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Post by MB on Jul 15, 2005 15:56:29 GMT -5
Christine,
You know we will all be waiting for a report on Monday.
Blessed good luck,
MB
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Post by steffipoo on Jul 15, 2005 16:09:24 GMT -5
I am soo sorry this is going on with you guys. I went thru this weird thing with Olivia. When she was born I didn't know. it took me at least 5 months to get all snuggly and accepting and just LOVING this little girl. Then she got very sick. Spent 5 months in the hospital. It's amazing what kind of deep heart wrenching love that can come from a child being sick and such. I am waiting to hear about the divine miss em. Hope it is something simple and easily dealt with HUGS HUGS steff
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Post by momofrussell on Jul 15, 2005 16:10:13 GMT -5
Well, you just whine away Polly, er, I mean, Cbean. You know... it's ok to wear your rose colored glasses at times... it just so happens you put them down for a few days... and well, things look different. Don't feel bad about the pity party you are having... we ALL have them... we are allowed! Some deal with different things then others.. and deal with them differently then the next guy... but we all have been "there" to some extent. I won't kick you in the pants and tell you to brush it off.... I think you got plenty of that here already! LOL... You deal with it the way you can, k? And as for crying in front of your kids? Go for it.. it's healthier for a child to see their parent being "human" then you holding it in. And then when they cry, they think there is something wrong with them! Nah... go ahead girl... cry away!!!! I am a functional cryer! LMAO.. I cry and move along... it's just who I am. Crying doesn't mean you can't handle it, are weak, suicidal, ect... it just means you have FEELINGS and can express them!!! Try to have a good weekend... k? And good luck with all the doc stuff... you ARE doing all you can for her, remember that! Hugs!! A.
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Post by Emilysmom on Jul 15, 2005 16:17:42 GMT -5
Christine~ I have not read all the other posts, and don't know fully what you are going through right now. I just want to say that I will be thinking about you and your adorable little bug, and praying that whatever is going on can be fixed!!! One thing I feel like I do know though...you CAN do this. You can do whatever Emily needs you to do, and you'll have plenty of support in the process. It could easily be very very hard, and I'm SO sorry you have to go thru additional worries. Please try not to spend a lot of time thinking of all the things that could possibly be wrong....take it one day at a time, and wait till the test results come back and the docs tell you what needs to be done. There are so many possibilities. Some of them are not bad at all! Please hang in there and continue doing what you've been doing. Please know we are thinking about you!
Susan
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Post by Jackie on Jul 15, 2005 17:18:10 GMT -5
I think all the posts are good...we all have waves of emotion....life is a roller coaster and having a child with a disability is all just part of that.
I have spent the past 25 years going from extreme highs to extreme lows. It is my nature to keep most of those lows to myself but I think those who can share theirs are admirable...and probably healthier for it.
From all your posts since you first started...you strike me as a person who doesn't stay down long.........
I just remember during Emily's first year of life...depite the fact that she appeared realtively healthy...they just kept hitting me with one thing after another....until I just wanted to scream............."STOP......not fair....I am having so much fun with her and you are trying to spoil it".......but we all just kept plugging away...and welllllllll now....we have this charming young woman ready to make her way in the world.
I am crossing my fingers that your precious Emily has nothing seriously wrong going on with her....that she has just maybe hit a "stall" that so many of our kids sometimes do...and just needs a bit of a kick start to get back to where she was..........
Whatever you find out...you know you have a supportive community here to help you thru.
I do hear what you are saying....understand your self doubts in all this... you made a conscious decision to take this path for all the right reasons and I think you need to try very hard to not look back and do the "what if" thing....because you are where you are ....and your decison gave you this wonderful little being......No point in spending the rest of your life 'doubting' a decision you can't take back and has already brought you so much joy.
Luv Jackie mom to Emily 25
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Post by myangelsaliandsadi on Jul 15, 2005 19:28:23 GMT -5
Okay I have not had a chance to read all of the replies...but simply wanted to share my personal experiences. As far as seizures go I have lots of personal experiences...myself, my brother, my mother and my sister in law all had seizures at one point or another. It was no big surprise when both of my girls ended up having seizures as well. However, that did not mean it was/is easy. Both of my girls are on Phenobarbital which is generally the first medication that they try in children...it is more fast acting than other medications and works for a wide variety of seizures. There were a few specific things I wanted to tell you however. A) My youngest daughter who does not have DS was having seizures from birth. The Dr's absolutely blew off ANY concern we had as being because of her prematurity. Finally at 6 months I drew the line and demanded an EEG...before it could be done she had a Grand mal seizure at home, quit breathing ect...we ended up in the ER for her seizures three times before they finally did something. They admitted her for a WEEK. She was 8 months old at the time. She couldn't hold her head up, she couldn't sit up, she couldn't pick anything up, she wasn't laughing, smiling, cooing, babbling, crawling, pulling up, pushing up on her arms...absolutely NOTHING. They actually considered Cerebal Palsy because of her prematurity and need for O2 at birth...because at 8 months old she was developmentally at a 3 month level. On the rare occasions that she would try to pick something up, ect she never used her left side. She didn't use her left side for anything at all. She was admitted to the hospital and put on Phenobarbital. Within 2 WEEKS she was re-evaluated at a 9 MONTH level....6 months development in 2 WEEKS. It was beyond incredible and her Pediatrician said he had never seen such a drastic improvement. It was very obvious that the seizures were affecting her severely. Now at 19 months old her only side effects from the seizures not being treated is a small left sided weakness, and speech delay. She is still on the medication and despite it she does have some seizures. However, that mostly happens when she is sick, that lowers the seizure thresh hold... My older daughter Ali who DOES have Down syndrome likely started to have seizures at 10 months old. This was right around the time her sister was born, and we thought that they were night terrors. She would wake up at night screaming....and it would take forever to calm her down. Because we never saw what CAUSED the screaming we assumed night terrors. Ali was 18 months old when her younger sister was officially diagnosed as having seizures. We started to consider the possibility with Ali as well. Shortly after that she had 2 seizures in the car during the day. It was the same as at night, except this time when the screaming started I pulled over and got back there....and another one happened shortly after that. She did the same thing about a month later...and that was when she was started on the Phenobarbital as well. At 20 months old. Ali's seizures never seemed to affect her development or anything like that. However she definitely was happier, ect once she was able to sleep without being awakened by the seizures. (She also has sleep apnea so the poor kid was probably getting virtually no sleep at all.) She is also doing well...still has some seizures but absolutely nothing that we can not deal with. Seizures are very hard to deal with....and I've said many times that I would take 6 kids with DS before I would knowingly take one more that has seizures. At least with DS you know what to expect, but with seizures things can change from one minute to the next. It is much more difficult to know what to do, and how to treat it...and it is a much more helpless feeling. It was also worse for me because I had no idea at the time that there was any genetic link with seizures at all. So I felt guilty for not being ready and watching for them, and for not pushing the Dr's to do something sooner. I have written my girl's stories for people like you on our website if you would like to take a look at it. Please let me know if you have any question...and CHOP is absolutely wonderful for seizures. We can not find a good Neuro in our state, and our Ped told us that CHOP was his first choice for out of state Dr's. Also, a normal EEG does not neccessarily mean the child is not having seizures. My girls have each had two EEG's....one each was normal and one was not....the normal ones usually happened when they were having the most seizures. As a matter of fact my youngest daughter had a normal EEG just hours after having two drop seizures at her Ped's feet! It is such a narrow window of time for them to do the EEG that it will only come back abnormal if the child has a seizure in that one hour or so that they are hooked up. Honestly it is YOUR instinct that is most important in dagnosing this. If you feel it is seizures you can always request a 24 hour EEG if you are sure that she will have one in the 24 hours. (For us we don't make it more than a few hours without a seizure, so this was a for sure thing.) You are right that this too shall pass. And you will learn a lot that will help other people from this experience. Here is our website... www.aliandpeanut.com
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Post by Kristen on Jul 15, 2005 20:07:58 GMT -5
My dear, I am so sorry you're having to go through this! I have had PLENTY of ups and downs and as much as I let people know (especially online - anonimity is great ) you would never know it IRL. Every one of my friends and most of my family except DH and my mom (and they only get a small snippet of it) think that I have sunshine shooting out of my you know where and DS is merely a blip on the radar and it's full steam ahead for the woman of steel. If only they knew how I felt sometimes. That's why it's good to let it out, even if other people don't get it, and most here do. I have not head to deal with the health issues, save a wad of stuck phlegm at 1am that had me calling the ambulance when Carter was 7 months old, a couple testicles that want to come down and some pesky croup that we are learning to head off. That stuff almost scared the life out of me because for a moment every time it happens, I get very, very scared that this is when our luck runs out. Like that hourglass dropped that last grain of sand and he was turing some imagined corner. I have not had to experience what you have and from those glimpses of my own fears, I have overwhelming repsect for you and what you are doing for Emily. It's tough - tougher than I know - but you are doing a fantastic job. You seem to feling better - I am glad for you! Keep us posted!
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Post by CC on Jul 15, 2005 21:36:36 GMT -5
Aww CHRISTINE, I am sorry to hear little Ms. EMILY is not feeling well HUGS and Prayers being sent to you from me here in Northern Jersey Its OK to vent girl and especially OK to vent here, Geez if we can't share the good and the bad whats this all about then right?? Its scary for you girl and its OK to say so, Man oh Man I remember those days and even some still now thinking OK Chris has DS and we are dealing but come on does he have to have other issues too, like his heart issues. ABSOLUTELY not fair and I know I hated when my parents would say this to me girl BUT life truly is not fair. Things are handed to us and we learn to deal cause we are Mom's that Love our kids Hang in there girl and know you have tons here that are praying and pulling for both you and Emily CC ~
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Post by Deborah on Jul 16, 2005 6:48:02 GMT -5
Christine, I am praying for Emily. Please keep us posted
Deborah
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Post by rickismom on Jul 16, 2005 14:42:56 GMT -5
Well, I'd be scared too, and you have every right to feel as you do. And fair? That's all G-d's arithmetic, not ours. [ "Gee G-d, don't you think that the nice perfect mom in house number 15 could handle this better than me?"] Although Ricki is doing well, about 2-3 years ago I was going through a TERRIBLE crises with a close family member, and I know that I felt that it wasn't "fair" to have that very unusual test alongside having Ricki's DS to deal with (esp as we were fighting tooth and nail at the same time for her rights...). But fair or not, you just have to do what you can. Read your signiture. Not only do "others" have troubles- so do you.... and may you be graced with the perserverance to rise to them.
And its normal to have off days (I told one friend who asked how I was "Ask me tomarrow...") Hope things improve QUICK!!
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Post by CC on Jul 17, 2005 19:01:34 GMT -5
Hey CHRISTINE, just wanted to let you know we are THINKING and pulling for you and little Ms. Emily on your test tomorrow CC ~
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Post by wrblack on Jul 18, 2005 9:47:11 GMT -5
Hey, Cbean,
Hope you and little Miss Emily Noelle are having a really good day today. Could be that today will be a bit tiring and hectic but hope you get some good news at the end to make it all worthwhile.
Regards, Bob
And hugs to your bug from all in Uno Land.
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Post by Valerie on Jul 18, 2005 10:30:08 GMT -5
Yes, Christine, hope things are going better for you, and you get some good news today!
Update us when you can!
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Post by YoshsMom on Jul 18, 2005 17:12:32 GMT -5
So sorry all of you have to go through this. But Emily's got a lot of people praying for her and I know you're strong enough to get through this.
Last year at just about this time I had a 4 month period where almost everyone I loved was in the hospital with something scary. First Dh had kidney stones, then a cancer scare with Yosh that turned out benign and a my Dad really had cancear and needed his kidney removed. But those black clouds do go away and next year at this time you'll be thankful for getting through these bad times, just as I am.
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Post by laurasnowbird on Jul 18, 2005 17:42:07 GMT -5
Christine,
I've been thinking of you all day. I hope your doctor's appointment went well. We had a seizure scare when Ethan was eight months old, had to go through the whole EEG thing, and I was terrified. Turns out that as a result of his reflux, he had Sandifer Syndrome. He would do this weird arching thing that mimics infantile spasms. Scared me more than anything else we've faced so far, so I know how you are feeling. Maybe it is just reflux for your little bug too! Ethan definitely wasn't his happy little self until we got him some help.
Let us know when you hear something....your Uno family is all waiting anxiously....! Hugs, Laura
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