11 Jun Update
Well, once again I apologize for the delay in updates, but we’ve had such small tidbits of info that I tend to wait until we have enough info for a true update. Lately, I’ve been praying so hard and thinking so much of our other friends who are struggling with health issues that Keegan’s little problems seem, well, so little. While it makes me sad for our friends, it is very exciting to say that Keegan’s issues are little compared to everything else he’s been through since last fall. Many people have asked how we are doing, and I guess that has been my answer so far…Keegan’s health issues will never be a thing of the past, but at least now, they are manageable enough to allow us to be home for an amazing 5 weeks! Around January or February of this year, the thought of spending over a month in our own home seemed like such a lofty goal. We are so grateful for everything and everyone who has helped make this a reality.
First things first, we would greatly appreciate you adding some of our friends to your prayers. We know Keegan’s “prayer warriors” are strong and faithful! Our friend, Carter, whose parents helped connect us with our docs in Boston, is a multivisceral transplant recipient. Shortly after his one-year anniversary, he developed a case of hemolytic anemia and has been in the ICU. He is now on the floor and hoping to go home soon. This has been very scary for his family, and we pray that the Lord continue to allow Carter to heal and be home soon. Next, a friend of ours from Boston, Stellan, has been having more heart problems lately. He is handling it ok, but it is very stressful for his parents. We pray that he will continue to benefit from the medications he is taking and allow him to grow big and strong before another surgery is needed. Lastly, please continue to pray for our friends, the Akemans. The nasty stomach bug going around hit their house too on top of everything else, but they are all hopefully on the downside of this awful roller coaster ride of the last several weeks.
Now, on to Keegan…the therapy evaluation at Baylor last Friday went pretty well. They recommended he participate first in the day-patient program, where he would go for feeding therapy and PT/OT every day for several weeks. However, the waiting list is very long, and even their outpatient (2-3 times per week) is pretty booked. Of course, our insurance only covers 20 visits per year, so we are working extra hard to push Keegan’s medicare coverage through. All this to say, we don’t know when he will be able to start feeding therapy, but hopefully, he’ll get to start at least something soon. He will also be evaluated by ECI (a state program) in a few weeks for more physical/occupational and speech therapy at home.
Yesterday, we went in for labs again. Keegan’s liver numbers have started to go back up. This is concerning, and we’ll be watching those numbers closely. Keegan’s immunosuppression levels are still on the low side, as well as his magnesium levels. The catch-22 is that if we put him back on magnesium supplements, it could cause even more diarrhea. He’s already gone back up into the 7-8 range per day, so obviously, we don’t really want to do that. We will watch all these numbers closely. The only good news in his labs was that his blood counts are holding steady with the current medications he is on, which is lovely except that it means he still has to get 4 shots a week.
Other than all that, he is acting just like his normal, goofy self. He’s been especially goofy waking up from his naps this week. I’ve really had fun playing with him in his room during the “silly” times. He also had his first swim “lesson” with some friends from the neighborhood on Monday. I say “lesson” because it was just the moms and kids at my parents’ pool trying to get them to blow bubbles and hold their breath when dunked underwater. Hopefully, they’ll all get better by the end of the summer. Last night, we had an interesting bout of weather, and Keegan waited out his first tornado watch in the bathtub. Perhaps we overreacted a bit, but the weatherman was showing this thing go right over our house basically. Keegan, needless to say, was rather confused about being in the tub with his clothes on and pillows over his head. In the end, one fence and tree in the neighborhood are down, and a tree on the wooded property next to our house fell a little too close for comfort but didn’t appear to cause any damage.
Next week, Keegan has his breathing treatment on Monday, and I have a feeling we may be called into the GI’s office to discuss his liver and intestinal issues again. The only other appointment for the rest of the month is immunology on the 30th. We’re keeping our fingers crossed for no more than those! Thank you so much for your continued support and prayers. We are overwhelmed by the prayers and COTA donations that have sustained us through such a rough ride. It’s often said that having a child with chronic illness is a club that no one asked to join, but we have especially been blessed by the encouragement and strength of our brothers and sisters of this very special club. Still, it is our children that give us the most courage to get through each day. I am uplifted daily by the fact that Keegan has no idea that he is different from his friends or other children. He does not regret the “normal” things he has missed or agonize over places he cannot go and things he cannot do. What a treat to get kisses and laughs (and even tantrums) from my little fiery miracle! He makes every day in the club worthwhile and reminds me that it is through HIM, our Savior, that we welcome each obstacle with a smile. Christ didn’t die to end our suffering. He experienced it then and NOW with us in the promise that this life is not all for which we are destined. The Lord works miracles in many lives through the journeys of the children in our “special club”, and we could not be more thankful.