End of Week 3...

Yesterday, on the 10th, Bruce turned 3 weeks old! To celebrate the Children's Mercy guest server decided to crash and I somehow managed to wipe everything off my computer...it's my work laptop and fortunately all my files were unorganized enough I really didn't mind. But I did lose some of my red dirt music therapy and that's a little depressing...

We've been at CMH for 20 days and for some reason it seems a lot longer...I feel 62, not 26, and I'm starting to look a little rough around the edges. John and Bruce look as handsome as ever. Jerks. There have been rumors of possible discharge for us this coming week but really it depends on cardiology and what they decide. Bruce's heart rate has a tendency to be on the higher side for his heart condition and the docs really want to send us home with the correct beta blocker dosage. I really don't mind because the 5 minute lesson with the stethoscope on what to listen for didn't set in with me and I need more practice...

On the genetics side, our next enzyme treatment is scheduled for Tuesday the 14th and we're looking forward to that! He responded really well clinically to the last one so that was a relief but we will still have to be observant with each and every one. The treatment is FDA approved but it's still pretty new...especially for a 3 week old. The skin biopsy test that will let us know if we can continue with the treatments or not is still several weeks out but luckily we get to continue in the meantime.

On the weekends (when John isn't here, of course), Bruce enjoys having odd bowel functions that mystify the doctors, scare momma, and smell. Last weekend, some ugly diapers resulted in him being taken off feed completely, a few abdominal x-rays, several consults with surgeons, isolation contact which meant mom had to wear gloves and a gown and felt like she was holding baby E.T., and a team of doctors telling us they really had no idea what was going on. Today, he had copious amounts of yellow spit up, another abdominal x-ray that showed a very gassy little boy who had a very gross diaper and more are on the way...I hate to admit it, but Bruce got his father's hairline and his mother's bowels. Not our best features!

John has been able to make it north a few times the last couple weeks to get some hay baled and wrapped...which is a good thing because he was starting to pace the room like a caged tiger and I wasn't sure who was going to get attacked first...ok, it wasn't that bad but he did need to get out and get some sunshine because his farmer's tan was starting to disappear! Thanks to a lot of neighbors up north and one very talented and mechanically-inclined cousin of mine, the ranch is holding up and doing fine!

Tonight, this momma needs out. My mamacita has graciously come to break me out of the joint a couple times for a Target run and some quality brother/sister time at Crown Center, but tonight I need some Stoney LaRue music to chase away some of the 'hospital/my baby scares me with every move he makes/I'm tired of the cafeteria food' blues...John's heading back from the ranch now and we're heading out and leaving Bruce with round the clock nursing care who just happen to be the best baby-sitters in the KC metro area!

Also, a huge thanks to great grandma and grandma & grandpa from the north country for taking us out the other night to the best BBQ joint in Kansas City! I'd share the name with you but the line was long enough and until we're out of KC, we're going back as much as we can! :)

On a side note, I've been listening to Bruce lay in his crib while typing this up and I'm pretty sure his bowels are feeling much better....ah, nothing like motherhood to let all the juicy details out!

THANKS AGAIN to EVERYONE who has called, emailed, posted, texted, pigeon mailed, commented, snail mailed, telegraphed their words of encouragement and prayers and well wishes!!! You have no idea how WONDERFUL they have been. You really don't understand how much they mean until you find yourself in a position like this and I guarantee if any one of you EVER need a shoulder, words, advice, or just someone to listen, I WILL BE THERE!!!

Sarah


(I have pictures to post but my crashed computer says no....)