What Grayson has to say

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Creepin' Crud creeps on

In a surprise upset, Tony is still on the edge of health, but Grayson has become the silver medal finisher in the race ftowards brochitis. This means that Amy and Grayson have medicine and will be feeling better soon. And Tony has no medicine. And will probably slide slowly into illness, never noticing how bad he is getting, and end up far worse for wear.
Some days it just doesn't pay to be Tony.

Creepin' Crud

It's been awhile and I probably should post something about how much fun Grayson's first Christmas was or how happy we are that he got a good bill of health at the gastroenterologist's office a couple of weeks ago, but I'm not going to. Why not? Because right now I'm sick and it's much more fun to whine about being sick. Actually, I'm feeling better today. I did the smart thing and went to see Dr. Galanes on Wednesday (she's so great!). So, instead of being the third person at the office with pneumonia I'm hoping to halt it at a sinus infection and tracheitis. So far Grayson seems to be hanging in there, but Tony might on the edge. I promise, there will be more cute pictures soon!

i can wearz food?

At the top, we have the lovely prune beard and at the bottom banana beard. I have yet to document apple beard, pear beard, oatmeal beard, sweet potato beard and carrot beard.

Currently Grayson would much prefer to eat pork (sausage links and steamed dumplings in particular), but as his tooth still isn't quite in, he will just have to be patient and bearded.

Hello Snow

Introducing Arctic Explorer Grayson! Made in a limited edition of 1, he is ready to brave the coldest temperatures of the far north. Or at least the front yard. For about 10 minutes.

Hello Santa

Goodbye Kitty Colfax

Colfax passed away yesterday morning. This wasn't unexpected, but we will all miss her a lot. I had suspected that she had a brain tumor early in October and she had been blind for about a month. Tony and I were getting used to being seeing eye people for her, but felt bad when a paw would occasionally end up under one of our feet. We were in Indianapolis visiting Grayson's specialists on Thursday and when came home Colfax was repeatedly seeking out corners and then becoming stuck in them. She had the first seizure about 10:00 that night. I took her to work with me yesterday morning and placed a catheter so that I could give diazepam to calm the seizures. She passed away in between seizures without ever regaining normal consciousness. The tumor was underneath the left side of her cerebrum. It's amazing that through the whole process she became more social and more gentle. The house is much quieter without her.

Thanksgiving

Happy Thanksgiving! We hope that your meal is tastier than rice cereal!

Tube is out for good (we hope)

We have been hopping lately and haven't had a ton of time to catch up, but there has been a lot of good, a little bad and some rare but serious ugly the past month or so. We started weaning Grasyon off of his tube after his Halloween visit with Dr. Escobar (what a great treat!). The trick was that as he spent more time off of the pump, the flow rate had to be higher while he was on it and this lead to vomiting whenever his position changed. So, there was spit up or vomit after the first diaper change of the morning, spit up or vomit after swinging or sitting in the high chair for a while and spit up or vomit around bed time. It was very frustrating when Grayson vomited just after a nice bath. However, when the pump wasn't going Grayson discovered hunger and that hunger can be alleviated by eating! So now he really does like to eat!

On the 9th of November, Grayson pulled out his tube again, which created the ugly. The ER staff knows him on sight now and fortunately he pulled it out at daycare about 12:30 so I was able to get him in during the day. Replacing the tube only took 3 hours instead of the usual 6. For the first time, Grayson got a bloody nose as the tube was being replaced (this is part of why I don't put it back in myself). It had stopped by the time I traded off with Tony, but when I got home that night the little guy looked like he'd been in a prize fight. Blood under the tegaderm, blood on his eyelids, blood on his jacket, blood on Tony's shirt. Grayson had rubbed his face on Tony's shoulder as he often does when he's sleepy and the nose bleed had started again. He felt fine, but I couldn't stand looking at my baby with blood on his face. Any mother-toughness I had managed to cultivate was gone until we had changed the tape and cleaned his face. So, that's the ugly.

Last Wednesday the tube came out again. Dr. Escobar had given the OK to try 24 hours off of the pump the day before, so we decided to leave the tube out overnight and see what would happen. My part of this decision was largely influenced by the nose-bleed the week before. Grayson chugged! He didn't necessarily take a lot at one time, but he wanted to eat. So far the tube has been out for almost a week. I'm a bit worried that he might be losing weight and I don't know if we'll be able to leave the tube out, but he's been a pretty happy baby this past week. He's been sleeping without snoring, he's still had some vomiting but he eats right after, and he's having a great time practicing standing up so I'm really hoping that the tube can stay out.

Fire in the sky

I just wanted to share last night's sunset. We're not having fires here in Indiana, but you might have thought so.

Friday night excitement

Last night as I was getting ready to leave work I followed my normal routine and called home to let Tony know I was on my way. Grayson had been having a lot of cranky afternoons, so I like to let Tony know that the cavalry's on the way. HIs response,"You might as well meet us at the emergency room, Grayson's pulled his tube out." We've been through the ER tube replacement routine before, so I stopped for Taco Bell and drinks on my way. Grayson was a very happy tubeless boy when I arrived and a very unhappy boy with a brand new nasogastric tube when we all left 5 hours later. However, he has suddenly decided that a bottle may be a worthwhile source of nutrition after all. Maybe it was experiencing a stomach that was truly empty, maybe having the tube end in the stomach rather than passung through to the jejunum is an appetite stimulant, all I know is thst for the first time weeks he's had real interest in getting nourishment from something besides his tube. I'm going to offer another bottle in a bit and see how he does.

Going to Jail

Next Tuesday I'm being Locked Up for Good for our local Muscular Dystrophy Association. Grayson doesn't have muscular dystrophy, but it seemed like a good opportunity to give a little back since we're lucky enough to have him home and doing well - almost up to 12 pounds now! If anyone would like to help me raise bail I'd appreciate it.


No worries if you're not interested, just thought that I'd put it out there.

Bonding with Colfax

A boy and his cat, bonding.

The Journey Home

Today's adventure (sorry about the rotated pictures, it's late, we started early and my skilz are not mad) :

Leaving the hospital!

Not terribly thrilled about the car ride

Ahh, my swing.

We are all happy to be home!


No more hospital beds for Grayson.

Grayson is happy that he might be coming home this weekend. We are too!

New Hope

Grayson has been at St. Vincent's (now Peyton Manning's Children's Hospital at St. Vincent) for about two weeks now. He's been prodded and poked, scanned inside and out and had tubes and cameras shoved though every orafice. We've traveled down the roads of fear, panic, relief, hope, dashed hopes and frustration. But something has finally come back that all doctors involved agree is probably a big part of the problem.

A stomach biopsy came back showing elevated levels of some long complicated science-y word that point towards allergic reations occuring in is GI tract. So they are switching his formula (going directly into his intenstine via nasal tube) to a hypo-allergenic variety. They will check again in a few days to see if that makes a positive change.

He will likely still have to do a few weeks of therapy to help overcome his eating issues. He's spent so long associating eating with discomfort that he'll need help getting past that into some normal feeding behaviors. But they have a program that will come to our house for that.

He is looking very good -- up to 9lbs. 5oz., good color and wide, alert eyes, occasional smiles. There is a chance we could take him home this week (still on feeding tube, but still - home) until they are ready to recheck or while the results are out.

In other health news - I am sick as a dog. Sore throat. Phlegmy cough. Runny, congested sinuses, and as of last night, so nasty red-eye swelling and mucus secretion. So sadly I can't feel comfortable interacting too much witch Grayson, dispite my face mask and constant handwashing. Still it's nice to see him.

Rug pulled out

We're going to be pretty incommunicado for a while. Grayson started vomiting Saturday night so we rushed him to the emergency room. Being a holiday weekend, we didn't get to touch base with our family practitiioner until Tuesday, by which point we had both been vomiting and didn't want to go back to the hospital and expose the other kids in pediatrics. Since we'd been planning on a trip to Indianapolis for a more detailed workup, Grayson was transferred down to Saint Vincent Children's hospital Tuesday night. We followed Wednesday. We know that he has bad gastroesophogeal reflux, so basically it hurts him to eat. Today he's getting an MRI and a bone scan. He had a CT done yesterday. His poor little feet and hands are bruised from blood draws and he's being fed through a nasogastric tube. Unfortunately, he's vomiting up some of the high calorie formula if it isn't diluted with pedialyte. The neonatalogist/pediatric geneticist doesn't think that whatever the problem is is fatal, but we don't have a name for it yet.

Still, after almost four days without one, Grayson smiled for us before we had to come back home yesterday and he smiled twice for my mom, who's there until we can get back tomorrow.

Sweet Relief

We haven't posted about this, because it's been very frustrating, but we'd been living with The Incredible Shrinking Baby and then The Incredibly slow growing baby for the past couple of months. Finally, though Grayson's weight is in the positive column! All babies lose weight at first, but Grayson went from his pleasantly plump birth weight of 9 pounds 2 ounces down to 7 pounds 12 ounces. Then, as he grew in length, his weight would go up a bit and then go down a bit. I've been nursing and pumping and supplementing and trying soy supplement (resulting in two days of bad constipation). We've also been trying to keep him as calm as possible, realizing that every screaming fit burns precious calories. Finally, last week he hit a peak of 8 pounds 12 ounces. He also started smiling more and being a bit less fussy. Today, after a week of both parents and a grandma encouraging eating Grayson weighed in at 9 pounds 3 ounces. So, for the first time ever, Grayson's up above his birth weight! He also rolled over for the first time this week, but that single ounce has really made all of us happy. Once he reaches 10 pounds, we'll even let him go road trips again.

Sleepy time

They're just too cute together!

Grayson's big photo shoot

Grayson was going to get some super-fancy photo-stylin' done this weekend -- but one of Daddy's co-workers went on vacation and took the super-fancy company camera. In the meantime, we can throw up a couple inferior quality photos by special request.