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Thread: 5 more days!

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default 5 more days!

    Hi!

    Only 5 more days until Caitlin has her appt with the new neurologist! I will be so relieved. When I picked her up after school on monday, her teacher said C complained of a sore throat. She seemed fine otherwise, but on tuesday, didn't look good in the morning so I cancelled her PT appt and kept her home from school. I really rarely cancel PT so that is a big deal for me to do that. It was a good call though as she looked worse thru the day and ended up throwing up in the afternoon. :( She seemed better wednesday morning but since it was only a half day of school I kept her home just to be sure. Another good call! We ate supper and she ate really good, had burgers on the grill since the weather is finally getting nice! Popped in a Doctor Who DVD (we're working our way thru season 6 and C is a big fan). We were almost done with the episode and I looked over at C who was sitting in her wheelchair with her tray on (she was still finishing dessert when we started movie) and her head was slumped over funny kindof tilted to the side and I could see her eyes were weird "seizure eyes". I got her out of the chair and onto the floor...she was still in the seizure but then it was over. Usually she snaps right back so we put the end of the movie on (about 5min)...it ended and I went back to her bedroom to grab her pjs and Brian yelled out for me...she started throwing up all over! It was bad. We had to give her a shower before I could take her to the ER, it was all in her hair. Scary cause you want to get her seen quickly but it was all over. After her shower she still seemed not right so I gave her the 10mg diastat we have for stuff like this. This was only the 2nd time I have ever had to give that. They increased the dose in february from 7.5 to 10...this time it worked! She was just knocked out pretty much. I could really feel the effect when I went to lift her...guess she does help me some usually as after the diastat, I felt the whole 47lbs when I lifted her! Got to the ER, and had to wait, busy night...a heart attack and a few car accidents ahead of us. I know how it goes so I didn't have an issue waiting, brought my laptop and some movies for her to watch on it so...but the family with a baby and a bunch of friends were complaining about waiting in the chairs. I felt a little sorry for them as they were young (and all pierced & tattooed up) and didn't know how it worked in the ER. I was chatting with them and the guys were all "they should see her (C) right away, we'll go tell that nurse" I just didn't say anything and they went up and bugged the nurse. I know better that being nasty to the people that work there isn't a good way to go...but they seemed really young. The girl with the baby was having the baby seen because the cord stump fell off and was oozing blood and they were worried. We got called back shortly after the guys bugged the nurse. The girl that took us back was all "I'm so sorry those guys were being like that" -I said, 'oh no worries, I think they just didn't know how it is' She saw we had our movie playing and I laughed and said, I know how it is and come prepared! LOL! Then we got brought back into an exam room (we were in the blood pressure/temp checking room). Then all the people who know us came in and they are all nice. Ran blood & urine tests and she got a CT & chest series for check the shunt (which was my worry with the vomit as she hasn't thrown up so much in a short period in a long time). All came back normal so we went home.

    The next day (thursday) C had a dentist appt and she did great for that! First time she let them brush her teeth ever...I laughed and said it was probably the valium working on her yet. No cavities, all is well for the teeth. Brandon had his first communion that evening so I had hoped she would nap and feel better for that, but she still looked really sickly so my mom said I could drop C off at her house while we went to the Seder meal. They had it off-site this year as there was 400 people (parents & kids & siblings)! The church we go to is 2 churches and we are splitting (officially) next month into 2 separate ones. But for this year the classes were still together and also they had 4th & 5th grade as they are changing it from 5th to 4th for first communion....whew! The place they were having the meal is about 2min from my parents' house so it worked out well. I was glad she went there as my mom said C slept for over an hour. And she would have been really bored at the meal. It was cool, they did a whole service about the Passover rituals and what all the different foods meant and we got to taste them all....but it would have been hard to maintain order with the boys and try to feed Caitlin (we pretty much handfeed her). I picked her up after and went to the church...there is a little room off the lobby, looks right into the church part and is all windows & french doors and has a sofa in it so I put her on the sofa and she fell back asleep. Brian's mom sat with her during the service. It's nice that it is so open so she could still hear the service....the choir did an Easter program. Anyway! Went home after, we had a cake & ice cream for our parents and the kids and my aunt came too. We put C to bed right away though and she fell asleep fast. She slept in until 8am this morning and looked a little better than yesterday but is still sickly.

    The only good thing is I know now that it is viral for sure because Brandon came down with it this afternoon! Poor guy! I had to get my van fixed this afternoon (new neuro is 2hr away so wanted work to be done before that)...my original intent was to walk to the library with the kids as it is just a few blocks away from repair place. Well, I begged my sister to watch them and she agreed. But as I was packing up, Brandon was just wiped out on the couch so I said he could stay home (he is getting to be old enough to trust). Glad I didn't bring him to her house as I got a call 30 min later from him, "mom, I puked, what should I do?" awww! I was like, well brush your teeth and go back to the couch and make sure the puke bucket is right there. He did make it to the toilet so that was good. He pretty much slept all afternoon and just looks totally gray in color. I am so hoping that we don't get this one! Logan was a little sick on monday (patient zero!)...just slept all afternoon and then was fine the next day. Caitlin & Brandon are getting hit harder by this bug. But she is totally showing all the weird seizure activity so I have been taking video of as much as I can capture to show on wednesday. Today her eyes were rolling up repeatedly (hard to describe, the old neuro PA called it 'floating eyes'). Got it on video! The things that make us happy! So just holding in there until wednesday...hoping the kids are feeling better and can enjoy Easter this year! I am hoping all of you are having it better than this and that everyone is healthy and has a peaceful happy Easter!! :) I did manage to sneak over to the candy store after supper tonight....got there 15 min before they closed! Good thing I knew what I wanted....so Easter Bunny is all ready.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Wow! I am exhausted just reading what you all have been going through! Not another bug!!! I hope YOU don't get it. Keep the water intake up, so no one gets dehydrated. Gatorade to replace electrolytes. Flat ginger ale.

    Poor Caitlin. Seizures and a viral infection must be dreadful. I will pray that all of you remain healthy and/or recover for your long journey to the new neuro, and that the new neuro is brilliant, compassionate, and full of insight.

    The young couple with the baby will learn the ropes soon enough. Or actually, let's hope they don't. Let's hope they don't ever have to bring their baby back to the ER for any reason. In this case, ignorance is bliss.

    I'm so glad that the hospital folks treat you well, as they know you and care about you and Caitlin. That always makes it easier for us, when we're at the hospital.

    Will you be decorating eggs? Or having an egg hunt? Fond childhood memories for me, as well as with my boys when they were young.

    Bless your hearts. Wishing you a peaceful and healthy Easter Sunday.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 03-29-2013 at 07:46 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
    Distinguished Community Member andromeda31's Avatar
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    Hi Rose!

    I also bought eggs and some PAAS on the way home from the candy store. :) All the kids love to eat hard boiled eggs so I bought 36 to do up. Caitlin needs every calorie I can get in her. Brian's mom usually hides plastic eggs around their living room for the kids to find...we go there on Easter. My mom & dad always had a weird schedule so she ususally had us all over the weekend before or after and we would do an egg hunt outside. Lots of fun, especially watching the boys hoarding their eggs from each other! This year though, my Dad is retiring this week (40 yrs at the same place!) and she is having a party for his retirement next week so no egg hunt there....plus we still have snow on the ground unfortunately! At least with the temps in the 40's this week is has melted a lot, but very squishy in the yard still. So lots of fun things coming up, hoping the kids get over this virus quick so they can enjoy it all! Off to bed...

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Snow on the ground! But it's Spring! I know you live way up North. Hope that the temps continue to warm for you.

    Congratulations to your dad!

    Healing prayers going up for your entire family!

    Happy Easter!



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #5
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    Hi Lisa,
    First of all, Happy Easter my friend!!! Boy, C's seizure and the trip the ER sound so heart-stoppingly scary. I'm glad that the diastat worked and that every worked out OK in the end. Wow, a little too much drama in our lives sometimes, eh? Like Rose, I don't know how you juggle everything - it's seems sometimes imagining your life that my mental picture is a blur, but then that's the way I remember my own life with my kids at that age too, a blur! lol
    Sending lots of love your way - hope everything goes well today and tomorrow (it's a holiday here, I think Easter Mon is in the US as well?)
    xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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