Monday, February 2, 2009

FUP

I am seriously considering getting this. I'd like to get this, but I have children and somehow it just wouldn't seem right. It's like the blogger says, if I get the first one, "cool people will understand."

So, just what is THIS all about? If you haven't already been entertained by one of the funniest things on the Internet, I present to you (drum roll please....)

FUCK YOU, PENGUIN!

Sometime in December, an old friend posted a link to this blog on Facebook and I haven't stopped laughing since. I worked my way back to the beginning and anxiously await new posts with bated breath. And when the waiting gets to be too much, I simply go back and read some of the real gems like these two.

Yes, I know it might be offensive to some (the language is quite obscene at times), but I don't care. So, let me keep this short so you can get to laughing. I for one am going to go reread Dec. 16.

Sunday, February 1, 2009

Official Diagnosis: Spastic Quadriplegic Cerebral Palsy

On Thursday, Cadence saw the same doctor she saw a year ago who shocked me with the words Cerebral Palsy. Although I knew this was a possibility at the time, I felt like she had been progressing. Time has certainly proven him right in the regard that she clearly has severe physical delays and challenges. I've accepted this, but still hold out hope for continued effort and improvements on her part.

So when visiting with him this week, he said overall she looked healthy. I asked him for an official diagnosis and he gave me one: Spastic Quadriplegic Cerebral Palsy. He said "spastic" meaning tightness and rigidness in her movements and "quadriplegic" meaning it affects all four limbs. He also said something about how the more involved the CP, the more likely the child's cognitive function will be low.

From: http://www.cerebralpalsy.org/types-of-cerebral-palsy/

Spastic Cerebral Palsy

Spastic Cerebral Palsy is the most common diagnosis. If your child’s CP is “spastic,” her muscles are rigid and jerky, and she has difficulty getting around. There are three types of spastic Cerebral Palsy:

Spastic diplegia — Your child’s leg and hip muscles are tight, and his legs cross at the knees, making it difficult to walk. This kind of movement is frequently referred to as “scissoring.”

Spastic hemiplegia — Only one side of your child’s body is stiff. Her arms or hands might be more affected than her legs. On the affected side, her arm and leg may not develop normally. She may also require leg braces.

Spastic quadriplegia — The severest of the three, spastic quadriplegia means that your child is more likely to have mental retardation if diagnosed as quadriplegia. His legs, arms, and body are affected. It will be difficult for him to walk and talk, and he may also experience seizures.

Mental retardation?

Really?

I don't know about that one. I mean, I guess it's possible, but she seems so alert, aware. She's very visual, understands many commands, can recognize pictures and faces in books by both fixing her gaze on them and attempting to "get them" with her closed fist. She recognizes songs she likes and she gets excited when she sees or hears dads voice when he gets home from work.

So, ok...she doesn't talk yet, but I've been lead to believe this is more likely due to the fact that she physically can't yet, not because she doesn't want to or has nothing to say.

When he first brought up this possibility (he never used the words "mental retardation"), I thought, "No way." But, just as the last year has proven him right the first time, I am wondering how right he might be again. I can't help but wonder if the fact that she still doesn't nod or shake her head "yes" and "no" are simply physical impairments, or is she really suffering from severe cognitive delays as well?

I know, I know...time will tell. I've heard it all before. I'm just sick of waiting.

Thursday, January 22, 2009

It Could've Been Worse

I wrote this a few months ago and I know there are some problems with style and typos and stuff, but though one of these days I will get around to fixing it, for now I just wanted to post it. Enjoy.


I suppose it could’ve been worse.

I often find myself repeating this in my head when I think back to July 20, 2007.

Everything about my third pregnancy was normal, right down to a good strong heartbeat, a perfect ultrasound that showed 10 fingers and 10 toes and a baby that measured exactly as it should each week. Even as the first signs of labor came, there was never any indication that my second daughter would be anything less than perfect.

But things quickly unraveled. Shortly after arriving at the hospital, my midwife Lucie told me the baby’s heart rate was too high and because of that, they were moving me up to a regular Labor and Delivery room, not the Alternative Birthing Center like I had planned. I was bummed out, but I knew she knew what was best for us, so I went without any fight.Once we got settled into the L&D room, Lucie broke my water and immediately noticed meconium in the fluid. She told my husband Corey he wasn’t going to get to cut the cord and warned us about the team of pediatricians that would be standing by ready to take her as soon as she came out. I knew a little bit about meconium (the baby’s first bowel movement) and that it is usually not a big deal, so I wasn’t really worried about it.

I breathed through the contractions for an hour and with each one, I had to tell myself in my head over and over again, “You can do this. You can do this!” They hurt! With the first few really bad ones, I was a little freaked out thinking, “I can’t do this again” and I considered drugs. But, I reminded myself that I had done it twice before and I could do it again. Just breathe through them, I told myself.

When it was finally time to push, Lucie said, "It's time to meet this baby who couldn't keep her room clean. Or womb, whichever you prefer." She reminded me the importance of making sure to stop pushing when she said so she could suction her out. If not for that, the baby would have been born with one big push. Instead, I pushed, held, held, held..."Come on! Can't...hold...anymore...!" Released hold, pushed and out came Cadence Ann Smith, following by a really large splash. I didn't look.

Just as Lucie said there would be, a team of doctors came in and worked on Cadence for what felt like an hour, but it was probably more like five minutes, if that. I didn't hear her crying, but I had seen, heard and read enough to know that was ok; I needn't be too concerned. When after a few minutes she was barely squeaking, they told me they were bringing her to the NICU and I could expect her to be there my entire stay. She had inhaled a considerable amount of meconium and needed extensive care. They brought her over to me for a quick hello and after holding her for just about 10 seconds, she was gone. All I remembered about her was her eyes. They were open and gorgeous!

I knew she was in good hands. I tried not to get upset and I told myself she was going to be fine. No matter what she was going through, they had everything they needed to care for her and help her with her breathing until she was well enough to do it on her own. So, as I lay in the bed waiting for the after birth process to be complete, I was calm and relaxed, clearly a mother on her third child. Corey was pacing around the room and Lucie was collecting the cord blood we had chosen to bank when she held up the umbilical cord and announced, “Here’s our culprit.”
And there, in the center of my daughter’s lifeline for the previous nine months, was a true knot.
Lucie went on to say it was likely that at some point the baby had tugged at the cord, momentarily cutting off her oxygen and causing her to gasp, thereby inhaling the meconium. I still remember my mouth opening slightly as I just stared at it, thinking how lucky we were. I never for one second thought that it had given her brain damage.

But, as the coming days would tell, it had. After the NICU nurses raised some questions about Cady’s behavior, they began testing. They said it could just be she was worn out from fighting so hard to breathe (she was on oxygen for 12 days), but her unresponsiveness and lack of certain reflexes concerned NICU staff. Soon, an MRI confirmed what a CAT scan had suspected. Damage to the thalamus. No prognosis available. Only time would tell the life my daughter would lead. If I had a dollar for every time I was told about the “elasticity of the newborn brain” and its “ability to heal itself” I’d have had enough to cover all the cafeteria food I was eating.
Looking back, the next six weeks were a blur. I was overtired, stressed out and extremely nervous, anxious, angry, depressed…all of the above. There was even some guilt: “What if my body had just delivered sooner?” “Did the exercises I had hoped would induce labor cause her to tug at the cord?” “Why couldn’t I have just left well enough alone and stopped at two children?” I had a 3-year-old daughter and another baby at home (my son had turned 1 only 12 days after Cady was born – clearly still a baby in my eyes, and heart, for that matter) and there were days when I wondered how I would ever get through the ordeal.

And if all that weren’t enough, when she was exactly four weeks old we were hit with more bad news. Cady, who at this point was only still in the NICU because of problems feeding, was silently aspirating her formula. Had we not caught it, another bout of pneumonia was inevitable. Surgery was scheduled later that day and at just 4 weeks and 5 days old, my child was put under general anesthesia yet again as a feeding tube was placed in her abdomen. She went home a week later.
Her first weeks home were close to unbearable. She hated the darkness and silence that is the night. After nearly six weeks of constant lights, beeping sounds and full-on alarms, Cadence had literally not had a moment’s peace since she was born. I spent many nights begging her to sleep and one night, with just the streetlight shining into the room and across her face, I wondered what our life would be like. I sobbed to her, asking her if she thought I could handle being her mother. Could I handle the stress of caring for a disabled child? Would her problems be physical, mental, both? How was I going to do this? Did I have it in me? And then, and I swear this is the truth, Cady cracked her first smile. It wasn’t a great big one, but more of a little smirk that says, “Hey you,” followed by a knowing wink. I brought her to my neck, held her tightly and as I cried into her blanket sleeper, I felt as if she understood my sorrow and wanted to give me something, anything to hold on to. Time truly would tell all, but in the meantime, I would, and knew I could, do all I had to for my daughter to ensure the best possible head start of her challenging life.
Now, when I think back to July 20, 2007, I know it could have been worse. The knot could have killed Cady and we would never have been blessed with the joy of her smile, the twinkle in her eyes and the little bits of laughter she squeaks out now and then. The pride we felt when she started eating, finally rolled over and began using her hands to catch herself from falling is something we would never have experienced. Hearing the word “perfect” used to describe her was sensational, even if it was only to express how well her hips were forming and watching her pull herself upright and pick up her head to smile at you as if to say, “Ma! Look what I can do!” is enough to make it all worthwhile.

Having a disabled child means many things, but most of all it means fighting harder for the simple things, feeling prouder over every accomplishment and never taking a single laugh, moment of eye contact or feeling of understanding for granted.
Yes, it most definitely could have been much worse.


Friday, January 16, 2009

Decisions, decisions...

Corey and I have a decision to make. An expensive one at that. Callia has been invited to attend the ProScout Invitational in Boston. For a whopping $795, she will meet with the top modeling and acting agencies in the business at a weekend long event in Boston in April.


Here's the story: for as far back as I can remember, people have always commented on how beautiful she is. I always agreed, but I also knew I had no choice. She's my daughter; I am biased. As she got older, I heard it more and more. "She's just gorgeous. She should be a model." She was even chosen to be in a Disney movie when she was 2, but they blew her off. (Nice, huh?)


So, last night I took her to a ProScout Model search. I heard them advertising it on the radio and thought, "Oh why not?" I really had no idea what to expect or what it was all about, but I figured it couldn't hurt to go in and check it out.

Ok, now. To avoid getting myself all worked up and mad all over again, I am going to skip ahead to the part where she was seen by the man doing the interviews. See, my son was so unbelievably uncooperative, it was all I could do to keep sane throughout this process. Just know we went in, filled out form, waited for a half hour, the man took one look at Callia and said, "She's got it," just after he glared at my son for screaming like madman. I sheepishly admitted that he belonged to me. He said he already knew Callia had exactly what he was looking for but unfortunately he could not talk to me with Kiefer there. I told him I could drop him off at home and be back in time to hear his presentation for the second round of interviews. He said that would be fine and we left - Kiefer, by the grace of God, with his life still in tact.


We returned at 8:30 and that's when we learned just how the program works. They charge you $795 for the work they do (and the legwork they save you) putting you in front of the top agents in the world (think Disney, Nickelodeon, Elite). You don't get signed? Too bad for you. They did their part - getting signed is yours.

So, what should we do? First off, we don't even have that kind of money to spare. Sigh...I don't know. I have more to add, but I'll post that when I come back with our decision. (These kids are getting on my nerves.)

Thursday, January 15, 2009

Happy birthday, Donald!

I kept my promise. It wasn't as hard as I had thought it would be. It helped that Julie and I made friends on Facebook a few months ago, so even though we hadn't spoken since April, I do feel like I know her a little. At first I didn't know what to say to her so the beginning of the conversation was a bit awkward, but after that I pretty much didn't shut up for40 minutes. I am sure she was hoping I would at some point, but she was very gracious about it.

I guess there's really not much else I want to say. Just thought I should let it be known that I am still thinking of Don today, as I will every January 15.

Happy birthday, Donald!

Saturday, December 27, 2008

Good-bye 2008...

It has become quite clear to me that I am not very good at this, yet here I am...again. I suppose I am hoping that with all of the other changes I am trying to make in my life, blogging on a regular basis can finagle its way in.

I've been through quite a bit in the last six months. A lot of shit, for the most part, that I don't really feel like divulging just yet. Let's just say I am looking forward to a new year, a new me...hopefully even a new job and a new house. Anew keyboard wouldbe nice, too. (Damn you,spacebar!)

Stay tuned...

Wednesday, June 25, 2008

An update on the kids

I am not sure what I came here to write, so it should be interesting to see how this ends. I am so frustrated with myself for not blogging daily, or at least several times a week. My kids are growing and changing so much and crack me up everyday, I wish I could remember to come here and talk all about it. (Or find a quiet moment to do so.)

Callia had her dance recital the other night. It was so awesome!!! I was so proud of her. She didn't hestiate at all on that stage. I cried during her first performance. It was ballet and she looked so stinking cute up there. I did better for the tap performance and only got a little choked up, but at the end they came on stage and took a bow and it was adorable, I cried again. Then the entire group of dancers lined up behind the curtain and when it went up, she was right in the front, showing off her little trophy. She is so proud of that thing! It was a great night. :)

I can't believe she is turning 4 in just 4 more days. She is growing up way too fast and she is so smart and beautiful. As she talks to me sometimes, I can't believe what I am hearing. I feel like that can't be MY kid talking. She's not old enough to think of those things on her own or rationalize like that. For her birthday Sunday, we are having a beach party, per her request.

Kiefer has been talking a lot more. It's so cute to hear him say, "Thank you" without prompting after you hand him something. It's funny how kids learn to say thing the way you say them. I tend to emphasize the "you" and now he does, too. He also "talks" a lot, right at you, and expects you to understand every word he says. Most of the time I just nod and say, "Yeah?" and he says, "Mm-hmm." It's so precious.

But what a little stinker he is! He loves to throw things, especially food, and it drives me insane. He really tests our patience (he's quite good at this, actually) . As Corey puts it, when he is done with something, "he wants it out of his life." The other day he did this with his cup and hit the baby on the head with it. Before Corey (I wasn't there) could even react, Kiefer made a face like "Oh no!" with his mouth shaped like an O, looked at Corey then ran to the baby and kissed her forehead. He apparently knew he shouldn't have hit her with it and that was his way of apologizing.

Speaking of Cady, she is still progressing slowly. It's still hard to say how able-bodied she will be, but she has been trying a lot more lately. Her PT is in the process of getting her some adaptive equipment. Kind of makes it seem more real, like she truly is disabled, but I know it's best for her AND it doesn't stop me from continuing to hope she will walk on her own one day.

Two nights ago she ate some Gerber Puffs!! I was so proud of her! I couldn't believe how well she did. She did spit it out a few times, but I would just get it back in there for her and she chewed and swallowed about 8 of them. Then she was trying her darnedest to pick one up. She has also been reaching out a lot more for many other things, too, like toys and faces (particularly noses). I am hoping as she gets older, she will become more motivated to do things and try harder.

We are taking them to get their pictures taken on Sunday. We always take the kids in for pics on their birthdays, but I also figured for Cal's pics, we'll take a group photo. I have been debating which birthday I want to do it on, but Cal's seems like a good choice since it's the farthest away from Christmas, when I will likely have another one taken. But then Kiefer's seems like a good choice because then they will all have had birthdays and will officially be 4, 2 and 1. I dunno...I am still contemplating this, but I am leaning toward Cal's birthday.

Ok, Cady is "calling" me, so I must go. I'm really going to try and return soon. :)