing an external fixator is a hard decision...I know because I have talked with them. Some choose to amputate or other methods because this external fixator is a difficult apparatus to manage. The pin site infections you can get are devestating and the physical therapy is almost overwhelming ( I did both of thiers with great success- so it is not impossible even to be taught it if you are into and motivated to do your own children's therapy). It is not my favorite device or medical surgery at all. Having done now over 75 surgeries in the 8 yrs plus I would say it is one of the hardest for me...BUT it works and works well. So at first when we were at the cleft clinic at Hopkins with Anna a few yrs ago and they started to describe the device they wanted to place on her head...I looked up and said," Is that like an external fixator but on the head?" Yes, it is but the worries about pin site infections is not a part of it and she only needs to be in it for 6 weeks. So we are now at this point...Anna is unsettled understandably so...but she keeps having a reaccuring dream where she is walking and someone is walking behind her...He tells her everything will be alright. She believes that it is Jesus speaking to her and giving her reassurance and peace about what she will be doing. I don't know how people walk thru life without a personal relatioship with Jesus. I thank you Lord for giving her the peace as she walks thru this next 2 months and I am grateful that her heart soil has been open to all that He has to offer her. So please pray for her and our family as we step into this next journey with Anna.

You can really see the change in this girl's appearance...We look forward to watching Anna.

This was placed in her mouth yesterday at our orthodontist. We work in conjunction with several of our doctors for this type of surgery.

Tuesday, August 23, 2011

Follow the Leader- Anna style

Anna is wonderful with coming up with creative games to do with the little ones. She played this game for hours with them and they would follow and do everything she did. She is great with them. On Thursday Anna will be having some major jaw surgery. I will describe it more in detail Wed....but please pray for her. We will be at Johns Hopkins for a few days afterwards and she will be in something like Luke and Mya's leg external fixator for 6 weeks...Pictures to follow.

Monday, August 22, 2011

Mya - My Hero

She can't use her l leg to peddle at all. So they made it so her r leg can peddle. ( She already has a massive leg muscle in her r leg) without slipping. She worked all afternoon with diff. ones of her siblings and finally she got it down....Go Mya !

Mya- Have Leg Will Travel

This is Mya's full leg brace that she wears all the time. It really does help her to walk and she wears it all the time...except of course this am when she ate breakfast and she parked it :)

They jimmy rigged a piece of tape like a stirrup to hold her foot in place. She can't peddle at all with her l leg so they removed the peddle and she just hangs her leg down . The r leg does all the work. She and her siblings worked all afternoon balancing her. She has wanted to ride a bike for real for a long time and today she did it. I am very proud of her....NOTHING is going to hold this child back. I love the tenacity and courage of these children...they are such an encouragement to me...and they are my heros.

Saturday, August 20, 2011

They are back and we are cooking together like we always do :)

Paul just returned from picking up the girls at Jenn and Jeremiah's. They stayed a few more days to help out after the birth of Zoe. Isn't she getting bigger and oh so cute ? This momma is glad to have them all home now. We all usually make dinner together and tonite we did for the first time in over a week...It was nice to have them all home.

They worked together to make this puzzle...Great Job Girls

They started making this puzzle Sat. am and since have made it 3 times. At first they started trying to make it flat :) until they read the directions. Once they got it they can't seem to stop. Now they have pulled other puzzles out. I love how these things just spontaneously happen...and for weeks we will be doing puzzles.

Friday, August 19, 2011

She fell asleep in my arms...

This is how Lila fell asleep this afternoon...She came over to me and climbed up on my shoulder and in minutes she was out. We rocked together for awhile and then I put her on the couch and she slept for an hour more. It is such a peaceful and calming experience for this momma's heart to hold her child while she sleeps peacefully in your arms- content , protected and feeling loved.

Thursday, August 18, 2011

I came across these 2 old pics of Luke- Ahhh what a dear.

The top 2 pics were ones I found on an old memory card....My it brought back such dear memories of my little guy....Look at him now. Open heart surgery for VSD repair and aortic valve repair that had prolapsed into the VSD. No palate and bilateral cleft lip, R leg folded like an accoridian ( not in these top pics) and fully attached to middle of his back at birth, L leg webbed and a severe clubfoot, and a spinal myloceal....My he has come along way and he was so cute- still is :) Next month he turns 10....Praise God for meeting each one of our financial , spiritual , emotional and all of his medical needs when we became obedient to His will to adopt him - He came home in Oct. 2004.