March in the Rain

The rains have come once again in the month of March. Almost exactly a year ago Maliyah was life-flighted over to Oahu and from there its been a roller coaster of insane proportions. The previous posts spell out our adventures and I’m not going to re-tell any of that.

So let me tell you about the miracle that is Maliyah and she… she is a handful. She’s strong willed, vocal, hyper, bossy, a bit dramatic and a few other traits that I find oddly familiar. On the flip side, she’s acquired some adorable traits from Linda, she’s empathetic, loves to laugh, extremely social, adventurous, curious, and most of all happy. She’s not very shy, and will spend hours in the park, playing with her friends.

With her diagnosis, we struggle with UTI’s about every other month. We still hook her up every night to IV nutrition with a vitamin infusion along with oral medications 3 times a day and a constant flow of Miralax. All that along with having a port hanging out of her chest makes beach time, water time and play time, stressful to say the least.

The balancing act seems to be working though, (besides the UTI) the Lord has blessed us 6 months without a hitch. The amazing part is that Monday was the first time she passed 25lbs. I know to many people it doesn’t seem like it is a big accomplishment, but every bite of food, every ounce of weight gain, every successful potty visit is truly something worth celebrating.

As she races around the house chasing the dog, or runs around the playground with her friends, we are often dumb founded she made it to this point.

I can’t tell you how precious life is until its almost snuffed out. Don’t forget to take advantage of every second.