God of Comfort – Baby Isaiah Update

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We are so thankful for the questions about Isaiah and his health and I can’t wait to tell you how he’s doing. First, I wanted to share a friend’s story/struggle with you all and ask you all for your intentional prayers.

For the past several weeks, I’ve been thinking during my quiet time about all the people who have reached out to us in prayer for their loved ones… they’re so moved by our prayer warriors that they want a piece of the action? Who can blame them? We serve an AMAZING God.

This past week, however, some of our dear friends reached out to us. They needed emergency prayers. Their 7 year old nephew, AJ, was diagnosed with an inoperable brain tumor. Running around playing one minute, just like any 7 year old, and then BAM. Dizziness. Forgetfulness. What was supposed to be a quick trip to the doctor turned into a nightmare for this family. A tumor. Inoperable. 9 months to a year to live for AJ. Incomprehensible. The family is here in Florida, a few hours away, although AJ lives with his parents in Chicago (he was visiting grandparents here when his symptoms started) but guess where little AJ was sent? Wolfson Children’s Hospital here in Jacksonville. We KNOW they’re the best, and God keeps showing us!!

And the family called me. They wanted to know what to do. “What do I say to AJ’s mom?”, she asked me. “How can we pray for them?” “What do we do?” We talked. We cried. She knows what we went through with Isaiah. She knows about the moment we were asked if we needed a chaplain in our room. We talked through what that moment was like, how our friends comforted us, how they prayed for us. And especially, how we prayed for Isaiah in that moment.

When I hung up the phone with my friend, I exhaled. And I remembered this verse (well, I actually didn’t remember the exact verse. I remembered the concept). I kept thinking “God let us experience what we did, what we ARE, with Isaiah so that we can share the glory of God with others!” Then Sunday morning, as if on cue, this bible verse was part of our sermon at Crosswater. There it was. 2 Corinthians 1, verse 4…

    …so that we can comfort those who are troubled with the same comfort God has given us!

I know God has a plan. (Jeremiah 29:11). I know His plan is perfect (Psalm 18:30). Paul and I were so comforted by those around us during Isaiah’s struggles. We were surrounded by people that God had comforted in their time of need, and they were comforting us. So, too, does God call US, now to comfort others. And I was reminded again how in the past 5 months, Team Isaiah has been a comfort to so many. In exchange, the people around us have been an incredible comfort to us, day in and day out. It’s part of God’s perfect plan for comfort. It’s amazing.

It does not diminish the struggles facing sweet AJ and his family. In fact, I write this today with sad heart for them, but optimistic about our prayer warriors and what God is going to do through this story with AJ. I am thankful for the opportunity to share God’s word with our friends, and am so grateful they trust me to share scripture with them in this very difficult time.  I call on all of our Team Isaiah prayer warriors to join me in prayer for this boy, this family, these doctors and nurses who will care for him. And we thank you in advance.I look forward to sharing more of AJ’s story on Isaiah’s Angels page in the coming months.

Speaking of Isaiah, what ISN’T he doing?? Ha! He is such a special little boy. He started eating real food several weeks ago and seems especially fond of sweet potatoes and avocados. He eats faster than any kid I’ve ever seen! Much like his Daddy, he prefers to have a clean face and thus, “helps” by using his bib to “wipe off” (spread out) his food on his face each meal. HA!

We have increased some of Isaiah’s therapies as we near his 6 month birthday (yeah, I know… how did this HAPPEN?) including extra physical therapy, swim therapy (well, splash therapy, really!) and speech therapy and we’ve done a bunch of research on what we might expect for Isaiah over the next 6-18 months. As many of you know, I work some long hours and because I work with the best team of folks in the world, I’ve been able to reduce my hours at work to make Isaiah our number one priority. Any plans we may have had to have him in daycare aren’t going to work as his therapies increase during this critical time between now and his 2nd birthday. Thus, more Mommy time! Thanks to all of you who prayed about that with us! We’re super confident it’s the right decision. And a big shout out to my team at Olympus who are making it possible for me to continue to be part of the team but allowing me the flexibility to make Isaiah FIRST.

As far as his physical therapy goes, they’ve begun to set some specific goals for him: for example, at one of our recent visits to Hope Haven, they indicated a new goal would be to have Isaiah consistently using his tummy muscles to lift up his legs and touch his toes by the end of August. In typical Isaiah fashion, literally the DAY after that appointment (over 2 1/2 months ahead of schedule), the toe-touching began and it hasn’t stopped since. It sure makes changing his diaper an adventure! So… CHECK! Next up: assisted sitting. The goal by August 28th is to have Isaiah sitting up, assisted by his hands in front of his body, for 3 seconds. I am confident we’ll hit that mark as well. What else? He’s a chatterbox.  A few weeks ago he was playing with a family friend, Nan, and he found his lips. When I say “found”, I mean he figured out that the can blow really hard when his lips are together and it makes a really silly vibrating, bubble blowing noise. He couldn’t be more amused by this, and for many, many sleepless nights following this discovery, he would actually wake up in the middle of the night I think just to make sure his lips STILL made this noise. HA!!! He’s turned into quite the chatterbox, especially with his Daddy who, after being home for almost a week, just left for another 2 weeks on the road. They sit together, doing what we call “intentional playtime” (therapies disguised as play!) and that little guy just chats up a storm. Paul really can’t get over how much Isaiah changes/grows/learns each time he’s on the road. It’s really rewarding and especially heartwarming for me as his wife to watch him as he loves on our son and works incredibly hard to be part of the ongoing “work” we are doing with Isaiah to best prepare him to continue to defy all these odds we keep reading about as they relate to kids with Down syndrome. Our philosophy is that Isaiah, like EVERY. OTHER. CHILD. will develop in God’s perfect timing just the way he’s supposed to. And because we’ve got incredible resources available to us, we can help his development along the way.

Speaking of which, Isaiah and I head to Atlanta later this week to meet with a specialist who comes highly recommended to us by some special friends Paul and Adrienne who have a beautiful, over-achieving, 6 year old daughter who happens to have Down syndrome. Seriously, check out Sara Kate SKIING (yes, snow skiing) at the age of 5 in this video.

The specialist in Atlanta is a myofunctional therapist (oral facial muscle therapy) as well as a speech patholigst, meaning she works in combination with speech therapy to address all oral motor issues including swallowing, articulation, and related medical disorders. By getting Isaiah in at this early age, our hope is to train the muscles in and around his mouth to function as a “typical” child would. It is so important to catch some of these obstacles early in his development so that he doesn’t start down the path of bad habits. If we’re able to correct them before they start, we’re confident we can provide him the tools to continue to beat the odds.

Wait. Did she say Atlanta? Don’t they live in Florida? Yep. I said it. And we do. This particular therapist comes highly recommended and we will start with a consultation. If we move forward with the therapy, we’ll develop a plan for us to visit Atlanta on a regular schedule, just like any of Isaiah’s other therapies. We’re excited to see what she has to say, and excited to learn new techniques that we can implement to continue to help Isaiah’s growth and development. We’re hopeful to welcome the Atlanta folks to the expanding group of Isaiah’s medical team here in Jacksonville. Much like his little chromosomes, as it relates to professionals who are the best in their field, who are committed to helping our little guy develop the best way possible, we say the more the merrier!

Below are some recent photos of our little guy. He’s super L-O-N-G (95th percentile in height) and not quite 70th percentile in weight. He’s got the cutest little tummy on him. And a long torso and little legs. He’s a hoot. We love you all very very much and encourage you to reach out to us if we can pray for you in any way. And please don’t forget to make some time, even if it’s just a few moments, to pray for sweet AJ and his family. God bless you!, t

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