Christmas Pictures- and a mini update

[Denae]

I am still feeling super gross, so this is short.

Riley is home, she opened her presents and had a great time. She was super excited when she saw her remote control dino :D that smile and laughter made all the fear and uncertainty of the last 2 days fade away. Her laughter can light a room...

Here are some pictures-

Just after arriving in the progressive care unit
http://i50.photobucket.com/albums/f305/Denae1977/42abdb46.jpg

-someone asked about the rooms in the other post, all the rooms at this hospital are private. I can't imagine only being seperated by a curtain, there was a baby in the room next to us that cried 24/7 you could just barely hear it through the wall if the tv was off.


Ri opening her christmas presents this evening
http://i50.photobucket.com/albums/f305/Denae1977/c1ad3668.jpg

Ripping into another one- I just realized she needs a haircut! She has the bozo thing going on with the helmet.
http://i50.photobucket.com/albums/f305/Denae1977/c7495c2b.jpg

Just after she woke up-
http://i50.photobucket.com/albums/f305/Denae1977/ecf57bb2.jpg

Opening the present her dad stuffed into my bag for her.
http://i50.photobucket.com/albums/f305/Denae1977/27d74f7e.jpg

looking through the stack of gifts from Santa at the hospital.
http://i50.photobucket.com/albums/f305/Denae1977/d2f9ac56.jpg

Showing off her Hannah Montana doll.
http://i50.photobucket.com/albums/f305/Denae1977/82a92783.jpg

My favorite- Ri snuggled up in her new jammies surrounded by her lovies, smiling....
http://i50.photobucket.com/albums/f305/Denae1977/13621b64.jpg

[lacyndarella]

I am glad you are home. I love the last picture of her with her lovies. She is so beautiful!

[mumtosarahlou]

She is just the sweetest thing!

[andromeda31]

She looks so cute in her new jammies! Glad you are back home again!! You're lucky all the rooms are private...where we go there a many doubles and we had to be in one once for a week (a very h*llish experience). God gave me shingles so that I will never have to do that again!! (Active chicken pox virus = private room!!! :D just in case anyone needs to know that!!)

Lisa O.

[Denae]

I seriously can not imagine not having a private room, that would be so much worse, adding insult to injury... Ick!

Of course it wouldn't be pleasent for the person sharing with us either, Ri doesn't sleep and is LOUD. :) if I ever find myself in a non-provate room situation I will remember shingles! Brittany had shingels, I will just take her along.

[wheeliebird]

Well, isn't it a good thing I didn't come down, you wouldn't be there!! :D I'm sooooo glad you're home, now just stay there, no more trips to the hospital!!! :) She looks so happy even though she was so sick!! I'll be saying some Prayers she stays better and doesn't have a relaps!! I hope you can get some rest too now that your home!!

[moose53]

((((((Denae + Riley)))))),

http://smileys.smileycentral.com/cat/11/11_2_104.gif http://smileys.smileycentral.com/cat/11/11_2_104.gif I'm glad you guys are back home and sleeping in your own beds http://img.photobucket.com/albums/v90/moose53/MINIS/EXPRESSIVE/bliss.gif!!

Denae, you sound like you've been dragged through the hedge backwards. Shut off the computer, take two pillows, and write to us in the morning.

I **LOVE** the pictures of Riley. She's such a pretty, calm, happy little girl. The loving that she's been raised with shows.

Give her a hug from Auntie Moose and get to bed both of you. BIG HUGS (and love).

Barb http://smg.photobucket.com/albums/v90/moose53/MINIS/TIRED/th_goingtobed.gif http://smg.photobucket.com/albums/v90/moose53/MINIS/TIRED/th_082.gif

[Denae]

I tried to get off to bed, about 2 hours ago.. this screen is addictive, worse than a drug.. I feel like if I do "just one more" search, read "just one more" article then I will have the pieces that put it all together for her.. I am so desperate to "fix" whatever is causing Ri's decline that I just can't stop..

Although I know I may never find the answer, I will likely never find the key, I can hope though. Hope is what gets us through...

She's such a pretty, calm, happy little girl

Isn't she amazing? as very sick as she was she still smiled and laughed.

[AnnMarie]

Welcome home! Her smile sure does light up a room! AnnMarie

[Paul from Australia]

Congratulations on being home.

Great photos.

We like the one of her opening the presents best.

Hugs from down under.

Paul, Alison and Grant.

[Ladybug]

Yeah....home sweet home! I love that neon finger tape for the monitor, Ri looks like she has some cool nail polish on. We did halt the downward spiral (I know how you are feeling) and started to reverse it with diet and acupuncture, but like everything, it is short lived as it seems to be happening again 5 months later. I kept feeling like something has to change in treatment, but what??? is the question of the century. You seem to be leaning toward the keto, but are you leaning toward this tx because it really helped or because it is better than what is going on now. If it really helped, then that must be a viable option.In our case, as tempting as it is sometimes, I feel like we cannot go back and we must keep going forward if that makes any sense. Due to multiple system involvement, we investigate each medical specialty, since we can't get any one doctor to coordinate all efforts or look at the entire system except nonWestern medicine physicians. So, our pick of the season is GI and we are barrelling down that path at the moment. Anyway, enough medical talk for now, hope you get 2 consecutive good nights of sleep. Prayers for some answers for you in your quest.

[lacyndarella]

Is Ri going through a growth spurt? She looks so tall in the pictures. Changes in her body could certainly be contributing to the downward spiral in overall health and seizure control you have been witnessing. There is little doubt there are changes. She has virtually stopped eating, a process which began before the mic key button, since there was a need for it to begin with where there had previously not been. I wonder if some of these changes can be related to hormonal changes. Being a big fat pregnant woman, I can tell you hormones can be horrible little demons. lol Of course in my case, they just lower my tolerance levels, run up my bp, and make me emotional as hell. But put them in a child with low seizure threshold and low immunity, I can imagine they would play far more havoc than that.

[Guitarmom]

{{{{Denae}}}} you have an amazing girl and she has an AMAZING mom!!!

Glad you are home and I DO hope you feel better very soon!!

Ginny

[Tylersmom]

Such a pretty girl! Her smile lights up a room! I love the pics!! Im glad you are home. Big hugs sweety!

[RathyKay]

I really love the red pajama picture. For whatever reason, it reminds me of the animated Grinch, after his heart grew of course!
I tried to get off to bed, about 2 hours ago.. this screen is addictive, worse than a drug.. I feel like if I do "just one more" search, read "just one more" article then I will have the pieces that put it all together for her..
Errrrr... is this my fault?:o I tried to post earlier yesterday; just got interrupted too many times. I'll try to PM you later today with my notes. I don't have enough time to sort through them now. The kids are wild, I'm tired of the fighting, we'll be walking to the grocery store soon.

[Lauren88]

Ri is gorgeous as ever, loving the pyjama pics too - your girl amazes me! Lacy, good point about the hormones, Ri is 9 now right? just thinking that many brain issues/damage can cause hormone issues also, early onset puberty etc. Could you get a referral to an endocrinologist? I know it might be another 'can of worms' but it might also be useful having another set of eyes on her, maybe looking at things a slightly different way... just a thought
but first things first, REST! for both of you ((hugs)) thinking of you..

[Denae]

Errrrr... is this my fault?

HA!! I am going to blame you! Na, just added a few more of those "one more's" to my list.. lol

I just feel like there is something we are all missing, something that we are going to look back and say "why didn't we realize that sooner" ya know? I know that with LGS, or her LGS varient that we are to expect times when she seizures seem well controlled followed by periods of uncontrol. We had a few months when the seizures weren't so bad followed by the last 6 months. Maybe thats just the way it is, stability followed by instability. I don't like it, everything I read about LGS states just that but I can't accept it. Maybe thats my problem, I can't accept it. Years of a normal EEG follwed by a few abnormal ones then the severly abnormal LGS pattern...I am thankful and do believe that she is able to function as she does because it didn't show up until she was older. She was at the upper age for dx of LGS when the pattern emerged, most of her skills had developed before the devistating patter reared its ugly head. That could explain why she has made very limited progress over the last 3 or 4 years. I don't want to accept it so I keep looking though.

I think the hormones may play a part too though, she is 9 and is starting to show signs of puberty (YIKES) she has grown a little taller and definitly gained weight :) The puberty may explain the seizure increase too, I just expected it to take place later, not sooner. NONE of my other girls started showing even slight signs of puberty until at least 10- and actually I think it was closer to age 11..

[Carly'sMa]

So glad you are home. I like the pj picture, too.

Puberty just messes everything up doesn't it! Perimenopause is no picnic either.

[Ladybug]

Denae:

So strange, we are going on year 4 too and on the roller coaster ride with no answers. When this all started with ds, I asked every specialist about hormones, but all the testing ordered by the metabolic/endocrine and neurologists didn't show anything. Both the teachers and I noticed that he would be worse with every tiny growth spurt, but the doctors insisted that it can't be related to growth hormone due to his age and I was questioning it because it has diurnal fluctuations and ds has his episodes almost every morning during a certain time of day. Again, I sympathize with you in feeling that they are missing something so basic and I can't get them to do enough. All they want to do is monitor and wait until something major changes, but he has zilch quality of life and everything is slipping away right now. We're looking into GI for this "season" and I still want some infectious disease specialist and cardiologist to check for things. What area's do you have that rocks have not been unturned?

[Denae]

What area's do you have that rocks have not been unturned?


I don't know.. I feel like there are rocks in every area unturned, and boulders in others.

We are still beating the neuro stones, have flipped the pulmonary rocks over, and are still sturring around the GI stones. I think thats where part of her issues are.

I have been thinking, but thats about to be another post. :)

[Ladybug]

Yeah, we are really bent on the GI issues and forcing them into the light right now. Even the neuro thought this month that this was one area worth checking into more because it has a huge impact on immune response (hyper reaction to any viral foreign anything by air or mouth) and neurological response that may not be detectable by other testing. We know he has to have GI problems, but we don't know if they are the trigger of episodes or just a separate issue that has been there alongside all of this other stuff. What were you looking for in pulmonary and what was the final outcome/ruled out, if you don't mind sharing?

[Denae]

what was the final outcome/ruled out, if you don't mind sharing

We found out she has severe sleep apnea, she has hypopnea and thats causing her co2 level to be off. How does that affect a person? I don't know.. This all came about when a lot of other stuff was going on. I hadn't even thought about it until now really. She has bi-pap that she needs to use when she sleeps, her setting have been tinkered with lots, they actually pushed her up so high during the last sleep study that the tech told me it was actually considered life support at the settings she pushed her up onto. It was during one stage of sleep (and I can't remember which one) that she needed that much support, but once she moved to the next stage, and before she got to that one she didn't need that much air and it was causing her arousals. You know, that may be part (not all, we know Felbatol is notorious for sleep issues) of why she doesn't sleep- her body knows it's missing out on some needed air at some point so it refuses to participate in sleep. something else to ponder.

For now they have settled at 12/4- or is it 12/6? darn, I can't remember now. hmm..

I was supposed to schedule another sleep study a couple of months ago, but seriously I don't want to schedule any reason to be in the hospital at all. really.

She has asthma, it is well controlled though. So thats not an issue, and we aren't messing with the one area of her life that is stable. She takes 10mgs of Singluair at night for it and has an albuterol inhaler to be used as needed.

I just flipped over the wormy GI rock and we are going to start looking there. I know there is something we are missing and my gut tells me part of one issue is under that rock.