Long Overdue Update

I have been trying for a month to find the time and sit down to get a blog post done. The fates have not been kind, but I am finally doing it tonight!

Maddy had such an awesome Birthday and Halloween. This was the first year she really got that Halloween was her birthday and she loved that the whole day was full of celebrations. She started the day with a Costume Parade at School. Then we brought donuts for her class to enjoy.

After lunch her class had a halloween party with crafts and snacks. We left school and headed to therapy for trick or treating. We quickly opened presents before it was time to hand out candy. She was exhausted by bedtime! 

On November 4th, Alex participated in Extra Life for the Second year in a row. It is a day he looks forward to all year. It is amazing to be able to do something you love for a good cause. Thanks to the generosity of our friends and family, Alex was able to raise over $2000 for Cook Children's Hospital!

The rest of our month has been pretty busy medically. Alex has made 3 trips to the ER, 2 of them winding up in admissions. Maddy has been sick twice and has had an increase in her reflux and we've had a host of doctors appointments. 

For Alex, the problems we are having all stem from his GI system. His GI system has been cruddy for years, but starting in January we saw a decline in function leaving him with horrendous distention, increased nausea and relentless pain. His GI function has declined to the point that he has now had two episodes of sepsis (serious bloodstream infection) caused by his gut leaking bacteria into his bloodstream. We have tried as many interventions as we can and are at a crossroads. We have decided that the only option is to have a pretty major surgery to try and alleviate his symptoms and the infections. It is not a decision we have reached lightly. Alex will have surgery after the first of the year (probably February). In the meantime, we are going to do a procedure to try and offer some short term relief. 

Maddy has had an easier time, but she hasn't had a great month either. She has had two colds and has been vomiting on a regular basis. We thought she had a stomach bug, but at this point we believe it is just reflux as it has been going on for weeks, and almost always happens when she is lying down. She will be having an endoscopy and colonoscopy on Wednesday to try and see if there is any signs of what could be causing this. She has also been complaining of daily stomach pain for a few months. 

Alex has not been able to participate in most of his activities, but he has managed to stay in acting. He has his performance this weekend and I am praying he feels well enough to enjoy it after all of his hard work. 

Maddy continues to thrive in school and dance. She hates to miss either one! I was sad to miss two special events while Alex was in the hospital, but was grateful for friends and her awesome teachers who took pictures and kept me up to date!

Maddy loves to help me cook!

Crazy girl!

Alex "riding" Zoey

Hanging out at the Hospital

Best Visitor

True Love

So happy to be together

We had a really quiet Thanksgiving. Dad was supposed to come visit, but because Alex was in the hospital and we weren't sure when we would be discharged, he cancelled his trip.

Baking on Thanksgiving

Best part...licking the bowl!

Today we went to get our Christmas tree. It was good for Alex to get out, but he only lasted a short time before he wasn't feeling great again.

Please continue to lift us up in prayer as we try and help Alex both physically and emotionally overt he next several months.

Ali

Details on Hospitalizations for my records... Alex went to ER on Sunday, November 5th, but was sent home from ER. Back to the ER on November 9th with 101.4 fever and cold symptoms (Maddy also had a cold). Discharged the next morning to make it to a pain team appointment. All cultures were negative. Back to ER on November 16th. Fever of 104.1. Admitted and blood cultures grew out in less then 12 hours. Inpatient until November 21st.