9/11 Update on Kylie Brooke!

Kylie is 10 months old today

I cannot believe she will be one year old in two months.

Kylie had her first test done to see if there is any concern for cancer. The test came back NEGATIVE!

Praise the Lord

She still has one more test to do but we have run into some problems…

Kylie is EXTREMELY hard to draw blood from. Recently, to get blood from her they had no choice but to go into her artery, which is not good and can be dangerous.

So there is discussion to do a PIC line or a port. This makes me very nervous because that opens the risk up for infection a lot. A PIC line caused Kylie to get staph and sepsis, at one time.

Her transplant team and the team at Children’s Hospital of Richmond (CHOR) are in discussions on how to move forward.

Kylie started therapy for the first time since arriving to Virginia (finally!).

She has a lot of work to do to catch up on milestones. She is almost a year old and cannot sit up on her own or roll over yet.

Recently, Kylie has become very lazy when we try to work with her.

She has learned how to use her voice and will cry to be held all day, everyday. I will admit that we do give in (every time) and end up holding her all day because it hurts to see her sad and we were not able to hold her for the first 3-4 months of her life. So I guess we are to blame as well.

Wish us luck on trying to stand our ground!

I want to give a HUGE shoutout to Children’s Hospital of Richmond at VCU (CHOR)

Recently, Kylie started to have elevated heart rate (140s-150s) and increased secretions. I was worried that she had caught some type of infection because those are usually the first signs.

AS SOON as I voiced my concern to CHOR they ALL jumped into action. I had ENT, pulmonary, pediatrician and even the infusion center calling and texting me to help find out what was wrong with Kylie.

They got her in right away and were absolutely amazing!

Everything came back normal (God is good!) so I was worried for nothing but they were so great and I am so thankful for them.

Also, a huge thank you to Well Care Pharmacy , who on Sunday (when they are closed) went into the pharmacy and then dropped off the ointment medication to the house because he knew Kylie had a bad rash.

I highly recommend both places if you are in the Richmond area! I am so incredibly grateful. God has blessed us with so many amazing people in our life, and that includes all of you.

We love y’all — at Children’s Hospital of Richmond at VCU.