Back from Disney - Not photography related - but I wanted to share.

[DVC Jen]

Ya know something - you guys are THE BEST!

Thank you so much for your kind words, thoughts, prayers, encouragement - it means the world to me.

There aren't alot of people I have really talked to about this outside of immediate family - but for some reason I felt like sharing here - and I am so glad I did.

This morning was a rough one - but this afternoon I made myself start to get back into a normal routine and man did it feel good. I even got started checking out some of my photos from vacation.

Kylie is doing better with each passing hour and tonight was laughing and playing around with the dogs. She seems so much happier now - she had been quite grumpy the past few months - now I know why.

It is nice to see her smiling and laughing again - and NOT fighting with her sister so much. I can only imagine the stress her body must have been under and for some reason she does not get incredible headaches when the shunt fails. I almost wish she did - it would be easier to pick up on - and we would catch it earlier as well. But then again - ya never want your child hurting - regardless of how old that child is.

You guys are the best!

 

[Groucho]

Jen, very sorry to hear that, but it sounds like everything is getting better now. Modern medical science is a pretty wonderful thing - just think about how far medicine has come in the past few decades, and I have no doubt that in the coming years, we'll continue to have great advancements. Hopefully some will help your daughter even more. It's great that even now, it sounds they're able to make her better pretty quickly, for a while at least.

Brain issues are easily the most frightening of all physical ailments. It puts you into a weird state where the "patient" is neither unconscious nor truly conscious. They can react, object, protest, and demand, yet the "real" them, as they would normally see themselves, is not there doing the reacting, objecting, protesting, or demanding.

With a parent around to overrule the child, it seems manageable. What happens when Kylie gets older and independent? It sounds like she’ll need to sign over complete control to others in the form of something like a durable power of attorney to force her to get help when she needs it. I have no idea how you’ll manage that, but I hope that when the initial shock of this incident wears off, it is something you’ll need to plan for.

The whole subject terrifies me. Losing mental control is my one phobia. It's one of the biggest reasons why I never drank alcohol, even in high school and college. It's why I fear Alzheimer’s worse than any other illness. I fear insanity from both directions. I’m afraid that my eccentricities (of which there are very many) will someday get me ruled crazy by a court and my freedoms will be taken and I simultaneously fear that I’ll go totally insane but people will do nothing to help me because they just figure I’m odd. With the restraints of keeping a job and raising children gone, I can only imagine that the distinction difference between my behavior and that of a crazy person will be even harder to determine.

Brain issues are pretty bad. Just a few days before our Jan 2006 trip (New Year's day to be exact), my wife had a full-on seizure while eating dinner at my parent's house - so we've had plenty of neurology experience. She still gets very nervous whenever she feels a little dizzy; fortunately there's been no recurrence thanks to medicine. It is very frustrating, though; there's really nothing we can do to just make it go away - you end up feeling powerless.

And with children - that's a whole further level. We're still working on a second kid (had some problems along the way ) and I am certainly terrified of the possibility of some kind of serious mental handicap appearing. I don't think it's likely so it's hardly a fear that consumes me, but I just can't imagine how difficult that must be for the parents. I'll take a physical handicap over a mental one any day!

I also agree completely about the losing mental control thing. I've never been drunk, high, etc, and have no desire to be - why would I want to impair my senses?

 

[wen-tom]

Jen, I hope you dont feel that I am butting in as I am fairly new to this board and so dont know you as well as some of these guys obviously do but I just wanted to say that my heart goes out to you and your family - especially to your DD - what a horrible thing to go through. She must be relieved to have such a wonderful family.

I read this thread and couldn't not offer you my few words of support for what they are worth. I cant imagine what you have all been through

I hope all continues to get better for you guys

Wendy

 

[Jeanne B]

Jen, I'm glad you have the Disboards to share something so personal and by all the responses you obviously have lots of support here, not surprisingly.

(BTW, there are dozens of OT posts on the Budget board every day so I don't think anyone here would have a problem with your post ).

 

[WVDisGeek]

Jen,

Also fairly new to the Boards, but you and your family have our best wishes going forward. I work in a large regional trauma hospital and see/hear of these types of issues everyday. My mother is a nurse and growing up, I was frequently on the wrong end of her Mom Radar, but she was usually right.

Mark - my aunt had surgery for an abdominal aortic aneurysm a couple of years ago and due to complications, her short-term memory has been severely compromised. Sad to watch. I too share your fears.

Each day is a gift and most of us are guilty of not treating it as such.
Enjoy every day....you never know which one will be the last. That is part of the reason I wanted to get back into photography, so I will have the chance to capture those memories and happy times, so I for one, think your post was right on topic!

 

[cpbjgc]

It's good to hear Kylie is recovering so quickly. It's hard watching your child suffer (no matter what their age). It's great that you relied on your Mom's Instinct (though I like to think of it as "Parental" ) and got her in when you did.

Based on what you've mentioned so far, I'm sure she'll have a complete and speedy recovery !

 

[dad2t&e]

Jen.......I’m glad you felt like sharing your feelings here. My thoughts and prayers go out to you and your family. Having 2 daughters of my own and with one having medical problems I know how you must feel. My Family is THE most important thing in this world. I thank God each and every day for each of them. I’ve always been one to question things that do not seem the normal. I'm glad you realized that something was not right and did something about it. I'm so glad to hear things have gone well after the surgery. My prayers are with you and your family. I hope that you have many, many years worry free years. May God Bless you and your family.

 

[jann1033]

Ya know something - you guys are THE BEST!

Thank you so much for your kind words, thoughts, prayers, encouragement - it means the world to me.

There aren't alot of people I have really talked to about this outside of immediate family - but for some reason I felt like sharing here - and I am so glad I did.

This morning was a rough one - but this afternoon I made myself start to get back into a normal routine and man did it feel good. I even got started checking out some of my photos from vacation.

Kylie is doing better with each passing hour and tonight was laughing and playing around with the dogs. She seems so much happier now - she had been quite grumpy the past few months - now I know why.

It is nice to see her smiling and laughing again - and NOT fighting with her sister so much. I can only imagine the stress her body must have been under and for some reason she does not get incredible headaches when the shunt fails. I almost wish she did - it would be easier to pick up on - and we would catch it earlier as well. But then again - ya never want your child hurting - regardless of how old that child is.

You guys are the best!

being incredibly nosy i was wondering about if there were any symptoms, if it plugs up gradually or if it is more like a clot that is just " there" suddenly. , good she is getting back to herself and hopefully will be feeling lots better by the time school starts again.
yeah who ever said child rearing lasts 18 yrs never had kids obviously, more like 70 or so

 

[jann1033]

I also agree completely about the losing mental control thing. I've never been drunk, high, etc, and have no desire to be - why would I want to impair my senses?

personally i just feel i have so little sense i need to protect any tiny little portion i have sorry about the baby problems groucho , hope it improves

 

[Todd_H]

Another low-posting newb here, but I wanted to send good vibes your way, Jen

I can't imagine how scary that ordeal must have been. I'm glad that your daughter is recovering well.

God bless you and your family,

-Todd

 

[DVC Jen]

being incredibly nosy i was wondering about if there were any symptoms, if it plugs up gradually or if it is more like a clot that is just " there" suddenly. , good she is getting back to herself and hopefully will be feeling lots better by the time school starts again.
yeah who ever said child rearing lasts 18 yrs never had kids obviously, more like 70 or so

Janet - it ended up being a slow gradual blockage. Most people with hydrocephalus will experience severe headaches - Kylie never has. I kinda wish she did - it would be much easier to figure out something is wrong - and much faster.

The symptons she had were - excessive tiredness (we could not keep her awake), change in gait and or coordination, change in personality - she became very aggressive. She mentioned have a slight headache - more like a pressure behind her eyes and forehead but it was nothing the really screamed blocked shunt.

In hindsight I can see how her grumpiness over the past few months more than likely had a lot to do with the pressure building.

It is amazing how happy and content she is right now. She and Emily have not had one fight since she got home from the hospital. They were at each other all the time when we were on vacation.

She is much more helpful - kinder, less sensitive - just a much more pleasant person to be around.


to everyone else whom has wished us well and are sending prayers since I last posted... thank you. I really appreciate it.

She got to shower today for the first time since her surgery - that made her feel LOTS better. (She smelled better too. )

 

[Amy]

Jen - I just saw your post today......how scary! I'm so glad things turned out ok for you. Lots of and prayers for your family. Gotta love that "mom radar" - you knew it wasn't normal teenager moodiness. Give Kylie my wishes for a speedy recovery!

 

[MHolleman]

Jen,

Just wanted to say that you are in my prayers. I haven't been on this board very long, but you are such an inspiration to me. I have seen your dance pictures and was inspired, but your strength through all of your daughters problems inspires me even more. I hope all continues to go well for you, and I can't wait to see the treasures from your vacation.

God bless, Melissa

 

[Suburbanmom]

Jen, I've been AWOL, vacationing at Lake Erie, AND the DH has been a terrible laptop hog...I just read this thread this morning. Wow...you have certainly been through it, haven't you? Consider yourself {{{hugged}}}. I'm glad to read that the worst is over. Now you can look back and see the symptoms...vague tho' they may be...and have an idea of what to look for in the future. It would never occur to me to get a Medical Power of Attorney for a 19 year old, because to me, that's still my child, but I think that is such a wise thing to do. Hang in there, Jen. I'm glad you posted here. This is the only DIS board I read and I would have missed it otherwise.

 

[fitzperry]

Wow Jen--I've also been AWOL, vacationing on Lake Michigan. It's a good thing you acted on that maternal instinct. I'm sorry that your family has had to endure so much, but I'm glad to hear she is on the mend and hope that things only continue to improve.

 

[kim]

Jen,
Prayers going out to you and your family. You're right about the importance of family. My dh had a brain aneurysm when he was 27, thankfully everything went just fine throughout and after surgery.

My cousin's husband (we considered him a brother), passed away last Thursday morning after a short, but very painful bout with cancer.

Family is a true blessing. May God bless and keep you close.

kim

 

[vanillarum]

Well, you all have all of our prayers and best wishes !! Good luck !!