Friday, February 1, 2008


We are working with Nan (our PT) to find a stander for Brooklyn. (The one we currently use is on loan through her early intervention program.) This one in the picture is called the Squiggles Stander. OK Rett moms that read this blog - anyone have any suggestions? complaints?

I am looking for a stander that has a detachable tray. It also has to give Brooklyn the support she needs. National Seating is the company that is getting Brooklyn her wheelchair, they are trying to get one of these for us to "try out." We are also considering the Rifton Stander I just do not like how huge it is and the tray does not come off. Hmmmmm......


Anonymous said...

Kelly, Charlie, and Brooklyn,
This is the first time I have viewed your blog, I apologize for not being here sooner. I have to start by saying what a lucky little girl Brooklyn is! She has the unconditional love and support of family and friends and what a blessing that is. The combined effort of all of you to help to bring Brooklyn to her potential is heartwarming and amazing. I know first hand the love, dedication, frustration..all the emotions that go with raising a special needs child. There is nothing more difficult and nothing more rewarding. I could go on....because it is something near and dear to us...having a special needs niece and nephew...both with cerebral palsy and both wheelchair bound. The love and lessons all of us have learned from watching them grow and experience life and happiness are priceless. I know they are for you and Charlie and your families as well. I am very, very proud of both of you. How in the face of this challenge you have continued to do what needs to be done to raise awareness for Retts and make sure that Brooklyn thrives. I am especially proud of Brooklyn and her progress, of which would not be possible without your fortitude. I know there are times you think you wont make it through another day....but you do...because of sheer love for your daughter...there is nothing greater. I promise to keep better tabs....her progress is amazing. She is a beautiful, beautiful child.
xoxoxoRuth Mattox

Alisa said...

I couldn't agree more with Ruth. Once I started reading your blog I was hooked because I could feel all the emotions that were in your writing and I want to see how Brooklyn overcomes her challenges. The recent video's are showing her will power & tenacity...what a strong spirit she has! The smiles that come from her sure do light up my room from where I'm viewing as I know they light up yours!! I hope you find some tips on the standers and be sure to keep us posted. You and your husband are doing such an admirable job!
The Parker Family (Ava & Andersen)

Kay said...

Hi Kelly - This is the first time I have read your blog and I am glad to have found your posting through RettNett. My daughter has a Rett variant (CDKL5) and we are evaluating her for a stander now too. She is using a Tri-Stander now (on loan from her therapy center). We are leaning toward the Easy Stand Magician. Have you seen their product? It's a sit-to-stand piece which seems like a great concept. I saw the picture of the one you are evaluating Brooklyn for. Has she gotten it yet or tried it out? I was curious about this model too.

I am impressed with your blog! I will be sure to check in periodically. If you want to get to know my daughter, Jade, check out her blog at

Brooklyn is beautiful!

Jade (3 yrs., CDKL5)