Kinda OT:feeling sad

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mama2jmt
Regular Member


Date Joined Mar 2007
Total Posts : 301
   Posted 9/27/2007 2:10 PM (GMT -7)   
Hi everyone,I got some troubling news about my daughter yesterday & I am feeling sad & a bit worried,& I just need to vent a little.
 
A few weeks ago I got my daughter(3.5 yrs old)enrolled into a school that works w/ developmentally delayed children,& this past week  they had evaluations done by an early childhood developement specialist & a child psychologist.Well,yesterday they told me that Jasmine is severely delayed in her gross motor skill developement,& she scored a 3 out of 20.
 
I've always realised that she was a little behind in her physical developement,she didn't even walk on her own until she was 22 months old.During that time,her doc sent us to a pediatric neurologist,who performed an MRI & an EEG.The neuro was concerned that she had a neurological disorder that was caused  by premature birth due to extreme complications during my last trimester(I got a perforation).Anyhow,the tests didn't show anything.
 
The school has suggested that I take her back to the neuro doc for more tests.I am feeling a little worried & very heartbroken over all this.As I am sure that all you parents feel the same,I just want her to live the best life that she can.No matter what the outcome of the tests this time,everything will still be ok,just a little harder for her in the years ahead.
 
Thanks to all of you who took the time to read this & letting me cry on your shoulder.
 
PS.....I forgot to mention that Jasmine did score high on the cognitive tests,18 out of 20. 
~Jennifer~
Official Crohns DX-march 2004.Pentasa 4000mg,B12,Probiotics
         1 resection
Cardiomyopathy DX-may 2004.Coreg,Altace,Digitek,Lasix,Potassium,very low-sodium diet
          


Nana CC
Regular Member


Date Joined May 2007
Total Posts : 121
   Posted 9/27/2007 2:30 PM (GMT -7)   
It is always hard to hear anything bad about our children and I'm sorry for your pain. I do know that things are much better now for delayed children than they used to be as evidenced by the early childhood program. I would try to take the fact she was able to learn to walk as a positive sign, that is a lot of gross motor skill. Also the fact that her cognitive score is so high is wonderful. She will be able to learn. I wish there was more I could say to comfort you but I think it was just take some time. There are some great programs out there and I'm sure you'll be able to find them.
Diagnosed 4/07 with Crohn's after hospital stay. Meds: Asacol, Librax, Azathioprine, Prednisone, Prozac, Buspar, and Xanax and percocet PRN.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/27/2007 2:34 PM (GMT -7)   
Hi Jenn I can relate to wanting our children to have the best life ,however in some ways her disease is like ours in that you can learn how to manage it if she has problems and knowing when she is young will give you a chance to work with her to develope what possibilities are there for her. If her school feels she needs more testing then it might be worth your efforts.Sometimes life throws us a curve but how we respond makes a difference, we are here for you if you need our help and keep in touch with us on what is going on .Hope this helps you to feel more positive about things don't let yourself get discouraged .lol gail

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 9/27/2007 2:34 PM (GMT -7)   
Jennifer,

I know it's so hard to hear news like this about your daughter, but I want you to take a deep breath and give yourself a pat on the back for doing what needs to be done to get her the help and resources she needs. I'm an early childhood educator/administrator. Believe me when I say that all children have the capacity to grow, thrive and most of all respond to nurturing, attention, support and love. Whatever her path may be, she is so very lucky to have you as her mom. I know she's going to amaze you.
44 years old, newly diagnosed after a "flare" and 8-day hospitalization in September 2007
Taking Pentasa, Prednisone, Prilosec and a multi-vitamin
(Also hypo-thyroid, so take Levoxyl as well)
Single, working mom to three wonderful kids, ages 9 to 15.

So appreciative to have this forum -- it's all new to me!


mama2jmt
Regular Member


Date Joined Mar 2007
Total Posts : 301
   Posted 9/27/2007 6:00 PM (GMT -7)   
Thank you ladies so much for your kind words.
~Jennifer~
Official Crohns DX-march 2004.Pentasa 4000mg,B12,Probiotics
         1 resection
Cardiomyopathy DX-may 2004.Coreg,Altace,Digitek,Lasix,Potassium,very low-sodium diet
          


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/27/2007 7:22 PM (GMT -7)   
I am so sorry that you are having to deal with this.It is hard to deal with and when it's a child it just makes it even harder.I know one thing your daughter is very lucky to have a mom like you and no matter what your daughter will know that you love her and that you will all way's be there for her and will help her.Please let us know from time to time on how your daughter is doing.
Curley
.........
 


Zazucat
Regular Member


Date Joined Dec 2006
Total Posts : 177
   Posted 9/27/2007 10:07 PM (GMT -7)   

mama2jmt,

I'm so sorry you heard such discouraging news, it must be so tough as a mother to see that your daughter has a struggle ahead of her. But, don't lose hope. Physical and occupational therapy can do great things to help kids like yours catch up their peers. She's got youth on her side, the brain has amazing abilities to overcome problems at early ages. I know you'll be supportive and encouraging as she continues to grow and develop. Good luck and positive vibes to both of you!


boomer2006
Regular Member


Date Joined Sep 2007
Total Posts : 29
   Posted 9/28/2007 9:12 AM (GMT -7)   
I can relate to your daughter anything and everything was wrong with me. Including developemently disabled the only thing i learned quick was talking and my parents are going crap lol poor souls. Anyway I made it through she can to best of luck to her you and your family.

mama2jmt
Regular Member


Date Joined Mar 2007
Total Posts : 301
   Posted 9/28/2007 12:15 PM (GMT -7)   
Thank you all so much.I am starting to feel more positive about things today after venting.I am very grateful,because I know that things could be alot worse for her.I can't help but to feel guilty though,since there is a possibility that being inside my womb did this to her.

Thanks again for being so sweet!
~Jennifer~
Official Crohns DX-march 2004.Pentasa 4000mg,B12,Probiotics
         1 resection
Cardiomyopathy DX-may 2004.Coreg,Altace,Digitek,Lasix,Potassium,very low-sodium diet
          


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/28/2007 2:58 PM (GMT -7)   
Well...Mama, i think you know i don't pray too much...but you and jasmine are in my thoughts.

as you know, i am only raising a Chihuahua now, I can't imagine the struggles all you parents face raising children while dealing with your own disease.

In a way, it seems so unfair that you had to go through so much while pregnant, yes, you survived...but now your daughter is having to have her share of difficulty! what did she do, huh? but i hope that while you have surely felt that way, you don't keep blaming yourself. From what i know of you, your daughter is #1 in your life. She is very blessed to have you as her mom. we don't have control of some things in this life, but I know you would do anything for her without even thinking about it....how can you blame yourself when you are doing everything you can?

I have twin nephews (born on my b-day!) who both have significant developmental problems. Raising them is definitely a challenge, but they are loved very much, and, therefore, they are happy boys! You are a loving person, and so I know Jasmine is a happy girl too!

here is something i saw on the web this morning....the anology might help a little, especially since i know you are a plant lover....Keep your head up!

it's not too long, so i am gonna post it all instead of just the link.....sorry mods, for taking up the server space
---------------
Lessons from a Zen gardener

Our group of neighbors meets occasionally over coffee and cupcakes. I don’t remember the subject, but on this occasion our gardening expert had his turn to speak. The talk was related to love, and his view was that love involved giving.

As his example, he took the flowers of summer. They produce their seeds, containing the essence of themselves, and give them away. They send the seeds out into the world without any certainty of how many will land on fertile soil and sprout. They send their seeds out without knowing whether their efforts will be welcome or appreciated.

I’m unable to capture the effect this comparison had on members of the group. It was a profound insight into how we toil in all humility, without knowing if any of our efforts will be appreciated or welcome, or if any will land on fertile soil.

And yet we plug away day by day, week by week, with a small and not too sure faith that we are building something greater than ourselves.

The following week, our gardener friend brought in samples of seeds from his yard and garden. The bean seeds were interesting to look at. They were twisted, dried up husks that had split open. He explained that the husks twisted as they dried so that the seeds would spill out, hopefully planting themselves to lie dormant over winter, waiting for another spring.

He compared this to the stresses of life that make us twist and turn, but force us to relinquish and reveal our inner gifts.

We haven’t had any more homey show and tell programs since then, but it sure makes you look differently at the common seed.
"All we need is love....love is all we need"

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