The Spirit of Christmas

Our family was away today at family Christmas dinner. When we got home and at our back door there was a bundle of wrapped gifts. We have know idea who left them. However, it brought tears to my eyes that someone/s cared enough to do something so thoughtful. I have no words to explain how I feel inside. It was tears of joy. With everything that has been going on I really haven't care too much about Christmas this year. Christmas is my favorite holiday and this year I could careless. This act of kindness has made me remember why I love this holiday.

So I'm not sure if you read my blog or not. But, you have helped me see that people still care and that someone/s cares enough to give me some hope again that I can get threw this rough time that my family is going threw. So Thank you.

1Nephi 7:12 Yea, and how is it that ye have forgotten that the Lord is able to do all things according to his will, for the children of men, if it so be that they exercise faith in him? Wherefore, let us be faithful to him.

You have given this scripture new meaning to me. Thank you for opening my eyes up to what the Lord can do. I have forgotten what he can do. God Bless you for helping me see the glorious things he can do.

LaRae's buddy Tracey Schalk

When we were at Shriner's we got the chance to see LaRae's FAVORITE BUD Tracey Schalk and her brother Terry. The hospital also had three dogs visiting too this one she didn't mind too much. A Boston Terrier ran up and licked her in the face and then it was all over. She is definitely prefers cats over dogs.

Shriner's hospital for Children

We saw Dr. Kozin on 12/16/2009. No surgery date yet for her elbows. We have to wait for the neuro surgeon to give Dr. Kozin the OK to due the surgery now. So we have know idea when LaRae will get the tendon releases. Her spine has taken priority over the elbows for now. We see Dr. Kozin in 3 to 6 months depending on what the nuero surgeon says on 12/29/2009.

Yes, we have an appointment at Children's Hospital of Philadelphia (CHOP) on 12/29/2009. We also have an appointment at duPont on 1/28/2009. I haven't schedule Shriner's yet.

LaRae is getting fitted for her walker in the next couple of weeks. Maybe even as soon as this Wednesdays 12/23/2009.

Hooray casting all done!!!!

We are finished with serial casting. LaRae will never have to go threw that again. We didn't know until the 3rd week into doing left arm that she was having an allergic reaction to the cast materials. We don't know which part she is allergic to. So we got our wish. LaRae is cast free for Santa.

This is the end result.
Right started at 35-degree bend ended at 55-degree bend.
Left started st 45-degree bend ended at 70-degree bend. It will regress some like the right did.

No more weekly trips to duPont.

LaRae and Santa

Two down more to go in LaRae's fight with Arthrogryposis

Dr.Scwartz Peds

We have two more doctor appointments under our belt. I'm keeping a very positive and realistic outlook on everything right.

Everything that can go wrong will. Here's what I mean, on my way two the doctor's appt. My windshield whippers broke and not just the blades they won't turn on. So now I have to check the weather because I can't drive the van in any kind of bad weather. That would be my luck right. However, I'm still keeping a positive outlook. It could of been worse it could of been the motor instead. (knock on wood it wasn't) So any way back to the doctors appointments.

LaRae saw her pediatrician on Thursday 12/10/2009. They did a weight check, she gained 4oz. She's backed up again so it kinda canceled it out. So we really don't know what she really weighs. LaRae has to go back in a month for another weight check. She had another abdominal x-ray to see if she was impacted again. She is backed up again so they changed her meds again.
The doctor did say that LaRae's constipation probably is from the syrinx. She has to have an ultra-sound of her bladder and kidneys now. They are mostly likely are affected from the syrinx too. She been showing sign of it they just never link it to the syrinx.

LaRae is also having a contact allergic reaction to the cast materials. We are not sure what will happen on Monday at duPont. I have to put a special cream to help with the right arm and it has done wonders already. The left arm is having problems where the cast is so we will have to wait and see.

Dr. Finkel Nueromuscular

Then LaRae saw 4 different people at Chop. The main one was Dr. Finkel he was happy with her improvement. She was having a bad day with standing and that did concern him. As far as her arms, shoulders, and hands he was quite pleased. He did explain the syrinx a little more for me.
1. It's in the Thoraic
2. The fluid runs from T4 to T8
3. 4.1mm
4. They think it's a L1 (which we don't know what that means yet)

We still don't know how good or bad any of this is. I'm trying to get her in to see three different nuero surgeons. It will be awhile before we will have any definite answers. So that it's in a nut shell. She has more doctor appointment this week duPont and Shriner's. She goes to back to see Dr. Finkel in 6 months. He is so sweet on LaRae. She gave hugs and kisses this time.

Threw it all she still has the sweetest smile. It doesn't seem to faze her. She is still so happy and cheerful little girl.

Sryinc one of LaRae's new diagnosis

LaRae is seeing Dr. Finkel at Childrens Hospital of Philadelphia. He is her Nueromuscular doctor he has been treating her muscles sinces she was 5 weeks old. He diagnose her with Arthrogryposis and gave us hope over a year ago when no one locally could tell us what was wrong with with our baby girl. So with that said. This is what we do know about Syrinx. That the pocket of fluid will get worse. So at some point it will have to be drain. We don't know when that might happen. So the doctors might just decide to watch it for awhile. However, we won't have that answer until we get in to see the surgeon. So that brings me back to Dr. Finkel we are going to see him tomorrow 12/10/2009 and hopefully he can get us into see a nuero surgeon quickly. Dr. Finkel is sweet on LaRae. It will be all over when she learns to bat her long eye lashes. So maybe he can pull some strings for us. I can only hope at this point and stay positive.

LaRae sees a Therapist at Cindy Miles in Allentown. They might be able to get LaRae a walker that will hold her up. It will help her learn how walk and give security she needs to walk.

Serial Casting on the left elbow.

I believe it's been 3 week of serial casting on the left elbow for LaRae. We are at a 65-degree bend on the elbow. We thought we would be farther along by now. Since we only have three weeks to go. I'm not sure LaRae's elbow will get the 90-degree bend we we hoping for. If everything goes as plan she should be done by Christmas and cast free for Santa.

I couldn't bring myself to taking pictures this time since all she does is scream anymore while they are casting her. So I waited until she was home and happy playing with daddy's remote.

LaRae's right elbow has lost some degrees since the cast has been remove. Which I have been told that is normal. Marnie measured LaRae's right arm to fit her for a rental thing. Forgive me I forget what it is call. I hope the insurance will cover it. It should help keep the bend. However, I am staying positive anything is better then what she had. We just have to try to keep as much as we can until surgery time. LaRae also as a skin irritation on the right arm that the pediatrician is watching.

That's all for now.

LaRae's MRI results are in

I seem to try to keep every one updated on LaRae's serial casting and today it seems pointless to do so at this time. We have gotten LaRae's MRI test results in. We were not prepared for what the GI doscto told us. We were taken back by the news because I had prepared myself that they would confirm that she would either have or not have tethered cord. But, that's not what the doctor told us.

LaRae has Syrinx or Syringomyelia. We have no idea why she has this. In a nut shell. LaRae has a pocket of spinal fluid in the middle of her back. The fluid is compressing on the spinal cord.
I was not mental prepared for this. We are going to see two nuero surgeon one at DuPont and one at Shriner's. Quintin and I want two opinions. I seems tht this is unrelated to Arthrogryposis. But, we are not sure at this time.

So at this time, I'm asking for time to deal with this. I know people mean well by giving me positive comment. But, I can't handle everyones input at this time. I need time to overcome the shock of this new. This is every overwhelming for me as a mother. As e know more we will keep everyone updated. Please keep us in your prayers. I do strongly believe "with god all things are possible."

OUR MIRACLE BABY

HAPPY 1st BIRTHDAY LaRae!!!!!!

LaRae is 1 year-old today.

11/11/08

We love you so very much Scooter.

Love,

Daddy, Mommy, Adrian, Q and McKayla

Week 6 of Serial Casting

Week 6 of LaRae's serial casting. This week did not go as plan. LaRae's skin isn't holding up as well as we would have liked. Therefore, LaRae's right arm needs a weeks break. Marnie fitted her for a new splint so we do not lose any progress we have made over the last 5 weeks. Dr Jay thinks that they will be able to get LaRae's elbow to 90-degrees. They will have to extend the length they serial cast LaRae's elbows. I guess my hope that we would done before Christmas isn't going to happen. That's OK......

It's now Tuesday LaRae's arm is having more problems then when they first took off the cast. It has red blotchy spots and it's swelling. I did not count on a set back. LaRae can't wear her splints for long periods now. I am hoping I will be able to put the splint back on tomorrow for most of the day and they won't cause any problems. I just pray that she doesn't lose the degree of bend that she has work so hard to achieve. She as endure so much threw this processes. The final objective is worth what she has to go threw it is just hard as her mother watching her endure so much as such a young age. She is making me a stronger person. This is a very humbling experience for me. She is such a determine girl and she is a fighter. Heavenly Father gave her such an incredible spirit.

Week 5 of Serial Casting

Week 5 of LaRae's serial casting. We made it yet threw another week. LaRae has one more week to go before they will start casting the left arm. They were able to get the elbow into a 65-degree bend. Which is more then I ever thought was possible for the right elbow. We still have a long way to get the goal of 90-degrees. I really did not think we will achieve that goal only in a week to go. However, I am ecstatic that LaRae's right elbow has come as far as it has. If I was skepitcal in the beginning if this would, work I am a believer now. This was the only way LaRae's elbow was ever going to bend without surgery. She will still need the tendon releases in the future this will make those surgeries outcome better. My prayers are being answer everyday thay she has an improvement regardless of how big or small. I have been blessed to be her mother.

LaRae's 1st Halloween

HAPPY HALLOWEEN

4th Week of Serial Casting

Week 4 for LaRae's serial casting. We made it threw another week. LaRae has another 8 weeks to go. She did really well this week. She was still not happy with Amy any Marnie. However, she was a trooper. Her tears only latested a few minutes after they were finished this week. I can handle that. Her eblow is progressing rather well. we are at a 60-degree bend it's not a clean bend . However, it is still 25 for then when we started. They had to bi-valve her cast again. that's when they have to put cuts in the cast to keep it from becoming to tight (that is the techincal term for it.) Well, that about it for now.... Wish us luck with the weeks to come..... Until next time......

The cuts are the bi-value.

They are cuting the old cast off.

This is LaRae's bend.

LaRae doesn't mind this part.

She likes to watch.

They are bending the elbow.

She not happy the are really bending and holding

it untill the cast is dry.

Now they are adding the color.

Almost done!!!

They are Bi-value the cast.

LaRae hates this part.

The end!

Week 3 of serial casting.

LaRae and I headed down to duPont Monday October 19, 2009. They recasted her elbow. We are at a 50 degree bend. It's not a pretty bend. However, we are making progress. I also have a happier little girl today. She's not complaining about the cast too much, nothing like last week. She wasn't happy about another one going on. They changed the cast a little bit. We only have one layer of fiberglass wrap around it instead of two. They also cut the cast so their would be no pressure that would cause pain. They also had to wrap it with colored tape to hold it together. It seems to be working it's even lighter so LaRae can lift it a little too. So this week was much better.

Week 2 of LaRae's Serial Casting at duPont

Week 2 of LaRae’s serial casting. We headed to DuPont on Monday October 12, 2009. The kids had off from school. I took Adrian with me - he was a big help. Quintin was home also so he had Q and McKayla with him.

They started by sawing off the old cast which LaRae did not like at all. It was loud and the vibration of the saw wasn’t great at all!!!! So that’s were our nightmare begun… Then they started to recast eminently. She never stopped screaming. I had to stop taking pictures because she was getting too hysterical. I did not take pictures of everything this time. We waited at the hospital for 2 hours hoping that she would stop crying; she didn’t but they still sent us home with the hope she would get better by Wed.

On Tuesday morning, I had to take her to the Pediatrician. I found out that the cast was too tight. I had to drive LaRae back down to DuPont so they could cut the cast to relieve the pressure. That seemed to do the trick. She is still a little crabby - I think that’s from the lack of sleep at this point. We now have 2 weeks behind us. Until next week….. Wish us luck…

Monday when they recasted LaRae's arm. I stopped taking pictures. I couldn't handle her crying and not being able to comfort her.

This was on Moday when the cast was still too tight.

Adrian trying to get LaRae to stop crying.

The cut in the cast to relieve the pressure.

This is the LaRae we all know and love.

LaRae 1st day of serial casting at duPont.

LaRae had her 1st serial casting on October 5, 2009. They were originally going to do the left elbow first. However, after talking to Dr. Jay he decided to serial cast the right elbow instead. LaRae has been using the left arm a lot more over the last few weeks and that was the reason for the change in elbows.

The casting went well. LaRae tolerated it pretty well for the most part. We had more problems keeping LaRae from helping. They set her elbow at a 45-degree angle. She was not happy when the bent the elbow that far. She does have problems with sleeping at night. We have 11 more appts. to go. It will be a long sleepless 12 weeks for mom. However, if Dr. Jay gets the results he is looking for with LaRae’s elbows it will all be worth it. There is a chance we could due round two of serial casting in the future before her tendon releases. That will all depend on how well it works this time.

Every night the kids say a prayer before going to bed for LaRae’s arms.

The day before

After we were done and at home.

Thanks for being so patient while I update my blog. It's finally done.

Thanks for following our story.