little Z

Zoe is growing so fast. She is the same age right now as Rhys was when he came home from the NICU. Wrap your mind about that one! She is nearly 16 pounds and still loves to eat. Rhys, on the other hand, was about 8.5 pounds at this age. And it amazes me still that despite all our feeding challenges we've been able to get him to the 25%tile on the charts for actual age. But I digress, this is a Zoe post. This is from a couple weeks ago when she had her first cereal.

She picked it up extremely quickly and now consumes a huge bowl full of cereal and apples two times a day. I haven't given her anything else just yet, but I'm sure she'll devour that too! More and more she is acting as though just the milk doesn't satisfy her. It is extremely strange having a child who eats normally. That you can take her out and about and not worry about feeding times and whether you're near a microwave is a novel thing for this household.

I finally have a decent sleeper! For the longest she was eating on demand, every 3-4 hours. Even through the night. She now sleeps anywhere from 7-9 hours a night, consistently. Hallelujah! The only problem is that she goes to bed around 8 and I can never get in bed before midnight, so I still don't get uninterrupted sleep, but this is still much nicer. She also is starting a regular nap pattern, with a small cat nap in morning and afternoon and a longer nap around noon. She is great as far as getting to sleep too, hardly ever fights it unless we're out in public, but eventually she will fall asleep. Hopefully the transition from our room to her crib will go smoothly. I'm about to do it! I really am! I have been putting her to nap in her crib quite often and she does fine, so I'm crossing my fingers she gets the nights down quickly as well!

She's been rolling for a while. Her first roll was from back to tummy, and that is almost an automatic as soon as you put her on the floor or in bed. She sometimes rolls from tummy to back, but not often. She is constantly pumping those chubby little legs and starting to pull one at a time up under her. She absolutely loves the jumperoo, about to the same degree as Rhys.

She isn't quite interested in sitting by herself, but if you have her in your lap she will try to pull away so she isn't resting against you. Rhys and Rollie had better watch out because she stares them down as though she's ready to pounce! Rhys loves his little sister and Zoe is becoming very interested in him as well. I'm going to pretend that is the way it will always be because I don't want to think about separating them from fighting when they get older. :)

2 yr high risk follow-up

Today was Rhys's follow-up with the high risk clinic at the hospital. We volunteered Rhys in a study while he was in the NICU in order to hopefully help other kids with the research. If you've been reading since day one you will remember us speaking of Dr. Gloom. He is the one heading the study, however we did not see him today. We saw the developmental pedi who will (I'm assuming) pass along the information she collected. They are looking for issues with vision and hearing (which Rhys doesn't have, except the small Rx for farsightedness), and developmental/motor issues (which Rhys has an abundance of). Anyway, the appointment lasted for more than three hours. Rhys handled the length of it better than I expected, but it was just as tiring as I anticipated.

What did we find out? Nothing really that we weren't already aware of. Rhys does have some form of CP. The pedi called him a mixed bag of tricks. He doesn't clearly have one type or another, so she is going back to read the clinical definitions to see how to best identify him. He has spastic CP (because of the stiffness in his legs - which is in line with the location of his brain bleed, it effects leg movement), but he may or may not have it in his arms. He has good motor skills in both arms, but what to do with the fact that the right side is weaker? I don't know a lot about CP to be honest. I've always confused myself with the fact that Rhys has tightening in his legs, but then has weak muscle tone - which seems a contradiction to me. I do know that people with CP can walk and otherwise lead normal lives. On a scale of one to five, one being walking independently and five being completely dependent upon someone else, Rhys is currently somewhere in the middle. The pedi said he is about a year behind, which follows that he was a year old before he started doing much of anything. As we've always been told, it is when kids stop developing that the doctors start to get worried. A lot of times they reach a point developmentally and then it becomes evident there isn't much more to expect from them. She seemed to indicate that is what is typical, and that Rhys's continued development is unusual. I don't really understand that fully so I need to get clarification as to why, based on Rhys's history, she'd expect this of him. I want to know if it is based just on his prematurity or something else.

So, what does this mean? Nothing really. We are doing everything we can think of in terms of therapy for Rhys, and it is just too soon to tell. Rhys's development is very delayed, but how much of that is due to his extreme motor delay? Based on how Rhys has developed I've always felt like if/when he could figure out how to move so many more pieces would fall into place for him. I'm a realist so I don't feel that is being overly optimistic. I just wish we knew the final outcome, but no one does. A baby's brain is so elastic that anything is possible. It is the not knowing that drives me crazy.

But in the meantime, he is healthy and doing well with all his therapy. His PT told me last week she feels like he will walk, he might have a limp, but she thinks he'll move independently. We are starting to discuss orthotics for his feet to help with the scissoring of his legs when he walks. Which incidentally is a bit improved. There has also been discussion about a stander, to make Rhys build his leg muscles up a little more. We're still not sure if Rhys will need a walker when he first starts, but if he needs one we'll get that too. The speech pathologist started up again last week after being on vacation for six weeks. He said he noticed definite improvements in Rhys in that short of a time. We have noticed them too. He isn't anywhere near one hundred percent, but he's getting better with eating and talking. He has always babbled a lot, but now he is articulating his words better. He says mama and dada frequently, in relation to either me or Cody, but not in an attempt to get our attention. It is more like I pick him up and he says mama. And he's also thrown in "no" a few times. The SP has said repeatedly that he thinks Rhys will do well in speech and eating, so I'm going to defer to the expert!

happy birthday

A super happy 2nd birthday to Rhys's fellow Zaky lover, Parker. Where has the time gone, Mere?

please stop the puking!

When does it stop? I am so tired of cleaning up puke. At least Rhys is a happy puker and doesn't get upset about it. I don't know if I could handle that with as many times as he pukes in a week. The terrible twos are quite enough, thank you.

I recently had to stop the mouth exercises (which incidentally I see are actually working bit by bit) with Rhys because he was puking at every.little.thing. - related or unrelated to the exercises. He had just stopped in the last few days, and I was about to start them up again. But first I had a brilliant idea to switch him from Pediasure to Carnation Instant Breakfast. One, it's cheaper. At the least expensive I've found it Pediasure is about $1.33 per 8 ounces, whereas the Carnation is about $0.80 per 8 ounces. There is similar nutrition, and Carnation even has a few more calories when mixed with whole milk. Second, and my main incentive, was that it is actual milk vs. whatever it is Pediasure is made of. Anyway, this is day two of no Pediasure. He wasn't super excited about it, but he's been drinking it. And just now he totally p.u.k.e.d up the entire contents of his stomach. Which is what inspired this omg moment. *sigh* I have to chalk this up to the milk because nothing else has changed. He's had cow's milk from the time he was one year adjusted so I know he isn't intolerant. So it is the extra quantity? I don't know. All I know is I h.a.t.e cleaning up puke.

welcome

Welcome to the world Mr. Zach. Not that I matter, but thank you for waiting 36 weeks. I know your parents appreciate your patience. ;o)

take five

Five years, three beautiful babies and a lot of living life. We've shared many experiences neither of us planned for, but here we are. Happy anniversary to my love.

I should...

I feel like I do everything, all day long, yet nothing gets done. I wash clothes, wash dishes, wash kids, only to have to do it again minutes later. And then there are the million other things I should do...

I should actually get out of my PJs every day and put on makeup.

I should be a little more motivated to get the kids out of the house more often.

I should tell you Zoe, and her first cousin Ian, share the same birth day. That's another story!

I should stop browsing the internet as often as I do.

I should actually exercise, eat right and attempt to lose my last 8 pregnancy pounds instead of staring at the scale wondering why it isn't moving in the right direction.

I should make sure I see my baby brother more often. I love him dearly and he loves my kids!


I should push Rhys a little harder with the foods he eats instead of taking the easy way of not aggravating his gag reflex and thereby skipping the cleanup of vomit.

I should quit avoiding telemarketer calls, and instead answer to remind them I'm on the Do Not Call list and quit dialing my number!

I should try to have more patience with Rhys and his whining instead of fussing at him for not communicating with me in a different way.

I should schedule the well baby checkups for Rhys and Zoe instead of dragging my feet because I feel they've both been stuck more times than they deserve.

I should make an appointment for my OB/GYN checkup instead of avoiding that place like the plague because I was there so often the last twelve months I now know everyone's name and job function.

Okay, I should really stop now before I start to sound like a whiner...

I am really not this crazy, I just get wired when I have a mental "to-do" list. Which is quite often lately it seems since my mind races with all the things that need to be taken care of. And that keeps me from sleeping. Like now. But rest assured... I am not feeling overwhelmed, just a little over worked. :)

the shirt says it all...

2 yr & 4 month updates

Rhys and Zoe are both getting so big. At Rhys's last nutrition appointment we realized that even though he'd been gaining some weight, it wasn't quite what it needed to be. So, we've been pushing extra snacks so he'll get more calories. I really think he needed the extra calories anyway. It is hard for me to gauge what he wants/needs since he doesn't communicate except for whining. I think it's working pretty well though because he is nearly 25.5 pounds, which is a pretty good weight gain from the ~23.5 pounds.

We've been doing the mouth exercises the SP recommended. I have been bad and forgotten to do them a few days. I can't do it after he eats because he'll gag and throw up. I had a duh moment that ended with me spot botting my rug. Rhys actually handles it fairly well, though he wants to chew on the little tool I stick in his mouth. Which would be okay, because that is actually one of the exercises to get them to chew with his molars, except that I also have to stick my finger in his mouth to "stretch" his gums. I'm sure you can see where this is going... he has mistaken my finger for the tool and I got a first hand feel of his sharp little teeth. I can see a small improvement in his speech. He isn't talking or using words, but I really think he's articulating his sounds better. And, maybe there is a tiny improvement in his chewing. I gave him something the other day that was out of the norm and even though he did have a bit of a gag when it didn't break down as quickly as he wanted he kept chewing and worked through it until he swallowed.

Rhys is also rolling all over the place. It is getting very easy for him to roll onto his stomach. He used to be a little hesitant and had to put a lot of effort into it, but now it's very smooth. He is also starting to raise up a little on his elbows. He still gets extremely frustrated when things do go his way, but I see his little brain working trying to put things together. I typically put him on a sheet instead of laying him directly on the ground and instead of working to move towards what he wants he's started pulling the sheet to bring it towards him. Even though I'd rather him learn to crawl that is problem solving.

Last week Rhys really got into his swim lessons. He started kicking in the water and also was participating in the other activities. The instructor said he was doing great with his swim skills. He doesn't want to monkey crawl along the edge of the pool, and he obviously can't crawl out of the pool, but he is enjoying it and the PT thinks it is really helping his tone.

Zoe is talking up a storm and is starting to laugh. We've been working on the floor trying to get her to push up and she hates it! She recently discovered the mirror and it's hilarious watching her look at herself. What a ham! She's been drooling a ton and chewing on her fingers. And the bottom front of her gums are a bit puckered and hard. It seems like she is teething, though when Rhys's first teeth came it in was a total nightmare, so either she's going to be a good girl and not give us fits or the teeth aren't close to popping through just yet. She still has no eating schedule to speak of, and wakes anywhere from one to four times a night. I am all about the nursing thing, but man I can't deal with this for much longer. Hopefully she'll regulate the eating a little better when she starts solids because if she doesn't we're moving to the bottle!

random commenters

Completely random, but am I the only person who is having issues with the random comments in Chinese that are showing up on posts? Any clue on how to block these people? I'm getting tired of deleting them. And I accidentally clicked on one of the links a while back and it went to a site of border-line child pornography.