A Good Laugh!

Someone loves having fun. Sadly, I still have to finish the taxes this weekend, and start down the road to getting Bo's medicaid renewed; which requires a lot of administrative back and forth.

For the blissfully ignorant, Medicaid is usually awarded based on strict income levels, or for the medically needy. The latter case is very rarely approved. But, as we know, Bo is a rare kind of case. So we will petition for that medically needy case. We need the approval to continue our private duty nursing (PDN) beyond August; this is covered by Medicaid, and not Michigan Children's Special Health Care (MCSHC) or our primary insurance, Blue Cross Blue Shield. Although he will most likely get approved for renewal of his secondary insurance from MCSHC, that is entirely separate from Medicaid as far as the PDN is concerned.

No Pants!

Life is not worth living unless you can post a picture of a baby without pants.

It's finally sunny enough for Bo to wear his Frubis, and warm enough to trek around in the Bjorn (which he loves).

He weighed in at 16 and a quarter pounds today! Finally beating Nurse Kathy's scale and tipping well past 16lbs. Plus, we've had two, or maybe even three, nights in a row with peaceful gag-free sleep. And he has been eating without throwing up. I really think we've turned a corner, and am desperately hoping the nephrologist has a sneaky trick up her sleeve to help lower his currently elevated level of Aluminum (the putative source of all the kidney stones and the potential source of calcium deficiency).

And not to get all God-squad on the www, but I had to mention it because it struck me as both funny and providential, but my pastor casually asked if we had godparents picked out for Bo, and when I told him the godfather was Brian, he shrieked, "I know Brian!" I was like, "no, you did not just shriek in church." Well, yes he did. Turns out this is the pastor that Brian grew up with. And then, on top of that, he knows the family of the godmother because her mom is very active in the student parish at MSU (mine is the student parish here in Kzoo). Our plan is to baptize Bo this summer. Jose remains religously ambiguous, but fully supportive of me.

Shut the F*ck Up, and Be Cool

I have to tell myself that every once in a while. This is now my new motto, even if I just have to say it to myself occassionally. The quote comes from our punk rock buddy who was describing a situation with his recently broken-up with girlfriend, where he was late to meet her. But I digress.

We spent the afternoon in the ER to see about repairing Bo's Broviac. There was a tear in it. Turns out that only the outer sheath was torn. We will probably do the repair ourselves. The surgeon was like, "if it ain't broke, don' fix it." That's cool. I was almost going to start whining about wasting three hours waiting in a cramped ER exam room. Then I remembered my new motto, and I'm glad to say that no news is good news, that Bo hasn't gagged or vomitted all day or all night (so far), and that I starting to see that we all have our own way of sporting a "Central Line." Someone might have mental illness that doesn't show a physical frailty, someone might have an emotional frailty. Maybe there is a severe asthmatic. We all have our wounds, and we all have our need for special nourishment. My hope is that Bo's is only skin deep, and that we can protect that for as long as he needs us to.

Happy 10 Month Birthday!

Bo's back up to the weight he was before that last stone, and finally, for the first time since, hasn't been so nauseated that he's woken up in the middle of the night. So he slept soundly through the night, through a diaper change, and everything. I'm hoping that this is the turning point where he starts eating and keeping things down. He gets along with Miss Colleen, and so do Jose and I. Sunday, we train/interview Miss Judy.

Bringing Back the Appetite

This picture was taken before he passed his last stone. While his appetite is coming back, his ability to keep anything down has not. So, while this photo wrongly implies that Bo is eating, I had to post it, because, who doesn't want to see a kid covered in yogurt?

Today is day 2 of nursing support!

He Fought the Nap, and the Nap Won (this time)

Gratuitous cute bear-hat photo. The hat is soon to be retired, as it is being transformed into a skull cap. So, the good news is the delayed post is due to my illness and not Bo's. I had a raging fever and was half dead all weekend (lucky me), and am finally feeling human late this Monday afternoon.

More good news, we think the nephrologist's theory is right. She said she had seen a small handful of babies on TPN with kidney stones, and it was because the Aluminium (Al) was too high. So when we were in to see her last Wednesday, they drew a huge volume of blood to test for his Al level and viola. The norm is 0-6, his level was 52! Just shy of the cut-off lower limit that requires dialysis. Yikes. Apparently this is one of the few non-regulated components in the bag. So hopefully the pharmacist will be able to find a way to compound his bag with less Al.

Other than that, he fought the nap, and, indeed, the nap won. Well, at least this morning. The afternoon nap was another story. Early bed time tonight, buddy!

Not So Fast!

The PDN is funded from Medicaid, which we only have until August 1st. I'm not sure how or if we can extend our Medicaid. Once that goes away, so too does the PDN. Sigh.

And, Bo had a rough night, nauseated and finally vomiting the spinach and potato dinner he had. Although, he did wake up very cheerfully. What an optimistic fellow!