I will pray for your little girl.
What about a screen? But one that would act as a picture board, bulletin board, etc. It would be a wonderful place to put those letters and notes of well wishes, photos, paintings done by friends and family. Sending you all good thoughts.

A dresser painted with chalkboard paint would allow something fun and colorful to label. colorful carts http://www.bing.com/images/search?q=Medical+Storage+Carts&Form=IQFRDR#view=detail&id=61524ADC75FAC2D0F90CA89BCC5E12493AD96459&selectedIndex=177

Here are some ideas to consider: http://www.bing.com/images/search?q=Image+bed+tray+desk&qpvt=Image+bed+tray+desk&FORM=IGRE#view=detail&id=1A05E8FD5F13B1D878A11642F136A3650CEF656B&selectedIndex=22

something fun; Interactive funiture http://www.trendhunter.com/trends/led-coffee-table

I cared for a family member in a hospital bed at home for several years. Bought 2 "happy" floral twin duvets so one could always be in the wash. Colorful sheets or at least pillowcases. Some equipment went under the bed. Only one side of the bed showed from the entrance door, so I had only that side looking good. I cut the dust ruffle to fit the length of one side of bed and hemmed the 2 short ends. Then I sewed sew-on-velcro on the dust ruffle folding the raw edges and glued the glue-on-velcro to the bed = the bed looked cute with a dust ruffle from one side. I cleared out most furniture to make room for equipment. A night table and lamp were there and a chair for visitors or me. A TV across the room, a mobile over the bed, a CD player for happy songs. We enjoyed singing, sometimes. A folding screen might help hide some things. In closet I had cheap steel shelves from Home Depot for wipes, lotions, diapers, adaptive clothing and night gowns. I hope there is a support group in your area. You can learn many things from other parents & visiting health nurses. Write down questions for nurses. Sears has a home health catalog with over the bed tables etc. God bless.

The nine year old girls I know are natural born fashion divas. Take her on as your consultant. I hear your goal is one of storage and there will be lots of ideas coming. I love those lovely boxes sold in crafts stores like JoAnn's and Michaels. But a girl's room is so important to her, sometimes her world. If new things are having to come into her room, let her take "ownership" of it. Just don't be concerned what we think is correct. go crazy if that's what she suggests here and there. It's a child's room. A kid with a well appointed room scares the heck outta me. Kids rooms are usually delightfully bizarre!
I sometimes work with terminal clients. Remember to be good to yourself and the family. You touch our hearts. Thank you

You might consider a folding screen with a motif that your daughter would enjoy like this pair of zebras. You can conceal essential medical equipment and use the screen as a springboard for an animal or African themed room. Prayers to you and your sweet daughter.

I can only imagine what you are going through. How about asking your sweet little girl what she would like to see in there? Take it even further and contact the Make a Wish foundation in your area...they will really make her dream room come true.
You and your family are in my thoughts and prayers.

you are all in our prayers!

First of all, thank you for your kind thoughts and prayers! They mean a lot. This has been an extremely difficult situation for us. Lana is actually our granddaughter. We have had custody of her and her little brother since 2005, at which time Alex was 4 months old , and Lana, was >?15 months old. Their mother, our daughter was mentally ill her entire life. When Lana was 23 months old, she was diagnosed with a disease called Ataxia Telangiectasia (A-T). It is a rare (about 500 kids in the US, 1,000 across the globe), recessive genetic disease. It is a progressive neurodegenerative disease that combines the very worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, and immune system disorder and a 1,000 greater chance of getting cancer than the average child. There is no cure or treatment...A-T is fatal. Most children with it do not survive their teens.

On June 27, 2009, we lost our daughter to a drug overdose at the age of 27.

The progression of Lana's A-T has been brutal...it has destroyed her cerebellum, it has wiped out her immune system...each week we must give her subcutaneous immunoglobin infusions via three needles in her tummy. This past summer, she had a feeding tube surgically put in and then had to have emergency surgery when the first one migrated through the stomach lining and through her abdominal wall. Lana is totally wheelchair dependent and must use a vest clearance system twice a day to break up the mucus in her lungs, as her muscles do not allow her to cough productively. She also recently started using a bi-pap machine as her brain doesn't always sent the signals to her brain to breath. Plus, the muscles in her airways are collapsing.

DESPITE everything, Lana is a beautiful little girl who takes no prisoners! Our home is filled with love and laughter! I often tell people that Lana reminds me of the cartoon character Maxine! As for calling her a little princess...she actually is! She was crowned Little Miss Wheelchair Texas 2012 in March of this year. If you are on Facebook, you can look her up!
www.facebook.com/LittleMissWheelchairTexas2012

Yesterday, I went to Ikea and actually found a couple of pieces that I think will work wonderfully. Today, we took her to look at paint colors. She is getting so excited about this entire process!

Thank you for the information about A-T and the update on Lana.

She is fortunate to have you as a grandmother and you are fortunate to have her as a granddaughter.

Keep us updated on Lana's room. You have touched our hearts and shown us true love and selflessness. Thank you. Praying for your family.