Monday, July 27, 2009

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.
video


--Trish

Tuesday, July 21, 2009

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

Thursday, July 16, 2009

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.

video

--Trish

Friday, July 10, 2009

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

Wednesday, July 1, 2009

Chart Maker

Short of the fact that Robbie is still wheezing, it was really a good day in his world.

He slept well all night without having to be woken for a breathing treatment. (The doc said I only have to wake him for a treatment if he's wheezing in his sleep.)

Then this afternoon we had his 12 month check up. (Yes, at 13 months. We're a month behind on everything because we delayed his first shots until he was 4 pounds.)

Dr. P had nothing but positive things to say.

He weighed in at 16lb 4.5oz. Measured at 24 3/4 inches long. I didn't get his head measurement but I could probably figure it out BECAUSE IT WAS ON THE GROWTH CHART. For the first time in his life, he's on a regular (not adjusted!) growth chart. His giant noggin is in the 10th percentile.

We're still working on weight & length, but his weight made a huge leap upward. Right now he's projected to catch up on weight around 15 months old. Length isn't even remotely close, but she said it's always the last to catch up and she really isn't worried about it. If he's not caught up by age 3, we have other things we can work on it with.

She asked about all the fun things he's doing and decided that his development is somewhere between adjusted and actual age. She wrote down 8-10 months (he's 10 months adjusted.) but that's allowing for the things we know he's behind in (mainly gross motor stuff. Since he's just now sitting very comfortably unassisted, that'd be around 8 months, for example.)

Overall, he's doing very well.

Then we got to the illness stuff. He was wheezing in the office, though he'd cough and clear himself occasionally. If I could teach him to cough on command, he'd be golden. She stopped his oral steroids and started inhaled ones. (That's a step down treatment. Progress.) She checked his ears and said the infection seems to be cleared up, but he still has fluid, so we'll watch them.

We also talked about the winter. She really wants to get him approved for Synagis shots this year as well. Synagis is an injectable that helps fight RSV. RSV is the most common cause of lung infection in children. For most people, it's not much more than a common cold, but in someone in a weakened state, it can be very serious.
Synagis isn't a vaccine, but if a child is exposed to RSV, the Synagis helps it from becoming so severe.

The trouble is that Synagis is EXTREMELY expensive. (Let me say that again- EXTREMELY expensive. We're talking more than a thousand dollars per month, and he gets it for at least 5, sometimes 6 months.)

He was easily approved last year because of his gestation age and weight at birth. This year, things will be harder.

The good part about him being sick right now is that it might make getting approved a little easier. She added that if he gets sick a 2nd time, it will probably guarantee it. That also lead her to tell me that I shouldn't try to avoid him getting sick again because it would help our cause.

That doesn't mean we'll be letting strangers cough on him, simply that if he does get sick again, it has a silver lining.I will resist my urge to put him back in a bubble after this is over.

Her main concern is that if he got THIS sick from a less severe virus, if he got RSV, he'd be in real trouble. So she wrote for him to be submitted for Synagis approval. Cross your fingers!

He couldn't get his vaccinations today because of the illness and because he's been on oral steroids. Both things mess with his immune system and she doesn't want to tax him any more than he already is. The plan is to keep up the current regimen of meds until he stops wheezing, then he'll get the inhaled steroid for another week past that. At that time, he'll get his last vaccination and she'll double check his ears & lungs to make sure he's in the clear.

She guesses another week of Albuterol then the week of Pulmicort for two weeks more of breathing treatments.

On that front, things have improved. Robbie has finally accepted the treatments as part of life. He still flinches every time you turn the machine on (it's very loud, even wrapped in a towel) but as long as you give him a minute or two to acclimate to the noise before going at him with the mask, he does just fine.


Tonight he even decided he wanted his paci while getting a treatment. He found himself very frustrated trying to get it in his mouth with a mask on so I helped him out. Of course, then he got frustrated again trying to figure out how to get his hands to the paci to hold it in, but he managed. My boy, the multitasker.
So all in all, it was a good day. It felt SO good to see him on a growth chart. Just another step towards normalcy. We'll take it!

--Trish

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