Hubby needs help!!

[annedefiance]

Ok, dh is a college student and is currently in a Compostion class. He's writing a paper on disabled kids. He was wondering if ya'll would share the day to day problems you have with your bpi kiddo's (unfortunately we can't use our own experience) things like dressing, pottying, problems at school, etc etc. If you don't mind, he would like to quote you in his paper (no last names will be used, just first). Thanks!!!!

[Lndabelle]

First of all thanks Anne for your reply to my message. Please keep me posted on your son's surgery. I can tell your husband that we are learning alot because Connor will now be in first grade and because of his injury I had to go through all the boys bathrooms at the school to see if he will be able to reach the toilet paper, because if it was on the left side it would be hard for him to reach. I never thought I would have to do that. I try to buy him just the elastic waist pants so that he will be able to pull his pants up and not have to worry about buttoning them. I also am worried about lunch time since the lunch trays are made of the foam and are not hard. The principal told me to have him bring his lunch, which I do not think was right since my child has the right to buy lunch just like any other child. They did offer to let me have a set of books for home so that he would not have to worry about carrying a heavy back pack. Since I read that kids with BPI should not carry back packs. I hope this helps with his Compostion class.
Linda

[whitneys mom]

Hello, I think that it is wonderful that your husband is doing his paper on this. Its a great way to get awareness out.
My daughter Whitney is 8 months old. She is at the stage where she wants to be on her own, and doesn’t want help from us. Our current hurdle is that she is trying to crawl, but can't get up onto her affected arm. She is so determined, that she gets little brush burns on her forehead, nose and chin from the carpet. It is very hard to watch your child struggle. Sometimes her problems get to me, and its very hard to hold back emotion, but it sure doesn’t bother her. Her wonderful smile is what keeps us going everyday. Thanks again, Amanda

[mom_2x_2002]

My daughter Hannah just had the Mod Quad surgery done. But before surgery I would watch her struggle with pushing down her pant with on hand just to use the bathroom. She figured out how to use both hands to pull them up. She also couldn't cover herself up at night. She would get the covers all twisted up or not even try. You know there is many time I sat back and watch her give up on something she didn't know how to do. Or couldn't do. I dress her everyday she doesn't have the strive like other children her age to dress and undress themselves. I remember I couldn't ever keep clothes on my son at time.

I would be interested in reading his paper when he is finished.

Nicki

[Francine_Litz]

day to day.....

...making sure that all the velcro on her splint is covered with strapping so that the blanket doesn't get caught on it and suffocate her

...trying to find a balance between freedom of movement and keeping an arm that is high risk for dislocation safe

... trying to find a balance in educating others in her life about it (teachers, etc) without making them fearful

... having to write milions of letters for every single thing you need to have your insurance cover

...worrying about how weather affects the arm with bpi - in winter it'll get very cold and pained and in the summer it retains the heat and burns easily

...just a few things that fill my day!

[Karen Hillyer]

.......having to fight for every bit of therapy or help

.....having to explain why your kid with Autistic spectrum disorder has no friends calling for him.

Always looking at toys from a therapy angle and NOT a fun angle...

Cutting up food for your obpi child

placing the food on the plate the correct way, so none of it touches anything else, for your
ASD child !!!!!

getting sleeves altered for your obpi child

finding slip on trendy shoes for your ASD child because he can't tie laces yet at age 13

trying to find time for all the hospital appointments...

OK so now I am depressing myself !!!! I am going to go watch them play in their swim pool and remind myself how gorgeous they really are!
Karen

[chohertz]

Our daughter Sarah (ROBPI), is 8 months, and here are some things that we're working on.

-- Self feeding. She is trying so hard to pick up those little pieces of food, but just can't.

-- Crawling is a continual battle. All of our therapists are working with her, but she just is having so much trouble with weight bearing.

-- Continual appointments with OTs, PTs, Orthopedists, Neurologist, Neurosurgeons, etc. Having no sick time left and having to use vacation to make these appointments. I WANT A REAL VACATION!!!

-- Fighting every step of the way with insurance. I never expected it to be this hard.

-- The continual questions of "what happened to her arm?". I should be used to them by now, but I just want ONE person to see her as my beautiful baby, instead of a baby with a big splint on her arm.

-- The continual wondering if and when she will have to have surgery. It's always in the back of my mind and surfaces at the most inopportune moments. That nagging of doing more home therapy and exercises and playing with the toys that will be best for her, hoping that these things can avoid any surgeries.

I could go on and on. My, how a BPI changes every aspect of your life. I wouldn't change one single thing about Sarah, but I would love for just one day, her to be BPI free and not have to worry about all these things.

HTH!
Cherie

[christy]

walking up to the surgery doors and handing over a tiny baby for yet another doctor...

wondering how many more times will we have to hand her over to them..how many more scars...how much function will return..how long will she have the night terrors this surgery...seeing her in recovery.

hoping like heck she can hold her own children alot better than she tries to hold her baby dolls.

having the other kids notice she can't do things exactly the way they do. then the little brave one that decides to clap like her--that breaks your heart too!

going to evals and seeing all those lovely babies with injured arms. so very many of them.

waiting in clinic lines for hours while all the kids get tired and cranky

school meetings and evaluations

meltdowns at having so many treatments

insurance fights

hopelessness in the dark times of despair. stepping on therapists toes because you feel panicked and want SOMEONE to do SOMETHING to HELP THIS BABY--NO MORE SURGERIES. And in reality you know they are doing what they can but you are just so very concerned scared.

karen: your son sounds an awful lot like katie. is he like that with his clothes as well as his food? does he get over excited or frightened in excited crowds or noises? Katie is just so....I dont' know how to put it. Sensitive to change? Easily over stimulated. High charged. Exhausting both emotionally and physically. I can't find the right words, but the knowledge of something is hanging there that I can't get out. Just different and not "different" like we all are.

[Karen Hillyer]

Hi Christy
I have two boys, the eldest, Michael ahs the Aspergers syndrome and the younger Gavin has the obpi
but to answer your question - Michael is VERY sensitive to sounds and smells - you will often see him cover his ears up if a sound is too loud - he's very sensitive to smells too, and body odours ( good OR bad!) are very off putting to him, he can't bear the smell of peoples breath or sweat etc etc
he is very scared in crowded places and easily over stimulated - just entirely different to his brother.
Feel free to e mail me if you wish!
Karen
erbspalsygroup@supanet.com