It has been awhile.............

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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Dylecia
Posts: 54
Joined: Wed Apr 17, 2002 1:43 am

It has been awhile.............

Post by Dylecia »

since I have posted I am Dylecia mother to 4 year old Keiarra who is LOPBI. Well she had an MRI done on Thursday and to be honest I cried because I hate that she has to be going thru so much. Our lawyer told us that we finally have all our papaer work in order so now he can file our case. Sometimes I feel so overwhelmed with everything that is going on. One good thing comes out it though she has a 94% percentale in her Pre-K class and she will be graduating in 2 weeks.
Monday I should know the results of her MRI and I know that is going to be hard to hear if the damage is worse than I think.

Happy Mother's Day to all the mothers because we do so much for our children and we deserve this say!
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: It has been awhile.............

Post by admin »

Dylecia,
My son is in preschool one afternoon a week at our local school for PT/OT services. It is a developmental preschool that serves children with all types of disabilities. He doesn't go everyday since PT/OT only come one day a week, and that is all he really needs. I have chosen for him to attend a full day private preschool next year because of the academics. Even though I love the local preschool, many of the students that attend have cognitive disabilities that he does not have. He is very bright, just as Keiarra is.

It was very difficult for me to deal with the physical injury for a long time, but I have come to realize (as I see other children in his current class) that things could be much worse. I know he will grow up to be self-sufficient because he is mentally capable of doing so. Many of the other children will not. Their parents will care for them the rest of their lives. They will not have children, have their own house, or even drive their own car.

I am not saying it isn't difficult to come to terms with the injury. My son will never fully recover, even after two surgeries and PT/OT at least twice a week since he was 6 weeks old. But focus on your child's good. Focus on the fact that she will grow up to be independent, have a full life, and give you grandchildren.

I say this because one of my friends was born with one arm underdeveloped. She has one "normal" arm, and one that only extends to her elbow. She has had two wonderful boys and has a job as a grant writer making very good money. She is an example of what our children will be someday, and if I didn't have her, I don't think I would have realized that as soon as I did.

I will pray for Keiarra's MRI results. I hope they bring good news. If not, understand that you aren't alone with your grief for we all know what it is to hear the doctor say things aren't going to improve. I have heard it, and it is devistating. However, then I look at my son and realize how luck he is. Keep your chin up. You sound like a wonderful mom!

Hugs.
Nettie
Posts: 101
Joined: Fri Nov 02, 2001 6:56 pm

Re: It has been awhile.............

Post by Nettie »

Best of luck to you and Keiarra...I truly hope everything turns out well for both of you...Remember to give yourself permission to be overwhelmed...I don't think there is a person here who can say they have never had one or more of those moments...I would never intentionally undermine this injury in any way shape or form, but I do agree with Null...to celebrate what we have and not what we don't have...my wake up call was sitting in the hospital PT department when my son was 4 months old waiting for his PT appointment and watching these amazing women wheel in their obviously severly cognitively and physically delayed children and realizing for the first time that I did not have alot to be scared of in the grand scheme of things...yes, his arm is damaged and will never fully recover...he will most likely at some point be taunted by other children and will struggle physically at times...but he is a bright little boy who brings me much joy and always will...We love our children, because we are all wonderful mothers who want nothing but the best for our children and feel tremendous pain to see them in pain, either physically or emotionally...I try to just take a breath, work through the tough times and embrace and remember all the good times...his smile, his laughter, his little arms around me telling me he loves me or his being embarrassed when I try to kiss him, his sense of humor, his grit and determination to be successful at what ever he tries to do, no matter how hard it might be...I smile when I see his little friends hugging him and wanting to be with him when I pick him up at kindergarten...We are all awesome mothers and we all deserve to have the best and that is what I wish for each and everyone of us...Take care and let us know how Keiarra's MRI turned out and how we can support you...
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: It has been awhile.............

Post by Carolyn J »

Hello parents,
I am an adult with lobpi who only found you all on this board last month and only found a name for what we have 3 yrs ago and thought I was alone in this. I had no interventions until a tendon transplant in the 1960's and still no name!(I'm 66 in 2 wks.)
I also have a 34 yr old son that was born with multiple disabilities due to rubella and they told me to institutionalize him; I didn't and advocated for 14 surgeries and now he is very capable & works full time for the state of WA. and supports me!! Soooo I say focus on your child's ABILITIES and EVERYTHING is possible!! We are living proof,the 2 of us.....We also celebrate big time at every milestone in our lives.

All parents are awesome.
Carolyn J
Carolyn J
Adult LOBPI
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