Happy Birthday, Bo! We are so amazed and feel so blessed as we watch you growing and thriving. You weighed in at a fantastic 19.16lbs, 27 inches. You are wiggling, giggling and every part a one year old. We are so so so lucky.
To give credit where credit is due, this is mostly because Dr. Puder insisted that we get to Boston urgently for Omegaven (he was 3 months old when we started). I know of 2 other MID babies born within months of Bo who are not as lucky in their health as Bo. One probably got her Omegaven too late (@ 5, not 10, months of age) to compensate for permanent and extensive liver scarring damage, and the other never got Omegaven- her kidneys got fried from dehydration instead (and she is recovering from an 8-organ transplant and relisted for kidneys).
I can't help but think (and think, and think) that Bo could have been in either of those situations by now if it were not for a Miracle. Why, through Bo, Jose and I should be the ones to be lavished with such grace, we may only know after more of Bo's life unfolds.
And while we wait, we savor. We savor your joy and your accomplishments, your strong will (nap-fighter!), and your gentle nature. While your physical developmental milestones are behind (Puder and Gura were completely unfazed by this; meanwhile, we suspect that sitting you in a pile of toys everyday does nothing to encourage creeping or crawling- oops), we know that cognitively and emotionally you are exactly where your peers are (and even ahead), and we watch your physical progress with gratitude and amazement (after we remove that huge pile of toys).
And after all the angst and anger. After facing down the arrogance and skepticism. We remain stalwart. I'm not closing this post with the vitriol I once had, but with the compassion and clear-headedness that led us to Boston (thank you, Sam Jacob, for sending us that link when you did!), and my desire to share with all the other short gut mommas and poppas out there, that we rejoice with you on Bo's birthday, and each of your babies' milestones.
And when your attending GI tells you: that getting Omegaven is too much paperwork; that their hospital won't pay for it, you can't pay for it and they know your insurance won't commit to pay for it; that if they can't or won't get it that no other hospital in the state won't; that even though your baby's liver is responding in an unprecedentedly positive manner to Omegaven that they are not pursuing the application to the FDA; that you aren't allowed to switch service to any of the other four pediatric GI doctors... you do have the courage to find someone (even across the state) who will do the paperwork, you will find a doctor who is as amazed by your baby's recovery as you are, you can get your infusion company to partner with your hospital, you can find your way through the maze of procedures and applications for any and all Medicaid waivers available in your state (probably with the help of your hospital social worker), you will find a nursing agency to care for and love both your baby AND you, and you may even see the day where not one, but two other hospitals in your state have Omegaven for their most fragile patients.
cake pics to come
