Half Birthdays

taking a nap in the sunshine

Friday, my baby turned half a year old. It's not fair. I feel like he shouldn't be allowed to age so quickly, especially since I haven't gotten to even take him home yet! I feel like most of the stuff we got for Oakley won't ever be used, and that makes me so sad; but not for Oakley, for me.

I am bummed I don't have newborn pictures of him. I'm sad that he won't fit into his bassinet and even if he does, he'd tear it apart.  I'm so happy we went with a convertible car seat, because he would be too long for an infant seat soon, and we still don't know when he'll ever get to go on a car ride (ambulances don't really count).

Thursday, I cried for the first time in a while. (That's not true, I cry all the time; but this was in front of someone, so it was different) The doctors put Oakley back on his zenpep (his pancreatic enzyme) because the tests came back and his exocrine function is not as good as they thought it was a few weeks ago. The old argument of apple sauce came up. Now I am aware that this is a stupid fight to have. Obviously, I should let them give him his zenpep in applesauce, however, food means so much to me. It is the one thing I think should bond a mother and child, and I feel like I was gyped in that area when he was born. I really don't want food to be a part of any medical procedure. I really want that to be something special, and even though we've let him taste our food every now and again, I don't want applesauce to be in the equation.

The doctor told me she didn't want him swallowing the capsule whole, because she was afraid he might choke, and doesn't want anything to postpone his transplant. She didn't want to give it with his meds, because she doesn't want him to spit up his meds with the beads, and she didn't really give a reason I can remember as to why she doesn't want to just chase the beads with water.
I reiterated my feelings about giving him applesauce as a part of a medical procedure, and I got pretty choked up. I told her that this was my one shot. I only get one baby because I'm a carrier for a deadly disease, and I wouldn't want to pass that on to another person. I said that I felt like I had been robbed of so many things already, and I didn't want this to be taken away from me too. It caught the doctor off guard, and she dropped the applesauce request and conceded to chasing it with cherry syrup (A real-live cherry chaser Miranda!). She didn't want to give it with his regular meds, because she didn't want him to spit his meds out, and she didn't think water was going to help get the beads down without causing a choking hazard, so here we are.

I should treasure it though, because she told me that once chemo starts, they don't want Oakley to receive breastmilk at all. I've had CMV, and so has Oakley, but they fear that it will introduce it to his nonexistant immune system if we nurse. After today, it could be months before we get to nurse again.

We had our review on Thursday afternoon, and Oakley's donor is a 23 year old male from Europe. We are doing a 5 day course, and are in a medical study. It's a medium-high regimen, so there is some worry that Oakley's tiny body won't be able to tolerate it. The doctor actually expressed concern that he might die; which surprised Trevor and I. We have had so much hope and have been looking further into the future (since all we really focus on is that he will be cured with the bone marrow transplant) that we kind of forgot about the risks of getting there. I haven't been this scared in months.

Oakley's tree is losing it's leaves in
preparation for Oakley to lose his hair

We are going to enjoy today as a family; looking out the window at Oakley's balding tree, as we prepare for Oakley to lose his hair. Enjoying the changing season, as we brace ourselves for the changes we are about to encounter.

We'll try to keep this up to date, but try to understand if it gets pushed to the side from time to time.

In the meantime, thank you for keeping us in your thoughts and prayers. We appreciate all the love, support, and generosity we have received.

Love,

Trevor, Samanatha, and Oakley