I was SO proud of how well Brock did at the appointment. We’ve been seeing the same opthamologist ever since Brock was 12 months old and in the PICU the very first time. (At that time they were checking to see if the fungal infection had infiltrated enough to require an injection (!!!) into his eyeball.) Every. single. time. we’ve seen this doctor over the last 2+ years I’ve had to hold Brock down in order for Dr. T to examine his eyes. Yesterday he climbed right up into the chair by himself and let Dr. T look in his eye like it was no big deal! I’m not sure you can really appreciate that fact  unless you had seen how traumitizing eye exams used to be for him. So proud!

I’m hoping to having time to come back and post a recap of our trip but in the meantime, here are some more pictures.

The eye dr appt is b/c he has some blindness in his right eye b/c of the fungal infection. The antifungal drug that he’s been on for over 2 years can also damage the eyes. Praying for a good report this afternoon.

The spinal tap is just part of his chemo protocol.

Thank you for praying with us. We love you and are so thankful for you!

Please forgive me for not telling you before we left.  I’m kind of nutso paranoid about strangers on the intrawebs knowing when we’re out of town.

The trip was, in a word, perfect. Really. Thank you for praying for us! The kids stayed healthy. They had a fantastic time. Traveling with three littles was not nearly as daunting as I thought it would be.

I could go on and on with details but for now I’ll just leave you with some pictures. Because, really, that’s more fun anyway.

There’s LOTS more but my computer kind of freaked out so I’ll go ahead and post these before I lose them….

Brock’s Make A Wish trip to Disney World is coming up soon! He is SO excited. He had a doctors appointment last week and he told every person he saw that he was going to see Mickey and give him high fives. (Let’s hope that’s the case and that he’s not terrified of all the characters.) Jaycie is, of course, beside herself with excitement as well. Jay and I are just so thrilled to be able to spend an entire week with our little family.

Brock’s doctor’s appointment last week went well. He’s had a cold for several weeks now (that he lovingly shared with Reese) and his blood work showed that his immune system was a little low (his AGC was 1000). Please pray with us that Reese and Brock get healthy and stay healthy for our trip. We’re praying specifically that Brock has no fevers while we’re in Florida – if he does we’ll have to make a trip to an ER. This might sound trivial, but we’re also praying for good weather!

I’ll leave you with pictures. Partly because I don’t know how to wrap this up and partly because no post feels complete without pictures.

Ugh. I’m not smart enough to use a Mac. I’ll be back later with the pictures.

Finally having family pictures taken

That this was not the end.

Teaching this girl to read.

More family pictures.

Becoming a family of five.

Kissing this sweet face.

A few days ago Jay was changing Brock’s clothes and when he took his shirt off they started talking about his port. Brock said something about it hurting (when they access it to give chemo).

Jaycie was in the dining room coloring -totally NOT a part of the conversation. When she heard them she piped in with “Brock, do you know why they do that?” Brock asked “Why?” and Jaycie answered with a time-of-the-day-tone-of-voice “To keep you alive.” Brock just said “o-tay” and went right back to playing.

It might sound sad or sick or even a little bit morbid to you but Jay and I thought it was hilarious. It took everything we had to not laugh in front of them. I would imagine that our friends who have kids with cancer might be able to see the humor in it too.

Please continue to pray for our friends with the 2 sick daughters. The baby, Lucy, is having surgery tomorrow to get a feeding tube like Brock’s and to have a fundoplication done. Jay and I know how hard it is to be in the hospital this time of year and our hearts are hurting for them.

He has to go see the eye doctor at the end of January. We already know he has vision loss in his right eye because of the fungal infection, but we found out yesterday that one of the anti-fungal drugs that he’s been on for 2 years can damage the eyes as well.  Pray that his vision hasn’t gotten worse since we checked it last and that he will continue to adapt to the blindness in his right eye. He really does so well with it that Jay and I never even notice it or think about it.

Have you guys heard about this? Your kids can take a letter to any Macy’s store to mail to Santa. For every letter they receive, Macy’s will donate $1 to the Make-A-Wish Foundation, up to $1 million. We’re extremely thankful for the Make-A-Wish Foundation and this is a fun easy way to give back!

Please pray for some very dear friends of ours. They have two daughters that are terminally ill: EK who is 6 years old and LB who is 2 months old. They both have the same genetic disorder. LB is in the hospital right now because of failure to thrive and because they can’t get her seizures under control. EK is at home right now but she’s sick as well. This family also has two healthy boys. My heart has been so heavy for them. Jay and I know how extremely difficult it is to be living in the hospital during Christmas time. It’s hard to see your sick children hurting and it’s hard to leave your healthy children behind at home. It’s hard to not be 1 family under 1 roof. Please pray for EK and LB’s health. Pray for strength for the parents and pray for understanding for the 2 healthy children at home.

1. Because I don’t have time. (It’s the truth but it’s not a good enough reason to not write.)

2. I’m not a writer. I love to read and I especially love to read things that are well-written. I read posts by some of my favorite bloggers and I LOVE the way they write and I read their words and think “Do they just sit down and those thing naturally come pouring out or do they have to work at it?” I’m pretty sure it’s the former. I would have to work at it. A lot. Writing things like that doesn’t come naturally to me. And if I can’t write (or more generally, do) something perfectly then I tend to just not do it at all. {Now I COULD sit around and work calculus problems for you all day long but I doubt anyone would be interested in that.}

So my friend reminded me of something. People don’t come here because they love the way I write. They come here because they’ve come to love Brock. They’ve been there for some of the hardest things we’ve had to deal with and they’re invested in our family. And they keep coming back because they care and they want to know how he’s doing.

That’s just so…overwhelming to me. I can’t say thank you enough.

So enough with my excuses and perfectionism. I’ll keep you updated more. Promise.

——-

He’s doing good. Really good. He started speech and physical therapy at the public school last week. It’s…different. Night and day different from what we’re used to. We LOVE the therapists that have been coming to our home for the last 2 years so this will take some getting used to. The therapists at the school are great and I’m sure he’ll grow to the love them too….I think it’s the school setting that will take him longer to adjust to.

He has a clinic appointment on Wednesday to get chemo and recheck the fungal lab. We’re praying that it’s even lower than last time.

Y’all…do you realize we haven’t been in the hospital since August?? (knocking on every piece of wood within arms reach) I really think that’s the longest stretch we’ve ever been at home in the last 2+ years.

Please pray that he continues to stay healthy throughout December and especially January when we’ll go on his Wish Trip to Disney World.

Lastly, a story that I told my friend today. She sais I should tell all of you as well.

This morning Brock was asking for some chocolate milk so Jay was teasing him and saying…
“Do you love chocolate milk or Daddy?”
“Chocolate milk!!!”
“Do you love chocolate milk or Mommy ?”
“Chocolate milk!!!”
“Do you love chocolate milk or Baby Reese?”
“Baby Reese!!!”
“Do you love chocolate milk or Jaycie?”
“Baby Reese!!!”

  So yeah. He loves Baby Reese.

We go back next week to repeat the same lab.

I’ll update you as soon as we get the lab results.

In the meantime, enjoy a few pictures…