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.
Sunday, December 20, 2009
Friday, December 18, 2009
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.
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.
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.
Sunday, December 13, 2009
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.
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.
Wednesday, December 9, 2009
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.
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.
Friday, December 4, 2009
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."
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