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| Mom's a few days late with the Birthday wishes but we celebrate "Birthday Weeks" around here anyway! Sunday, August 3rd Brooke spent her Birthday at Lambeau Field. Thanks to Abby Z., a "buddy" of Brooke's (from TeamUp camp 2007) and very good friend, we enjoyed Club Seats at Family Night. After the lightning finally subsided, the evening was underway. It was quite a sensory experience for Brooke, and not a positive one at first! As soon as she would stop moving, sit in her seat, and look out below at the 60,000 occupied seats of Lambeau, she would become fearful and unhappy. (How many stadiums sell out for a scrimmage!? I'll bet NOT the New York Jets!!) Thanks to all those who joined us that day in helping keep Brooke happy, you all put several miles on the buggy that night. I'm happy to report Brooke did rally, getting comfortable with the situation, and we enjoyed ourselves. As it turned out, the 8 of us were able to sit together within the club seats, which helped so she could be near Tony and Kelsey. So amongst K and T, Nancy, Julie, Ed, Brady, and I, she was content. We look forward to having everyone over on Saturday to celebrate her 11th Birthday. Thank you all for reminding me how blessed we are in terms of what Brooke has accomplished over the years. Sometimes as parents, and some of you can relate to this, we need those reminders especially around Birthdays and Holidays. God bless Brooke on her Birthday and always, as well as everyone who shares in her milestones and happiness. |
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Posted by Vicki Barels at
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Summer is in full swing....finally! Brooke continues to attend PT twice a week at New Berlin Therapy. We typically only go 1x per week, but since there is no school therapy now we did get 2x per week approved through summer. After summer we may be looking at denied services outside of school. We shall see...as long as Brooke continues to make the considerable gains she is and is meeting her goals, I feel I'll have an argument there. Her goal, by summer's end, is to be walking independently within the home using one cane. She can do this, but it's not as safe as I'd like to see it. I need to be right there, "just in case". She tends to lose her balance backward and hasn't figured out a defense to her fall. We'll continue to work on stability, repetition works for Brooke.
We're enjoying the pool this summer and what great, fun therapy for her! She can touch bottom and her PT says the more walking we can do in the pool, the better. We are entertaining the idea of a return trip to Hangzhou. The stay wouldn't be as long this time, hopefully as few as 20 days. We're still considering our options, as for a time frame, possibly May of 2009.
Thank you again for your interest, thoughts, and prayers. |
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Posted by Vicki Barels at
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Hello All: I had updated Brooke's site last week, but for whatever reason, I don't think it showed up. Well, we are back at Conductive Ed, today is first day of class. We had a very soggy drive over, rained the whole time. Still managaed to make pretty good time, and Brooke was perfect, no complaints. She was happy to see her friends here again and is into the routine already.
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Posted by Vicki Barels at
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| Here's a happy update. Miss Brooke insisted on doing everything herself tonight in getting ready for bed. She had gotten some High School Musical bubble bath from Aunt Shar and she put her bubbles in, ran the water, stepped into the tub with no help. After she picked out her pajamas, and got out her "Trouble" game and wanted to play. It's great to see her self motivated. She finds such reward in doing things by herself. |
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Posted by Vicki Barels at
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Brooke and Ed returned from Michigan the week before Thanksgiving. We feel we have a lot to be thankful for when it comes to enjoying Brooke's new abilities. She is so eager to continue to walk using her canes, and even just one cane. Thanks to Physical Therapists here, Conductors in Michigan, stem cells, and Hyperbarics, she is progressing more and more. We have so many professionals on our side who are dedicated to helping her improve. And of course we have the determination of Miss Brooke. That is and always has been admirable, how she never gives up, wants to try harder until she can master the task. We see that and assume the role of trying to provide as many opportunities to her to advance. Craig has posted the Milwaukee Channel 12 News story on the main page. Check it out and see for yourself how far Brooke has come. Thanks again to everyone reading this, for your interest, for your prayers, for following Brooke and her journey. |
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Posted by Vicki Barels at
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Brooke has begun her 2nd week of Conductive Education. She is doing well. She enjoys her school days here and has been getting a major case of the giggles at night! She has many friends at the Ronald McDonald House who she enjoys being with evenings after school. It's good for the kids, they all get along so well. So do the Moms. We've been enjoying eachother's company and sharing stories and experiences and some shopping excursions too! Brooke and I have been trying to keep busy after school for awhile before returning to the House. She of course wants to eat right away and that makes for a long night if she's eating dinner by 4:00. Yesterday we went to the library and read books, did puzzles, and today after school she wants to pick out a couple puzzles from the store. Course we have hundreds of them at home.....
Joyce G. is due later today and will interview and video Brooke's progress during Conductive Ed. The Conductors here are very pleased with her progress, being able to walk with her canes, and using just the one cane. Brooke also follows the group vocalizing (ie "sitting tall" "feet flat" back straight", they sing this and Brooke really is trying to say the words!) Better go pick her up, day of school is almost done. She goes every day from 9-3:00.
Thanks for caring and praying for the Queen.
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Posted by Vicki Barels at
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Posted by Vicki Barels at
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Yesterday Brooke took 12 steps by herself. Remember, prior to stem cells, it was 2 steps. Her record is still 26 independent steps. She continues to use her canes. Her Physical Therapist mentioned again today the amount of stability Brooke shows in different activities. (Bending, standing) We need to keep her heel cords stretched though, her smo's may be a little small, we will be getting her re-fitted soon. Her speech continues to improve. At school last week she said, "I want a book." She then reached for a notebook and said "pen." There have been many, many instances I could describe where Brooke is initiating conversation. This is something she'd never really done before, she would answer "hi" when greeted or "I love Mom" when I would tell her first, but now she is consistently the first to speak. The ideas are hers!! She is using her Dynavox "V" at school. This is her new communication device. Her Speech Pathologist is thrilled with how quickly Brooke is picking up on how to navigate through it. We leave at the end of the month for Grand Rapids. We will attend Conductive Education there, which we have participated in before and believe in. (To find out more on CE, you can check their website, www.aquinas.edu I think that's it, if not you can search conductive education grand rapids. Anyway, it is a wonderful program of Conductors from Hungary who have an incredible ability to motivate the kids and bring out the best in them. It will be exciting to have them see Brooke's improvements so far. They have known her approx. 4 years. Looking back, I am glad we went to China. It gave Brooke a little "jump" on her abilities and allowed her to master skills that would have taken her years to accomplish. There is no quick fix, or cure for glut-1 or other related brain disorders, but if we can provide her an opportunity to improve her quality of life, we do so and ask God for guidance in our decision making. Thank you all for caring. |
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Posted by Vicki Barels at
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There has been some interest generated as a result of the media coverage of Brooke's symptoms and journey to China for stem cell infusions. Please, families, if you wish to contact me direct, email me and I can call you and hopefully answer your questions about how we found Brooke's diagnosis and the steps we have taken to treat it. vbarels@aol.com We are in this together, parenting special needs children, and I support sharing stories and resources! |
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Posted by Vicki Barels at
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Well, we have finally been able to view the China segment! We are blessed with wonderful family, friends, and a caring community; all who rallied together to make this all possible for Brooke. Ed and I had said in the beginning, if we can help one family get correctly diagnosed, it is worth putting ourselves and Brooke out there in an effort to help someone else. We may have accomplished our mission. A family from Alabama phoned me the same night the piece aired. Her daughter, undiagnosed with developmental delays is so similar to Brooke, down to some very specific details regarding movement, speech, personality, cognition, looks. After speaking with the Mama, I am quite certain her girl also has glut-1 and she has begun the process to get the diagnosis. Our prayers are with them as they find their answers, just as we and many families before us have had to. Happy Holiday weekend to everyone! |
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Posted by Vicki Barels at
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