You ASKED for it, You GOT it!! GKTW ALUMNI RETURN! UPDATE 1/9 MOVING DAY

[blessedmom4]

Your prayers are working for my Dad. He has the TPN off and the IV heparin has been changed to SQ heparin (shots in his tummy). His lungs still need to be strengthened. Our big Problem today? He has acquired a hospital based bacterial infection (Can we say I am NOT happy). He is on isolation...gowns AND gloves for all visitors. Lisa and I had come over to visit after her hematology appt. and were there when they came in to tell us. I got her out of there immediately, she will not be returning to the hospital, even if I am right across the street, it is simply too dangerous this time of year. I know my Dad understands and I will still visit and take my Mom to the hospital without the children...but I can’t risk it with all four of them having health issues. Dad has sores/blisters in his mouth today and it hurts to eat. I am going to attempt to make Chicken and Dumplings for him on Sunday, he has wanted them since I made them several weeks ago and he couldn't eat. Lisa and I went to the cafeteria for lunch with Mom and it was fun just the three of us relaxing and visiting for a while, waiting on the MD office to reopen after lunch...I was able to get a bit done this afternoon since we were only at the hospital for 2.5 hours.

Lisa is feeling great today, although I did worry about her when I heard about my Dad. She doesn’t exhibit any of the symptoms though, thankfully. I DID cal the MD today just to make sure. Her INR was low, I wasn't surprised.

Prayers continue for all and I will be back for responses (I need to finish the laundry). Krystal and Lisa, please do try to call this weekend. Loved (LOVED) Kaity as Merida! I have so much else to comment on, I just had to say that and I WILL be back to say more to you wonderful friends!

KELLY!!! I had no idea you were going to be at tomorrow's walk fundraiser. A DIS MEET!!! Please do look for us, there are supposed to be over 1000 people (I don't like crowds). We will be wearing Lisa's wish shirts. I wanted to have shirts made at Vista Prints, I just ran out of time. We are team Bountiful Blessings...it is how I feel about my life. I am so happy we have had generous support from such kind folks in our fundraising endeavors. IT IS NOT TOO LATE to make a donation if you so desire. Truly, NO AMOUNT is too small! Just click here. and pick one of our names.

I feel so incredibly blessed to have such truly kind, caring people reading, praying for and supporting us. I am humbled, Thank you. Your GENUINE support this week has gotten me through a rough, crazy around the edges feeling...

[mommy2mrb]

oh my Judy....the ups and downs you poor dad and family have gone through...prayers for the infection to clear up quickly!

happy Lisa is feeling better and hope you all enjoy the walk tomorrow! you are doing good my sister and paying it foward!

will you be home Sunday?

[pwdebbie]

Originally Posted by kayrosek

We kind of had this issue with Jonnie last year but a strict activity ban because of health issues. Some things that worked and other things I wish Id thought of then. An RC car (we have one that runs into walls, fips over and is off again) I think it helped Jonnie to be causing some movement and running it into the wall was sort of a frustration release. Holographic puzzles, clay, science kits (they have one called gross science if he'd be into that sort of thing). If he likes legos but is tired of them check out magnetix a totally different kind of building toy. Maybe a build and paint your own something kit (Jonnie has had bird houses, fire trucks, tractors etc.) Last but not least grandma bought Jonnie a toy that I don't know the name of but she called a whirly gig. I cant find anything like it under that name it was basically a top that rotated around a metal frame with wrist movement. His lit up with different colors while it moved and he played with it constantly. I could ask her wher she got it if you'd like. One thing I noticed was that the things that provided the most sensory feedback (gooey clay, lights, noise, etc) seemed to help most. Maybe because his body was craving sensory stimulation because of the restriction.

Thank you for the suggestions. Someone did give him a RC vehicle -- his mom took him outside in a wheelchair and she said he had a blast. I nixed the Magnetix idea because there is a 2yo and newborn in the house. I worry about those small balls getting swallowed. He was given a Perplexus for his birthday in Sept. (check that out, they are really cool) but says that he's done it once and isn't going to do it again. I can't get past Level 2. I'm not sure he did either, but there's no telling him different. I had been thinking about binoculars as he always grabs mine when he is here. Perhaps a birdfeeder that he can put together would go nicely with it. I'm going to look for that today. And that whirly gig thing, I know what you are talking about, just never thought that they would occupy a kid for any length of time. Something else to think about.

[blessedmom4]

WALK FOR WISHES DAY!!!! I am SOOOOOOO excited! We are going to have so much fun and I am proud of the total we raised. $680!!! It isn't too late if you want to donate...or you can wait until next year, we plan to make this an annual event if possible.

Here is your challenge for the day: Do something nice for someone else! It doesn't have to cost a cent, just do something to encourage someone else...what a better place this world would be if we remembered that the world doesn't revolve around us, it revolves around everyone.

[DMGeurts]

Sorry to hear about your Dad... I really hope he is able to heal soon. It just seems like it has been one thing after another, and he can't get a breat. Sending prayers.

Have fun today!!!

D~

[homeschoolmomof4]

Originally Posted by blessedmom4

Erika, I just love when my DIS friends make suggestions to help me, Thank you! The white noise is a great idea...although my Dad would veto it, he doesn't understand concepts like that. His Bi-pap actually acts in a similar fashion.To be honest, I always marvel at the fact that Lisa sleeps in her mask so well, I have no idea what I would do if I was wearing a contraption that looked like I was blasting off into space every night. How are things gopng for you and the family?

You are so sweet to ask about my family! I honestly am having a heck of a time with my eldest with EDS. She's at that stage where she thinks she's invincible so she behaves like she's invincible until her body breaks down on her. Then we have to heal her up, and then she feels so good that she goes back into Supergirl mode, wipes out and we start all over again. She's also just turned 18, so suddenly I'm shut out of the process because she's an adult who can handle her own medical issues. NOT!!! I'm really frustrated. <sigh>

Sorry to hear your dad has picked up a bacterial infection at the hospital. His healing process sure has been a series of ups and downs. I'm praying that the road ahead holds a lot more "ups". You all are in my thoughts and prayers.

[Panotchr]

Judy, in the event you do see this, we will have on Team Emily shirts/hoodies. They are black with purple writing. I didn't know so many people would be there, I am not big on huge crowds either, but somehow we make it through WDW with them

So excited I will finally get to meet you in person and our kids can meet too.

Oh, I forgot to mention, we are going on Emily's MAW trip December 27- January 1. We will be in NYC for New Year's Eve, but we are not going to the ball drop.... we had a choice, but more on that later!

xo Kelly

[addictedtonostalgia]

Originally Posted by blessedmom4

WALK FOR WISHES DAY!!!! I am SOOOOOOO excited! We are going to have so much fun and I am proud of the total we raised. $680!!! It isn't too late if you want to donate...or you can wait until next year, we plan to make this an annual event if possible.

Here is your challenge for the day: Do something nice for someone else! It doesn't have to cost a cent, just do something to encourage someone else...what a better place this world would be if we remembered that the world doesn't revolve around us, it revolves around everyone.

So so happy that your father seems to be doing better but bummer about the infection. I hope he kicks it to the curb soon. Have a blast today at the Walk for Wishes and your DISmeet. 'fraid I don't have any money left to send this year, but next year I will. It's okay if I mail it right?

[McDuck]

Best wishes at the walk today, Judy and Kelly!! Hope you get to meet up! So sorry to read of the bump in your dad's recovery! Praying specifically for that, too. Congratulations on the amount raised! I need to get my rear in gear raising funds for Team Gleason for our Half!

[mommy2mrb]

Originally Posted by blessedmom4

WALK FOR WISHES DAY!!!! I am SOOOOOOO excited! We are going to have so much fun and I am proud of the total we raised. $680!!! It isn't too late if you want to donate...or you can wait until next year, we plan to make this an annual event if possible.

Here is your challenge for the day: Do something nice for someone else! It doesn't have to cost a cent, just do something to encourage someone else...what a better place this world would be if we remembered that the world doesn't revolve around us, it revolves around everyone.

Enjoy the Walk! for raising so much
love your challenge! you are so right, the world would be a better place if everyone was nice and played well together

Originally Posted by Panotchr

Judy, in the event you do see this, we will have on Team Emily shirts/hoodies. They are black with purple writing. I didn't know so many people would be there, I am not big on huge crowds either, but somehow we make it through WDW with them

So excited I will finally get to meet you in person and our kids can meet too.

Oh, I forgot to mention, we are going on Emily's MAW trip December 27- January 1. We will be in NYC for New Year's Eve, but we are not going to the ball drop.... we had a choice, but more on that later!

xo Kelly

have fun at the walk....hope you get to meet up with Judy's Gang!
what a wonderful trip! NYC during the holiday is so beautiful! can't wait to here your plans!!!

[VBAndrea]

Jennie Merida is gorgeous! I can't believe she loved the wig! Fabulous job on the outfit. My Halloween pics are still on the camera.

Meredith Hope you are feeling better after your surgery. I am queen of oral surgeries and know they are not fun. I also hope the herbal route helps you. I found some things help and some things don't. But I always try.

Judy I am first glad your dad is improving with regards to the nutrition and heparin. You of all people know that the easiest place to get an infection is in the hospital. Hope it's short lived. Have a great time with your walk. Hopefully next year our house will be sold and I can contribute.

Me Update: I'm finally feeling a bit better. My pain is drastically decreased and I've cut down on the meds. I am trying hard to get more active, with taking plenty of breaks. Today it's catching up on laundry, cleaning Alexa's room which has gone to the pigs as she threw everything in her closet and her walk in closet was no longer walk-in-able. I'm on a break from that right now. Then I have a shirt I must start on and really want to get it done by tomorrow (three appliques). Wish me luck! I'm glad we have a long weekend. I am freed for two hours a day not having to transport the kids to and from school.

[KatMark]

Originally Posted by blessedmom4

WALK FOR WISHES DAY!!!! I am SOOOOOOO excited! We are going to have so much fun and I am proud of the total we raised. $680!!! It isn't too late if you want to donate...or you can wait until next year, we plan to make this an annual event if possible.

Here is your challenge for the day: Do something nice for someone else! It doesn't have to cost a cent, just do something to encourage someone else...what a better place this world would be if we remembered that the world doesn't revolve around us, it revolves around everyone.

Hope the walk goes well. I'm sorry it took me until today, but donation made. I hope it is successful for all involved.

[Panotchr]

I won't tell details of the DIS meet at the Walk for Wishes. I will let Judy do the telling, but I will say meeting her in person and getting to hug each other and meet each other's family was the highlight of the day for me!

Emily was thrilled to meet and talk to Judy and we got great pictures of Emily and Lisa together. Two wish girls

I saw someone post above that she has a child with EDS. My daughters have EDS, but I have two that are impacted fairly severely. Emily, my MAW, girl is having her seventh surgery this coming Friday.

Hope everyone has a great Saturday.
xo, Kelly

[MamaPotts]

Judy, so sorry about the hospital-acquired infection. I hope that he overcomes it soon and finds the road to recovery so that he can get OUT of there already! (Even with my drastically changed food choices, chicken and dumplings tops the list of comfort food ideas ... hope it perks him up.)

Glad the walk went well today!

Prayers to all.

[reelmom]

I haven't been on much but I have been keeping up with your updates. I am so sorry to hear about another set back with your Dad. I will continue to pray for him and your family.