The common theme in life with Beckham is that everything is always done in his own time. It was that way with coming off 24/7 oxygen support (which he was on over a year despite most of his doctors saying he shouldn’t have still needed it), it’s been that way with all of his surgeries and recoveries. Every milestone he’s hit has been when he’s ready, despite how hard I’ve tried and pushed for milestones in the past. I guess my obsession with needing to be in control needed to be challenged or something!
The first time Beckham ever pulled himself up to a standing position all on his own was on 9/7/18. He was 17 months old and after months and months of building back up his strength, plenty of physical therapy, and a lot of encouragement from mom and dad, Beckham was finally able to pull himself up to stand. From there he began cruising along furniture pretty cautiously. It took another four months before Beckham took his very first step by himself. On 1/21/19 he took two single steps, catching himself on the couch or in our arms. These tiny steps were exciting but it took a few more weeks before he had the confidence to give walking an honest try.
On Friday, February 8th, Beckham actually started walking! Mykel and I were together at one of his doctors appointments and while we were waiting, we encouraged him to walk back and forth across the room to one another. Beckham has “played this game” many times before, but never without holding tight onto one of our hands. After about 10 times back and forth he finally realized he could do it all by himself! Beckham went from taking 1-2 single steps, to 4 steps, to 6 steps, to walking the entire hallway of the medical building! We stuck around for another 20+ minutes walking everywhere possible and screaming with excitement. All of this happened in a span of 5-10 minutes and he’s been walking more and more every day ever since.
This is such a huge milestone for him. Mykel and I are insanely proud and we were both emotional as we drove home that day. Beckham passed out in his car seat pretty quickly after all that work and physical exercise. While he was sleeping peacefully in the back, Mykel and I were able to recognize all that we’ve each been through and how far our little warrior has come. We shared tears of happiness thinking about all that Beckham has been through. But he doesn’t ever let that stop him. He’s just a few months shy of two years old, and is finally walking. Something we’ve been wanting and working hard towards for a very long time. Not only is he walking and taking his first steps, but he’s starting to walk all over the place like he’s been doing it forever. As of today, he can now stand up from a sitting position without any help! He’s gained the strength to squat down and pick something up without just falling on his bum like he used to. He can climb on and off the couch and is challenging himself daily.
In addition to these physical achievements, Beckham has continued to make progress with his oral eating. As I’ve shared previously we started an intensive feeding therapy program that was 5 days/week for 6 weeks. Unfortunately two weeks into the program, our insurance decided to deny paying for feeding and occupational therapy through the Phoenix Children’s Hospital program. They claim that we should switch these services to the state and have someone from the department of disabilities come into our home instead. Our feeding team is trying to fight this still (it’s now been a few weeks since we had to stop going), and it’s been incredibly frustrating. For insurance to deny and stop these services to a child who is making such huge progress is ridiculous. Especially when what they are trying to get us to do instead is nowhere near the same thing.
I don’t want this road block to put a stop to Beckham’s progression, so we’ve been working our butts off at home. I’ve taken all the tools we’ve been given so far and have been working with him every day. We have also continued to see our GI feeding program director and dietician weekly (these are considered regular doctor appts so insurance can’t deny them). Each week we’ve been decreasing the amount of tube feeds that Beckham gets, while increasing the amount of food he takes orally. We are also keeping a close eye on his weight to make sure he doesn’t lose too much. Thankfully he’s actually gained weight two weeks in a row! (His weight gain has only been a small amount of ounces, but gains are far better than loses in weight, especially for a heart kiddo.) The biggest thing that’s made this possible has been his acceptance of Pediasure supplemental drinks. As long as Beckham can drink 2-3 of those a day he will receive the necessary amount of calories and nutrition, while allowing him to build his skills and tolerance to table foods.
I don’t want to jinx anything, but as of Friday we have officially stopped ALL tube feeds! This is a crazy concept for us since Beckham has been 100% tube fed for over a year now. It’s a little harder and scarier to let go of tube feeds than I would have ever expected. He still receives his medications and some additional water via tube, but that’s it! We go back in next week for another weight check and to make sure he is continuing to drink and eat enough calories. But as usual, Beckham has gained the reputation of being a rockstar! That’s literally what his dietician said last week. Even without being in the actual IFT daily program he is showing everyone what he’s made of. And it’s all been in his own time. 6 months ago he would not have been ready for this. Despite how hard we all wanted it and our once a week feeding therapy appointments, Beckham decided when he was ready to take that leap. And we are so proud of him for it.
Next week we head back to Stanford for another cardiac cath. This cath will provide the most up to date information on how Beckham’s heart, pulmonary arteries and lungs are doing. We will find out if his last cath in November made any long term differences, or if things are getting worse. We already have a good idea based off his echos and know that another surgery is imminent. But we are praying that caths, artery ballooning, and whatever else they can do will allow us to safely put surgery off as long as possible.
Overall, 2019 has started off to be a pretty dang good year for our family. I know we have some major challenges ahead of us, but I’m grateful for these positive experiences and the progression that we are making right now. I’m now 31 weeks along with baby #2, which means we will be holding this little peanut in our arms in just 8 short weeks! A few weeks after that our baby turned toddler will be turning 2! And Mykel will have successfully completed (and dominated) his first year of medical school! April is going to be absolutely insane and just thinking about everything at once gives me anxiety. But I have a feeling once we get to meet this new little one, and once I can kiss his sweet chubby newborn hands, feet and cheeks, that everything will work out.
So here’s to 2019. Starting off strong. Accepting the craziness. And praying that another open heart surgery can safely be pushed back as long as possible.