I know it’s been a looong time since we’ve updated CB. We usually only update it if something is or has been wrong or eventful. Olivia has been doing very well this past year! She’s grown in leaps and bounds, especially since attending Bridges Therapeutic Preschool at the Therapy Place. She loves school and TTP!

We had the opportunity to go down to Florida for a church ministry conference the first week in April, and Olivia came with us. She did awesome on the car rides up and back, and she handled being at Disney Springs for most of the day well. She and I shared a dairy-free sundae at the Ghiridelli store. She picked out a baby Minnie doll at the World of Disney Store (which she played with for approximately 2 days before losing interest 😑💸). She also saw a big statue of Mickey and Minnie, ran up to it, shouted “i’i! I’i!” And signed “please.” 😍  We were very please with how inclusive Disney Springs is; we saw individuals of all types of abilities. Olivia wore her “nonverbal princess” bib and all the employees called her “princess.” 👑 A Disney trip may be nearer in our future than we thought!

After we got home, she was on/off sick for three weeks. We both got ear infections in our right ears, among other symptoms.🤧🤒 A few weeks ago, Olivia had an extreme reaction to what doctors suspect was the Amoxicillin she was on for her ear infection. She has used that antibiotic before, but I guess her body decided it had had enough. She started getting itchy rashes all throughout her body a few Tuesdays ago. Her pediatrician took her off Amoxicillin and offered to put her on a steroid and switch her antibiotic. I declined the steroid, because TBH I was afraid to give her more meds. She also suggested oatmeal bath for itching, which we did. By Tuesday night, she looked like she was covered in poison ivy and was miserable. We were ready to try that steroid. Nothing else was working, so we took a late night trip to the ER. 

There was a sizable amount of people waiting, but after about a minute wait we were seen in Triage. They ordered Benadryl, but upon lifting up Olivia’s dress to administer the meds through her g-tube, we found the tube was missing! And we didn’t have our spare.😑😑😑 I found it in our bedroom the next day. She was so itchy, I guess she rubbed out her button. We got seen real fast after discovering the g-tube was missing. She was diagnosed with Serum Sickness and sent home with meds. 

By Thursday afternoon, we were back. Benadryl, steroids, cortisone cream, etc were not working and she was still miserable. Some of her rashes were looking like raised lesions, her joints were swelling, and she feet, hands and mouth were turning purple-blue. This ER trip was probably second-worst to when we were in the Peds Resuccitation Room for her first seizure in 2020. She was miserable, Sean and I felt helpless, the nurses couldn’t get a good stick to give her an IV because her veins were “flat.” All of us were crying, and it seemed like there was nothing we could do except pray and distract ourselves with watch Spongebob. 

The vascular team came in and found a good vein, and after that things got a little better. Olivia was admitted to the Children’s Hospital Thursday night to Saturday morning. The rashes were so extensive, that they were on her scalp, ears and face. She kept moving her hair out of her face, and her hair was beginning to get matted from rubbing her head against objects, Balloo the bear style. She would not tolerate us trying to comb out the knots, either. I made the executive decision that she would be more comfortable if the hair was gone, borrowed scissors from the nurses’ station, and gave her a haircut. She was much more comfortable after that, and she was really into the butterfly clips she got to decorate her hair with. She began responding to treatments, and her skin was dramatically clearer by Saturday morning.

We both got professional haircuts once we got settled back home. It’s been a week of rest and recovery. She got to go back to school and the adults got to have normal weeks at work.🙌 And we all love the short, cool haircuts!