Scooting

Look what Robbie started doing today!



--Trish

R.I.P Kenzie

Our dog passed today.

Our hearts are broken.

Kenzie was quite old, particularly being a large-for-breed Boxer. He was a tall, slim 85 pounds- a gentle, crazy giant. He was 11 1/2 and I hoped he'd be one of those dogs that defied the odds for life expectancy.

Boxers are quite prone to cancer and we'd had two scares in the last year. He had two tumors removed from his mouth last year and had a large growth on his paw for the last several months. All were benign.

I really thought that's what would get him in the end; the time would come and we would make the decision to ease his suffering. I honestly don't know what happened, which is the hardest part. I didn't get to say goodbye.

He ate well yesterday. His food bowl was empty when I filled it around midnight.

This morning I was rushing around trying to run an errand for Robbie before work and didn't pay much attention to him. He was really a great dog and had let himself out into the sunroom preparing for me to leave for work. He was a housedog, but during the day, he had the run of the sunroom, garage and a doggy door to the fenced backyard. I told him "you're a good boy" when I saw he hadn't made me call him. Then I left. They would be my last words to him.

When I got home, he didn't meet me at the door. In fact, no one did. I wondered aloud where everyone was. Robbie was napping, David was in his office. I went to look for my dog, thinking he hadn't heard my car come in.

I opened the backdoor and saw him laying by the fence. I thought he'd jump up like he normally did when I surprised him. "Oh mom! You're home!" but he didn't move. My heart sunk. "Kenz? Kenz?"

Before I got to him, I knew. "Oh buddy. Please don't be.. Oh God."

I came running back inside and told David. That's when I started crying. I really haven't stopped since.

I called the vet to have him cremated. Fortunately my favorite vet employee answered the phone. She has a boxer, too and we always talked about getting the dogs together for a play date. She met me in the parking lot and cried with me for a while.

Everyone speculates that he went quickly. He wasn't curled up as though he knew something was wrong. He honestly looked liked he'd gone to lay in the shade of the fence and just enjoy the day. His eyes were still open. I pray it was a stroke and it took him quickly and painlessly. Most of all I hope he knew how much he was loved.

Even David, admittedly not a dog person, shed some tears and proclaimed "He was a good dog."

There is already an emptiness in the house. Tonight when Robbie threw all of his Puffs in the floor, I had to sweep them up. When Robbie splashed water from the tub into the floor, no slobby dog bound in to lap it up, or to lick the water from our arms or to give Robbie kisses so gentle you couldn't believe a dog as sloppy as Kenz was could give them.

I often wondered if Robbie's first real word would be "dog." Now, he won't remember Kenz when he gets older. But we'll tell him about his first dog. I'm thankful we have pictures of some of their interactions. Kenzie taught Robbie that just because things are bigger than you doesn't mean they are scary. And Robbie taught Kenzie that patience is always rewarded- whether it be with an animated pat on the head or scraps under a high chair.

But he's gone. Thus is the bittersweet symphony of pet ownership. So much joy they bring, that when they're gone, the sorrow is even more profound.

If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers

--Trish

Fever

Friday night, Robbie spent 2 hours in misery. I didn't really know what was going on. He was spitting up a bit, and generally acting miserable, but nothing was obvious. We were up from 2-4am. He then slept in until 9:30.

Unfortunately, when I got him up, he was burning up. 100.6 under the arm. Uh-oh. He was also super whiney and would not be put down at all. Definitely out of character.

I called the doctor. Fortunately our pediatrician has Saturday hours (the doctors take a rotation) so we headed in.

I really liked the covering doctor, which was a surprise. Not that I've ever actively disliked any of them, but I do feel like sometimes they dismiss the seriousness of his prematurity, and tend to rush. Not so on Saturday. She asked good questions and seemed to actually listen to the answers. She was great with Robbie (who cried the entire time. His doctor phobia is fully enacted.) His lungs were clear, which was a relief. His right ear, however, wasn't as lucky. She said "well, it's full of pus." Yum. Leftie was full of fluid, though not actively infected yet.

We left with a prescription for an antibiotic.

Once we filled the prescription and headed home, Robbie was ready for a nap. He whined all the way through Target because I couldn't hold him every. single. second. so I was ready for his nap, too.

We've kept him dosed with Tylenol and Motrin every 4 & 6 hours, respectively, but until this afternoon, couldn't get his temp below about 100 degrees under the arm.

He's been fairly pukey and had a bit of a clear runny nose as well. I suspect the drainage from his ear is creating havoc in his whole system.

Fortunately tonight, his fever seems to have broken. He was 98.7 earlier and he no longer feels like a hot coal. Gross rocks of what I assume is dried up pus are coming out of his ear, but he doesn't seem to be in any pain. His mood was better tonight and so far, he's sleeping well.

Funny, I was worried about germs at daycare, and he gets something that isn't contagious.

Of course, this means that he can't go to daycare tomorrow. (Have to be free of fever for 24 hours first) so I'll be using a vacation day to stay home with him.

Maybe it's all just a ploy to get me to stay home, huh? I bet the doctor's in on it.


--Trish

Changes

It's been a very big few days for Robbie.

I am now back to work after a year off, so that means Robbie has to go to daycare.

We have been very fortunate in finding a GREAT place for him in a daycare owned by my dad's longtime girlfriend's sister. It's just the owner, Julie and one of her daughters, Katie and the kids.

I can't say enough good things about them. They both have great energy and spirits. You can tell they truly love kids.

The night before I was a bit nervous, but got everything as ready as I could, so that in the morning, we just needed to grab his feeding pump and food and my lunch and could be on our way.

Morning went pretty well. I had to wake Robbie up, but he was in a good mood. Got him dressed (small problem- he is already too big for the first day outfit I'd planned! But we went with a cotton jumper, no big deal.) and we were on our way.

Of course, as soon as I pulled up to the daycare, I realized I'd neglected to bring his bottle for the day. Oops! So I took Robbie inside and sat him down. He went straight to playing. I ran back across town to grab his bottle and then back again. When I got back, he hadn't even noticed I was gone. Turned out to be a nice dry run.

Of course, that also ate into all the time I'd budgeted for having my weepy good-bye, but that might have been for the best. I was able to spend 10 minutes just watching him play. When it was time to go, I hugged him, and you could tell he just wanted back down to continue playing.

I got a little choked up and went to my car. I cried a little on the way to work, but honestly, it went better than I'd expected.

Katie texted me a picture pretty early in the day. He was happy. No tears.

I called to check on him around noon and Julie was giddy with excitement. Robbie had eaten HALF A JAR of baby food! That's a HUGE feat for him. She said she counted 30 spoonfuls. Plus 5 puffs! It was so great to hear. And to know that Julie was as excited as I was meant a lot. It's nice to know he's in caring arms.

Later in the afternoon, Katie texted another picture. This time he had yogurt on his face. He'd only had about 3 spoonfuls, but still. An afternoon snack just like a regular boy.

I was able to get off of work an hour early (things are slow) which meant I could pick him up from daycare instead of David.

When I arrived, he barely glanced up at me. When I sat down next to him, he gave me a half smile as if to say "it's about time, mom" but went right back to playing with a balloon. Finally a minute or two later, he reached for me and wanted to be held. I tried to set him down again and he didn't want that. He still wanted to play, but from the confines of my lap. Maybe he had missed me a little after all.

Today was his second day there and I wish it had gone as well. It didn't go badly, but he definitely knew what was going on this morning. As soon as I got him in the door and sat him down, he started to whine. Katie was great about distracting him, which worked. But when he'd see me, he'd whine again. I think he knew I was leaving him. It broke my heart.

When it was time to go, Katie took him and distracted him so it wasn't too traumatic. They told me later that he never did work up to a full cry, but would occasionally look around and whine a little.

The worst part of the day was around naptime. Julie called and said he was crying and wouldn't stop. They worried that they'd done something to hurt him with the G-tube (unlikely). I suspect he was just over-tired and maybe over-stimulated and probably just wanted his mommy. It killed me not to get up from my desk and just go rescue him. But I know we all have to adjust to our new lifestyle.

Fortunately shortly after we hung up the phone, Katie texted to let me know that as soon as they called, he'd fallen asleep. He still only slept about a half an hour (not nearly enough) but it was enough to restore his good mood.

I was able to get off an hour early again so I could retrieve him. This time he smiled when I showed up. It was nice to see. They said all in all, he still had a good day. He'd only eaten about 5 bites of his food for lunch, but that's what he'd normally eat at home, so that wasn't unexpected.

When we got home he took a long nap. We actually had to wake him so he would be willing to sleep at bedtime.

Hopefully he settles into his new routine pretty soon. I hate seeing him sad. I know the daycare is good for him. And being back to work is good for our checking account, so it has to be.

But if anyone gets a line on winning lotto numbers, let us know.

For now- pictures!

All dressed and ready for my first day.



Packed into the car and ready to go.



My new daycare is so pretty!



Look, I already have new friends.



The 2nd day at daycare wasn't so bad. Look at all my playmates!


--Trish

GI visit

Robbie had a regularly scheduled pediatric GI visit today. We saw the nurse practitioner in the office whom I happen to love. She has 26 weeker twins herself, so she's a member of "the club."

Robbie was less thrilled about the visit. He really had developed quite the phobia of doctor's offices. He was fine in the waiting room, but as soon as we walked into the exam room, he started crying hysterically. He cried all the way through being stripped, weighed & measured and most of the way through our discussion about how things are going.

The good news: He weighed in at 20lb 15.5 oz, measured at 26 inches. That puts him on the growth chart for weight. About 10th percentile. Everyone oohed and ahhed over how chunky he is. She even called in the doctor to marvel over the change. There were lots of giggles about his "man-boobs" (or "moobs" as the nurse practitioner referred to them.)

The NP said the computer yelled at her because his weight gain was so great. That's both good and bad, of course.

Yes, it's good to see him gaining and looking healthy, but there are limits as well. He gained 4lb in the month of July. That's double the maximum they like to see.

I explained that we're finally getting a handle on the puking and how much his caloric needs have changed. She approved of the changes I was making and asked to tweak them just a bit more.

Right now, the plan is to keep him at 90 kcal/kilo for 6 weeks. We'll see GI again at that point for an official weigh in. If he's still gaining too much at that point, we'll drop to 75kcal/kilo for another 6 weeks. If he's STILL gaining too much, he'll earn himself a metabolic work up to make sure nothing else weird is going on.

She's not concerned about one banner month of weight gain, particularly considering how poor the previous 13 months were and how far behind he was. She thinks he just hit a catch-up growth spurt (common in preemies) and we should be fine, but we will watch to make sure. Her hope is that he maintains his growth curve of 10 percentile.

Everything else was good. We walking about his development. It's always nice to talk to another mom who truly understands the battles we face. Her twins are several months older than Robbie, so it's always nice to hear how they're doing and hear how they're overcoming their obstacles. It gives us hope.

All in all, it was a good visit.


And of course, some recent pictures!

Lookie! My feet finally touch the ground in my jumperoo.



Hanging out in mommy & daddy's bed with one of the sleepy kitties.



You lookin' at me?



My OT is making a Robbie salad!



I'm a rockstar- just like grandpa!


--Trish

Gaining

We spent the weekend with Robbie's grandma and had a great time.


There was an ugly incident with a diaper explosion at Lambert's, but we survived without bloodshed. (Though I did consider it with the steady stream of people coming through the bathroom who couldn't be bothered to help the mother with the screaming, naked child get a paper towel out of a jammed dispenser.)


Unfortunately, I haven't been my usual shutterbug self the last week so I don't have a lot of pictures to share. (Hey, there could have been pictures of Robbie naked and screaming in a public bathroom! Count your blessings!)


On a brighter note, the boy has surpassed a big mark- twenty pounds! He gained FOUR pounds in the month of July. Goal is 1 lb/month. Ideal is 2 lb/month. So this is amazing. I haven't increased his caloric intake in weeks, he's actually now getting much closer to a normal amount of calories.


Normal, healthy infants usually take 100 kcal/kilo. There is a 20 calorie span either way that they should fall between. In the past we've had to keep Robbie at AT LEAST 120 calories/kilo to gain a reasonable amount of weight. It's been very hard because the more you feed him, the more he pukes. That, in turn, makes it harder for him to gain weight, and of course, then you need to feed him more and he pukes more.

With his massive weight gain this month, he's now getting about 96 kcal/kilo. Back in Robbie's NICU days, this would have led to either zero weight gain or a weight loss, so this is truly amazing!


The last few weeks, we've established a feeding routine that has significantly reduced his vomiting. Most of his feedings are now pumping in over 75-90 minutes. He is much pukier in the mornings, so that one goes in over about 3 hours (and he still pukes most mornings) but the daytime routine isn't so exhaustive.


Now instead of puking 15-20 times/day (which we did for months on end), it's more like 2-4 times/day. I realize most people would think "wow, he pukes every day?" but for us, that's miraculous. It's mostly in the morning, or if he gets too active while being fed.


The time involved in getting the feedings in can be challenging, but it's working and totally worth it. He also seems to be almost completely pain free (obviously puking isn't much fun, but he pukes and it's over, rather than screaming in agony for 45 minutes at a time.)

We're definitely nowhere near "normal" but the relief that comes with not having to watch him in constant pain makes us feel so much closer.


Obviously it's working because keeping those calories in him instead of puking them out is obviously working. Robbie is downright pudgy these days! It's getting challenging lugging him around, particularly in the carseat. I've never been so happy to be giving my muscles a workout, though.


I don't have a lot of pictures to prove it, but hopefully this will hold you over until I can get some more. I promise to do better this week.

Talking to my doggy.

Getting a "cookie" from my cookie jar.


A morning snack- a syringe!

--Trish

Nineteen and counting

Robbie has now broken 19 pounds. If only he weren't so wiggly, I'd measure him. He's definitely growing. He has very few 3-6 month clothes left that fit. He's solidly into 6-9 month clothes.

He's working on the new sound "na na na" and has been making funnier facial expressions including a scrunched up face that I think is supposed to be a cute smile and a grimace that is pretty funny.

Tonight I caught him using his index finger to spin a toy. Love those fine motor skills!

I'm wondering if his top teeth are EVER going to come in. He's been working on them for months, but the last 2 weeks we've had several days where he just seemed downright miserable and is chewing on everything. He even had a low-grade fever most of today. Fortunately he's still in a good mood, though he's not sleeping terribly well.

This weekend he got to spend time with his great grandma and great-great aunt Hazel. He was a constant source of entertainment for all.

Of course, he's still handsome as all get out.

Is this thing on?



I'm learning how to put things in and take things out. Mommy thinks this is pretty cool.



Good doggy.



My OT brought me the tastiest therapy toy!



There's a toy in there!



Carnac the Magnificant says "the answer is....."



Everybody shout! shout!



Garcon! Garcon! Service please!



My new frustrated face.



here kitty, kitty.





A very short video of Robbie demonstrating his new grimace.



--Trish

Brief update with pics

Not much to report, really. Robbie's been very clingy and a little cranky. I think he's working on his top teeth. Still no signs of them breaking through, but they're swollen for the umpteenth time.

I like the extra snuggles, though I must confess that after several hours of insisting on being held, naptime or bedtime is a welcome reprieve. He weighs 18 1/2 pounds now- he gets heavy!

He officially hates a toy for the first time. It's a toy we gave him for Easter. He loves part of it. It makes an obnoxious repeating noise when you hit a button. He'll hit that button 20 times in a row. But the other part of the toy, you pull a lever and it plays a song. Every time you play the song? He cries. I mean, full out, sad-with-tears cries. It's bizarre and a little funny.

It takes a few minutes to calm him down afterward. I'd post a video of it, but I don't want to make him cry on purpose.

You'll have to settle for pictures.

I don't think he actually consumed any food here, but at least he had fun.



Cheese!



Playing with the blinds.



I love my puppy.

A bubble bath in the big tub!

--Trish

Toot Toot

A certain Robbie's grandpa was complaining that we hadn't had any new pictures of videos in SIX WHOLE DAYS, so here's a video to tide you over until I can put together a real post.

Lately, he thinks "toot toot toot" is a pretty funny sound.



--Trish

July 10, 2009

Robbie is finally over his cold and bronchiolitis. He stopped wheezing last Thursday. He had one last albuterol treatment on Friday (mostly because I'm a paranoid mom) and then had to have steroid treatments for another week. His last one was this morning.

He also finished his antibiotics this week. I thought we'd escaped the antibiotic diaper rash, but alas, yesterday his poor little bum was suffering. It's the first one he's ever had. I'd been keeping him smeared up with Butt Paste the whole time anyway, but I've now added a paste of Mylanta. Today it seems a little less severe. I'm hoping it's gone soon.

He's been doing a few new really cute things.

He's started sharing. I think it's especially cute since no one really taught him this one. Just all of a sudden he started handing me his toys. He doesn't always want to actually let go of them, but he likes to hand them to you anyway. The other night he was even "feeding" me. He was playing with some paper and I was laying in the floor next to him. I guess he decided he was having such a good time chewing on the paper that maybe Mommy would like a bite, too. So I'd growl and gnaw on it and he'd giggle, then take it back. Then he'd put it back in my mouth and we'd do it all again. Just a little while ago, he was sharing his pacifier with Grandpa. He must love Grandpa a lot to share his most precious item!

Robbie also is exploring his toys more and more. We have one of those peek-a-boo toys that pops up when you activate a lever. Then you push the toys back down. He's learned to push them down. Sometimes getting that last little bit down to get it to click is a challenge, but he definitely wants to close them all the time. He's loved his toys for a long time, but mostly to bang on or shake. It's amazing to see him figuring stuff out.

He's been babbling "dadada" quite a bit. He still also loves "baba" but seems to have forsaken his poor "mama."

His physical therapy went exceptionally well this week. They were working on crawling and he was really getting the arm movement part pretty well. We've continued working on it this week and he's getting better and better about moving his arms forward. I really have been convinced he wasn't going to crawl (would just go straight to walking) but the way things are going, I think it's possible that he'll be at least army-crawling sometime soon.

He broke 17lb this week. That honestly sort of blows my mind. Seventeen pounds just seems BIG. And it sure FEELS big when you add 8 pounds or so of carseat and lug the whole thing around. He's still short as all get-out which is making clothes sizing interesting. He's wearing 3-6 month clothes, but the belly and legs are stretching a lot of them. I will never complain, though. It's just lovely seeing him thrive.

My favorite development is that he's started giving affection. I don't think he quite understands a kiss just yet, but he'll lean his head in and give you a head bump occasionally. I thought it was a sign of affection for a while and talked to the OT about it yesterday and she confirmed that's pretty normal. First he understands getting heads close together, then you'll get an open mouthed kiss, then finally a pucker (if we're lucky.) So I'm thinking of it as a head-kiss. It's pretty cute. He'll be playing and going wild, then suddenly stop & lean his head in to bump yours, then go back to playing and going wild again.

In less fun news, he's had a bit of a rough time with his reflux again this week. Yesterday was a particularly unpleasant day. He starts his morning with a breathing treatment and a feeding and he actually puked into his breathing mask. Then less than an hour later, he puked upward and managed to get it in his eyes. That's really not the way anyone wants to begin a day.

It's frustrating to not really be able to do anything about it. And knowing that 99% of kids outgrow it by now. Robbie always has to defy the odds. His OT even commented yesterday that he "wins the award for the worst, most stubborn reflux" she's ever seen. That's not an award we wanted. It's really annoying because, for example, yesterday during therapy, she couldn't do some of the activities because every time he'd try to lean forward to get something, he'd audibly reflux & cough or start swallowing hard. Please keep praying this reflux finally stops.


And with that- some updated pictures:

Sitting in the sun



Is this for me?



Meeting a new friend.



Whoa Horsey!


Grandma helps me explore.



My grandma made this outfit for my daddy in 1970!



Happy Independence Day everyone.



My shirt says I'm a little pirate, but I seem to still have both legs.



Learning to crawl in therapy.



HAHA! Mommy's funny!



I don't know what I used to hate about baths. They're pretty cool.



Be sure to photograph only my good side, dahling!



A rock star in the making.

--Trish