Happy Birthday Kyle!

Happy Birthday Kyle! We love you!

Kyle at the beginning of the 20 minute visit

Today, on his birthday, I keep trying to write a letter to Kyle. I want it to be profound. I know he knows I love him and that I always have his back. I have held on so tightly and I am just starting to let go.

I have spoken about Kyle and his battle with Stevens-Johnson Syndrome before and today I need to say more because Kyle wants me to tell you more. Now coming out the other side of our personal horror movie, Kyle wants you all to know that he is ok and not only did he survive SJS and continues to survive SJS, he has learned a lot. Just other night as I was tucking in him in, we were talking and he said, “Mom, I am really glad you write about Stevens-Johnson Syndrome. I am really happy you tell people about me. I think people should know about it. And you know what, Mom?”

“What, Kyle?”
“Do you think I will ever know anyone else who has had Stevens-Johnson Syndrome? Because I would really like to meet them.”
“I bet we can make that happen.”

As I turned out his light he paused and said,

“I bet it will be a great book, Kyle.”

I shut his door and walked away, thought about where we have been and where we are now. People always say to Kyle,

“You must have something really important to do on this planet because you have been through so much.”

I never know if that is their kind way of saying,

“Dude, your life really sucks,”
or if they see what Dave and I see, one strong, resilient and amazing kid. Whatever is behind those words, I would like to think that it is true, “Kyle will do great things.”

He already has.

Kyle in the Middle of the 20 minute visit starting to crash

Nothing I have done has ever come easy and as I have mentioned, having kids was no different. For years after Kyle’s birth I suffered PTSD. (Long story I should post). The favorite part of his birth story he likes to tell people, “My HEART stopped. I was NOT breathing. They hit that BLUE hospital light. Called the resuscitation team. I was DEAD for FIVE minutes until they were able to bring me back to life.” His story is usually followed up with a, “YES, I was really DEAD for five minutes.” And then Eli says, “Mom, really? Was he really dead for five minutes?” I always come back with, “Well, he was not breathing and his heart was not beating for five minutes. You tell me.”

In those crushing moments when I am in say, a truck stop bathroom, painfully once-again miscarrying, I breathe in and think, “You are so blessed. Many people cannot have children and YOU have those two amazing boys. Remember, they saved Kyle! Get up, pull yourself together and go outside. Your boys are sitting in the car waiting for you.” That is what I do.

And now that Kyle is feeling better and back in the swing, I am starting to breathe. Because he wants me to tell you about Stevens-Johnson Syndrome battle, I think I can. What we have gone through has bound us together like some super crazy soul-strengthening polymer that you just cannot separate and not just Kyle and me, but Dave and Kyle, me and Eli and all of us. Because Kyle gave me the space to say these things, as I re-read what I have written, I think this post may be a little more for me than it is for him. Hey, but that is Kyle, sometimes misunderstood (especially when he was younger) yet you will not find a sweeter, more compassionate, more perceptive and thoughtful kid.

Just one year ago Kyle was still in Primary Children’s Hospital. After sometime he was finally able to get out of bed and leave his room. After this huge freedom had been given, each day Kyle would not-so-patiently wait for his friend to arrive. “Mom. Mom. Call him. He is not here yet. Call him.” Even on Kyle’s sickest of days, those days when his ice pack covered eyes were also covered by a blanket that was wrapped around his head and covered with a pair of sunglasses, just to make sure no light got in, well, even on those days, he always thought of his friend.

When his friend arrived, Kyle would sit up and say,

“Hey, do you want to go for a walk?”

His friend would always respond the same way,

“Yes. Whatever you want to do. Will you be ok?”

Then all of us would help Kyle get up and we would walk to the playroom. Kyle would often say,

“Mom I am so glad he can come see me. He understands and I do not feel so alone.”

Just a year prior, his friend  suffered a serious brain injury and was still not back in school full time. He and Kyle would walk and talk, his friend patiently waiting while Kyle grabbed tissues along the way and his friend did not seem to mind watching Kyle spit out all the dead Zombie-parts-looking tissue he was shedding from inside. Nor did his friend mind Kyle’s moveable IV stand, his feeding tube, red-shedding-eye-tissue-sticky-oozy eyes and all that gross and thick mucus membrane Kyle’s body was letting go. They walked and talked and for those moments, it seemed like all the things weighing Kyle down disappeared, and in those moments, I could breathe.

Once in the playroom we often had to pause and again catch our breath. We would look around and see all of the children. Many of the kids we knew would be fine, many were dying, and if they were not dying, their lives had been forever changed by some terrible accident or illness. We knew early on that we had not cornered the market on bad things that happen to you. And in the playroom there was this coming together, where all the other families understood that too.

On one of the many random days we were in the playroom Kyle and his friend wanted to play Apples to Apples. There were about ten times as many volunteers as children so Kyle and his friend asked them all if they would play. The boys also noticed a little girl in a wheelchair and asked her and her mom if they wanted to play. She seemed a little out of it. The boys (because children can just ask these things) asked and found out that she had also suffered a TBI (traumatic brain injury). It was early on and I could see the fear and confusion in her mother’s eyes. Patiently the boys waited as her mother explained things over and over again.  I ached for them:

“Her short term memory is really bad right now. They say it will get better.”

I could see her hoping those words were true. Kids aren’t dumb. All three  knew they had a long way to go. And as I sat there, I was grateful that as Kyle, his friend and this little girl asked each other the Apples to Apples questions,  their pain seemed to disappear.

After 20 minutes Kyle was done.

That is how Kyle is. Even when things completely suck, and believe me there are times still that they suck so much that I have a hard time talking about it, and people, I do not have a hard time talking about anything. Kyle is always able to manage perspective. On those dark and very painful nights when we were alone in his hospital room he would always say something like,

“Mom, thank you for being here. I don’t want to be alone. Thank you for talking to my doctors. I am so glad you are here. Mom, are you ok? Mom, it hurts so much and I am scared. Thank you for making sure I am ok.”

In those moments when I had no idea what the hell was going on or what was going to happen, Kyle always managed to appreciate the people in his life, and as you are learning, life has not been easy for him. He knows life is not always smooth and because he knows life is not easy he gets how awesome it is to have people in your life who love you and who have your back. And guess what? Kyle will always have yours.

45 thoughts on “Happy Birthday Kyle!

  1. HAPPY BIRTHDAY KYLE from a mom of an 11-yr-old boy who happens to think you are truly an amazing human being (even though I’ve never met either of you)! You seem to possess wisdom beyond your years…OMG to be able to thank your mom and express your fears/feelings even in your darkest hour. I pride myself on being a pretty considerate person, but that right there takes the cake! I am so in awe that you appreciate life and embrace it at such a young age. Awesome!
    I would totally buy that SJS book by Kyle! Let me know when I can preorder from Amazon. 🙂

  2. Happy Birthday Kyle! Yes, you are an extraordinary young man, blessed with a family made of the same fabric.

  3. Hi Andrea, Beth here. Kyle wanted to reply so here goes.

    From Kyle: Thank you so much! I have been wanting to write a book for a while and of course my mom would help me, but it will take a little bit of time. It made me smile that you would actually “preorder” my book. Thank you!

    Beth Here: Andrea, you made Kyle’s day! Thank you!

  4. Thank you, BS! Your family’s fabric is not so bad either. What I want to know is if there were any mummified fingers involved? 😉

  5. Happy Birthday Kyle from the Stevens-Johnson Syndrome Foundation. Yes Kyle, you will meet another SJS survivor! There are alot of people that have also had SJS and they are sending love and birthday wishes to you. My daughter Julie also had SJS. She had it when she was a baby. We have a lady in Salt Lake that had SJStoo and I am going send her your mom’s blog. Julie would love to talk to you. We are in Colorado. She is now all grownup. She is 18 years old and she runs the SJS kids website and support group. The kids site is http://www.sjskidssupport.org Have a wonderful birthday Kyle! 🙂
    Love, Jean

  6. Happy birthday Kyle!!! My son Ian had SJS when he had 5 years old, he is 9 now and we live in Mexico. On august we travel to the SJS Kids Week at the Boston Foundation for Sight and Ian was able to meet with other kids who had SJS. We had a great time and also there’s the sjskidssupport group where you can get in touch with other kids. Remember you will always have an sjs pal in mexico and are welcome to visit any time….By the way, we live by the beach if you like swiming….Hugs to you and your Mom ….

  7. Happy Birthday Kyle! I wish you more blessings, good health and happiness throughout the coming years. My son (Shane) had SJS/TEN when he was 21 months old, he is now 10. He would like to meet other SJS survivor like you. And hopefully one day you and Shane will meet. Sending you a big HUGS from Canada.


  8. Hi Kyle,
    I hear it is your birthday…well Happy Birthday to you.
    My name is Cindy and my granddaughter Valerie was your age when she had Stevens Johnson Syndrome. She is now 12 years old. We live in Michigan, the mitten state.
    Having your birthday so close to Christmas must be a lot of fun. What you don’t get for your birthday, you can ask for for Christmas.
    There are a lot of kids that have had Stevens Johnson Syndrome, so please don’t feel all alone. We are doing everything we can to stop this from happening to other kids.
    Happy Birthday Kyle.

  9. Happy birthday Kyle!! I’m not sure if he even remembers the day mike and I came to see him but I remember so well him fluctuating between grumpy, grouchy, I feel like crap Kyle to sweet, gracious,thank you for coming Kyle. I know he was trying so hard to be polite in spite of being in so much pain! He IS an amazing kid and we look forward to seeing what amazing things he does! And what amazing things his mother continues to do too…

  10. Happy Birthday Kyle! I am Julie’s aunt. She had SJS when she was a baby. My daughter Emily has a birthday close to Christmas too, but her birthday is after Christmas. She’s 10 years old. There are lots of people that have had SJS or know someone that had it. You’re not alone. Best wishes from Colorado for a wonderful day!

  11. Hi Kyle! Happy Birthday!!! My daughter, Karyl, had SJS/TENS when she was 17. Her birthday is the 26th and she turns 20 this year. Your birthday is a special day as you are a strong man. You are a survivor and there are others out there just like you. Know you are not alone. May you celebrate with love and happiness!

  12. Happy Birthday!! This is such a special time for you and enjoy it with the family you have.

  13. I was lucky enough to be the first commenter to wish Kyle a Happy Birthday. Tonight I just checked back in here and I’m teary-eyed reading greetings from SJS survivors! It sounds like there is some great support out there for you, Kyle (and family!) SO wonderful to hear! I still can’t wait for the book too!
    There are lots of holiday birthdays! My little brother turns 36 years old tomorrow.


    I too am an SJS Survivor and saw that today was your special day! I was 34 when I got sick. I’m 37 now, but I have 2 little boys who survived it right along with me. You have an entire family out here just waiting to meet you one day! I have been lucky enough to be able to meet so many! For the past two years, we have had Team SJS, which is a group of family, friends and Survivors from all over the country as well as Canada, who walk and/or run the Fox Cities Half Marathon to raise awareness and get to meet each other! It is a celebration of survival and a way for all of us to find comfort in not being alone. Maybe one day, you and your family can come to Wisconsin and celebrate with us too!! Anyway, Happy Birthday, again!!!!! All the best to you and your family!

    Kendra Schmidt

  15. Jean. Thank you and the Stevens-Johnson Syndrome Foundation for reaching out to Kyle and our family. What a gift all of these messages have been! Kyle would love to talk to Julie. As I mentioned in my post, he would love to talk to people who understand. Because Kyle’s SJS went internally, it was really hard to diagnose until they finally punch-biopsied the inside of his lip.. Yes, his eyes lips and nose were very seriously affected. He also had some skin lesions. For him, however, the entire inside of his mouth,throat, digestive system and lungs were affected, which seems a little unusual for SJS? We are still seeing residual damage. He is often sick and his immune system has had a hard time re-setting itself. WE ARE GRATEFUL, however, that the long-term damage to his eyes was minimal! We have read about the many people who have suffered extensive eye damage and OUR HEARTS & prayers go out to them. We feel blessed and it seems like those who come out the other side of this feel very blessed to. We are grateful for all of you!

  16. Maria Teresa,

    What a beautiful comment. How is your son now? How are Ian’s eyes? What a big experience for him to go through at age 5. Wow! I am so happy to here he is doing better. We hope to connect on the SJS Kids Support Group too! Hey and maybe we will take you up on your offer sometime. We LOVE the Beach! Hugs back at you!

  17. Beth Avilia, Thank you for the Birthday Wishes for Kyle. We read the comments today and he was blown away! I am so glad your son, Shane made it through. Hugs right back at you! Yes, hoping Kyle meets all of you some day!

  18. I would also like to thank everyone for their lovely comments and well-wishes. It’s hard for us to face the hard truth that Kyle came very close to going blind or even dying last year, and his 12th birthday has been an opportunity to rejoice in his life. Even though he has lingering effects of his illness, it’s amazing to see how he’s thrived in the past year, and what a strong athlete he is now. We share a special bond with other people who have gone through the same ordeal, and we’ve loved hearing from you.

  19. Happy Birthday, Kyle! I’ve read your mom’s blog since the dark ages and I’ve gotten to know you through her eyes and through the stories she tells about you and Eli. You guys are remarkable kids, particularly in the face of all you’ve been through! Keep on keepin’ on, kid. You are really something special! 🙂

  20. Happy Birth Day, Buddy… I promise it will get better.. I’m a survivor of 5yrs, I was 27 when I get sjs 1st, then it turned into TENS. I was not awake for a whole month due 2 the pain.. But our God had something in the future to come for us.. something very special.. Just like you..

  21. Hi Cindy! Thank you for taking time to comment and for telling us about your Granddaughter. Even though Steven-Johnson Syndrome is a terrible disease, it is really cool to feel like we are not alone! Thank you!

  22. Tricia, Kyle totally remembers that do and you described it well. He did not want anyone to know how badly he was feeling so when people came to visit he “put on” as much as he could. We are grateful for you guys and that you were there for us. Always THANK YOU for the love, generous words & support! We love you guyS! love, BD&E

  23. Hi Leslie, We are seeing and being reminded how SJS really does affect the entire family! Thank you for reminding us that others get it. It really helps us not feel alone! Best wishes to you and yours!

  24. Hi Sue. We are so glad your daughter Karyl survived! Happy Birthday to her! We are feeling very blessed and full of love at all the generous words directed our way! Thank you! And we really believe Kyle is the one who led you all here. He is really excited and happy that all of you care about him! Thank you!

  25. Andrea, like I explained to my boys yesterday, “I am feeling a little misty.” Yes, I have been feeling misty and full of love. We wil write more. We have. Thank you for checking back! Happy Holidays and Happy Birthday to your brother!

  26. Kendra, How are you doing? We are so happy/grateful you survived! Surviving really is what seems to happen! We would LOVE to meet you and would LOVE to participate in the Fox Cities Marathon! We like ho you call it a celebration of Survival and a place to not feel alone. Thank you for the birthday wishes! Kyle has been reading all of these comments and is feeling overwhelmed with love. He keeps saying, “I want to say something. I just need a minute.” Thank you! We are all feeling the love!

  27. Hi everybody it is Kyle here!

    Thank you everybody for the wonderful birthday present. I now truly know that i’m not alone with SJS.

    I am so excited to come to some of the SJS events.

    LOVE, KYLE <3 🙂

  28. Hi Kyle!! Happy (belated) birthday and MERRY CHRISTMAS too! My name is Bridget, I live in Salt Lake City and I have had Stevens-Johnson Syndrome twice… more importantly, I TOO would pre-order your book so I’ll be looking for it! Maybe you could collaborate with some of us and our stories to let others know about this NOT rare, but rather very common (and terrible!), syndrome. Like you, I have never met anyone else who has had SJS BUT I HAVE talked to SO many people whose brother, mother, sister, cousin, etc. have had it, so I KNOW we are not alone!
    I have to comment that, I’m not sure who Eli is… (your dad or brother?), but that is my (late) husband’s name too! We have another thing in common! Whenever I see his name, I always feel a connection of the heart! My daughter Madeline and I are sending many prayers your way, for not only your healing but your happiness! And remember what Walt Disney said… “If you can dream it, you can do it!” We will be waiting for your book (when you feel ready) and if you need some “stories”, I (sadly) have two… BUT I’m all okay now! 🙂
    God bless you Kyle and I hope the New Year (and all the following years!) bring you everything you may want and need, most importantly, happiness for you and your family!
    ♥•°*”کک”*°•.♥BLESSINGS♥.•°*”کک”*°•. ♥LOVE♥•°*”کک”*°•. ♥PEACE♥ •°*”کک*•. *°•. ♥FAITH♥.•°*”کک”*°•. ♥GRACE♥.•°*”کک”*°•. ♥HOPE♥ کک”*°•.*°•. ♥ *°•.
    ALL OF THESE I PRAY FOR YOU! AMEN!!! ♥♥•°*”کک”*°•.

    Love from Salt Lake… Bridget (& Madeline)
    p.s. Feel free to email me any time you want!
    *•* Hєrє’s to α Hαρρу Healthy Nєω YєαR!!

  29. oh Kyle! I see it says “Your email address will not be published” so I want to give it to you… it is bes120457@gmail.com AND my “Christmas tree” came out lopsided but know it was sent in good faith! 🙂

  30. Thank you Priscilla! We are in awe! Survivor is right! We are happy for you and all the SJS survivors! I am so glad you also survived TENS! WOW! much love 🙂

  31. Hi again Kyle! My daughter just said that your book will go DIRECTLY INTO THE LIBRARY where she works, SEVERAL COPIES!! (She wanted me to pass that on to you…!) 🙂

  32. Bridget (and Madeline),

    Hey there. With the holidays, I feel like I did not give you a proper response. I cannot believe you had SJS — TWICE! Wow! We are so happy you are ok. Thank you for your wonderful (2 comments) and we will email you. As a parent, we protect Kyle’s email from the entire world. I am sure you understand.

    AS FAR AS THE BOOK. *YES* we would love to collaborate with other SJS survivors. We think that would be so cool. Maybe we can figure out a time to meet and see if that would work.

    Eli is my other son. It is a great name and our Eli is a pretty amazing kid! And if you met Eli in person, I assure you that your heart would open wide. Thank you for your LOVE and for your prayers. Hello to Madeline! Plan on hearing from us soon.

    Beth, Dave, Kyle & Eli

  33. Hi Kyle,
    You are not alone and very lucky, i also had SJS when i was 11yrs old but the difference is the yr, back in 1980 SJS was not out in the open and few knew about it unlike they do today, i was shiped from Hosp to Hosp placed in confindment at some hosp and treated as if i was i side show, Drs & nurses looking at me thu the windows and refusing to care for me, i remember one nurse putting my food on a bedside table & pushing it in my room, My skin peeled so bad that all the freckles i had on my face are gone, i was out of school for almost a yr, ( I never thought i would miss school as much as i did back then ) I tried to find out more about SJS back then but there was nothing that i could find, i finally gave up & moved on but the memorys of having SJS where always there, those memorys lead me to nursing because i never wanted another child to go thu what i did and not have someone there to treat them with the respect and the care they needed. I had some medical issues later in my life and went to a new Dr in my area, he was going thu my history and stop in the middle of it and made one statement that that made everything i had gone thu worth every min of it, he stated he had to do a paper on my case when he was in school, but he stated that there was never a “cause” on my case, some of the Dr’s back then still didn’t believe the true cause. I was very happy that the word was getting out about SJS but not all of the facts what you are doing each and every word can make a change, the more people hear about SJS and other causes the more we learn and sooner or later that day will come when the words SJS will be a thing of the past. Keep up the good work or should i say words.

  34. I write this sitting in a room at Texas children’s hospital my son newly diagnosed with SJS . He is 13 and like you appears to be just is his mucous membranes. They say it was caused by mycoplasma as Cody also has pneumonia . It took me several doctor and a insane amount of misdiagnoses to get here. Use your momma instinct if I hadnt of kept pressing through I am not sure where we’d be now . Thank you for posting your story. It made me feel good that we aren’t alone .

  35. Leigh & Cody, Your comment breaks my heart. I know it has been just over a week since you posted. I am wondering how your son is and how you are doing. You have a lot going on and please know there are many people out there who get and who are thinking of you. They thought my son’s SJS was caused by Mycoplasma Pneumonia, by the way. He had Pneumonia when he was admitted to Primary Children’s Hospital here in Utah. Turns out they now think it was Ibuprofen (All NSAID’s except Tylenol). Keep pressing and stay strong. I hope they did IVIG and know that with mucous membranes the SJS can go internally. Because the skin may not look as bad, does not mean it is less seriously. Hoping the best for all of you. Please know I have been thinking of you and am here if you have any questions or need to unload. Most sincerely, Beth

  36. Beth,

    We are home now thank God ! Cody was released on May 30th. After i wrote you the next day they put him in ICU. I believe it was because of the Morphine and he couldnt eat. they tried putting in a feeding tube like your son had.He was so swollen they couldnt get it in. Thankfully he hit his plateau and the swelling subsided. We got him to start eating by squirting ensure in his mouth with syringes. The ICU doctors said I should keep him away from NSAIDs and Augmentin too because those were the other drugs he took but at discharge the regular pediatricans on the floor kept saying it was just mycoplasma. Today he got another blister in his mouth,I dont know what it is but the anxiety of the “what if’s” is enough to drive any momma crazy. I called the nurse line and they said to follow up in the morning with pediatrician.
    They did not to IVIG the dermatologists said he was too far into it for it to do any good.
    I thought I read on the blog that Kyle had it twice. Can you share with me how that happened more in detail? How long did it take for the bleeding to stop in his mouth?

    I would like to keep in touch with you. Feel free to email me too if you’d like

  37. Hi leigh and Cody,
    My daughter was diagnosed with SJS in November 2012. It all started after Halloween, adout a week after, she had this really hard cough that kept her up all night. After about the 2nd day of it I took her to urgent care where the doctor tested her for strep throat and it turned out negative but she was still treated for strep, she then got prescribed amoxicillin which she has always takin, she then took that for the next 8 days and was getting worse than before, now it was in her throat and lungs and she woke up on the 6th day of taking the white amoxillin and half her face was swelled as big as a baseball and her lips and eyes the same swelling, went back to the doctor and he changed to another antibiotic and said to come the next day and see how it is. We came into his office and he called the hospital and said they are waiting for you, this is very bad. White blood cell count was extremely low. So we proceeded to go to the emergency and while we were waiting my daughters lips got stuck together and it took me and another nurse to get them apart. We then went to get an x-ray and the doctor said she had pneumonia and chicken pox.. I Thought she had chicken pox when she was little but they were doctors so I just went along with it. Six days later she was still in the hospital and still being treated for the same, chicken pox and pneumonia. We requested to go to a bigger city, Wichita ,ks westley medical center because she hadn’t been eating for two week and had lost 8 pounds so far. Her lips were sealed together again and they couldn’t get any of their ivs in her arms anymore, she had been poked so many times it was hard for any of the nurses to put ivs in anymore. So we went in the ambulance from Ponca city, ok. To Wichita , ks. We arrived at the hospital on a Sunday and by Monday morning their head of disease control diagnosed her SJS and pneumonia. We then went straight to icu. Where the head of burn unit and a couple doctors and nurses put her on morphine and put a pic line in her and surgically removed the top layer of skin to her lips to pull them apart, after she was awake that night her lips went back together and had to be put under high levels of morphine and the head doctor at 1:00 in the morning watched my daughter for over an hour get her own lips apart. Crying and taking the pain like I had never seen anyone before. It took six more days , a total of two weeks in both hospitals to get well enough to go home. She was out of school one more week from the muscle spasms in her legs from not having been on her feet for 3 weeks. This whole experience has made my 11 yr old girl have to handle so much. She is a tough little girl!!!! I am writing this to you because your such an amazing woman to have gone through what you have and your son is seems to be just like you, with the same strength and love you have. I hope for the very best to both of you and your family. Today my daughter is home very sick, throwing up about 7 or 8 times throught the night. She has flu symptoms, she had this flu 3 weeks ago a few weeks after she got out of the hospital. I guess my worry is that I’m afraid since her immune system got so attacked by SJS that she seems like she gets sick more often and twice as sick as most. Didnt know if I should take her when she gets better for a flu shot..I’m just not sure if I should expose her in the doctors office with everyone coming in sick. I’m worried she’s more likely to catch something else… What should I do? Thank you .. Kim and Karisa …. Oh and happy late birthday Cody .. Hey Karisa turns 12 Yrs old Jan 24th…

  38. Kim,

    Hi there. I am assuming your daughter’s name is Karisa? I am so sorry for the pain you have all experienced. Each and every time someone emails about SJS, and more specifically, their personal experience with Stevens Johnson Syndrome, my heart breaks, my throat tightens and I always shed tears for all of you.

    I want to answer your question first. Yes, SJS can be very hard on your immune system, especially when steroid treatment is involved. Kyle is two years out from his initial diagnosis and eh still struggles, especially with respiratory difficulties. I often feel guilty sending him to school (because he gets sick often), but I still do. Be patient with yourself and your daughter. This may be a year to let school go and works on her health. The school should be very forgiving and if you haven’t already, consider a home-in-hospital plan, which will give you guys more flexibility. I sent Kyle to school way to soon and still feel the guilt. Eventually we pulled him out of school and were advised to have him finish the school year at home. I even regret bringing him in for math. His math teacher was not understanding and demanded he come in. Now I realize that I am the mom and had the right to say, “NO!”

    SJS is hard to diagnose and I see it through your story. These kids suffer more than they need too and I know doctors need to be more aware. Like your daughter, Kyle had pneumonia when he was initially diagnosed. I am sad about your daughter’s lips and disappointed that they did not do simple things like apply Aquaphor to keep them from sealing shut. I am so sorry she had to suffer. Honestly I cannot say that enough.

    Get the Flu Shot. We did with Kyle. It should not hurt her. I am no doctor, but I think she needs every advantage she can get.

    Happy Birthday to Karisa TODAY! I am so glad that today is the day I was able to respond. Please heal well and please know you are in our thoughts. I am here if you have anything else to ask or share.

    warmly, Beth <3

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