Disboutiquers Part 18 Kids Disney Boutique / Customs Clothes psst..we sew ;-)

[livndisney]

Last week I posted about making hospital gowns for Grace she was going to have surgery. We went in for the surgery and they canceled it at the last minute after us waiting there for five hours at the hospital. Graces PTT which is a clotting test was way to high to operate on her. We had to go to a hematologist that same day. He said no doctor will touch Grace with a ten foot pole until we know what is causing this. It is one of six things. Four possibilitise are some form of hemophelia and one is Von Williambran disease and the sixth is an inhibitor. I am sitting here a nervous wreck waiting for test results that should be in today or tomorrow. Thanks for listening I just wanted to ask if you could keep her in your prayers. I will post an update when I know more. If any of you have any experience with this type of clotting disorder any advice would be appreciated. Thanks. Laura

Hugs to you and sweet Grace. I will keep you both in my prayers.

 

[tvgirlmin]

Nini,

My heart just breaks for your youth pastor's family - I will pray that God wraps his healing hands around them, and comforts all involved in the accident.

 

[Mom2SamandJames]

We are praying for the youth pastor's family and sweet Grace! Keep us posted on her status!

Dawn

 

[coteau_chick]

Hugs to you and sweet Grace. I will keep you both in my prayers.

Thanks that means alot.

 

[livndisney]

We did IOA in 04 JUST to meet the grinch! That year, they still had the Grinch's lair set up and he was a full (green) face character. They also did a stage show of the Grinch. It was incredible. And can you believe my daughter wore jeans and a sweatshirt?????? What a missed opportunity for a really cool custom!

Oh yes, I remember this. We went and saw this. This was the Christmas before my DD came home, so it was rough.

For Grinchmas now the Grinch is full face like this. The show they do now is very cute. But I miss the old show. The old one was more like the movie. I have pictures on the other computer, but I know you can see the new show on Youtube.

 

[aksunshine]

Thanks Jessica and Teresa!

SNUBIE- Megan is BEATIFUL!

 

[angel23321]

Okay...these aren't the greatest pictures but they're what we downloaded last night. I took separate pictures of the outfits themselves that I will have to post later.
Thank you all for your help and ideas over the last few months. I've renewed my love for sewing and asked DH for a cheap serger for Christmas.

I so want to go back next year...we'll see if I can convince DH. Now to go read and get caught up.

 

[froggy33]

I promised I would update the conditions of our youth minister and his family.

They were slowed down for traffic and the SUV behind them was distracted. He rear-ended them going over 80 mph. There were 6 vehicles involved.

The dad has multiple cuts and bruises, but insists he is ok. The mom has a broken back. She is paralyzed from the neck down. They are hoping once the swelling goes down she will regain some movement, but it will take approximately 6 months for recovery to happen. The break was severe enough they do not think she will ever walk again. She is very heavily medicated and does not know about her daughter.

Please pray, not only for the family, but for everyone that knows this very special, loving and giving family. Our lives were forever changed by the short life of a beautiful little red head. She was truly a light in a dark world. She will be sorely missed.

Please, as a favor to me, will you hug your children for me today! An extra hug. Just tell them it is for the crazy lady on the Dis with a broken heart.

Nini

This is just heartbreaking!! I am in tears and cannot imagine what they are going through. Will definitely keep them and you in my prayers.

Last week I posted about making hospital gowns for Grace she was going to have surgery. We went in for the surgery and they canceled it at the last minute after us waiting there for five hours at the hospital. Graces PTT which is a clotting test was way to high to operate on her. We had to go to a hematologist that same day. He said no doctor will touch Grace with a ten foot pole until we know what is causing this. It is one of six things. Four possibilitise are some form of hemophelia and one is Von Williambran disease and the sixth is an inhibitor. I am sitting here a nervous wreck waiting for test results that should be in today or tomorrow. Thanks for listening I just wanted to ask if you could keep her in your prayers. I will post an update when I know more. If any of you have any experience with this type of clotting disorder any advice would be appreciated. Thanks. Laura

I hope she will be okay!! My husband's mother is a nurse who specializes in hemophilia (and Von Willebrand) She owns a company that provides the drug treatment and nursing. To help you feel better it is a very manageable disorder. The kids I know who have it (all ages) lead very normal lives. They just need to take their medicine and not be quite as reckless. If you have any questions I can try and answer or direct them to my MIL. Good luck!!!

 

[teresajoy]

Last week I posted about making hospital gowns for Grace she was going to have surgery. We went in for the surgery and they canceled it at the last minute after us waiting there for five hours at the hospital. Graces PTT which is a clotting test was way to high to operate on her. We had to go to a hematologist that same day. He said no doctor will touch Grace with a ten foot pole until we know what is causing this. It is one of six things. Four possibilitise are some form of hemophelia and one is Von Williambran disease and the sixth is an inhibitor. I am sitting here a nervous wreck waiting for test results that should be in today or tomorrow. Thanks for listening I just wanted to ask if you could keep her in your prayers. I will post an update when I know more. If any of you have any experience with this type of clotting disorder any advice would be appreciated. Thanks. Laura

Oh no Laura, I'm very sorry. I have a mild clotting disorder, but it would be the opposite of what Grace has, I have ProteinC deficiency. I would have never found out I had it if my sister, Heathersue hadn't been diagnosed with Antiphospholipid Antibody Syndrome shortly after Sawyer (her son) was born. That too causes her blood to overclot. She was in the hospital for close to two weeks. She takes medication to help control it. While they were testing her for things, they found out she also has ProteinC deficiency and suggested the other family members be tested as well.

I'm glad that you found out there was a problem before anything happened, but I know how worried you must be.

 

[billwendy]

MAURA - thanks for the tip on the OTT lights!! I got the tabletop one for 30$$!! YAY!!!

Nini - will keep praying for the family - oh goodness, so sad.

Praying for Grace too!!!

 

[angel23321]

I promised I would update the conditions of our youth minister and his family.

They were slowed down for traffic and the SUV behind them was distracted. He rear-ended them going over 80 mph. There were 6 vehicles involved.

The dad has multiple cuts and bruises, but insists he is ok. The mom has a broken back. She is paralyzed from the neck down. They are hoping once the swelling goes down she will regain some movement, but it will take approximately 6 months for recovery to happen. The break was severe enough they do not think she will ever walk again. She is very heavily medicated and does not know about her daughter.

Please pray, not only for the family, but for everyone that knows this very special, loving and giving family. Our lives were forever changed by the short life of a beautiful little red head. She was truly a light in a dark world. She will be sorely missed.

Please, as a favor to me, will you hug your children for me today! An extra hug. Just tell them it is for the crazy lady on the Dis with a broken heart.

Nini

This is so sad. I am praying for your church family and you.

 

[coteau_chick]

Thanks Jessica and Teresa!

SNUBIE- Megan is BEATIFUL!

akasunshine I know you don't know me but I pray for you very often and your family.

 

[coteau_chick]

This is just heartbreaking!! I am in tears and cannot imagine what they are going through. Will definitely keep them and you in my prayers.



I hope she will be okay!! My husband's mother is a nurse who specializes in hemophilia (and Von Willebrand) She owns a company that provides the drug treatment and nursing. To help you feel better it is a very manageable disorder. The kids I know who have it (all ages) lead very normal lives. They just need to take their medicine and not be quite as reckless. If you have any questions I can try and answer or direct them to my MIL. Good luck!!!

Thanks for the encouragement. It really helps to know they can lead normal lives. I might have more questions later when they call me. I jump and my heart races everytime the phone rings. I still may not hear any news until tomorrow.

Oh no Laura, I'm very sorry. I have a mild clotting disorder, but it would be the opposite of what Grace has, I have ProteinC deficiency. I would have never found out I had it if my sister, Heathersue hadn't been diagnosed with Antiphospholipid Antibody Syndrome shortly after Sawyer (her son) was born. That too causes her blood to overclot. She was in the hospital for close to two weeks. She takes medication to help control it. While they were testing her for things, they found out she also has ProteinC deficiency and suggested the other family members be tested as well.

I'm glad that you found out there was a problem before anything happened, but I know how worried you must be.

Thanks. Are you and Heather at risk for blood clots? I am sorry to hear that you both have that problem. I have never heard of this. I knew a lady that kept having miscariages because of blood clots forming and cutting off the placenta. Can this be passed down to your kids? Thanks again for the encouragement. I am trying to distract myself today. I am so jumpy.

 

[ireland_nicole]

We did IOA in 04 JUST to meet the grinch! That year, they still had the Grinch's lair set up and he was a full (green) face character. They also did a stage show of the Grinch. It was incredible. And can you believe my daughter wore jeans and a sweatshirt?????? What a missed opportunity for a really cool custom!

I love this pic!

Dang, you arrive the day we are leaving! Dang!!!! We are leaving the 5th for Vero but will be around the pool at BCV. I hope we could just say hi quickly.

Well darn, what time are you leaving? I bet we could squeeze in a quick trip to BC when we arrive- if nothing else, I'm sure DH could distract the kids and I could run over; please, please tell me you're leaving late afternoon

Last week I posted about making hospital gowns for Grace she was going to have surgery. We went in for the surgery and they canceled it at the last minute after us waiting there for five hours at the hospital. Graces PTT which is a clotting test was way to high to operate on her. We had to go to a hematologist that same day. He said no doctor will touch Grace with a ten foot pole until we know what is causing this. It is one of six things. Four possibilitise are some form of hemophelia and one is Von Williambran disease and the sixth is an inhibitor. I am sitting here a nervous wreck waiting for test results that should be in today or tomorrow. Thanks for listening I just wanted to ask if you could keep her in your prayers. I will post an update when I know more. If any of you have any experience with this type of clotting disorder any advice would be appreciated. Thanks. Laura

Praying for y'all. I know this must be nervewracking for you.

Okay...these aren't the greatest pictures but they're what we downloaded last night. I took separate pictures of the outfits themselves that I will have to post later.
Thank you all for your help and ideas over the last few months. I've renewed my love for sewing and asked DH for a cheap serger for Christmas.

I so want to go back next year...we'll see if I can convince DH. Now to go read and get caught up.

So glad to hear you'll be sewing more! I love the pics from your trip!

 

[teresajoy]

Thanks for the encouragement. It really helps to know they can lead normal lives. I might have more questions later when they call me. I jump and my heart races everytime the phone rings. I still may not hear any news until tomorrow.



Thanks. Are you and Heather at risk for blood clots? I am sorry to hear that you both have that problem. I have never heard of this. I knew a lady that kept having miscariages because of blood clots forming and cutting off the placenta. Can this be passed down to your kids? Thanks again for the encouragement. I am trying to distract myself today. I am so jumpy.

Yes, Heather and I are at risk for clots, with Heather's condition, she is much more prone to it.
The ProteinC is hereditary, we got that from my Mom's side of the family. No one knew it ran in the family though until now. Either my Grandma or Grandpa had to have it. So far this hasn't given me or my Mom any problems. But, Heather's condition was and is life threatening. I almost lost my best friend three years ago. I refer to those two weeks as "the dark days". She had portal vein thrombosis (which a brilliant doctor first diagnosed as "acid reflux" and sent her on home) as well as various other clots. I can't think about that time without crying.

This condition can cause miscarriage, so that could be what your friend had. The medicine Heather is on helps the clotting.

 

[billwendy]

Finished a raggie quilt for my MIL - hope she likes it - I was so worried when she told me the colors in her new living room were burghundy and light yellow - but thank goodnes Joann's had something to coordinate for me!

this was how it ragged after 1 washing - do you think I should wash it 1 more time before sending it to her?

 

[Diz-Mommy]

Finished a raggie quilt for my MIL - hope she likes it - I was so worried when she told me the colors in her new living room were burghundy and light yellow - but thank goodnes Joann's had something to coordinate for me!

this was how it ragged after 1 washing - do you think I should wash it 1 more time before sending it to her?

NO WAY!! I love it just the way it is!! It seems to have a neat zig zag look too. That is so cool I've been wanting to make a rag quilt for YEARS!! One of these days!!

 

[Tweevil]

Last week I posted about making hospital gowns for Grace she was going to have surgery. We went in for the surgery and they canceled it at the last minute after us waiting there for five hours at the hospital. Graces PTT which is a clotting test was way to high to operate on her. We had to go to a hematologist that same day. He said no doctor will touch Grace with a ten foot pole until we know what is causing this. It is one of six things. Four possibilitise are some form of hemophelia and one is Von Williambran disease and the sixth is an inhibitor. I am sitting here a nervous wreck waiting for test results that should be in today or tomorrow. Thanks for listening I just wanted to ask if you could keep her in your prayers. I will post an update when I know more. If any of you have any experience with this type of clotting disorder any advice would be appreciated. Thanks. Laura

Sending blessing to Grace. I hope all turns out well.

 

[aksunshine]

Laura- Thank you so much. I'll be praying for your Grace. How old is she? How amazing her clotting was caught before it could turn into something worse. I hope she gets well. That has to be terrifying. I didn't have to watch Levi battle anything, I sometimes wonder if I would have rather lost him that way. It's all painful when it's your babies.

Hugs, Alicia

 

[busy mommy]

Last week I posted about making hospital gowns for Grace she was going to have surgery. We went in for the surgery and they canceled it at the last minute after us waiting there for five hours at the hospital. Graces PTT which is a clotting test was way to high to operate on her. We had to go to a hematologist that same day. He said no doctor will touch Grace with a ten foot pole until we know what is causing this. It is one of six things. Four possibilitise are some form of hemophelia and one is Von Williambran disease and the sixth is an inhibitor. I am sitting here a nervous wreck waiting for test results that should be in today or tomorrow. Thanks for listening I just wanted to ask if you could keep her in your prayers. I will post an update when I know more. If any of you have any experience with this type of clotting disorder any advice would be appreciated. Thanks. Laura

I am praying for your little Grace.