Monday, August 30, 2010

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!

Monday, August 23, 2010

happy birthday

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

Saturday, August 21, 2010

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.

Friday, August 20, 2010


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)

Friday, August 13, 2010

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.

Wednesday, August 11, 2010

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. :)

Sunday, August 1, 2010