I think I almost forgot I have a blog… Just kidding. But seriously I haven’t given any medical updates since around the time of Beckham’s cath last year in October. We are usually on a six month cath schedule and for the first time in a few years we finally get to go a little longer. We are looking at scheduling a cath in October of this year, which would put us at a whole year in between visits!
As the title of this post suggests, no news is generally good news. Beckham has been on his new medication for almost two months now and will be starting a second one in the next few weeks (insurance did approve it but we are having trouble finding a pharmacy that will fill it according to the dosage and directions required). Otherwise he is continuing to grow and make progress in so many wonderful ways. I’m pretty sure he’s completely “caught up” on his speech as he repeats everything we say and talks all day long. We really have to watch what we say around him now because he will repeat it! He also calls me “Mandie” and “Honey” almost as often as he calls me Mommy haha. He’s running all over the place and getting braver at the parks again. Beckham always tends to play on the cautious side but is getting better at trying new things and loves going high on the swings. We had an occupational therapy evaluation last week to see if he is behind on anything we are not aware of, and it was exciting to get a great score back. An average score is 8 and Beckham scored a 7. The therapist gave us some great ideas of things we can work on from home, but we both agreed we don’t need to travel to and attend OT in the clinic since he is making such great progress at home. Beckham recently started his second round of weekly group feeding therapy and he absolutely loves it. More than anything he enjoys the social aspect and is always asking when feeding therapy is so he can “go eat with friends”. He’s actually made monumental progress over the last two – three weeks and I couldn’t be prouder. Beckham loves oatmeal with peanut butter, pop tart crisps, mac-n-cheese, french fries, almost all fruit and anything crunchy. He’s recently started doing great with proteins like chicken and chicken nuggets, fish, hot dogs, black beans, chickpeas, brocolli, green beans, rice and even gummy fruit snacks which is a texture he wouldn’t even try before. It’s truly amazing to be able to order food for him when we go out to eat and makes mealtime so much more fun. Don’t get me wrong, we are still constantly encouraging him to take bites and try new things. But it is no longer such an uphill battle. He’s shown us what he is capable of and we are giving him positive encouragement to continue making progress.
So our current plan is to continue living and enjoying life at home. I do not take that gift for granted ever. And even on hard days where I’m tired of being a human jungle gym and crave adult interaction, I try and remind myself how lucky I am to have two amazing little boys and embrace this Mom life. I know far too many who are not so lucky and are living life in the hospital with their baby hooked up to machines and wires. I know exactly what that is like. Or worse, the bereaved Heart Mama’s whose little ones are watching over us all from above. Something that I worry about every day while also trying not to let that fear interfere with enjoying the here and now. So I try my best not to take advantage of any moment or any day.
In three and a half weeks my baby turns one and just three weeks after that Beckham will turn three. It’s emotional knowing that my next blog post will likely be Hendrix’s one year post. The days are long but the years are far too short. I’m so very grateful for my boys and our little family.
Xoxo,
Heart Mama
Mama of a Heart Warrior 