SOOOOOOO Long ago!!!!!!

I am sorry it has been so long since any info. Abbie is doing great. I just wanted to say hi and let you know that I am planning on posting at least once a month this year and this is January's.



We have been given the OK to stay away from Cardiology for a whole year! As nervouse as this first made me I am totaly cool with one less Dr. apt. so often. He is so pleased with Abbie's heart function.

Abbie started school last March. I was pretty happy with things except equipment. Her PT was wonderful and tryed to get something that would be small enough for Abbie. This summer they finaly agreed to let the PT order a chair just for Abbie! It is a good chair for her but I feel like I am taking Abbie to school to be babysat. I love her teacher and the PT but she was progressing in all areas so much better when she was getting outside medicaly baised therapies. I am sure I will get alot of negative thoughts on this but, Lee and I have decided to pull her from preschool and put her back in the other therapies. I will still take her to the elementary school to get educationaly baised therapies but, we feel she needs more and there is not enough time to add babysitting (preschool) in too. I will post again soon and let you know how things are moving with this.

Look back for pictures soon!

An Update

Abbie has been doing well. She will be three on Monday March 16 and I will post a big update then. For now a few things.
The neurologist is pleased with her. We will be doing another EEG soon because it has been a year since the last one but he does not think it will show anything different. This is great! He will be another yearly Doctor.
The Endocrinologist was great. I was worried they were going to want to put her on growth hormone right away. He actualy feels like it is not a hormone issue. He said if he lined up 1,000 girls Abbie's age she "might" have 1 or 2 shorter then her. If we lined up 1,000 girls Abbie's age no one would weigh less then her. And if we lined up 1,000 girls Abbie's length no one would weigh less then her. Because her weight is so much more greatly affected then her length he does not feel like it will be an Endocrin thing. He wants her to go to the Gastroenterologist. This will probably be a few months away because of all of the paper work and scheduling. We did do blood work. This is always a fight with Abbie. She does not like to give us her blood. We had to stick her three times and they were not sure if they got enough. They called this week to let me know it was not enough and we have to go get it done again. What joy =( I'll let you know what comes of it.
We have also done all of the testing for school. The IEP meeting is scheduled for her birthday, Monday, March 16. I am alittle worried because the school she will have to go to does not have equipment small enough for her and she will need to start the next day to keep up with therapy. They will not even dicuss equipment until the meeting so I may not be sending her for anything but the 30 min of therapy for each therapist until the equipment is available. Pray this all works out please.
Look for the new update next week after Abbie is the BIG 3!!!!!

Updates on Peter!!!

Peter, my friends baby, is doing fantastic. They did not expect him to make it after all of the complications he had. He is now on the schedule to be moved to the regular floor today and possibly go home by the end of the wekk! Praise God for his goodness. Thank you to all who have been praying and please continue to pray for a full recovery.

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.