Tuesday, October 26, 2010

Just You Imagine......

Those of you who receive this in email please go to the website so you can see the video!!

First and for most for those who don't know Emma stood up and is doing a great job at it. Looks like we need to get stuff for her to start pulling up on. Here's some pictures and video

Look Mom!!
OK so I found some more exciting things about Stem cell therapy, that I am so excited to share with everyone.The same mom who I had spoken to previously about banking Stem cells (really the whole reason we did bank) that was talking about trying to find a doctor in the US to do Stem cell therapy. I guess it turns out she took her daughter this year to China first which lead off with some complications due to her blood type and wasnt able to get the treatment that really gets the results because they had to use different cells but the mom said she watched all these other people getting treatment for other things and it was working wonderfully,
and even though they had a problem (which from what I understand is very uncommon) would still highly recommend it.From some research I guess China has been doing Stem cell research the longest and has the highest percent of people who bank cord blood.Anyway's this mom found another place in Mexico who has been doing this for 12 years and they have had huge success as well. They just got back two weeks ago so I am anxious to hear how she does and her progress. I have her website I wanted to share as well as some articals that are great break throughs. As far as the US doing anything for Spina Bifida has not yet happen but they just started a trial therapy with children with Cerebral Palsy and have had "HUGE" results with this. So we will just watch and wait to see what happens and I am sure before to long there will be the same thing for SB.
Here's some articals check them out, very neat!
and here's the Moms blog I was talking about its got everything from her trips.
Also we are very excited the Walk-N-Roll is tomorrow (Saturday) which will be awesome to meet other family's. The walk is only 2 miles but they are having a Picnic afterwards and everyone gets to dress up they are having games and prizes for the kids. And of course Halloween is on Sunday which Payton is just dying to wear his costume for. Then Thursday we have Emma's Orthopedic appointment for her shoes to come off and just wear at night. I Will be addressing her getting some AFOS because there is just no way she can stand up without that left foot turning in and will create some problems with standing and walking. Also want to get her a stander which is similar to this
helps them get use to standing. I will update everyone with our appointment next week and share halloween pictures.

One more thing the last post about the mom she decided to keep her baby. All I have to say is the Power of Prayer!!

Friday, October 15, 2010

Some thought's.....and much needed Prayer

Now typically I am not a person to judge and I completely understand going through a dark time in ones life, but something has hit me to the core and I am so deeply upset by it.

Now nothing gets me more upset knowing that people get misleading information about Spina Bifida which leads to a child not given a chance at life. Now where this is coming from is a Mom who is in the position we where in a year ago. Confused, sad, mad, and I remember all those feelings like it was yesterday. So with that said she came to our Spina Bifida online group, She was given an outpouring of support from all us parents. Questions answered, encouraging words. This journey is HARD, but it is so much more rewarding. She was open about being unsure about termination, she was given kind messages about why not to terminate, why all the women here did not terminate. But she is undecided whether her baby is worth giving life to. She told us she looked at our blogs, our children, and still was not sure her baby deserved life.

Now I wont lie this really bothers me an saddens me because Emma is worth all the pain and burden(if you want to call it that) of it all, but this is not what really got me so upset this women put a post on the board to please go to her blog to vote on whether she should keep her baby that has Spina Bifida or terminate. Now first of all why would she ask a group of mothers to vote for something that they clearly have already decided. And Most importantly anyone can vote and to have people help decided the fate of your child is disturbing to me on so many levels!!

Please pray that she finds the answer she is looking for because at this point thats all we can do. With that please read because it touched me!

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"

"This one gets twins. The Patron saint will be Matthew"

"This one gets a son. The Patron saint give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice.

Wednesday, October 13, 2010

8 month's and much More..

Well this week is allot for us. Emma turned 8 months on Monday the 11th, and Saturday the 9th was the day we found out about Emma's Spina Bififa. It was one of the worse days of my life, and not because I found out she had Spina bifida but the false information I was given and a grim outlook for her and that horrible push that abortion should be considered.

Looking back now she is such a miracle to be here with us and has proven that Doctor to be wrong about what she told me that day, and we are so thankful to have her as a daily reminder of god and the amazing things she will be able to do.

Yesterday she had her Urology follow up and it went better then I could have ever expected. During the Urodynamics the nurse went to go talk to her doctor twice which made me nervous thinking something was wrong. Well Dr.Ritchy comes in to speak to me and said that he is surprised to see how her bladder is working. Explained her bladder is filling up and when it gets full contracts and then voids like a bladder should. He wants me to start cathing only twice a day once in the morning and at night. I was told that you cannot do less its either all or nothing and he told me yes this is usually the case but in Emma's case she is voiding on her own. which is the same as cathing. Now I am sure your thinking why does she need to be cathing if she is voiding on her own, well he said since there are point where her bladder builds up high pressure (but again she voids when this happens) so its more so a precaution and we will follow up in 6months.

and more great news I had finished this post and Emma's physical therapist came and was totally impressed how well she did this week! For the first time she got on all fours in crawling position!!YAY!!! Step in the right direction, Payton was laying on the floor and she really wanted to get him and decided to get on all fours. It was very exciting and then we did some different exercises with pillows and them propped behind her and the physical therapist intised her with a toy and she sat up on her own!

Our little girl is on a Roll and couldnt be a better month to happen then Spina bifida awareness.

Also this month is Spina Bifida Awareness month