NOBODY IS MORE SURPRISED THAN US! GKTW alumni return! 10/21 MOVING DAY!!

[mickeystoontown]

Hey Judy! Just wanted to let you know that I'm thinking about you all. Your trip is coming up so very fast!

 

[Moira222]

Judy -- I have FINALLY made it back to catch up on your trip plans & your beautiful family.

I'm only to late July (HA) but have to run. Just wanted to say hello,

that I LOVE those red white & blue strawberries MMMMMM

and I will be back soon to finish!

 

[DisNorth]

Hugs and Prayers Judy, hope you have a good Friday and everyone is doing ok.

 

[RooRach0906]

I loved the movie night pictures!! The butterfly was beautiful. Rachel did a wonderful job.

Glad to hear Rachel is improving.

Continued prayers for you and your family and the others on this thread in need of prayer.

Hope everyone has a nice weekend. My oldest sister will be here this weekend to celebrate her daughter, my youngest niece, 3rd birthday. We also have my FIL birthday to celebrate. I'm excited for some family time.

 

[lovethattink]

Good morning! I hope everyone has a great day today.

Judy, we will definitely be here during your trip. JJ had very nasty full body tics Thurs evening and all day yesterday. There's no way we can make the drive north. I hope that Rachel and Lisa are doing better this weekend and that no news means good news.

My dad is in a critical care vascular unit. He did have a stroke (there's a small amount of new blood on his brain) and now he is having seizures. He was to be discharge yesterday, but his leg gave out on him while he was brushing his teeth. So they ended up doing a 24 VEEG this weekend. My mom is frazzled. My dad thinks everyone is making a big fuss over nothing. He doesn't understand fully what's going on. He thinks he is just fatiqued and needs rest to get his strength back.

 

[happybelle]

I hope you are having a wonderful weekend.

 

[kaoden39]

My thoughts and prayers are with everyone!




I wanted to share a picture to show everyone the progress on our house.

 

[gopherdame]

Hi Judy,
Back from our lake cabin and just checking in and hope everyone is doing well. I hope Rachel has improved so she can really enjoy your vacation. It's coming up so fast, only 2 weeks now. We are going in 2 months and that is starting to seem close. I don't really prepare too much when it's just dh and I. I have booked the dessert party and we are excited to try it for the first time. It's been very hot in Minnesota this year. We were having hotter temps than Florida and high humidity too. Today is over 90 and that's really high for Sept. and all week is supposed to be hot and over 80. We did finally get a portable room air conditioner for our lake cabin and that really helped.
Robyn

 

[scdak]

Happy Saturday night to all!

 

[redomni]

Hope everyone is having a good weekend.

If I can ask for extra prayers for my dad. He is not doing well at all

Thoughts and prayers to everyone else that needs them

marilyn

 

[blessedmom4]

 

[blessedmom4]

Hi Judy,
Back from our lake cabin and just checking in and hope everyone is doing well. I hope Rachel has improved so she can really enjoy your vacation. It's coming up so fast, only 2 weeks now. We are going in 2 months and that is starting to seem close. I don't really prepare too much when it's just dh and I. I have booked the dessert party and we are excited to try it for the first time. It's been very hot in Minnesota this year. We were having hotter temps than Florida and high humidity too. Today is over 90 and that's really high for Sept. and all week is supposed to be hot and over 80. We did finally get a portable room air conditioner for our lake cabin and that really helped.
Robyn

Sounds like fun, glad you added air to the cabin, I am sure it made it more bearable! I do wish I had two more months to prepare! The dessert party sounds DELICIOUS!!

I hope you are having a wonderful weekend.

Thank you!

Good morning! I hope everyone has a great day today.

Judy, we will definitely be here during your trip. JJ had very nasty full body tics Thurs evening and all day yesterday. There's no way we can make the drive north. I hope that Rachel and Lisa are doing better this weekend and that no news means good news.

My dad is in a critical care vascular unit. He did have a stroke (there's a small amount of new blood on his brain) and now he is having seizures. He was to be discharge yesterday, but his leg gave out on him while he was brushing his teeth. So they ended up doing a 24 VEEG this weekend. My mom is frazzled. My dad thinks everyone is making a big fuss over nothing. He doesn't understand fully what's going on. He thinks he is just fatiqued and needs rest to get his strength back.

Huge prayers continue for your Dad and for JJ. I am sure postponing your trip has caused you more worry for your Dad and not being there. I know you wil have your hands full while we are in Florida, I understand!

I loved the movie night pictures!! The butterfly was beautiful. Rachel did a wonderful job.

Glad to hear Rachel is improving.

Continued prayers for you and your family and the others on this thread in need of prayer.

Hope everyone has a nice weekend. My oldest sister will be here this weekend to celebrate her daughter, my youngest niece, 3rd birthday. We also have my FIL birthday to celebrate. I'm excited for some family time.

So good to read your post Rachel, praying EVERYONE is well and pn the healing path! I am so excited you get to spend time with your sister, what a huge blessing!

Hugs and Prayers Judy, hope you have a good Friday and everyone is doing ok.

Thank you Tracy!

Judy -- I have FINALLY made it back to catch up on your trip plans & your beautiful family.

I'm only to late July (HA) but have to run. Just wanted to say hello,

that I LOVE those red white & blue strawberries MMMMMM

and I will be back soon to finish!

Thanks Mary Ellen, so good to see you! How was your trip? I thought about you a lot and realized it was a blessing I hadn't tired to figure out how to see you with Rachel so ill. Now I want some Strawberries!

Hey Judy! Just wanted to let you know that I'm thinking about you all. Your trip is coming up so very fast!

Thank you Lisa! My trip is gong to be here before I blink!

Judy, popping in to say I'm thinking of you and hope you are having a great day! Praying for all the requests on here.

Thank you! Praying for your sweet children and really hoping for a great report on Benjamin soon!

Back again today to let you know I'm thinking about you guys. Hope everything is okay!

Thank you! I have been LOVING all of the pixie Dust and fun your family has been enjoying, what a HUGE blessing to me to read!

Just checking in since I haven't been here in a few days. Judy I hope that everything is going okay and you haven't had any new problems crop up.

If I can continue to ask for prayers for my dad he is in ICU with pneumonia right now and they are having trouble keeping his O2 levels up.

Thoughts and prayers to all that need them

Praying so hard for your Dad and for you!

I Judy! I haven't read back to catch up at all. I hopefully will. We are back and getting back into the swing of things. I hope things Are going as well as could e expected anyways.

ERIN!! I can't wait to read about your trip, PLEASE give me a heads up when you start! It is so good to see you, I have missed you.

Popping in to let you know I'm thinking and praying for you.

Got a call yesterday, my dad was taken by ambulance to the hospital. It looks like another brain bleed.

Thank you!

95th percentile!!! What are you feeding her!!
I know! It is just such a huge blessing...and she is five feet tall, depending on which MD office we are at. The bad news on that is the teller she gets (not the bigger,the taller) the sooner we need to have her valve replaced, it makes it difficult to perfuse her.

You asked a few weeks back what her CHD was, it is ALCAPA and an ASD (common for many heart babies). It is one of the most extremely rare CHD's of course. Nothing but the unique for my girl! When Lisa was diagnosed 10 years ago, you could hardly find any info online about it, in the search engine it always asked if you meant alpaca! I like to think I helped change that. Unfortunately, when they repaired Lisa's Coronary Artery at UNC, they blew out her mitral valve (and probably were the cause of both her strokes). They also made her pulmonary artery too small, so as she grows, it stretches and that is the reason she needs a 4th (Pulmonary artery repair) and 5th surgery
(mitral valve replacement, which she will outgrow). The plan is to get her as big as possible and try to combine#4 and #5 in to one. This has been the plan since she was 5 (and they have scared us yearly since then...except this year! NO rush to Philly, PTL)!!!! We MUST have her surgeries don at CHOP, they are THE best in the country for her. It is difficult to travel ten hours for care...but the results are worth the cost! I will go ahead and say this, because we get asked this a lot. Do I wish Chapel Hill had not caused so many problems for Lisa and us during her first surgery. OF COURSE! BUT, they also saved her life, and for that I will be eternally grateful! Lisa's last 2 Open Heart Surgeries were done at CHOP. #2 was a repair of the mitral valve and an ASD repair. #3 was a replacement of the mitral valve and papillary muscles. They tried to do another repair, they just couldn't. This has caused Lisa to remain on coumadin the rest of her life, and all of the problems that come with that drug. Long term affects aren't known in a child, so few are on this drug and most are NOT on it for the reason Lisa is. Mitral valves are so rarely placed in children that ten years ago there wasn't even a valve that was made for a newborn. Her surgeon told me when we left CHOP the first time to get her to a year old, to give him something to work with...we made it to 16 months...God IS good! Okay, now that I have told you more than you probably wanted to know, I will stop. The DIS has been down since a few minutes after 4 and i am waiting on it to come back up, which it just did!



I know though what you mean about not looking like a heart child!! Sometimes I wish Mallory wore a sign that explained to all the she comes into contact with what she has been through and what precautions should be taken. I think because she looks so "normal" (besides the height) that people assume she is better!! This is why we were struggling at school.

I really understand this! If you had surgery, you MUST be "fixed".


Thanks for the support with homeschooling (Mallory is loving it an actually getting more done now) and thanks for the prayers!
So blessed to read this!
The same right back at you. I can't believe you are dealing with heart and brain issues!! Hugs and prayers to you and your family. I hope that Rachel will be turning the corner soon!!! I know the issues with Lisa must be heavy on your heart too! Sigh!! I hope you get good news soon!!

Big Hugs,

Madeline

Ahh, there is a complexity to all four of my children, they all have chronic health problems, as does Pete....but with the prayers of many and God's grace, each day is a gift and a Thanksgiving. I thank you from the bottom of my heart for your prayers!!

Praying all is well for you. Sending healing vibes and happy thoughts.

Thank you!

Judy, just stopping in to say I'm thinking about you guys and praying today's a good day.

Thank you!

Judy, hugs and prayers, sorry to hear about the continued computer issues! Praying for Rachel's improvement. Sorry to hear about Lisa's issues. Your medical costs are just shocking, I can't imagine. Glad to hear that David is enjoying his class and that Christian is doing well. You are all in my thoughts and prayers!

Loved the photos of Rachel's movie night. The butterfly is beautiful. I took an Entomology class in university and did a bug collection. I should look for my "bug box," I think I still have it around somewhere. Your butterfly looks like it's spread nicely already, so you shouldn't have to soften and spread it (but if you want to adjust the wings at all, you can put some wet paper towel with a drop of Lysol in the bottom of a jar and put butterfly in for a few days. Then it will be soft enough that you can gently manipulate it. We had fancy spreaders but David could make something with some soft wood- need two pieces with room between for the body. It has to be soft wood because you stick pins to hold the wings- not through the wings but around you can use some parchment/wax paper over the wings to help the pins hold it the way you want. Then let it dry in the sun).
If you soften it you can pin it but if you don then you should just be able to find/make a deep frame/shadowbox to put it in, just lay it in some batting. Tuck a mothball in the corner of the frame and display!
.

Thank you my beautiful friend for the kinds words and the prayers! I am so going to try and mount this butterfly, THANK YOU for the inspiration and instruction. David would love a class on bugs, must check that out!

Chiming in just behind Kathy here! I'm back as well (with a busted ankle now but at least that happened after we returned home!) and now I'm getting caught up!

Loved the Bugs Life themed movie night/dinner. You have some creative and clever kids!

I met up with Dean (Retired Grand Marshal host) last week and I have something that I will be sending you. Hopefully your PM box isn't full.

Loving seeing you love on everyone else despite facing all that you do with life's challenges!

I need to know what happened to your ankle! I tried to read about it on your PTR, but missed it if you wrote about it...Your trip is already off to a phenomenal start, so happy for you! I finally saw your PM, forgive me! I feel so blessed to have such strong prayer warriors, it is easy to love you all. I am now praying for healing vibes for you!!! I don't know what happened, but I DO know it is painful! HUGE HUGS!!!

Slowly catching up since we got home after 16 days away.

I am glad Rachel is making progress, and I loved the latest movie night.

Thank you and Welcome Back! Did you and Brenda hug and think of me????

I am overly tired and need to sleep, I have been waiting on the DIS to come back up. Love to you all and praying for each and everyone of you and your requests!

 

[p00h4me]

Judy, good to see you posting and loved the picture of Rachel. So glad that she was able to perform for SOR and also for open mic. Happy that Lisa's med change brought the real Lisa back and she had a great time performing. Praying for Rachel and Lisa and the whole family! Less than two weeks to go before you head to Orlando!

We will have company in a couple of days and want to try calling you today. It's been a busy week. Cleaning the house, the yard and garden. Had to take our truck in for a leak. We thought it might be the expensive leak they've told us to watch for. Found out it was a different seal that needed to be replaced and cheaper. It hasn't been driven much since Billy's cataract surgery and they said it could be the reason why the seal failed. Went to a fiesta in town yesterday for a bit. Billy went up with Tiffy for the 10 o'clock dedication ceremony. The little church in town is raising money for a new roof. They stopped having fiestas back in the 1960's. Billy took some videos and pictures. We went back around 1 o'clock because our neighbor said she was performing around that time. Instead, we saw a Ballet Folkloric dance. Billy said that he'll try to e-mail you clips of his video to show the girls. The church and town people really fixed up the little park. We didn't stay too long. The music was too loud for poor Tiffy's ears. The singer was really good but it was really loud. It was getting hot and Tiffy pooped out while we were walking back home. Had to carry her for a bit. Should have accepted the offer of a ride on a golf cart.

Judy, hope you got some much needed sleep. Praying for all the needs!

 

[VBAndrea]

Hi Judy! I truly can not believe that picture of Rachel. It doesn't look like her at all. I keep doing second takes and had to read before I was convinced it was her. I think the missing fedora along with the attire and hairstyle which are not typical Rachel really made me wonder. I'm so glad she is able to get up on stage and perform. I'm hoping your trip to FL will help her out to by just giving her a change of scenery and some fun times where she doesn't have to worry about remembering things and can relax.

We have had a really busy week with school starting. It all means soccer has started and this coach practices longer hours than what we have been used to in the past. Monday and Wednesdays are the only nights we have nothing going on. I have the kids on checklist schedules this year to keep on top of things. The good news is Alexa is in heaven now that school has started back. She really thrives on the social stimulation and loves her new teacher. I knew she would b/c it's the same teacher Ben had last year and she really is fabulous. Ben, of course, has her again this year and the kids actually sit pretty close to each other in the classroom. Later this month I will have to start making appts to look at schools for next year since ours only goes up to 6th grade. And since Ben is the only 6th grader there is no way they will ever go beyond 6th grade any time soon.

Anyway -- you don't need to clear out your pm box -- you can just e-mail me I am excited to hear the news!!!!!!!!!!!!!!

 

[Restrasz]

Rachel looks so grown-up! She looks beautiful! I'm so glad she's finally feeling better! What a scary time for all of you! I'm also so glad Lisa has her giggle back! Hope every one has a great Sunday! Ruth

 

[p00h4me]

Here's some information that I've been reading about lately. I just ordered the new book called, "Grain Brain: The Surprising Truth About Wheat, Carbs, and Sugar--Your Brain's Silent Killers" by Dr. David Perlmutter a board certified neurologist and nutritionist. You can go on Amazon and read quite a few pages of the book that's coming out next week. He touches on the subject of what wheat, carbs and sugar does not only to the brain but to the whole body. We think of these foods causing individual diseases like diabetes or arthritis but these foods are silently attacking the whole body that can later set you up for developing dementia or Alzheimer's disease.
Here's his web site: http://drperlmutter.com/about/perlmutter-health-center/

Take some time to listen to the audio interviews at the bottom of the page:
http://drperlmutter.com/news/media-appearances/

http://www.mindbodygreen.com/0-10753/the-surprising-ways-grains-are-destroying-your-brain.html

http://answers.yahoo.com/question/index?qid=1006041920125

http://drperlmutter.com/category/success/

Cyrex lab tests are needed to show if you are gluten sensitive.

Praying that this information will be of help to those of you with family members who are having neurological issues.

 

[Debbie19]

So glad to see a quick update. Glad everything is moving in a positive direction. Hope that trend continues! Since I don't post much I will wish you a magical trip now.

Debbie

 

[thebeesknees]

Judy, thanks for the update! Rachel looks so beautiful, I'm so glad she was able to perform. I know she must be frustrated about the headaches and memory issues, but keep it slow and steady, she'll get there! I'm glad you are seeing real progress now. Prayers that you will be able to keep her stimulation to a minimum, but I am glad her doctor feels the music is so good for her. What great news to read that Lisa is getting back to her bubbly self! Prayers that she will not be getting ill again. It's such a catch-22 to go in to the doctor's office these days. With all the germs that are in there, you can never know if you'll come out with a new bug, ugh!

Tink, prayers for JJ and your Dad as well. I'm sorry they are both having a difficult time right now.

Redomni, prayers for your Dad, as well. And for you, too, as you try to support him through this.

Michele, your house looks great!

Benjamin is doing pretty well right now, thanks for asking. Since moving his locker, he's had no issues. He started playing trumpet in band and is LOVING it. He has been practicing so well every day without reminders and I think he wants to try to go for Jazz band in January, if he can play well enough by then. It is by invitation only from the band director and he is determined to practice enough that he is invited! I met with Ezra's teacher on Friday about his behavior in the classroom, and we are going to keep watching him to see about getting a referral for testing. She said she has seen some progress this past week, but he still really struggles with an extremely short attention span and is having trouble with listening, especially in a large group. I've had a gut instinct that something is "off" with him for awhile, so I'm hoping we can get this sorted out soon. The school has to watch him for 60 days before giving a referral, so the clock is ticking!

 

[Redwavess]

You must be so proud of Rachel! She looks awesome up there on stage!!! I'm glad to know that she has something in her life that like music that can aid in here stress relief and recovery.

That's cool that both girls got to perform at up mic night!!

I just googled ALCAPA and there wasn't an alpaca there to be found!! I think that it is awesome that you were able to get more info on the web to support families facing ALCAPA. I know that it was a HUGE help and blessing to me, to be able to find resources on the web!!

Thanks for sharing Lisa's story with me!! I know you are super busy and I appreciate that you took the time to do that.

I can't believe how fast your trip is approaching. I'll be watching my PMs in case you decide to PM the info!!!

Prayers for continued healing for Rachel and a stress few couple of weeks so you can plan, get ready to go, and have an awesome trip!!!

Madeline

 

[lovethattink]

I wish I had time for a more detailed post; alas, I am too tired. Rachel had a show Saturday night with School of Rock. She is still foggy headed, although the headaches seem much better which thrilled her Neuro on Thursday, she feels this is all concussion related now and HOPEFULLY will not have her migraines stirred up. That is a blessing, it took us years to get them controlled. Neuro does think it will be up to 6 months post injury before we see the "real" Rachel. In the meantime, I still have to police EVERYTHING and school work has to remain light and stress free, nothing to intense. VERY frustrating. Neuro wants her to continue her music, she feels it has been her biggest stress reliver and for Rachel, playing songs is soothing...until she can't remember them, and yes, sadly, this has happened). We had to get Rachel out of there immediately following her last song, Thank God for ear plugs and medicine, she wasn't feeling her best, but did an amazing job and looked GORGEOUS! I should have gotten more pics pre-show, because she wasn't well after the show. I will say she had a lot more stage presence than she has had on any other rock show, these guys go nuts on stage and that hasn't been Rachel's style, she is more laid back. Last night she killed it both on guitar, vocally and dancing. This pic was her last song on guitar last night and she brought the show to a conclusion singing a duet with Home Sweet Home, she nailed it. I was SO proud of her! By this point in the show all of the curls/volume had fallen, thanks to the humidity/heat on stage...but she still looks rocking!

Lisa has been doing quite well and she and Rachel both performed Wednesday night at the Open Mic night and again, just wonderful performances! The best part of that night was FINALLY seeing my little Lisa back...we had a medication adjustment in August of her seizure meds. Lisa has not been well since her sinus infections in June/July and very quiet, not herself. The first thing neuro noticed at our last appt was how she wasn't her bubbly self and she immediately thought it was the meds (that is why she gets paid the big bucks). Neuro had not seen Lisa for almost 6 weeks and at that point the med change wasn't that noticable. Even Lisa's speech, OT and PT noticed a huge difference. I realized at the Open mic that Lisa had her "sass" back and then almost cried tears of joy as I realized it had been the meds making her so different the past few months. Lisa was giggly and bubbly pre-show and so engaging on stage, I LOVED it!!! My only concern tonight is she was so tired at the show last night and I began to see signs of a stuffy nose, lots of congestion, etc. If she wakes up sounding/feeling poorly I am hoping to get her in to see the doctor today. That is probably where she picked this up, we were in last week for a problem and the place was crawling with ill children.

Thankfully, David and Christian are both doing well, as is Pete. No new issues, other than their typical health problems. I will take it! At least I know how to deal with those.

Our trip is in less than two weeks I NEED more time! I am debating sharing some news here or not, haven't quite made up my mind, if I don't I will send it via PM to those who read here (once I make some room ).

Many thanks for all of the wonderful notes to my family, I will try and answer a few that were written directly to me. I will NOT get to all of them, I do need to sleep; however, I KNOW you understand or you wouldn't be here!

So glad to hear Lisa's med adjustment did the trick and she is back to her old self! And that the boys are doing well.

Wow! Rachel looks so different in the picture with her hair and make up. So glad she is able to continue with her music. I'm sure that is helping her recovery since she loves it so much.

Huge prayers continue for your Dad and for JJ. I am sure postponing your trip has caused you more worry for your Dad and not being there. I know you wil have your hands full while we are in Florida, I understand!

Our vacation up north is cancelled. We won't be able to post pone it. The way dh's vacation works, he has to turn in dates for 2014 next month already.

JJ went to Sunday School this morning. He had a little bit of ticking, but was able to hide it. His leg shook and his fingers looked like he was playing the piano. Nobody but me and him noticed.

JJ would love to see Lisa if that can be arranged while you are here. I know we both have to play it by ear.

My dad is still in the hospital. His 24 hour VEEG turned into a 48 hour VEEG. Last I talked to my mom, they had just caught an episode on video. I'm so glad they didn't discharge him yesterday like they had planned. It's good they extended the test another day too.