well, well baby

Rhys saw the pedi today for his 12-month well baby checkup. We love the pedi because the whole staff knows how to pronounce his name, it is lovely. Beyond that, we get in and out lickety split. No waiting for extended periods in the lobby with other sick children.

His pedi was thrilled with Rhys's weight. We are forever worried about his eating, so we sometimes don't easily see how well he's growing. They weighed him with his clothes (usually it is only with a diaper), and that just put him on the growth chart for his actual age. Officially, naked, he is about 19 pounds and 28 inches long. That puts him in about the 25th percentile for his adjusted age for both height and weight, and just shy of the growth chart for each for his actual age. His head though... well that is a different matter entirely. My baby boy, who has always had a rather large head, is in the 25th percentile for head circumference for his actual age. Ahem. All the more room for smarts my dear.

His lungs sound great, ears and throat look good. She isn't concerned about Rhys's delayed development, as she pointed out that she doesn't care when he does things, just as long as he continues to make forward progress. Today Rhys also got four shots, and let me tell you he was none too happy. Until about 5 minutes afterwards he'd already forgotten and was flirting with the receptionist. His bandaids are always cute... and he belly laughed when I pulled them off. Must have tickeled.

yum, yum

Not sure why my little goose loves eating some things and absolutely refuses others. He does like biter biscuits and medicine. He is the best medicine taking infant/toddler I've ever seen. And the taste of the medicine is hardly anything I'd expect him to want to eat. But, he loves it and immediately opens his mouth for the syringe when it's time for his Prevacid. So, he'll willingly take a syringe full of yuck, but gets horribly upset when you try to feed him yummy adult food. Unless of course yummy adult food is mom's snow cone... then he'll eat it.

But, I'll take him enjoying his biter biscuits if that is all he is wanting to feed himself.

Today I am: 1 year, 1 month and 5 days old.
Adjusted I am: 9 months, 1 week and 6 days old.

brush, brush, brush

Who needs a spoon? I like my toothbrush!



Today I am: 1 year and 1 month old.
Adjusted I am: 9 months, 1 week and 1 day old.

happy anniversary

Happy anniversary to me!

And Cody of course. It's hard to believe we've been married four years. And together for more than six. Last year we celebrated this way. I much prefer the way I'm doing it this year.... quietly at home, with Rhys. Except of course it'd be great if my husband were here as well.

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As is the case with most of Texas I'd imagine, we've been in desperate need of a few showers. Our poor sprinkler system can't keep up on its own, so our grass has been dead and our flower beds dry and crunchy for months. Today we received some much needed rain. But wouldn't you know the flood gates opened while Rhys and I were grocery shopping. By ourselves. With my umbrella in the car. What an experience, but Rhys handled it like a trooper! Nothing like driving home dripping water and squishing on the seat.

workin' really hard

Mom's been working me really hard, trying to help me sit! I don't always like it, but I'm getting better. Here is one way I practice.

But I also get to play!



Today I am: 1 year, 3 weeks and 6 days old.
Adjusted I am: 9 months and 4 days old.

what's going on

Not a whole lot new for us lately. I've been really bad about taking pictures recently, but will try to get some new ones up this weekend.

Rhys is doing fantastic! He is still off O2 and has even quit wearing it at night. Though I'd rather he did wear it at night. He started getting the cannula completely wrapped around himself, so I quit putting it on him. The pulmonologist didn't say to keep it on him at night so I guess we're okay there. I continue to spot check his O2 saturation and he is consistently staying 96 or better, with an occasional dip down a point or two. I still can't believe that! Even though he hasn't been off the O2 for long, I really don't know how we did it lugging the O2 tanks every time we stepped out the door.

Rhys has been making a lot of progress developmentally. We're still working to get him where he needs to be, but I see him do new things daily. His PT saw him on Wednesday and thought he looked great. He is grabbing for everything in sight these days. He mostly uses his left hand as a primary and then uses the right hand for assistance. His right hand is mostly loosely fisted, but so was his left until recently. He is really getting good at grabbing and holding onto things, but I am still worried about his right hand/arm. The brain is a tricky thing. Rhys's brain bleed caused damage, but to what extent he wont recover will not be known for a while. At his age anything is possible in that regard, thus the reason we keep pushing him. I asked his PT what she thought about it and while she can not say for certain what the mobility of his right side will be, she does not see the tell tale signs of stiffness, etc that is usually associated with permanent damage adult stroke patient often suffer. That is good news! All we can do is make sure he continues to use his right side and make sure he is grasping for things with both hands, which he does.

I've seen a great improvement in Rhys's trunk strength since I took away the bouncy chair and limited the use of the swing. With Rhys either sitting (with help) on his own, in his Bumbo, or having tummy time he has had a lot of opportunity to work those muscles! He is doing great pushing up on his tummy. He is still mostly on his forearms, but is able to hold the position for extended periods of time. He has also started scooting somewhat. The PT saw this yesterday and was really excited about it. So, he's finally starting to put more of the pieces together.

Rhys still hates the spoon. Boy does he hate it. I still try to give him any and every thing I can think of. Baby food, adult food, you name it. He had a little sour cream and beans at a mexican restaurant the other day and actually opened his mouth for it. That went south after he got beans "stuck" on his tongue, gagged and refused any more. He had ice cream a few days ago from a straw and really liked it. That is the strange thing, he has always been a great medicine taker and will almost always open his mouth for the syringe and now a straw. The speech therapist can't figure it out either. He moves food around like he should, swallows, etc, he just doesn't like to eat! She suggested trying to make our own baby food because she has known babies in the past who just didn't like canned food. That is my next undertaking. I have lots of free time don't ya know.

When school starts this fall Rhys will begin vision services through ECI. This is a 'just in case' given his brain bleed, ROP (that resolved on its own), prematurity, etc. This is a service provided for kids who need learning assistance because of vision problems. They help with things like enlarged text, special lighting, extended periods to complete assignments, that type of thing. It is obvious Rhys can see, but we figure any therapy for him is good therapy. I personally think the vision ladies are a little overzealous (they talk as though Rhys is completely blind), but if Rhys gets any benefit from it I'll deal with it.



Today I am: 1 year and 3 weeks old.
Adjusted I am: 8 months, 4 weeks and 1 day old.

moving all around

Rhys is moving all around. Even if it is in an unconventional mode. I put him in the center of the blanket, turned 45 degrees from where he lies now, and he rolls, scoots, and hops his way to this.

I have finally seen him set his sights on a toy and maneuver himself towards it. Just not by crawling. Though, he is grabbing for things while on his stomach now and is showing interest in moving that way as well. We're working unbelievably hard on his sitting and pushing up. It is well past the time he develops those skills, even though he might not share that opinion. So hopefully everything else will fall into place once he builds his strength. Lately my biggest concern with him (other than his disinterest in eating) is his favoring of the left side will be a life long disability for him and prevent him from doing boy things later on. Neither Cody or I have ever noticed a weakness in his right leg, only his right arm and trunk. He does use his right arm, and he uses it well, and any random person would never see a problem (i.e. bath video from previous post). It is just that if he had to choose he'd go with the left hand and not the right. If his right side were as strong as his left he'd be sitting and pushing up already. None of this is surprising given his prematurity, grade III brain bleed and every other concoction he was given in the NICU to save his life. But, he has gotten this far, and his right side is making progress. Just not at the same rate as the left.

Rhys is very big into scratching things lately. His item of choice is the couch. The texture on the couch must feel awesome on his fingers because no matter how I put him on the blanket, he always manages to position himself so that he is able to scratch the couch and stick his arm underneath. Not sure what he's fishing for, but that's what he does! I also hear him scratching the bumper pads in his crib when he's supposed to be sleeping, or the highchair cover and car seat.

Another funny thing he's been doing is playing with his blankets. When he rolls from side to side he grabs the blanket, rolls back over and covers himself up. He also likes to grab and, you guessed it, scratch the blanket, which usually results in the blanket wadded up all around him. Funny boy. Reminds me of bed time when I was younger - my brother and I used to roll the covers up in a ball and yell for my mother to come straighten them out when we didn't want to go to sleep!


Today I am: 1 year and 2 weeks old.
Adjusted I am: 8 months, 3 weeks and 1 day old.

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Update:

I go back to the living room after posting and this is what I find. What'd I tell ya? :)

we should all be so happy

Needless to say, little man enjoys his bath. Courtesy of Aunt M and Uncle D, Rhys's new ginormous bathtub made him one happy little boy. He does this from the moment you put him in until you take him out. We might have to think about swim lessons if this continues.

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As I posted on Twitter, we're trying really hard to "make" Rhys sit on his own. He is capable of doing it, but it is a lot of work and he just doesn't want to. Sounds like so many other parts of his life. We no longer put him in his bouncy chair or swing - he either sits with us, plays on the ground and works on pushing up, or he's in his Bumbo chair. It'd be great if this was short and sweet and he'd strengthen those muscles in no time. Strange, but I already see a marked improvement from yesterday. Hopefully that will continue. He arm strength is improving a bit too. I can give him a little support on his stomach while he is pushing up and he doesn't collapse when he straightens his arms. He is also going easily into the on-all-fours crawl position and is floundering about trying to figure out how to get moving.


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The nutritionist came yesterday and again said how great Rhys looks and how well he's growing. He is a bit over 18 pounds and something over 27 inches long. He's really close to the 25th percentile for adjusted height and weight. Next up is his 12-month checkup with the pedi.

Today I am: 1 year, 1 week and 3 days old.
Adjusted I am: 8 months, 2 weeks and 4 days old.

belated birthday present

I wasn't expecting our pulmonologist visit to go quite the way it did today. We've seen that Rhys has been satting very well lately, but even still we were shocked when the doctor told us he felt Rhys was okay on room air. Say huh? You heard me correctly, Rhys is officially able to stay off the O2 provided he consistently keeps above 93%. Wow! Not only that, but the doctor (who we'd never seen before but really liked - he was the chief something something) feels okay not seeing us for an entire year. Assuming we have no other concerns pop up between now and then he said Rhys was coming along nicely and wanted to keep Rhys away from the hospital (germs) as much as possible. He mentioned the possibility of a sleep study, but didn't push it when we told him we'd certainly attempt it if necessary but didn't feel like Rhys would go for it. So, for now we will keep the O2 equipment, monitor Rhys closely to see if he needs help, and pray Rhys can stay free from any infections and sickness that might set him back. Oh, and enjoy our untethered child.

this and that

Thank you all for the birthday wishes. Rhys had a great party and loaded up on birthday presents. What a lucky little boy he is to be surrounded by so many that love him. One gift in particular was just the coolest thing. He got an oversized infant bath tub after one of our friends (who we affectionately refer to as "aunt" - all our friends are aunts and uncles to Rhys) saw the picture of him on the blog in his little bitty tub. Rhys still doesn't sit up on his own so it is much easier to bathe him in the the infant tub instead of the bath rub. This tub is enormous, I've never seen anything like it, and Rhys loves it! He has the best time splashing around in it. Splashing all the water out of it I should say.

He also loves this new toy. So many things to look at! He's quite the musician with all these noise-makers.

I'm looking forward to opening all his other new toys and throwing them into the mix. I am constantly excited to see him play with new toys and discover how they work. It makes me feel better about his delayed development.

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We went to the NICU yesterday morning bright and early to visit two of Rhys's primary nurses and bring the staff birthday cookies. They were super excited to see Rhys, and we love bringing him up there. While we were there I got to see fellow micro buddy Coy's new baby sister, Cydney. What a cutie pie! She is doing fantastic, but is needing a tiny bit of help in the NICU. Please pray for a super short NICU stay so she can get home a.s.a.p.

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Rhys is still sleeping really well. He takes great naps and is sleeping through the night. I wish the boy would eat as well as he sleeps! He's barely been eating lately and it's driving me crazy. He has started scooting downward towards his feet during the night (does that make sense?) and I am not at all sure how he accomplishes it. He'll also roll over onto his tummy in the crib, but no where else. So, he can do it, I guess we're still waiting on the organizational part of it to fall into place. My 18 pound sack of potatoes is hard on the back so I'm really wanting something to click soon!

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We are going to the pulmonologist tomorrow. I am curious to see what is said about Rhys and his O2. He is satting much better than he ever has, so I'm hoping we'll be able to start the process of getting him off the oxygen. I was somewhat annoyed with the doctor the last time we saw her and then when the nurse called several weeks ago regarding Rhys's apnea monitor download results from January. That's right, there was a 4 month delay in them contacting us with instruction. Because we all know nothing much of significance can happen in 4 months. Or say even 5 months, since that is how long it's been since Rhys has seen the pulmonologist. Hopefully this visit wont turn out that way because if it does we might end up searching for a replacement.


Today I am: 1 year and 3 days old
Adjusted I am: 8 months, 1 week and 4 days old