Please Pray For Peter!

This is Peter Ellsworth. He is a friends baby. He is 2 months old and needs your prayer. He had heart surgery yesterday Feb. 24th to conect his pulmonary artery to his lung. He came through surgery fine but last night at around 3:00 am his heart stopped. They had to resuscitate him and could not get his heart to work on it's own. They put him on the heart/lung machine. The Dr. is not giving any outcome. He could come through, come through with brain damage, or not make it through. The chance is the same for all situations right now. He has a caringbridge site if you would like to stay updated with what is going on with him. www.caringbridge.org/visit/peterellsworth I ask for your prayers for this family and little Peter.

Orthopedic Appointment and New DYNA SPLINTS

Abbie does not mind the splints, as you can tell by the big smile!

She looks like she is thinking pretty hard. I'm not sure if she is wondering about the splints or if she is trying to figure out how to not fall over!

Abbie had an appointment with ortho at the end of January. He is pleased with her bones and joints. Nothing new has changed. There are 2 things that have always been a concern and are on going.

The first is her thumb joints. She does not extend her thumbs out completely and this could cause contractures in the joint. We ordered a pair of braces for her hand long ago and she has worn them quit a bit. Now, they want them on her 2 hrs off 30 min all day long. There are so many other things to work on in OT that the thumbs are not priority all of the time. This will keep them stretched almost constantly. She does not mind them but the velcro closures scratch her face so we put socks over them. I will try to get a picture so you can see how they look.

The second thing is the back of Abbie's knees have never stretched out straight. We have worked on this from the begining. They started out at about 30 % and we have gotten them to around 10-15%. We feel as if they now need a constant stretch to get them the rest of the way stretched. Ortho ordered the DYNA SPLINT. We just got them on Thursday. I can not believe how big they are! Abbie does not seem to mind them. She started out with 1 hr a day and will build up to 5 hrs a day. We are hoping this does the trick!

We have also stared to see a behavioral Anylist. I will tell you all about this new appointment when we get all of the plann of action sorted out. I am very excited for this new adventure. I think it is going to be a great help for Abbie and me!

We have 2 other new appointments to add to our list of Dr.'s. This month we will see a neurologist and an endocrinologist for the first time. I will keep you posted on how these appointments go.

2009 MRI Results Are In

ABBIE WAITED PATIENTLY FOR THE NURSE TO TAKE US BACK TO START THE MRI.



Abbie has 2 small canals in her spine that we recheck every year for any changes. These have been there since birth. They are explained as little open areas next to the spinal cord with spinal fluid in them. If they grow and continue to fill with fluid they would begin to compress on her spine and nerves and cause lower extemity paralysis. Last year there was no change. This year we did the MRI on Jan. 2. Abbie did very well without being able to eat. It took about 1 1/2 hrs once they began. They took me back with her to get her to sleep before they started the IV. She went to sleep with a fight to the very end. Then I had to leave for the MRI itself. They told me it would be about 45 min. I started to get a little nervous when it took so much longer. Finaly, they came to get us to see her in recovery. She did great under the anesthesia. The reason it took so long was Abbie is a very hard stick. It took 7 times of not getting a vein before they called in a 2nd Anesthsiologist in to help with a jugular vein IV. This was kind scarry to me but they said the bleeding stopped fairly quick. Yuck!!! Any way, the Dr. called me with the results saying one of the canals looks to be getting smaller and the other is still the same. Good news! It looks as if this is going to resolve itself with no surgery! We will check again next year.

Just some Picture updates!

Every Christmas Eve my children open one gift and it is always their Christmas P.J.'s! I try to get a great picture of them in front of the tree but with 5 it never works out so this is the best one from this year.

This is in VA at my mom's house at thanksgiving. The kids hate that I love pictures!

Abbie had a blast in the Fall leaves in my mom's front yard! Kaylee actualy had to put her arm under her head because she kept disappearing!

The kids don't get leaves here so they all enjoyed it. We also got their help in raking, and bagging leaves! They just thaught it was playing!!!

Abbie slept great when we went to DC. She was covered and bundled so well she could not even move. I guess she figured she mine as well sleep!!!!

We had a wonderful Holiday season. We hope you all did as well. I will post an update soon!

A New Food Group

This is the spoon Abbie ate over Thanksgiving break!!!!


We went to VA to visit my mom for Thanksgiving. We had a great time. The wole family got to go this time. EVEN LEE! On Tuesday we decided to go to Washington DC. We wanted to get there and eat breakfast but Lee had to have Starbucks on the way. Abbie was awake so we got her an oatmeal. I was driving and Lee sat in the back to feed Abbie her oatmeal. He comented on how he could not believe she had not broken the plastic spoon she was biting so hard on it. The next bite we heard a crack and when the spoon came out there was a good size piece missing. We were also to late to get it. I guess the oatmeal made it slimmy and it slid right down her throat! She did not have any problems but I was worried about it cutting her insides. We were about 10 min from the hospital my mom works at so there we went! The staff was great. They said it would not show up on xray but if she could eat and drink OK then it made it to her stomach. She ate the rest of the oatmeal in the ER (with a metal spoon ofcourse) and did fine. So, being me, I dug through poop for the next few days looking for a spoon!!! I never saw the actual piece but there was a wierd diaper with black stuff. They said that was probably it because her stomach acid is stong enough to begin to digest it. Who knew! We have decided to give her 1 piece of plastic spoon a week because she was able to poop beter that week then any other time. (just kidding ofcourse)!
The cool thing is while we were there the nurse informed us that she was sure there was another family with a child with Abbie's same diagnosis that came there and lived in the Richmond area. I gave her my contact info to give to the family and with in 3 days she contacted me. She is a very sweet lady that has not been in contact with other 1p36 families. We talked on the phone for a while and I am hoping she joins our support group online! Hey, all things happen for a reason ha?!!!!