It's so quiet in the middle of the night but I should be sleeping....

Woohoo! It's Fall, a close second favorite to the non-'burn the hair on your toes, it's that hot' days of summer! Momma is happy...and a happy momma means less grumbly comments under her breath and more smiles, less "find something in the fridge yourself to eat because I had a bowl of cereal and you're a big boy" and more crock pot cooking, less laundry on the kitchen table and more festive decorations, and (probably John's favorite) less "knock off your damn snoring or I'll shove your face in a pillow" and more, well, ok that hasn't change too much!

September was here...I think?! It's still been great to be home! Bruce is really growing and his body is healing from this oh-so-crazy summer. Yesterday, he had a MRI and it showed the brain abscess is regressing (great news!) but there is some concerning swelling the neurosurgeon is going to keep an eye on (eh) but the vp shunt is working great! Infectious Diseases has ordered another month of his super strong antibiotics (eh) so the feeding tube is staying put til those are finished but he has been eating fairly well lately! We started some cereal last night and that has been a hit so far. GI gave the go-ahead to start solids but he's to remain on the Nutramigen AA and off breastmilk.

Bruce's seizures started acting up again a couple weeks ago and the neurologist placed him on some stronger anti-seizure meds. When the kid started tapping his left leg and left arm and keeping time, I knew something was up because his father and I have no rhythmm, whatsoever. None. Nadda. But, the meds have helped and we haven't seen any new activity since, except for what we thought were seizures the other night. All of the medications Bruce is on are wicked strong and keep his belly upset, hence the feeding tube. Which really is the handiest tool for giving meds when he's sleeping......no fights. Yet, a catch-22.

But these latest 'seizures' are in fact, not. They are episodes consistent with Sandifer's Syndrome which is when the baby is rolling his head and moving his arms repeatedly in attempt to open his esophagus to let the acid out. I called back down the hospital earlier this week and the neurologist said this was reflux activity and to call GI. Luckily, we had an appointment already after the MRI. I was describing the episodes to the GI doc and he started to go off on an intelligent spill about an Englishman named Sandifer and I kinda burst his bubble when I said I found it on the internet the night before....Momma's head got a little inflated for playing doctor but quickly deflated when he said I had to give Bruce a pill twice a day. Yep, to a 4 month old. Chuckle, chuckle, funny man. But, I will say your joke about Bruce's 'Howitzer' antibiotics compared to normal 'pea-shooter' antibiotics was funny...

There are other ways of giving Prevacid but this is the best way to get the medication through the stomach and into the intestines where it needs to be. Bruce doesn't think so and every time I place the little dissolving chunks on his tongue, I go through the CPR steps in my head. I think I get a new gray hair each time! He's been on the suspended version from the pharmacy for a month or so now and it's not working. Babies typically grow out of reflux and it's something we will have to watch, not that we weren't already. When I found the info online on Sandifer's Syndrome the night before the GI appointment, the article mentioned how rare it was for babies to have this. Less than 1% of reflux babies ever show the symptoms but when the article said 'rare', I knew he had it. This kid does rare to a perfection!

Bruce is over 14 lbs and topped 25 inches a couple days ago! Long and skinny, not surprised. His daddy used to be that way....sorry, love, just checking to see if you're reading or not :) Each day I go to get him out of his crib and I see a change in his face. It's amazing how quickly they grow! We have reached the stage of blowouts, though. It's like a light bulb has gone off in his cute little baby head that says, if I lay like this and I grunt like this, I will make it go up my back like this! And to see momma's face is fun! Yay! And I'll wait til when daddy's not home! And I'll do it only when I'm sitting on momma's lap!
Ok, it probably doesn't play out like that in his head but it sure seems like it!

We've been able to get out and enjoy the nice weather some lately. We started what hopefully becomes a new fall tradition of apple picking with great grandma and great grandpa!

I think here is grandpa telling Bruce momma better be careful putting the full bag of apples on the stroller like that....

Because not 10 minutes later I nearly toppled the whole rig, baby and all...

Bruce telling daddy the tale of momma's scary stroller driving later that day...

Still acceptable now, but if this is the case in 30 years, we have to talk, son.

Letting it all hang out during an infusion...notice 'I don't care if you take this picture now but it better not be on the internet later' look on his face....

Learning to smack his tongue like silly momma...you're getting there! Kind of...

Bruce's first visit to the neighbor's dairy when they were chopping silage that day! (More ranch pictures to come in the following posts for those of you who care....we don't just talk baby poop and breastmilk here!

A relaxing day at home with mom sticking her camera in my face...again...

And finally, 'ok, I will smile once more if you would kindly remove yourself so I can watch Monday Night Football....'

And there you have it so far, folks! Later today (because it is after 2 am and OH. SO. PEACEFUL), Bruce and I are heading to the Amish shops at Jamesport, MO with some of the lovely ladies in my family for our annual kickoff to the fall season! Daddy has requested that we bring back some baked goodies and a box of gate handles from the farm store down the road...he seriously knows where to find the good deals when it comes to farm supplies...I know this because I have driven all across the countryside for him...and I love it! Still checking to see if you're reading :)

Happy Fall, y'all!!

GOD BLESS!!

And now a word from Waylon Jennings...

"So wherever we're going, Lord, it's good to be at home..."

Home. Last Thursday Bruce was discharged at 12:05 pm. Within 10 minutes of signing on the line, we were loaded down like the Clampetts, complete with baby and six weeks of living supplies from our stay at the Ronald McDonald house, and headin' north with the hammer down, breaker-breaker rubber ducky, 10-4 good buddy, we got us a convoy, mashin' down through Wolf Creek Pass -- all of it. We made a quick stop at my mamacitas long enough for her to pack us moreso with her home cooking and tell her grandson to get his butt home, and to stay there. 20 minutes later, I made the realization that we completely bypassed the CMH inpatient pharmacy and forgot to pick up Bruce's EIGHT prescriptions.

And so, at the Holt/Lathrop exit on 1-35, we made a u-turn and headed back for the drugs.

In honor of his round the clock drug regiment, I would now like to inflict upon you the song that has been stuck in my head since Thursday night...(lyrics have been changed):: One, two, three o'clock, four o'clock, MEDS! Five, six, seven o'clock, eight o'clock, MEDS! Nine, ten, eleven o'clock, twelve o'clock, MEDS! We're gonna medicate Bruce around the clock tonight!                           You are welcome!! :)

Sleep isn't in my repertoire anymore and it's fine by me! Sooner (before later) it will catch up and I probably ought to be lying peacefully in my bed now but sitting here and watching Bruce make the funniest facial expressions while he dreams and listening to his daddy saw logs with a team of professional wood grinding beavers, is my slumber. Home. I can't say it enough!

So far in the last few days I have spent some amazing time with friends and family, eaten the best t-bone ever smoked and mamacita's best-ever banana bread, napped a ridiculous amount of times with my baby next to me, re-inserted the feeding tube in his nose because it wasn't in the right place, added 'maternal apothacarist' to my resume, cleaned and organized for hours without ever making a dent in the mess and mastered the moby wrap while wearing a robe. Yes, it can be done.

This weekend has been the best of my life, ever. I fall more and more in love with Bruce everyday and I enjoy learning and seeing who he is becoming, outside of a hospital crib. He's been doing fantastic. The feedings are going better but we do still have the ng tube in and will for a while and most of the medications should end in a few weeks.

We leave for KC in the morning for his next enzyme replacement therapy and a slew of appointments on Wednesday: Cardiology, Neurosurgery follow-up, Infectious Diseases and the Special Care Clinic. I feel like an anxious ex-con getting ready for a parole hearing, afraid of getting locked up again. Which is probably just the exhaustion setting in because I know Bruce is going to do JUST FINE with his appointments and we'll be home before I know it, back to my robe and snuggling with my son while he sleeps and I watch all the trashy Lifetime and TLC shows...He really is making progress and growing a belly like his daddy's! (But it's a cute belly, John! :)

It's great to see everything so green in northern Missouri! You can laugh all you want that this town has more digits in it's zip code than actual residents but I wouldn't trade it for anywhere. Someday, the beach but that's years down the road...we've got a family and cows to raise first!!

GOD BLESS!!!!