I thought I would write a blog post including some recent images I shot of my beautiful 5 year old daughter. We did these all in about 10 minutes in my home, just because we were bored! I was keeping these images for personal use but recently, I wanted to share them because I want to show the world just what a precious and amazing girl I have blessing my life.

A couple weeks ago, Jayla got sick with a little virus. Just a bit of cold-like symptoms, and a fever for about 5 days. I had taken her to the doctor and she was prescribed some antibiotics to fight a slight ear infection she had. The poor girl was not feeling well over the entire week of spring break. I thought she was back to normal and ready to return to school and so on Monday she went. But then on Tuesday morning she woke up with very swollen lips. She looked like Angelina Jolie! It happened simply overnight. Upon closer inspection I discovered several bubbling blisters inside her lips. I was baffled. These were not “sores” like cold sores. They looked like the kind of blisters you get on your feet after wearing some killer heels for an entire night. I took her to the walk-in clinic who inspected her, swabbed the blisters, and sent us home. The doctor suspected this might be either related to Herpes Simplex or a reaction to the Amox that she had been taking for 4 days. She advised we stop the drug immediately and come back if there was any change. Over the next couple days the blisters burst and her lips did not reduce in swelling. She also developed another fever and her lips began cracking, bleeding, etc and looking very painful. On Thursday she woke up with spots on her arms and legs that looked just like Chicken Pox. But there were none on her tummy, chest or back. I took her back to the doctor immediately, and by this time her lips were making it hard for her to eat and drink. The doctor looked at her and sent us home, saying it was a virus that had to run it’s course. I kept expecting her to wake up with better looking mouth, I thought for sure some healing would begin soon, but on Friday she woke and they were even worse. She could not eat or drink, as she could barely open her mouth. That night I took her into Children’s Hospital Emergency. The doctor there came in after we were there for about 1 hour, and immediately said “I know what this is. I will be right back with the rest of my team”. The “team” came in, three doctors, and they told me that Jayla was suffering from a very rare reaction called Stevens-Johnson Syndrome. The spots she had developed really pointed them to this diagnosis. We were admitted immediately and put up in a room.

The next 5 days were really hard for us. This reaction can be very serious, sometimes resulting in death or blindness. There is no cure for this reaction, you simply have to support the symptoms they have by relieving pain and being sure they are properly nourished and hydrated. Jayla had to have IV fluids, and after being in hospital for two days, we had to insert a GN tube, a feeding tube, because Jayla could not eat or drink by mouth. The GN tube was certainly the most traumatic part of our stay, as putting it in is not fun, and very uncomfortable. Jayla’s mouth continued to get worse and it was very unsightly and painful looking. She didn’t get to see herself in the mirror until about Monday. She was quite shocked by how terrible her mouth looked, I will spare my blog readers the photos. It was definitely shocking, and I missed her cute little pink lips. She had difficulty talking, she could not smile, and most painful of all was that we couldn’t kiss her little mouth. As terrible as it looked, Jayla was very lucky. Her eyes were not affected at all, and the rash on her skin did not progress past a few spots. If you google this particular disease, you might be horrified by the images. Jayla was so lucky that this mostly only affected her lips, and didn’t even go down into her digestive system at all.

On Tuesday, Jayla turned for the better, and began eating and drinking by mouth again. The doctors told us that if she was able to eat, drink and take medications by mouth all day, we could go home on Wednesday. We were elated when we were discharged on Wednesday morning. Jayla had really hit a wall emotionally in the hospital, and she was missing home so badly that I knew that once we were home, she would make leaps and bounds towards recovery. It was now 8 days after the blisters first appeared. Pain management was key and some tylenol every 4 hours helped. Night time was the worst as she began having major mood swings in the night and becoming very angry when she woke up in pain, refusing to take medication.

But, once we were home, Jayla quickly improved. She literally looked better every single day. On Thursday of this week she returned to school, a week after being home from the hospital, and there is no evidence on her lips of how terrible they once looked. Luckily, the lips are naturally extremely regenerative. Now, my baby girl is able to smile, laugh, eat, drink, and give kisses again.

After going through this, I have found a new appreciation for her health. This was something that happened without warning, and we don’t know if it will happen again. We don’t even know what caused it, but we do know what DIDN’T cause it. It was not caused by her medication, it was not caused by Herpes Simplex virus (a common cause) and it was not caused by mycoplasma (I am not even sure what that is). The pediatritian says it was just a freak reaction to whatever virus she came in contact with. For some reason, all the right factors were lined up, and this happened. It is rare, and unlikely to happen again, but that isn’t to say it won’t ever happen again, and if it does, we cannot stop it.

I also found a new love and appreciation for parents who have children with any sort of illness that need to be hospitalized. So many times I wanted to run away from all this pain. I hated seeing my daughter go through this and being unable to do anything but hold her and tell her she will be okay again soon. Some parents aren’t even able to tell their children that. Some parents don’t know when they will leave the hospital with their child, or if they will at all. Some parents have other little ones at home to add to their worry. They are truly the most amazing human beings on this planet.

I commend and thank the doctors and nurses at BC Children’s Hospital. I was blown away by the detailed care Jayla received. Every morning a team of doctors, nurses, and pharmacists entered our room and reviewed Jayla’s case from the very beginning, then discussed the treatment plan for the day, any concerns I had as a parent, and our discharge goals. Jayla had visits from all the specialists to cover every aspect of her care. The Pediatric Dermatologist was who diagnosed Jayla (Erythema Multiforme Major, aka Stevens-Johnson Syndrome) and she also saw a Pediatric Ophthalmologist to be sure her eyes were okay. Parents were cared for as well, I had a cot in Jayla’s room to sleep on, there was a kitchen in her ward that had coffee, a fridge, bread for toast, a microwave, everything. Volunteers came around every day, bringing games and asking if they could relieve me for a few minutes and play with Jayla. If you ever have to take your child to the hospital, take them to BC Children’s. This is my advice to you!

So after that huge long story, and I am surprised if you are still reading, here are some photos of my beautiful little girl. In these photos she is happy and healthy, and I hope that never changes again!