Brooke's Journey

Blessings as we've started a New Year

Vicki Barels — Mon, 25 Jan 2010 02:27:00 GMT

Happy New Year to all. It's been awhile since I've updated Brooke's blog, we've been busy, busy, busy. Brooke is doing well, continues to enjoy school and is excited about all she is learning. She has begun a new reading program at school! She attends the East Troy Middle School, is in the 6th grade. Her mornings consist of a life skills class at the High School which she also enjoys. We have a dedicated staff who encourage her independence. She is completely independent in many self help areas which makes us all very happy and herself very proud. Persistence has paid off for her in so many areas. We are looking forward to starting, again, therapeutic horseback riding in the spring. It's been awhile since she's ridden so we're excited to see her enjoy this again. Hope the new year finds everyone counting many blessings.

THANK YOU TICHIGAN LAKE LIONS CLUB

Vicki Barels — Tue, 01 Sep 2009 23:51:00 GMT

CARS , CARS, AND MORE CARS! Wow, what an awesome car show hosted by the Tichigan Lake Lions Club. With about 500 cars registered in the car show, everyone enjoyed a sun filled, fun filled day complete with food, beer, soda, a play area for kids, DJ with great music, and so many beautiful cars, modern, classic and everything in between. Our thanks to the Lions Club for choosing Brooke to be the recipient of funds raised on the 350 Chevy Engine raffle. We got to hear it fire up every so often, ticket sales were great! The money raised will be used for hippotherapy, making the yard more accessible, as well as possibly an appointment with one of Dr. DeVivo's colleauges, whose mission is to find a cure for GLUT-1 by 2019. Our thanks goes also to those who came out to show their cars, support the raffle, and just coming out to enjoy the beautiful day. If you were unable to come, I recommend going next year. It was the biggest car show in our area. Amazing! Family and friends came through once again, showing their love and support. Brooke put on several miles in her walker, going round and round, and up and down that huge hill. Nothing slows her down! She drew the winning ticket at the close of the car show and accepted the check from the Tichigan Lake Lions Club.

GLUT-1 DS Conference

Vicki Barels — Thu, 13 Aug 2009 23:13:00 GMT

What a great visit we had with the Stovers from Alabama. They loved Wisconsin and decided they could live here if it wasn't for the cold and snow. After a few days here, we went to the first ever GLUT-1 Conference in Hoffman Estates. We were lucky it was so close to home. GLUT-1 families from all over the world came for this. Our Doctors and research team from New York spoke, we were able to meet many other GLUT-1 families, share stories and recipes, it was quite a gathering. Brooke and Brady enjoyed a fun filled day while Ed and I attended the Conference.
August 3rd Miss Brooke had her 12th Birthday. She was SO excited for her Birthday, we had a nice party with family and friends, thank you all for the gifts chosen especially for Brooke. Looks like another year of "best dressed"!

JOIN US FOR SOME FUN on Sunday, August 30th . The Tichigan Lake Lions are hosting their Car Show. Location is Hwy. 164 & Jensen, in Tichigan. 9am - 4pm with DJ Don Kasper at Noon, RUPENA'S Pork Chop Sandwiches, beverages, craft fair, and 3pm trophies and awards. There is an exciting raffle the day of the car show. They are raffling a 350 CHEVY ENGINE (valued at $3,500.00) or if you choose, you may opt for the $1,000.00 CASH! The Tichigan Lions have offered the proceeds from the raffle to benefit Miss Brooke. As many of you know, there are various therapy opportunities we provide Brooke to increase her independence, confidence, and overall quality of life. We are considering introducing Hippotherapy again (horseback riding...which she LOVES), and now we are doing Hyperbaric Oxygen Therapy, as recommended 2 months post stem cells. Thank you A&M Hyperbarics for Hope for making this possible! Raffle tickets can be purchased from any family member, they are $5 each, or 3 for $10. We appreciate your support, hope you can join us that day, and as always, thank you for your many prayers. Our blessings are endless. Look for the "red shirts" at the Car Show!

Welcome Alabama Friends!

Vicki Barels — Tue, 21 Jul 2009 17:41:00 GMT

This weekend seemed so far off and now it's nearly upon us. Our friends from Alabama are on their way to Wisconsin, due to arrive at 7pm tonight! The Stovers, (daughter Jordan, dx GLUT-1) will be staying in Wisconsin tonight and tomorrow night, prior to heading to Chicago with us for the first ever, GLUT-1 Conference. There are families coming from all over the globe whose children share Brooke and Jordan's rare diagnosis. How exciting it will be to meet families, share stories and keto recipes, as well as hear Dr. DeVivo, (Mr. Glut-1 Himself!!), and his research team and keto nutritionists speak. We are hoping this will become an annual event. God watch over our traveling families!

Jonas Brothers & Baseball

Vicki Barels — Mon, 13 Jul 2009 20:41:00 GMT

Every girl's two favorites? We found in the last 4 days, Brooke LOVES both! She attended her first concert, featuring the Jonas Brothers. Never in your life will you witness more screaming teenage girls! The environment was as loud as the concert, but Brooke loved it! Our seats at the Bradley Center were in the Cambria Club, so we had full service food and soda. There were enough selections within Brooke's diet guidelines for her to enjoy it. The tickets had been donated to the Make A Wish Foundation, and were offered to Brooke.

Yesterday we attended the Brewers Game. We helped the MakeAWish Foundation celebrate their 25th year of granting wishes. What an event. There were 2200 fans there in support of the Foundation. We had 11 of the 2200 in attendance: Brooke, Brady, Shar, Cindy, Chuck, Mike, Kelsey, Josh, Robert, Denise, and myself. Ed was sorry he missed it, but had prior plans to attend the Nascar race at Chicagoland Motor Speedway. Lots of fun had by all!

Hope everyone is having a fun-filled summer and enjoying all of God's blessings!

West Lake

Vicki Barels — Fri, 08 May 2009 11:32:09 GMT

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GREAT to be back home!

Vicki Barels — Thu, 07 May 2009 09:20:00 GMT

Brooke and I are happy to report we are home! We left Shanghai 4pm local time and arrived 4:20 local Chicago time. The flight went well, Brooke did fine. It seemed faster coming home than going, she did sleep about 2 hours total. It was so nice to see Ed and Brady waiting at the airport with "Welcome Back" balloons for the girls. We ate at Cracker Barrel on the way home, (thanks again Roy & Nancy!). It will be interesting to see how long Brooke sleeps in this morning, course it's 4am and I'm up. Although, hopefully not for the day. I came home to a clean house, yes! Laundry and bills will be on my agenda the next couple days as well as getting back on USA time. Then back to work and school next week, and we pray for many upcoming improvements for Brooke, and for Rachael and all those special children we met while in China. The love and dedication you see in these families is remarkable. If any of you are keeping up with Brooke's blog, we are praying for success for all of you. We will keep in touch.
Thank you again, all you supporters out there, it's comforting to know you care.

Edit: Adding some pics...

Last stem cell treatment

Vicki Barels — Mon, 04 May 2009 09:34:00 GMT

We are so happy to report the last treatment is completed! Dr. Mike did the last of 4 stem cell injections today. Brooke is doing fine. It is 2 hours post and she is just starting to ask to eat, so I'll give her a little something to hold her over until she can eat more with no nauseous effects.

As thankful as we are to have this opportunity to receive stem cells that are safe and hold no ethical issues, we are so happy to say we are leaving in 2 days! Thank you again, to all of you who care for Miss Brooke and have shown us just how much by helping make these treatments possible.

We look forward to seeing everyone SOON.

One more week!

Vicki Barels — Wed, 29 Apr 2009 01:45:00 GMT

Happy to report we're down to one week left. Brooke has her last spinal on Monday, May 4th, and we leave Wednesday, May 6th. I hope the weather has improved at home. It has been pretty warm here these first 2 weeks. We went to the Grand Century Hotel yesterday to the 41st floor and took some pictures. It was pretty neat. Something different to do and see. We went to a large mall downtown yesterday also, you would need a whole day to see it all, many levels, lots of stores. Didn't buy anything, just walked around.
Brooke did better with her 2nd spinal. She was doing well the next day already so I'm hopeful for this last one, as we'll be coming home after. That sounds good, we miss everyone and are looking forward to next week!

A pic of Brooke from China

Vicki Barels — Tue, 28 Apr 2009 15:35:00 GMT

Just testing out some of the new blog features - I hope you all enjoy

Webmaster Craig

Our weekend

Vicki Barels — Sat, 25 Apr 2009 00:41:00 GMT

Today is Saturday morning. Brooke has continually gotten better this week after her first spinal. She is just SO tired still. Today we need to get to the store and tonight is Sophie's wedding. She is a nurse here who is one of our favorites. They are all good.

Thursday Jon was in town with a Doctor from Jordan who does stem cells in his country for spinal cord injury. He did a lot of studying stem cells in the states, but was frustrated when he could only take his knowledge so far, and went back to Jordan. Jon stayed in town the night so invited Nancy, the girls, and myself out for dinner. We went downtown to a place called Shamrock's and had western food. Burgers and steak, it was fun. ( Jon is the head of the international department here who we dealt with a lot the first time, two years ago.)

Weather forecast looks decent for today so our walk should be nice.

Monday most likely another spinal, I'll let you know.

Day after spinal stem cells

Vicki Barels — Tue, 21 Apr 2009 02:57:00 GMT

Brooke slept well last night and I thought today was going to be fine. It's not terrible, but we went down for Physical Therapy, and after about 10 minutes she said "nah." And said that her back was hurting. I brought her back to her bed, they have a heat lamp I put on her back for 30 minutes and now she is getting the electric wave therapy on her arms and legs. (not painful). We cancelled Occuptional Therapy for today. After the electric wave therapy, we're going to go for a walk to the park, get some KFC and have a little picnic with Rachael and Nancy. Just something relaxing, so as to not overdo it. She is not scheduled for another stem cell treatment this week, but most likely another spinal on Monday. They space them apart, and she has therapy in between. Rachael is still doing the accupuncture in her head, Brooke watches but will NOT participate! Can't say I blame her!

First Lumbar

Vicki Barels — Mon, 20 Apr 2009 09:55:00 GMT

Brooke is resting comfortably....following her first lumbar puncture of stem cells. We are about 2 hours into recovery, she can eat soon. She has not asked once since she was out, maybe a little groggy from the sedation yet. She just asked to go potty, sweet thing. Bummer is she cannot get up for another 4 hours yet! Her lower lip came out when I told her we couldn't go potty but it was okay if she used her pullup. What a big girl! No other option.
GREAT NEWS: We did get Dr. Mike for Brooke's injection. I let it be known, somewhat subtly, that I preferred he do the procedure. For those of you who don't know, he was our Doctor last time, 2 years ago, however now he is "in charge" and does a lot of speaking and teaching, but he did come through for us, that was nice to see him in the OR ready for Miss Brooke! Very comforting during a stressful time.
2 treatments down, 2 to go. Nancy and I are considering an early flight home, we'll see what the schedules look like after this week. We'll each have 2 stem cell treatments left. We'll see what Doc says.

Monday morning

Vicki Barels — Sun, 19 Apr 2009 23:37:00 GMT

Brooke is just waking up this morning, it's about 7:30am. Today is Monday, she has her first lumbar stem cell treatment. She cannot eat after 9:00am, so she'll have breakfast, then I've tried to plan her morning and early afternoon in such a way as she won't get bored and think about eating. SO, the plan is to have Tom (one of the drivers employed by the Beike Group) first take me to the bank so we can exchange some money. Then, we'll come back, and the 4 of us, (Brooke, Nancy, Rachael, and myself) plan to go out for a walk, go to the store, just keep busy following their therapies in the morning. They start an IV for Brooke up here (20th floor), then wheel her down in her bed to the OR. Anesthesiologist was up and checked her yesterday, she will be under a general, and the procedure won't take but an hour total, including the 20 minutes or so they keep her while she wakes up.

She can then eat 2 hours after the procedure, she needs to lie flat for 6 hours following, although they said she can roll up onto her side to eat. So we're planning a little picnic in our room today, the Schindlers will come over.

We've met some real nice families here. There are several here from the States: Florida, Texas, Oregon, and Michigan. In addition, Malaysia, Japan, Australia. There is a man her with MD, he is improving already, his blood work is showing slowed muscle atrophy. He's pretty excited!

Took some time to update this, as I said internet connection is pretty slow.

I'll let you know how today goes, until then......

2nd China trip is upon us

Vicki Barels — Mon, 13 Apr 2009 00:05:00 GMT

Happy Easter everyone! Hope this finds you enjoying your Holiday with family and friends. We enjoyed an Easter Brunch today, the whole family was there. It was a special day for all of us, a way to celebrate Mom's heart surgery recovery, which is going very well. Thank you all for keeping Mom in your prayers!

Tuesday is take off. Brooke and I are returning to China for another stem cell treatment. We will be there for 3 weeks this time. Last time was a whole month. She will receive 4 stem cell injections, under the care of the same Dr. Mike at Xiaoshan Hospital, Hangzhou China. I will keep her blog updated for those of you who are interested. We will miss everyone, we have such a supportive family and group of friends, we love you all and thank God for having you in our lives.

Brooke's journey continues......

Brooke and Rachel make the News

Vicki Barels — Tue, 17 Mar 2009 13:44:00 GMT

For those that may not have seen channel 12 Sunday night here is the link

http://www.wisn.com/video/18940985/

- Webmaster Craig

Last Day of Michigan School

Vicki Barels — Fri, 27 Feb 2009 14:48:00 GMT

Well, I have finally managed to sit still long enough to post a message! Today is Brooke's last day of Conductive Education here in Grand Rapids, Mi. It's been a great 4 weeks. She is ready to go home, says she misses Dad, Brady, and of course, "wah-ee". We will leave in the morning and bring Sabrina and Jordan to O'Hare where they will fly back to Huntsville, Alabama. We will miss them and I am dreading the good-byes at the airport. All the kids have really been great this session. They have become such great friends over the years. It was fun catching up with the other parents too, we've done our share of visiting, laughing, and enjoying the company.

We will be home for the month of March and mid April we will return to Hangzhou for more stem cells. With the benefits we saw from the first time, we knew it was right to return. This time we will only have to be there for 20 days. The first week will be Easter break, then 2 more weeks after.

Again, thank you everyone for keeping Brookie in your thoughts and prayers.

Brooke's Blog Comments are now moderated

Vicki Barels — Wed, 11 Feb 2009 20:26:00 GMT

Sorry everyone but I had to do it - we have just been getting too many spammers on Brooke's blog to let entries/comments automatically show.

I will periodically "approve" your comments for those that aren't spamming. Please be patient as our ratio seems to be one "real" comment to 20 spam ones

Regards,
Craig the webguy

Video and Cast Update

Vicki Barels — Mon, 27 Oct 2008 12:19:00 GMT

Craig posted the video taken by Alabama news station at the airport to Brooke's website, www.brookebarels.com if you want to take a peek. Jordan's big smile will melt your heart! I sure miss her and the family. They are such great people, walking a similar path.
An update on Brooke's serial casting: I cannot believe the improvement in her range of motion. We've been keeping an eye on this for several months prior to deciding to go ahead with the serial casting. Her measurements have always been below zero, -2 and -3 (90 degree flex being zero) and now, after 4 weeks of casting increasing the range each week, we are at a POSITIVE 12 on the right side and a POSITIVE 10 on the left side. These are huge gains, her feet have never looked so good. She wears a cast only on the left side for this last week, and that will come off on Thursday. That will be it then for the casting, her new SMO's are done (inserts for her shoes that keep her heel cords from tightening back up and keep her from rolling her foot in). She also will wear night splints in an effort to keep her loose. I'm sure she will love the freedom of no casts! She's been a trooper once again, in dealing with them, nothing negative to report. Thanks for caring about our Queen and checking in on her progress.

Back Home

Vicki Barels — Tue, 14 Oct 2008 03:47:00 GMT

We landed in Chicago last night at 11:30pm. Made for a very late night getting home and to bed. We were SO tired! Brooke slept on the way home from O'Hare. This morning it was up and to New Berlin for her recasting. This is week 3 of the serial casting, and we are making good progress. We are hoping after wearing these until next Thursday, it will only take one more round of which she will wear a week. Looks like we'll be using night splints from here on out to keep the heel cords stretched. We are trying to avoid any surgery. Our last day in Alabama started with Sunday service at the Church of Christ in Decatur. What a beautiful church and service it was. Minister Mike Nix shared our story with the congregation and welcomed us to Alabama and to their worship service. He said, "I'd like it if they moved down here!" He and his wife loved Brooke and we look forward to seeing them again on a return trip some day. We went to lunch after and spent some time at the Stover's in the afternoon before heading to the airport. Good-bye was tough, as we expected. Both girls are due to see Dr. DeVivo in New York, we are tentatively planning meeting there next spring and then having them to Wisconsin in the summer. They don't do snow!! I would love for you to meet Jordan and big sister Taelor, they are such sweet girls. I miss them already!