I mentioned on Monday’s post that Elaina was sick last Friday and missed her last elementary school class party. Elaina was not your “typical sick” like with a cold or the flu. Elaina suffers from a chronic illness. She was diagnosed several years ago with Cyclic Vomiting Syndrome or CVS. Her first episode or spell with CVS was when she was only 12 months old. What happens when she is sick, you ask?? During a spell, Elaina will be sick for 4 days. Elaina will vomit bile intermittently for the first 2 days. Sometimes she vomits 4-6 times in an hour. Poor thing will wretch and wretch. She spends the third day almost comatose. She only sleeps. When she does get up, we have to carry her. She is too weak and lethargic to do anything on her own. She may by the end of the third day sit up on the couch. By the fourth day, she is almost functioning normal, but she still has trouble walking or focusing on things. Her spells have grown further apart over the years. She used to suffer about every 7-8 weeks. Now she has a spell every 11 1/2 weeks to the day. The time in-between spells she is perfectly healthy. Some spells are more severe than others. Many who suffer from CVS claim to have a trigger. Maybe a food or excitement. Elaina is very difficult for doctors to understand because her spells come like clockwork. Only time is a trigger. We know EXACTLY when she will be sick. I mark the calendar and then pray in-between spells that maybe it will just never come. We have taken her to dozens of specialists. We’ve had countless trips to the ER over the years. We currently travel to the Cleveland Clinic to see a team of specialists there. Medications never work. They might just mask some of the symptoms or control the vomiting. We have tried everything from special diets to non-conventional therapies. Nothing works. No one knows the cause. Alyssa is her identical twin, but is not sick. Yes, it’s been heart wrenching for us and frustrating as well. I always schedule events or vacations around when she supposed to be sick. I can literally look at the calendar 11 1/2 weeks from now and know when she’ll be sick. I feel our only hope is that she might outgrow it some day.
Now based on when Elaina was sick last summer, I knew at the beginning of the school year she would be sick either for her Christmas program or her party. Everyone at school was aware too and really pulling for Elaina that she would beat it this time and not get sick. So when she was sick on Friday everyone was devastated. I’m going to get emotinal as I write this, Mrs. Winchell (the girls’ teacher) arranged and got permission to do something very special for Elaina. We got a call from the school explaining her plans. After a while, the doorbell rang and it was Alyssa accompanied by Mrs. Winchell and the whole class in our front yard! Scott told Elaina (who was in her pj’s) shw needed to get her boots and coat on because she had a visitor, which just baffled her. When she opened the door, Elaina’s face just brightened up and her smile went from ear to ear! Her class sang “Rudolph the Red Nose Reindeer” to her! They presented her with cards, including one from the principal. AND Mrs. Winchell gave Elaina a special little poinsettia! Elaina said it was one of the best days of her life!
What an amazing teacher! Not only what Mrs. Winchell did for Elaina and our family, but also what she did for the rest of the class. She really taught them so much about the spirit of Christmas. I heard the kids were so excited when they got back to school! They were telling everyone about how much it meant for them to do that for Elaina. The story has spread through our small town as well. My family will never forget what Mrs. Winchell did for ALL of us. I know I heard a little bell ring that day because Mrs. Winchell earned her wings.
I would like to wish everyone and their families a very
I have never heard of CVS – I am so sorry for your daughter to have to suffer through it.
What a phenomenal teacher she has – how heart warming!!
Have a great Christmas!!♥
I have never heard of anyone else having CVS until now-my son was diagnosed at 3yr old with it and if this is any consolation, the frequency between episodes lenghened until they were so rare and has been discharged from the specialist completely.He has had no bouts the last number of years:) It is distressing to watch I know but hopefully as she gets older, she will outgrow it.
Trust you have a great Christmas:)
What a sweet thing, her class did for her. It is hard enough to have to go through something like that, and it is wonderful that she has the support of family and friends. Have you kept a food diary? I am not familiar with CVS, but it can't hurt to record what she eats and see if there is a pattern. I spent a lot of years in pain, until I found out it was what I was eating.
Oh my gosh!! Yes, Virginia, there is a Santa and her name is Mrs. Winchell!!
I have never heard of CVS either. I pray she grows out of this and SOON. I can't imagine how horrible it is for her and your family. I love what her teacher did! You never hear these stories anymore, you only see them in movies. It's good to know there are real stories of compassion and kindness out there.
I have never heard of this condition. Such a stressful thing for her and your family to have to deal with. I think it is wonderful that the teacher organized such a thoughtful thing to surprise your daughter with. Definitely wings for that teacher!
When you first told me this story, I cried. Now, today… when I read the story…I cried again. I love her picture in the paper holding the North Pole sign during the Christmas program. She is adorable. Love you guys, Merry Christmas!
That really is the spirit of Christmas! Your post made me teary. And all the better that the kids learned a good lesson and felt good because of what they did. Much better time spent in class than math class. I'm sorry your daughter suffers I'm sure it's heart wrenching to see her suffer. Merry Christmas.
Wow. First, I am so sorry about your daughter's illness. I sure hope you find a remedy or it takes care of itself. Second, what a touching story. I cried when I read it, too. the teacher and kids, especially Alyssa, really earned their wings. That is just wonderful. What a perfect Christmas Story. Thanks for sharing. All my best…
What an uplifting post…what a wonderful thing to do for Elaina. Let's all pray that she too out grows this disorder!
I believe I heard a bell, too, Mrs Winchell definitely earned her wings. What an incredible teacher! God Bless her, the principal, all the children involved.
I'm not familiar with CVS either but hope Elaina outgrows it. Here's a Christmas (HUG) for her and Alana.
Merry Christmas to you and yours, Linda.
What an amazing Christmas story! Absolutley heartwarming. I hope Elaina is feeling herself again by now and will be able to enjoy the rest of the holiday festivities.
Her teacher sounds just extraordinary.
Oh Linda I have tears streaming down my face, what a lovely thing to do for Elaina, I have never heard of CVS. I really hope that she is better now and can enjoy her Christmas with you and your family. Not just hugs sent this time my friend, but BIG hugs. Linda
That is a heartbreaking story as well as a wonderful one. It is so sad when we can't help our children feel better. Good luck and many prayers.
Oh your poor little one. There is nothing worse than having a child that is sick and not knowing how to help them.
Prayers to you and your family.
Lieve Linda ~ your story brought tears to my eyes, feeling with your daughter and family and then that lovely teacher! What a lovely Christmas story this is for all those involved.
Happy Holidays to you and your loved ones!
I'm soooo sorry that you all have to go through this and hope that she out grows it SOON! What a terrible thing for a little one. Her teacher is a true blessing. I can just see them all singing to her. Give her a big hug for me!
At this rush and hurry time I would like to say thank you for filling my heart with your story. May God Bless your sweet Elaina and I pray that one day she will no longer be afflicted
with this horrible condition. Merry Christmas.
I was sorry to hear that your daughter has a chronic illness which I have actually never heard of. What a beautiful story about her teacher and classmates!! I for one am very glad you shared it! It did bring tears to my eyes, both happy and sad.
I hope you and your family have a wonderful Christmas!!!
Mrs. Winchell really is an angel in disquise! I'm so sorry that Elaina has to suffer through such a terrible illness. She is very lucky to have wonderful parents like you and Scott to help her through these hards times!
Here's wishing you all a very Merry Christmas!
I'd never heard of this before. What a difficult thing to have to deal with! But what a wonderful thing Your daughter's teacher and classmates did for her! :0)
Oh, how sweet of her school. I know your and Elaina will remember that special time always.
I have never heard of that disorder but I am so glad to hear she is getting better in time for Christmas. Have a Blessed One.
What a wonderful gesture from Elainas teacher and classmates. It will really be a memory to keep you warm through winter. I do hope Elaina will outgrow this illness. I wish you all a very Merry Christmas!
Hi Linda, like everyone else i've not heard of CVS. I do hope Elaina grows out of the illness. What a lovely gesture from the teacher & classmates. Brought a tear to my eye to read of it. Hugs,
Now that is the spirit of Christmas. What a wonderful story! It fills my heart with love!
Linda – what a wonderful post – thank you so very much for sharing. Tears in my eyes as I read. How old are the twins. How devasting a thing to have – for all of you. I do hope it resolves. I have my 14yr old Granddaughter here with me and she suffer from realy bad migraines and has missed lots of school. I understand how you must feel. May your Christmas be very special…warm thoughts
Oh wow! What a lovely post! I"m so sorry to hear about your daughter but so happy that she has so many that love her and make her feel special.
Have a very blessed Christmas!
I've never heard of this illness before, it sounds so horrible for her and for all of you.
What the teacher organised was wonderful, and the sort of thing you see in those sentimental Christmas films I love and have been spending far too much time watching recently.
Happy Christmas to all of you.
So sorry to hear this…
Mrs. Winchell must be a wonderful person, she spreads the Spirit of Chritmas and make people feel loved. Wishing your daughter, you and your family a blessed Christmas filled with all the love, warmth and support you need.
Oh Linda this is the most wonderful post…the true Spirit of Christmas…a very Merry Christmas to you and your family!
My heart weeps for your brave little girl. I pray that her attacks dwindle down to none in the near future. Here's a hug from me to her – and you!
Merry Christmas to you and your loved ones! Hope you find the time to relax and enjoy the season! Hugs from Anne Ida
Thank you so much for sharing your daughers story! I feel a little bit enlightened… I have never heard of this illness before. But what a wonderful treat for her classmates to come and sing to her… that is the spirit of Christmas and I agree, her teacher earned her wings:)
I am just so sorry your darling daughter has to go through this…she and you are in my thoughts and prayers.
Thanks you for sharing your daughter's illness with us! I pray that she outgrows it…
What a 'Hallmark' moment when the class showed up on your lawn! And I agree..a very remarkable teacher indeed!!