In the meantime...

After making the decision to go forward with a bone marrow/stem cell transplant, we were just trying to get our feet on the ground. It took a while to learn what our "new normal" would be like for life from that point on.

Kal had started taking his medicines MUCH better, with the help of his new feeding (NG) tube. We were also giving him a night time feeding with a pump that would slowly feed him during the night. I had the option of whether I wanted to pump breastmilk and use that for the night feeding or to use formula. To be frank, I just couldn't handle sitting on the couch all day pumping. I couldn't. I was already trying to learn how to give him all his new medicines, dealing with an extra clingy 2 year old, and trying to pull the house together. I figured for reasons of my sanity (which honestly, affects everyone else's sanity in this household), and for the fact that he was receiving 5 nursing sessions during the day (every 3 hours), he'd do just fine to get formula in him at night. Don't even get started on the "breast is best," the "you'll do whatever is needed to give your baby the best, which is breast milk," or the "don't feed that chemical infused crap to your child" speal. I've already been through that guilt roller coaster when my first child flat out refused to nurse and stumped the lactation specialists. I'm done feeling bad for giving my child formula when I need/want to. Don't judge. And if you do, I'm too tired to care and listen to your judgements. #sorrynotsorry I'm trying my best, and as a mama, I feel I deserve an "A" for effort. (Phew- Okay, off my soap box, for now.)

Anyways, in addition to his new medicines he was prescribed, Kal's Immunologist started him on immune-boosting injections, for three times a week. Having the home health nurse come to teach us to do the injections was stressful, to say the least. No one wants to willingly stab their child with a needle, even if it is, according to the home health nurse, "the smallest injection needle you can get." Jonald did the first injection. He was nervous at first, but was so brave. A couple days later, when it was my turn, I was so nervous I could hardly do it. Kal hardly flinched, but after finishing the injection, I balled my eyes out. Was this how life was going to be from now on? The worry of the ominous serious infections in the future, a feeding tube, night time pump feedings, piles of medicines, and now injections? Reality poured down on me in that moment. I usually try to stay positive, but it was all so new to me, to us, and it was all coming at us so fast.

After that, our daughter had a blood test done to see if she could be a match for Kal for bone marrow transplant. I was so nervous. I don't remember a time before then that she had her blood drawn. I was so used to that happening for Kal, but for my hardly-gets-sick 2 year-old, it made me extremely nervous for this simple blood draw. I was imagining a mixture of wrestling her down with a whole lot of tears. I prayed earnestly that she would be able to take the blood draw experience well. In the lab, she sat on my lap. The lab technician prepped everything and once the needle went in- nothing. My child did not flinch. Not even once. Not a peep. Even more weird, she stared at the needle the whole time, and I can't do that. After that, she got a Cinderella sticker and proudly showed her band-aid off to me like it was a badge of honor, even though she didn't even know why she was getting a blood draw done. I was shocked that she was so calm about the whole thing! Those small miracles: tender mercies, my friends, are what carry me through. Yay MIRACLES!

Then, Kal started having crazy congestion issues. I would have to use saline drops and the bulb syringe (a.k.a. nose booger sucker thing) just about every time he needed to eat, because he was so congested that he couldn't breathe through his nose at all. It started affecting his sleep at night, and he would wake up for feedings again. The night he slept through the night again, I think was for a reason, because I needed the energy to handle the news I would receive the next day:

"Last night was amazing though! He slept through the whole night without a peep until 8:30 a.m.! Oh I so needed that! On the other hand, I think Heavenly Father knew I needed that good sleep to handle the news of today. The immunologist called with the lab results and said his disease is the X-linked version, which is the more serious version of his disease. In addition, unfortunately, my daughter isn't a match for bone marrow transplant. So I guess the real waiting game begins. It is a big disappointment, but I'm trying to remind myself to accept it as God's will."

So, the wait for an unrelated bone marrow donor began. The doctors were concerned it may take a little longer for them to find a match for Kal because he is of mixed races, Caucasian and Filipino. DNA plays a huge factor in matching for bone marrow transplants, and mixing the races dramatically reduces the possibility of having a donor who shares similar mixed races, with similar DNA.

Then, in the beginning of June, we received interesting news:

"I talked to the nurse in the bone marrow clinic a couple days ago to get an update. She said she was surprised to find when she was researching for Kal in the bone marrow registry that there are a couple people that may be a match for him. She has sent lab orders to see how good of a match they really are, and if they're interested still in donating. That whole process is about 2 months, minimum. So, it's a good sign but also reality coming back, so kinda scary to think it might happen sooner than I mentally prepared myself for, haha."

The nurse also pointed out that although she couldn't tell the future (darn it!), she suggested that if we had plans on going anywhere during the summer, to go now, just in case the results came back saying there was a willing donor and close match for transplant. She said to be safe, to not leave past mid-July, so we started talking about possible places to visit and "party" before Kal's possible transplant. MIRACLES!

Again, it was back to a waiting game. In the mean time, Kal's congestion had worsened and turned into an ear infection in one ear, with the ear drum ruptured, as well as bronchiolitis. We were also dealing with almost constant flare ups of yeast diaper rashes. 

The doctors were concerned that his congestion for the past 4 weeks or so and now his new symptoms were caused by his NG (feeding) tube harboring bacteria. We went to the gastroenterologist to have it changed out, but upon examining Kal, the doctor said, "Hey, what do you say we take a chance and see how he does without this tube? Let's just give him and his nose a break, and see if he can still take his medicine well. He looks pretty healthy to me! He looks a little chunky now."

That was probably one of the most unexpected yet best news we had heard in a while. More MIRACLES! All we could say in response was, "Uh, sure!" So, the GI doctor cut him loose from his NG tube and took it out. Both my husband and I, upon seeing the tube covered with thick mucous while it was coming out, squinted our faces in disgust. No wonder our poor baby was having a hard time with congestion! 

"Someone is happy! Guess what's missing? He's free (for now)! GI doctor cut him loose today and said to give it a try without his feeding tube for a little bit and see how he handles taking his medicines! Woohoo! #Herestohoping #primarychildrens #soblessed #prayingstill"

Around 2 days later, his congestion had almost disappeared. It was amazing! Also, although he wasn't too excited about his medicine, he started taking his oral medicine well. All other symptoms subsided, Kal was acting MUCH happier, and it almost seemed like we had a "normal"(ish) baby again. It was such a relief, yet felt so weird to have things finally settle down. Ahh, MIRACLES.