Old thread, prayers needed.....

[KS 5150]

Brooke and big sister. This shows her personality!

http://m.youtube.com/watch?feature=...top_uri=/watch?v=ABPU7c8S9X4&feature=youtu.be

That was awesome to watch!

 

[freebyrd 69]

Just another update....

Again, I can't thank you guys enough for the thoughts, prayers, and words of encouragement.

In only a few short months, Brooke has gone from 5 independent steps, and crawling as her preferred method of getting around, to walking very well. She can now walk quite a distance (30-50 steps) unassisted to indefinite with simply holding a hand.

Also, in the last few days has said "more" and "no more" in context. Although not consistent, this is another major breakthrough for her and for us.

Good times!

 

[7gtop]

v!bez & prayers w!ll alwayz flow to Brooke ... !nfin!t

 

[freebyrd 69]

I should also mention that since my last post, Brooke was also diagnosed with Epilepsy. So, she now has the trifecta. Autism, cerebral palsy, and epilepsy. No big seizures, but enough suspect things to have prompted us to get it checked out.

Fortunately, the first medication they tried has worked. She is on Keppra.

I want to let anyone on this forum know that, you, or anyone you know that needs anything....advice, questions, or just an ear, i am no expert on this stuff yet, but we have been through a lot, and I am here for anyone. My phone number is 810-923-8297, and I will be more than happy to help anyone in any way I can. You guys have been great, and maybe someday I can pay it forward.

Our road is still long, but we are encouraged by Brooke's progress. Sometimes we laugh, and sometimes we cry, but we always keep a can do attitude. There is a lot to this, from insurance, to therapy, to community support, and the school system. There are grants to be had, regardless of income. We have learned so much. I would love to help others, so please, don't hesitate to call or give my number to anyone you know that you think I may be able to help in some way. Sometimes, it can simply be an ear to bend from someone in the same boat, because if you don't live this, you can't understand. You can be understandING, but, to fully understand can only happen when you battle this stuff on a day to day basis.

 

[nickson]

I only hope for the best for Brooke and your family, man. Be strong.

 

[thewood1987]

Best of luck to that little sweet heart.

 

[paintguy]

Great to hear she is coming along nicely. Such a cutey!

Keep up the great work Dad!

 

[Jim Klein]

you are a good daddy. prayers for you pal.

 

[Sct13]

Hey.... She Got Big!

A real Ace.

 

[StubbyJ]

Came to the forum as a break from homework and wound up here crying....not my first intention.

I work with kids diagnosed with Autism (tons of other stuff) and have a daughter with mild autism as well.

All I can say is they're a trip. It find it especially entertaining when due to their concrete thinking and lack of social skill tell people exactly what it is that is on their mind.

Be prepared for embarrassment followed by behind-closed-doors-laughter until tears.

Stories regarding such individuals:

Just this week I got a call from a mainstream teacher indicating that an Aspie had farted in class. I guess he offended a few girls. He let one rip like no other and calmly stated in his robot voice...."it a natural bodily function." For past experiences I have come to know that some of these girls give him a hard time. I had to do the old no-fart social story...wanted to give him a high-five.

Another one of my Aspies asked a girl to prom by writing the invitation on the board as he happens to be deaf as well. This was in a class of 30 high income silver spoonish learners. When I asked him about it, he acts as if it's no big deal. The kid has ballz of steal and is my hero.

My daughter with autism makes her 2 year older sister and friends appear brain-dead with the insightful knowledge she shares with others. No two Aspies are the same. It's odd, although at times socially awkward, my daughter is more outgoing than most girls her age.

Take a few deep breaths and let her do her thing and I'm guessing she surprises you. I automatically set limits upon my daughter like an idiot.

If you need advice in dealing with the school system, give me a shoutski.

I'm done now.

I pray and will pray.

 

[freebyrd 69]

Thank you, and I just may. We met with the schools a few weeks ago. She will start next sept., and we elected to go with a school a bit farther from home because it is a 2:1 ratio instead of a 15:2 closer to home. She will turn 3 in July, and her only caregivers thus far have been my wife and I, and our parents.

She is still non verbal, and because of the cerebral palsy, has just started walking. We are very encouraged with her progress recently, and all of her docs and therapists have said school will be a good thing. With the 2:1 ratio, the other kids in the school will be special needs too.

I appreciate your response and kind words. It is tough sometimes to not set limits, but we are getting better.....my wife has a tendency to be more nervous, where I am maybe a bit too much the other way, so we balance each other well.

We will only send her to school from 9:00 till 11:30 at first and see how it goes. We want to keep our home therapy going, as well as her ABA. we will see how it goes!

 

[cristi tanasescu]

Hey freebyrd ,



It was hard for me to read the first post, as I have a tiny bit of experience regarding autism...a person I love, very close to me is affected by this.

It can be difficult sometimes, and I know this from personal experience, but the good times are the ones that matter. Your daughter is lovely, and her progress really made me feel that hope is not lost, and everything turns from good to better.


I truly admire and appreciate you and the words you have said opened my mind even more regarding life's ups and downs. I really hope everything gets better, that s the way we should all think in more difficult times.

Cheers, cristi.

 

[Bigfoot410]

She is already opening some eyes and making people smile. Brooke is a very special person to be able to do that. That may be her purpose.

We have family dealing with epilepsy as well as other issues. It's a hard road and very taxing on parents. May you and your family enjoy everything good that life has to offer and I hope Brooke keeps inspiring people to learn and understand we are all the same.
Prayer works and prayers sent for healing. All the best to you!!

 

[SteveC]

What a beautiful smile!!!!!

She was looking at you for that picture right? That smile is your reward for the patience, understanding, perseverance and unconditional love that she feels from you and your wife.

That made me smile!

 

[freebyrd 69]

All I can say is F^CK Epilepsy. They had Brooke on Keppra, which we elected to try first because of it's low likelihood of side effects. The downside to it is, being a weaker medication, it was less likely to be effective.

We had noticed more of the "eye rolling", which is what constitutes her seizures. So, another EEG, no definitive results. They suggested Onfi. Well, that was 3 weeks ago. Stronger drug, and OF COURSE, stronger side effects.

Almost immediately, her desire to walk waned, as she is experiencing clumsiness and lack of coordination, which were already bad enough due to her Cerebral Palsy.

Sleep....yeah, forget it. The last week has been HELL.

Constipation, irritability....we have a completely different daughter on our hands.

This on top of the fact that she is still non-verbal, so I can only imagine what is under the surface that she CAN'T tell us.

We have to give her this f'ing sh!t twice a day. Nothing like giving your daughter something you KNOW is making her miserable. Talk about heart breaking.

Hopefully, when they call back tomorrow, we can get some better answers/alternatives for medication. She WILL NOT be staying on this.

On top of all of that, we have noticed zero decrease in the eye rolling. Another 24hr. EEG scheduled for next Wed..

Somehow, I knew the Epilepsy would be the worst of the three things we have going on with her. The other two (autism and CP) require no meds.

Santa, all I want is my daughter happy and pain free for Christmas. I miss her consistent smile, and I'm just about broken over seeing her so miserable. This sh!t ain't right.

 

[xroadie_jim]

Prayers coming.

 

[Wraptail]

She's a cutey! So sorry to hear about all that, nothing worse than seeing your child suffer. Good thoughts and prayers coming your way!!!

 

[bossaddict]

Sorry to hear the new meds aren't making things better. Sounds like you're trying everything you can. I have two little girls (4 and 2) and can only imagine how you feel. I hope the next step is a better one for all of you!

 

[Sct13]

WOW! She grew! And she looks happy in that picture!

I'm not a doctor, but the nurse in me says call the doc to go back to the Keppra. Was she on the max dose for her wt. on the Keppra?

Pediactrics is NOT my specialty at all. But if she is miserable on that med she doesnt' need to be on it. It sounds like the cure is worse than the illness, which is not a benefit. Did they say the side effects would subside with time?

If she is stumbling around and her motivation is gone thats the wrong med.

As always Prayers!

 

[rockinlespaul]

Man you got me in tears over here. No child should have to go thru what your daughter is going thru. You and your family will always be in my prayers.