It's been awhile. We are in the process of getting the greenhouses ready for the season. We are planting a lot from seeds. I'm not sure Quintin will want to do that again next year. It's so neat watching the plants grow from seeds! The anticipation of them coming through the soil is driving me nuts! I'm being a little impatient. I want everything to be sprouting now.

LaRae has had a few doctors appointments at duPont in the last week. She was refitted for her splints 2 weeks ago. Marnie is Larae's P/T ( physical therapist) at duPont. Marnie made a night resting splint for her. She's not too in love with that one! Right now she will only tolerate it for a little while. The left wrist splint was rubbing, so LaRae couldn't wear until we went back duPont to have it fixed. Since she couldn't wear it for over a week Marnie and I notice that the left wrist regressed. That will be a big problem for her. If we don't keep them on the wrist they will go back to the way they were at birth. We were able to get both wrists into the neutral positions (neutral: means when the arm and wrist are in straight line from the shoulder to finger tip). I was really hoping we would see great improvement with her elbows. They haven't really changed much. We are hoping to get LaRae's elbows to move passively (which means that we will be able to bend the elbows for her). We know that she is going to need a muscle transfer in one of the arms. Since the biceps muscles never developed, she will never be able to move the elbow on her own. They will transfer another muscle from somewhere else and put it into one of her her arms. Hopes are that she will be able to move one of her arms on her own and the other one will move passively. If she doesn't start to move either arm passively they will have to do a tendon release and lengthen. The one thing that has improved a great deal is she can lift her left arm to about chest level. Her right arm she does not move as much or even as high as the left arm.

LaRae's new Night Resting Splint.

Renie O/T duPont

They are wonderful. I'm not sure LaRae is coming home with me when I take her to duPont. They love her so much there. She is well love everywhere she goes. What's not to love. Just look at how cute she is.

Marnie P/T at duPont

Q had his Blue and Gold banquet last Saturday. They did a Hawaiian theme. They had a lady come that had lots of drums. We got to listen to 40 boys bang on drums for a half hour. They had so much fun! I don't think I would recommend it for a birthday party. It was loud.

Quintin Sr. and Adrian went to winter camp with the Boy Scouts a few weeks ago. It was really cold that weekend. Adrian had fun. They learned how to build a shelter and to start fire from a stick and bow. I don't think anyone was successful with the fire. They played ice hockey out on the frozen lake

McKayla and I went riding on Ladybug. Ladybug was so dirty from rolling in the mud. McKayla can't wait until spring gets here so we can go riding.

I couldn't find my christening gown and hat when I had LaRae blessed. I wanted to take pictures f her in it anyway. I thought it would be cute to put her in one of my Longaberger baskets. I used the blanket my friend from church made for LaRae.

Family Photo's

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Smokey and LaRae Taking a Cat Nap

I thought everyone would enjoy these pictures. When I put LaRae down for her nap. Smokey was on my bed. I guess he decide that LaRae blanket and feet looked inviting. So Smokey took an unauthorized cat nap with baby girl. He got evicted once I took these pictures. He is such a fat cat.

Ultra sound at Chop for Amyoplasia

LaRae went to see Dr Finkel down at Chop and 3 other doctors. She had an ultrasound of all four limbs. They were hoping to rule out different things that could cause the problems with her muscles and they came to the conclusion that she definitely has Amyoplasia. For those who are wondering what this is:

This is the Doctor who did the ultra sound. He didn't want to get all full of goop.

Amyoplasia is a generalized lack in the newborn of muscular development growth, with contractures and deformity at most joints. The lack of fetal movement known as fetal akinesia allows extra connective tissue to form around the joints and, therefore, the joints become fixed. This extra connective tissue replaces muscle tissue, leading to weakness and giving a ‘wasting’ appearance to the muscles. Additionally, due to the lack of fetal movement, the tendons that connect the muscles to the bone are not able to stretch to their normal length and this contributes to the lack of joint mobility as well.

Dr. Finkel did confirm that LaRae is missing (if you want to call it that) her bicep muscles in both arms. They’re not really missing, but they never developed either so basically they’re missing. The biceps will never develop into anything. She has triceps; not sure how good they are. She has some muscles around the elbow. Her forearms are her best muscles out of all the muscles in her arms, but they still aren't great. All the doctors say is that "she has the best looking leg muscles they have ever seen." So what she doesn't have for arms she sure made up for in her meaty little legs! The doctors will be adding finger splints to her wrist and elbow splints. I can't wait to see what that looks like! We go back in 4 months to see how everything else is going and then we will make more decisions from there. Just to let everyone know - this is going to be a long process. There is no magical surgery or quick fix to this condition, so the doctors don't rush any of their decisions.

LaRae's P/T therapist

LaRae's O/T Therapist Tim Estilow

So we made it through another round of doctor's appointments. LaRae seems to have all the doctors making puppy eyes at her. This set of doctors, I think, wanted to play with her more then anything else. Poor Dr Finkel when he got to see her see was done with it all. All the other doctors had worn her out! She wasn't having anymore of it. So Dr. Finkel wanted to know how "his girl" was doing? Well, let’s say she was a little fussy!

Dr. Finkel

We all went down to Shriner's Hospital. I wanted Quintin and the kids to meet Tracey and her mother Cheryl. We had a great time! Q wants to go back down this weekend and play with the dinosaur that was down there. Adrian is such a teenager - all he wanted to due was play the video games and eat. McKayla just played and hung out.

Tracey, LaRae, and Sharon at Shriner's Hospital

They love their little sister. She gets lots of hugs and kisses.

Our First Trip to Shriner's Hospital for Children's (Arthrogryposis)

I took LaRae to Shriner’s Hospital on Wed. 2/11/09. It was an exciting trip down. When I hit North Philly, the car picked the most inopportune time to over heat. I kept saying prayers that we would at least make it the Hospital before it over heated to the point I would be left stranded on Broad Street. I was just a little bit stressed at that point. But, we made made it and with some time to spare. We saw a wonderful group of doctors. Dr. Kozin would be LaRae's main doctor. They were very vague on what they were really going to do at this point in time. Surgeries are an option for both the wrists and elbows. We are unsure of the details of the surgeries. We have to return in 6 months. At that time we will reevaluated her progress and then figure out where to go from there. So for right now I do physical therapy with LaRae 3 times a day and her splints come off and on throughout the day. We go to CHOP 2/20/09 for an ultra sound on the muscle in her arms and shoulders. We still have to go to duPont in Delaware for P/T and for her splints on 3/6/09.

Tracey, Cheryl, and LaRae at Shriner's Hospital for Children.

While we were at Shriner's, LaRae and I had the privilege of meeting a wonderful girl named Tracey, and her mother, Cheryl. Tracey found LaRae through our blog. We have been Emailing back and forth. She's an inpatient at Shriner's right now. We were lucky to be able to meet her! It really help talking to her. She's 21. She has been through a lot and she still has the brightest smile I think I have ever seen. She gives me such great hope for LaRae. I truly believe my little girl found another big sister. I don't think you can ever have too many people that truly love you. Tracey has warmed our hearts. She feels like one of the family. LaRae and I had a wonderful day at Shriner’s in spite of my car. We did make home safely!


Tiny Fingers


Tiny Toes

Tiny Nose

LaRae's 1st Day at Alfred I. duPont Hospital for Children's

LaRae's wrist and arm spilts.

We took her down to duPont on Friday 1/30/2009. It took a total of 5 hours with doctors and therapist. We learned a lot while we were there. The staff was great there. They took us an hour early. They fell in love with her as soon as they saw her. I wasn't sure she was coming back home with us. The one therapist was almost doing somersaults because she didn't have to see her for her legs and crying at the same time because she wouldn't be working with LaRae either. We found out that her reflux, her arching her back and her red nose isn't a birth mark it is all part of AMC. We will be going back down to DuPont every 5 weeks to be refitted for her splits. They will will keep increasing the angle in the bend in the elbow and straighting out the wrist. Hopefully in 3 weeks she will be able to tolerate the splits being on all night and on most of the day . They are left on 1 hour at a time with 1/2 hour rest all day long. We also have different types of therapies to do with her. The one is call belly time which Q and McKayla like doing with me and the other is to get the arrange of motion better in her arms. I am going to look into other kinds of therapies like water therapies. you can start them pretty earliy and horse back riding therapies. We have great hope that she will live a pretty normal life. DuPont won't be able to due her surgeries so we still have to go to Shriner's Hospitals. But, surgeries aren't going to happen until she is at least 12 month to 18 months. They will only due one arm at a time. They will decided at that time which are is responding the best to therapy. They will do the surgery cast it for several months they we have months of therapy before we know if the surgery has a success. Then they might do the other arm. Then we start all over again with that arm. Let me tell you this was so much information to take in at one time. Brain over load. She will never crawl like a normal kid. She will have a creeper. She will lay on this so that her legs will push her around. It will be like she is crawling. She won't be able to feed her self until the 1st and 2nd surgeries are done. They won't be finished until she is 3 years-old. She will have to were the splits and do therapy into her teens. So we have a very long road. they say it does get easier when they get older. These first 10 years are the roughest. She still has to go to Children's Hospital of Philadelphia (CHOP) for an ultra sound of the muscles. We found out that not only are they under devloped. But, she also is missing some. So we need to go to CHOP to see how bad that is. From my under standing is there is not much they can do to fix this. They need to know which ones aren't there at all. So please keep us in your prayers. I'm (Sharon) going to need them.