Any special needs kiddos?

[Kiana]

Kiana, that poem is lovely and really captures the helplessness that many of us feel around that d*mn disease. Scientists still don't know very much about how the brain works and it's very frustrating that despite huge advances in many areas of medicine, they still kind of shrug their shoulders when it comes to epilepsy. We have been lucky to avoid (so far) the worst effects of seizures but it is still very scary.

Thank you and yes I agree. It's so frustrating that my phone can map where I'm at, tell me the latest news, and take notes, (*insert over-dramatic hype) order me a pizza, pump my gas, and give me change(lol) and these doctors can't figure out how the brain really works.

*yes I use humor to dull my pain*

 

[Sweeet]

Okay on the note of epilepsy ..since I'm a poet I wrote a piece about our life with the illness. Hope it's okay to share here

background, before my son was diagnosed, he would tell me he felt like he was turning into a monster, he would have these small tremors and we didn't know they were seizures at the time. So that's where the monsters come from, and purple because that's epilepsy ribbon color.

LOVED this!!!

 

[Sweeet]

Since Kiana shared a page she did, I also did one for my son when he's old enough to read and understand. I wrote him a letter. . . .hope it's ok. <3

 

[Kiana]

LOVED this!!!

Thank you so much.

Sent from my SM-N920V using Tapatalk

 

[Kiana]

Since Kiana shared a page she did, I also did one for my son when he's old enough to read and understand. I wrote him a letter. . . .hope it's ok. <3

I loveeeeee this. I gave my son his poem. It hangs on his wall now.

Sent from my SM-N920V using Tapatalk

 

[clucaswvu04]

Ah the poem and letter were so beautiful. Thank you girls for sharing, for everyone for sharing. It helps so much I think to know it's not a place we are alone.

This morning Addy had an EEG - it wasn't her first, but the first in a long time (is there a long time when you are 6?) It was suppose to be just 30 minutes, but the tech said he "saw something that looked funny" so it ended up being almost 85 minutes. There were at least 5 or 6 points where he went back to the chart and was looking at it much more closely and making notes. Then asked me a lot of questions about when they thought she might be having the absent seizures when she was little if she had been medicated at all (she wasn't and they never saw any evidence on any of the EEGs). So now we wait for a few days until we hear from her neurologist and I just don't have a clue what to think.

 

[Sweeet]

Ah the poem and letter were so beautiful. Thank you girls for sharing, for everyone for sharing. It helps so much I think to know it's not a place we are alone.

This morning Addy had an EEG - it wasn't her first, but the first in a long time (is there a long time when you are 6?) It was suppose to be just 30 minutes, but the tech said he "saw something that looked funny" so it ended up being almost 85 minutes. There were at least 5 or 6 points where he went back to the chart and was looking at it much more closely and making notes. Then asked me a lot of questions about when they thought she might be having the absent seizures when she was little if she had been medicated at all (she wasn't and they never saw any evidence on any of the EEGs). So now we wait for a few days until we hear from her neurologist and I just don't have a clue what to think.

(((hugs))) the hard part is WAITING. We finally were successful with the blood draw for genetic testing ordered by my son's PED and I already see the results, but I'm not a doctor and cannot interpret what the H (high) indicates, so I'm WAITING on her to let us know and this will determine what level of the spectrum he's in, so that in a nutshell, will be very helpful. We, too, will have to have our son undergo an EEG and alas, WAITING to hear from the hospital on scheduling. We'll have to drive an hour and a half to get this done because our hospital doesn't have the equipment to conduct this.

 

[LeeAndra]

Jenna, your page made me cry, cry, & cry some more.

I will cherish my son's constant (and what I usually find annoying) 'Mommy, mommy, mommy!' after seeing your page. I can't even imagine what it would be like to have a child that could not say my name. :crying: :hugs:

 

[clucaswvu04]

(((hugs))) the hard part is WAITING. We finally were successful with the blood draw for genetic testing ordered by my son's PED and I already see the results, but I'm not a doctor and cannot interpret what the H (high) indicates, so I'm WAITING on her to let us know and this will determine what level of the spectrum he's in, so that in a nutshell, will be very helpful. We, too, will have to have our son undergo an EEG and alas, WAITING to hear from the hospital on scheduling. We'll have to drive an hour and a half to get this done because our hospital doesn't have the equipment to conduct this.

Oh I'm sorry - yes waiting is the hardest part isn't it?

 

[Sweeet]

Jenna, your page made me cry, cry, & cry some more.

I will cherish my son's constant (and what I usually find annoying) 'Mommy, mommy, mommy!' after seeing your page. I can't even imagine what it would be like to have a child that could not say my name. :crying: :hugs:

Yep it's tough for both my fiance and I. This page even made my fiance cry and of course, every time I read it, it does me in again and again.

We are strong for the most part; however, once in a blue moon we find ourselves sobbing when we are near other toddlers who are talking to their parents/siblings and/or playing with other children because of the absence within our own son.

With all the therapy he is currently receiving from his therapists and the transition group he started a month ago, he has shown improvements and has started his own way of "communicating"....even a lil sign language here and there.

We just want to provide him with all the resources that are available to him so that he can be successful and become like Temple Grandin...we can only hope for that right?!.

 

[Kiana]

Ah the poem and letter were so beautiful. Thank you girls for sharing, for everyone for sharing. It helps so much I think to know it's not a place we are alone.

This morning Addy had an EEG - it wasn't her first, but the first in a long time (is there a long time when you are 6?) It was suppose to be just 30 minutes, but the tech said he "saw something that looked funny" so it ended up being almost 85 minutes. There were at least 5 or 6 points where he went back to the chart and was looking at it much more closely and making notes. Then asked me a lot of questions about when they thought she might be having the absent seizures when she was little if she had been medicated at all (she wasn't and they never saw any evidence on any of the EEGs). So now we wait for a few days until we hear from her neurologist and I just don't have a clue what to think.

Hugs. The hardest part is waiting. Good wishes your way!