Zoe got the boot

Zoe's been sleeping in our room since she was born. Initially for us to learn her quirks and become accustomed to a new baby, but then a few weeks turned into six months. What can I say, it is ever so much easier to move three steps instead of clear across the house when you're half asleep. And until recently she was showing no desire to eat less than three times a night. Even easier - Cody was away a lot the last few months and Zoe slept in his spot on the bed! Who wouldn't want to sleep next to this?

Last night was Zoe's first night ever in her crib. She's taken naps in her room, but never slept overnight. She went to bed just as easily as she always does. She even slept until her normal time of 5 a.m. Well, I'm assuming. My eyes popped open at that time even though Zoe wasn't crying or making any noise. Sure enough she was wide awake and staring at the light on her camera monitor. I almost got up to feed her, because that is what I'd normally do, but I stopped myself. She didn't look unhappy and she is well past of point of being able to sleep through the entire night without eating. So I stared at her for a while, as I am want to, thinking it's a good thing she is so stinking cute else I might be cranky about being awake at 5 a.m.

I was about to roll over to go back to sleep when I heard Rhys screaming. Ugh. Zoe's room is right next to Rhys's and I could see she heard him. She wouldn't be going back to sleep with all the noise so I checked in on Rhys then went ahead and put her in bed with me to feed her ('cause it is just easier that way). I really needed Zoe to eat anyway, if you know what I mean. By the time she was done eating Rhys was back to sleep, then Zoe and I fell back asleep.

Now if only I could get her to sleep until at least 6 a.m. (but mom would prefer 7 or later if you're listening Zoe) and Rhys to cease his obscenely early morning screaming fits...

equipment purchase process is in the works

After "thinking" about it for many weeks, we're finally getting the ball rolling on Rhys's orthotics and equipment. The PT has been waiting for Rhys to start breaking out of his tone pattern (i.e. move his legs independently and with purpose) before she moved forward with the process of requesting and ordering everything. She thinks he'll only need ankle supports, called AFOs I believe, for walking. This would be to help Rhys's feet stay in the proper position and help him use his muscles in the proper way instead of using the muscles in the tone pattern. Long term she doesn't believe he will need the braces, but that is something only time will tell us. CP isn't progressive, however the effects of not being able to move do ultimately affect the body and cause it to change. Rhys's case seems to be moderate, and he's making great progress, so we're hoping all this hard work pays off for him.

We've decided to get him a gait trainer instead of a stander. Since Rhys does very well bouncing in his jumperoo the PT feels this will be more beneficial for him than a stander because he'll get the benefit of mobility and the weight bearing. His gait trainer will look something like this.

The straps, handles, etc. that you see are removable and Rhys will not require all the attachments. The idea is to get everything Rhys might require and remove it as needed. I'm super excited to get this for Rhys. It is going to take a bit of learning for him (initially I think he will be more interested in the straps than the ability to walk), but I think he's going to love it once he figures it out. He doesn't get in the baby walker often because it isn't designed for toddlers, but when he does his face lights up when he starts moving around. The PT doesn't think he will need this long term, but again we don't know that for certain.

Rhys started his level 2 swim classes this week. Not much different than level 1 classes, just more under water work for the kids. He is getting good at grabbing onto the side of the pool (they teach and encourage "monkey crawling" for safety), but he doesn't yet understand the concept of moving around the edge. He tried to steal a little girl's toy while we were sitting on the step waiting our turn and I had the most inappropriate response of "way to go, Rhys!". He's never tried to take a toy from anyone other than Zoe and she doesn't really count because she can't take it back! He's becoming much more aware of his legs, literally, and grabs onto his pants/shorts a lot. He is also using his upper body to hang on to things and hold himself up. And the boy has mastered the art of rolling and can get pretty much get anywhere in the living room that interests him.

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...