So, if you've been keeping up, you know my CadyBug most likely has CP. A visit to the Follow-up Clinic in February told us this. We always knew it was possible, but considering how well she appeared to be doing, we didn't think it'd be too severe.
Well, last week we saw the neurologist (the same one who in January thought Cady could likely just "be a little clumsy") and she agreed with the neonatologist from the clinic: Cady's physical impairments are "significant."
I swear this child has something to prove. After the visit in February, she started reaching for things. Her head control got just a tiny bit stronger and she finally laughed! It's like she was just waiting for a good reason to show more signs of progress.
And now, after the visit to the neurologist, she has once again made great leaps in her therapy. She now reaches more than ever before (and quite purposefully, I might add) and according to one of her therapists (occupational), her legs aren't quite as tight as they were even last week.
I shot a video of her laughing and when she watches it, she laughs some more. She found Dora the Explorer hysterical the other day and when she sees Daddy after a long day of the kids and me, her face lights up. She is truly a gift.
Monday, May 12, 2008
Saturday, April 12, 2008
Calling to say happy birthday.
When I was 12-ish, I made friends with a boy named Donnie Tomasso. Donald L. Tomasso, Jr., to be proper. I have many fond memories of Donnie, some of which include a trip to the Boston Museum of Science and Park View dances. After junior high school, Donnie and I went to different high schools, but we stayed friends. We didn't talk too often throughout the year, just once in a while here and there. However, one thing was always a guarantee. Every year, Donnie knew with almost 100 percent certainty I would be calling him on January 15 to say, "Happy birthday."
Once, shortly after high school, I ran into him at the supermarket where he worked and he we started hanging around again (our friendship was always platonic). We spent many nights with a few of his friends and a couple of mine, just laughing and goofing off. That year, he even gave me a Christmas gift: a warm, fuzzy pair of orange and blue Goofy slipper socks. I still have them and how my husband hates them. He thinks they are ugly. I think they wonderful - so cozy and they have served me well on many a winter night.
Somehow, Donald and I lost touch. As a matter of fact, I ran into him one night at the Keg Room and he commented on how he hadn't heard from me that year. It was true. I don't recall why, but I hadn't called him to wish him a happy birthday. After that, the annual birthday wish stopped. Until last year that is (2007). I was sitting here at my computer doing some work and I realized the date - January 16. Though it was actually the day after his birthday, I remembered it was his special day and I decided to see if I could find him. I went to www.whitepages.com and sure enough, there was a listing in Taunton, Mass. I wasn't 100 percent sure it was him, but I knew he had gotten married in recent years since I saw the announcement in the paper. I checked the ProJo Web site for it and sure enough, his new bride was named Julie, the same name beside his in the phonebook.
I hesitated for a second, wondered what his wife might think of a strange woman calling him out of the blue, but I did anyway because I knew Donnie would love it. I knew it'd warm his heart and make him smile a little, knowing all these years later I hadn't forgotten his birthday. When I made the call, I was connected to whom I later learned was his mother-in-law. I told her who I was and why I was calling. She told me she was there babysitting the couple's young daughter. I was happy to hear he had a child. I asked her to pass along my birthday wishes and she promised she would.
A year went by and before I knew it, it was Donnie's birthday again, this time his 33rd. I thought about him several times during the day and finally, in the midst of all the chaos here in this house, I found a moment to sneak on the phone and make the call. I felt a little anxious as the phone was ringing and I actually was a little relieved to hear the answering machine pick up. I said, "Hi Donnie! It's Kelly calling to say happy birthday! I hope it's a good one! Maybe next year I'll get to talk to you. Hope you are well." I hung up the phone and smiled, knowing full well he'd come home to that message and know I still thought of him on his birthday each year.
This afternoon, my brother called me with a message from a friend he ran into last night. "Kelly," he said, "I ran into Erin Hicks last night and she told me to tell you Donnie Tomassa died." He was saying the name wrong, so part of me thought he was msitaken. He couldn't mean my friend Donnie. I said, "Who?" He said it again, "Donnie Tomassa." Now, you should know Erin was one of the friends that spent a lot of time hanging around with Donnie and me back in 1994. So, after a moment's hesitation, I knew what I was hearing. I said, "You mean Donnie Tomasso?" "Yes. That's it," he told me. He told me what Erin had told him - something about a pain in his side and internal bleeding. That was all I heard. Instead, I was thinking in my head about my annual phone calls and how I wished he had answered the phone when I called three months ago.
I felt my eyes well up with tears. I hung up with him and called Danika. I referred back to the same Web site I had last year to check for his wedding announcement for his obituary. There it was, his big smile and squinty eyes staring back at me. I read about his family, his young daughters, one of whom was described as infant. I wondered how old she was and in an instant my heart broke for them and I felt compelled to call his wife, whom I've never met but did hear Donnie mention once when I ran into him at the Keg Room years ago.
As the phone rang, my heart started racing. What would I say to her? Would she even be up for talking to me? The call was answered and I am pretty sure it was the same voice I heard a year and 3 months ago when I called the first time. "Is Julie there?" I asked. "Who's calling?" she asked. I told her who I was ("the crazy girl who calls Donald every year on his birthday) and that I had just heard the news of his death. I told her I felt the need to call Julie to offer my sympathies and asked if she might be willing or able to speak.
She asked me to hold and in a few seconds came back to tell me Julie was changing the baby's diaper, but that she would be right with me. My heart pounded even harder as I waited for her to pick up, but once she did, the words came naturally. I told her who I was and how I had just heard the news. I told her how sorry I was and asked how she was doing. She told me she was still in shock, but that she knew she would get through it since she has two daughters to care for.
We talked for a few minutes. I asked what happened and she told me he was sick for a week in the hospital and had undergone several surgeries. At first it was thought he had appendicitis, but in fact they learned he had several tumors on his kidneys and one ruptured. She said it was a very stressful time for her watching, her husband suffer like that, and in the end, she was actually relieved. Both of his kidneys were in failure and he would have lived his life on dyalisis - something she knew his fun-loving, free spirit would never have been able to endure.
We laughed about my annual calls and she told me I was right - he did get a kick out of them. I asked about the baby and she told me she was a newborn. I asked how new and she hesitated. I could tell I wasn't going to like what I heard. "Donnie died Sunday and Amanda was born Monday morning." I nearly lost my composure right there, but I kept it together for her sake. Every part of me wanted to reach through the phone and give her the biggest hug I could. She told me she was induced shortly after he died and, to add insult to injury, her birthday was the day before he died.
I wasn't sure what else to say to her. After a brief pause, I said this: "I know you don't know me and I don't know what I could possibly do for you, but if there is anything you need, I don't know what, but --"
"Actually, Kelly, there is something you can do for me," she said.
"Sure. Anything," I answered, not sure what she was going to say.
"Call me every year on his birthday," she said, choking on tears.
"I will," I said, as I swallowed my own, "I promise."
And I will.
Rest in peace, my dear friend, Donnie. You will be missed.
1/15/75 - 4/6/08
Once, shortly after high school, I ran into him at the supermarket where he worked and he we started hanging around again (our friendship was always platonic). We spent many nights with a few of his friends and a couple of mine, just laughing and goofing off. That year, he even gave me a Christmas gift: a warm, fuzzy pair of orange and blue Goofy slipper socks. I still have them and how my husband hates them. He thinks they are ugly. I think they wonderful - so cozy and they have served me well on many a winter night.
Somehow, Donald and I lost touch. As a matter of fact, I ran into him one night at the Keg Room and he commented on how he hadn't heard from me that year. It was true. I don't recall why, but I hadn't called him to wish him a happy birthday. After that, the annual birthday wish stopped. Until last year that is (2007). I was sitting here at my computer doing some work and I realized the date - January 16. Though it was actually the day after his birthday, I remembered it was his special day and I decided to see if I could find him. I went to www.whitepages.com and sure enough, there was a listing in Taunton, Mass. I wasn't 100 percent sure it was him, but I knew he had gotten married in recent years since I saw the announcement in the paper. I checked the ProJo Web site for it and sure enough, his new bride was named Julie, the same name beside his in the phonebook.
I hesitated for a second, wondered what his wife might think of a strange woman calling him out of the blue, but I did anyway because I knew Donnie would love it. I knew it'd warm his heart and make him smile a little, knowing all these years later I hadn't forgotten his birthday. When I made the call, I was connected to whom I later learned was his mother-in-law. I told her who I was and why I was calling. She told me she was there babysitting the couple's young daughter. I was happy to hear he had a child. I asked her to pass along my birthday wishes and she promised she would.
A year went by and before I knew it, it was Donnie's birthday again, this time his 33rd. I thought about him several times during the day and finally, in the midst of all the chaos here in this house, I found a moment to sneak on the phone and make the call. I felt a little anxious as the phone was ringing and I actually was a little relieved to hear the answering machine pick up. I said, "Hi Donnie! It's Kelly calling to say happy birthday! I hope it's a good one! Maybe next year I'll get to talk to you. Hope you are well." I hung up the phone and smiled, knowing full well he'd come home to that message and know I still thought of him on his birthday each year.
This afternoon, my brother called me with a message from a friend he ran into last night. "Kelly," he said, "I ran into Erin Hicks last night and she told me to tell you Donnie Tomassa died." He was saying the name wrong, so part of me thought he was msitaken. He couldn't mean my friend Donnie. I said, "Who?" He said it again, "Donnie Tomassa." Now, you should know Erin was one of the friends that spent a lot of time hanging around with Donnie and me back in 1994. So, after a moment's hesitation, I knew what I was hearing. I said, "You mean Donnie Tomasso?" "Yes. That's it," he told me. He told me what Erin had told him - something about a pain in his side and internal bleeding. That was all I heard. Instead, I was thinking in my head about my annual phone calls and how I wished he had answered the phone when I called three months ago.
I felt my eyes well up with tears. I hung up with him and called Danika. I referred back to the same Web site I had last year to check for his wedding announcement for his obituary. There it was, his big smile and squinty eyes staring back at me. I read about his family, his young daughters, one of whom was described as infant. I wondered how old she was and in an instant my heart broke for them and I felt compelled to call his wife, whom I've never met but did hear Donnie mention once when I ran into him at the Keg Room years ago.
As the phone rang, my heart started racing. What would I say to her? Would she even be up for talking to me? The call was answered and I am pretty sure it was the same voice I heard a year and 3 months ago when I called the first time. "Is Julie there?" I asked. "Who's calling?" she asked. I told her who I was ("the crazy girl who calls Donald every year on his birthday) and that I had just heard the news of his death. I told her I felt the need to call Julie to offer my sympathies and asked if she might be willing or able to speak.
She asked me to hold and in a few seconds came back to tell me Julie was changing the baby's diaper, but that she would be right with me. My heart pounded even harder as I waited for her to pick up, but once she did, the words came naturally. I told her who I was and how I had just heard the news. I told her how sorry I was and asked how she was doing. She told me she was still in shock, but that she knew she would get through it since she has two daughters to care for.
We talked for a few minutes. I asked what happened and she told me he was sick for a week in the hospital and had undergone several surgeries. At first it was thought he had appendicitis, but in fact they learned he had several tumors on his kidneys and one ruptured. She said it was a very stressful time for her watching, her husband suffer like that, and in the end, she was actually relieved. Both of his kidneys were in failure and he would have lived his life on dyalisis - something she knew his fun-loving, free spirit would never have been able to endure.
We laughed about my annual calls and she told me I was right - he did get a kick out of them. I asked about the baby and she told me she was a newborn. I asked how new and she hesitated. I could tell I wasn't going to like what I heard. "Donnie died Sunday and Amanda was born Monday morning." I nearly lost my composure right there, but I kept it together for her sake. Every part of me wanted to reach through the phone and give her the biggest hug I could. She told me she was induced shortly after he died and, to add insult to injury, her birthday was the day before he died.
I wasn't sure what else to say to her. After a brief pause, I said this: "I know you don't know me and I don't know what I could possibly do for you, but if there is anything you need, I don't know what, but --"
"Actually, Kelly, there is something you can do for me," she said.
"Sure. Anything," I answered, not sure what she was going to say.
"Call me every year on his birthday," she said, choking on tears.
"I will," I said, as I swallowed my own, "I promise."
And I will.
Rest in peace, my dear friend, Donnie. You will be missed.
1/15/75 - 4/6/08
Thursday, March 27, 2008
Check out CadyBug Designs!!
As you might know already, I am in the process of starting my own business doing birth announcements, invitations, photo cards, etc. It's something I've enjoyed doing for a while, but only recently have a I decided to try and start a business making money off of it.
I already have my Web site started and it's under construction by my niece's father. I got lucky that Rich likes to develop sites, but he's still new at it so he enjoys the practice. Fine by me. I can't do it at all, so he's already better than what I could've done.
In the meantime, I have a MySpace page set up at www.myspace.com/cadybugdesigns. Please check it out and pass me on to all your family and friends. I really am anxious and excited to get this thing going!!
I already have my Web site started and it's under construction by my niece's father. I got lucky that Rich likes to develop sites, but he's still new at it so he enjoys the practice. Fine by me. I can't do it at all, so he's already better than what I could've done.
In the meantime, I have a MySpace page set up at www.myspace.com/cadybugdesigns. Please check it out and pass me on to all your family and friends. I really am anxious and excited to get this thing going!!
South Carolina, here we come!
A couple of years ago, and again last spring, Corey and I talked about possibly moving to one of the Carolinas. The only thing stopping me from really wanting to just go for it was my family. I didn't want to take my kids away from my parents and sister and vice versa. Of course I'd miss them (all of them-not just my parents and Kerri), but I knew I'd be ok if I didn't see them all the time. My kids on the other hand, that I wasn't too sure about.
But then last week, I started thinking about it again. New England is just too damn expensive - not to mention COLD! I am sick of the winter and tired of being cooped up in the house with my kids all day. I want to get out and enjoy the outdoors. Go for walks, have picnics or just lounge in the sun. Here, winter comes in November and stays through April. We spend 6 motnhs of the years waiting for the other six months. Bah!
Oh, but in South Carolina. Shorter winters, barely any snow (I HATE SNOW!) and beautfiul 75* days in April and November. Average highs of 55 in February. Ahh...that's what I am talking about.
And the housing! Goodness! I did a search with our criteria in some towns around here and one hit for a dump in Warwick. In South Carolina, tons of them. You wouldn't believe the house I saw today for $129,900. I sent C the link and we both fell in love.
Of course, that house is out of the question. We won't be making this trek until after next tax season. We have a few things to set in place first, so that is looking like the time we will go. We can't wait!!!
But then last week, I started thinking about it again. New England is just too damn expensive - not to mention COLD! I am sick of the winter and tired of being cooped up in the house with my kids all day. I want to get out and enjoy the outdoors. Go for walks, have picnics or just lounge in the sun. Here, winter comes in November and stays through April. We spend 6 motnhs of the years waiting for the other six months. Bah!
Oh, but in South Carolina. Shorter winters, barely any snow (I HATE SNOW!) and beautfiul 75* days in April and November. Average highs of 55 in February. Ahh...that's what I am talking about.
And the housing! Goodness! I did a search with our criteria in some towns around here and one hit for a dump in Warwick. In South Carolina, tons of them. You wouldn't believe the house I saw today for $129,900. I sent C the link and we both fell in love.
Of course, that house is out of the question. We won't be making this trek until after next tax season. We have a few things to set in place first, so that is looking like the time we will go. We can't wait!!!
Not sure I can make this work
I really wanted to do this whole "blogging thing," but so far, I suck at it. I never have the time to sit and think during the day to write anything even remotely interesting, funny or charming and at night I am too tired to write anything even remotely interesting, funny or charming. I'm going to keep plugging away at it though, and we'll see how it goes.
Sunday, March 2, 2008
Adios, Diego!
My son is many things. Funny is pretty close to the top of that list.
All three of my kids are in bed, but about a half-hour ago, I heard the toilet seat slam shut. I get up to investigate, even though I was nearly certain what was happening. Kiefer has a rotten habit of tossing things into the toilet and as I walked up the stairs, I could only imagine what I might find. Sure enough, just as I reached the top, Kiefer came running at me full steam ahead with a huge grin on his face, shouting the same "word" over and over. I knew it was one I should know, but I just couldn't make it out.
As I walked past him to the bathroom, he followed closely behind me, still shouting this incomprehensible word. I opened the seat, fully expecting to see a block, perhaps a Little People character - I don't know. Something small resting at the bottom. Oh no...I did not.
Instead, I find his talking Diego doll, floating face up. Then, he shouts it again, "Yogok!" Kiefer for Diego. (Although, I could be making that up. The actual word escapes me now, so that one will work for now.) I pick Yogok up out of the toilet and press his tummy to see if he still works. "HOLA! I'm Diego!" Kiefer's smile turns into a frown and he backs up a few feet. Too tired to deal with it, I place Diego on the counter, wash my hands and usher Kiefer out the door. Just as I am about to close it, Diego yells, "Adios!" Kiefer, all smiles again as he has realized Diego is getting left behind, does a half turn, waves to the door and says, "Adio, Yogok!"
About five minutes ago, it dawned on me. That Diego doll was sitting on the shelf near his bed. I can confidently say Kiefer got tired of the toy staring at him and decided he'd take care of him once and for all.
All three of my kids are in bed, but about a half-hour ago, I heard the toilet seat slam shut. I get up to investigate, even though I was nearly certain what was happening. Kiefer has a rotten habit of tossing things into the toilet and as I walked up the stairs, I could only imagine what I might find. Sure enough, just as I reached the top, Kiefer came running at me full steam ahead with a huge grin on his face, shouting the same "word" over and over. I knew it was one I should know, but I just couldn't make it out.
As I walked past him to the bathroom, he followed closely behind me, still shouting this incomprehensible word. I opened the seat, fully expecting to see a block, perhaps a Little People character - I don't know. Something small resting at the bottom. Oh no...I did not.
Instead, I find his talking Diego doll, floating face up. Then, he shouts it again, "Yogok!" Kiefer for Diego. (Although, I could be making that up. The actual word escapes me now, so that one will work for now.) I pick Yogok up out of the toilet and press his tummy to see if he still works. "HOLA! I'm Diego!" Kiefer's smile turns into a frown and he backs up a few feet. Too tired to deal with it, I place Diego on the counter, wash my hands and usher Kiefer out the door. Just as I am about to close it, Diego yells, "Adios!" Kiefer, all smiles again as he has realized Diego is getting left behind, does a half turn, waves to the door and says, "Adio, Yogok!"
About five minutes ago, it dawned on me. That Diego doll was sitting on the shelf near his bed. I can confidently say Kiefer got tired of the toy staring at him and decided he'd take care of him once and for all.
Saturday, March 1, 2008
Bad news AND a bad day for Cady and me.
I've been keeping this mostly to myself for a couple of days, but I feel it's time to share. We had an absolutely awful day on Thursday.
Cady was seen by a neonatologist for a follow up. (The hospital where she was born has a follow-up clinic where they follow the progress of all babies who spend time in the NICU.) As we are going through the exam, the neonatologist is asking me all the usual questions and he asked me what her neurologist told me. I reported to him that she told me that while she can't say for certain what her future will be like, she is encouraged by her progress so far and she might just be "clumsy." He seemed somewhat surprised by that and said he believed that was a "gross understatement" and asked if anyone had ever mentioned Cerebral Palsy to me. I said they had while she was in the NICU, but not since then. I said, "Why? You think she has it?" He said, "Oh yes."
Now, at first I wasn't too fazed by that. Technically, if you look at it's definition (Cerebral palsy (CP)is an umbrella term encompassing a group of non-progressive,[1] non-contagious condition that cause physical disability in human development. - Wikipedia), she does have it. Her condition isn't going to worsen, is not contagious and her physical development is impaired. However, as we were talking, he really began to upset me. He seemed nearly certain she has CP and came short of giving her an official CP diagnosis. I asked if she would likely have a mild case and, not in these words, he told me while it was possible, it was probably hoping for too much and that her case would likley be too severe to be classified as "mild." He said at this point she should have full head control and the tightness in her arms and legs were of a serious concern to him. Umm...ok...?
We knew this was possible, but considering how well she appears to be doing, I was somewhat shocked and, naturally, very upset. Her PT thinks she is making great strides, her doc thought she looked great at her 6 month check-up and I have noticed some big improvements in her all around. Therefore, I am trying not to put too much weight in what this doctor said. This was only the second time he's seen her and it was just a snapshot. We had woken her up for the exam and so she was tired and getting hungry. He did say he could be wrong and he hoped he was. He said we are doing everything we can for her now so to keep doing what we are doing and come back in 6 months. Even though we are trying to stay positive, I am really having a tough time dealing with this.
If that weren't enough, the day actually got worse after that.
When we got home, it was total chaos. Cady was supposed to have eaten at 11, but we didn't leave the doc's office until almost 1. As soon as we got out to the car, I started her feeding, but when we got home, I paused the pump for a minute so I could bring everyone in the house. Once we were in, everyone was up in arms. Kiefer was screaming and clawing at me for no reason, Callia was bugging me about something, and Cady was crying to get out of her seat. I unbuckled her and in my haste, forgot to check where the extension attached to her button was (we are usually very mindful of it when picking her up and moving her around). As soon as I realized what I did, it was too late. It got caught on the little slits where the seatbelt would go were you to not use a base and ripped right out of her belly. For those of you who don't know, the way the button works is there is a narrow piece with a balloon on the end that you stick in the hole in her belly. Once it is in you, you fill the balloon with water and that is what holds it in place and keeps it from coming out of her belly. The size of the inflated balloon is about that of a quarter. It, in tact, came right out of her belly. Cady didn't skip a beat. I swear she didn't even feel it. She was happy and smiling and, to be honest, I think she enjoyed the few hours it was out.
Oh yes, I said a FEW HOURS.
After it came out, I had to hold my hand over her belly because I didn't want that little bit of formula that she had to leak out. So, one-handed, I try to get everything together to replace it. Kiefer is STILL screaming, as he was tired and hungry, as well, and I just can't do it. Luckily, I knew my sister was in the neighborhood visiting a friend, so I called her and asked her to come by and help me. When she got here, I had her hold her hand on Cady's belly while I got everything together. When I went into the box to get the new button, I found that it was gone. Now, I had opened the package a few weeks ago to use the extension that was in there since we were out of new ones and I needed one. I looked all around for it, but it was nowhere to be found. I figured it had somehow gotten lost since I opened the package.
I call the medical supply company to ask if they can get me a new one. They looked and it was in stock. I taped gauze pads on Cady's belly, left the kids with my sister and drove to get the new one. That took a little more than a half-hour, so all said, it had been just over an hour by the time I tried putting the new one in since it came out. Well, try as we did, Kerri and I could not get the button in. It was too soft and kept slipping all over the place. I call the surgeon's office and they tell me to come in.
So now I have to wake a miserable, sleeping Kiefer to get him in my sister's car. She was going to watch them, but she had to get home to her daughters since her fiance had to go to work. (Oh, and as we were walking out my front door, I found the missing button on the floor.) We get to the doc's office and wait ANOTHER hour and a half to be seen. At this point it's been out for more than 3 hours. And guess what? He can't get it in either. So, the plan of action is to insert a smaller catheter into the hole and increase it in size until we dilate the hole to the size of her button. The first one goes in fine. The second one she whined a bit but it was ok. The third one, which was the same size as the button, wouldn't go in. Becauase they are soft, it kept slipping and sliding. So he goes and gets some harder stick-like catheter that won't move when you pierce it in and he jammed it into the hole. O...M..G. I never, IN MY LIFE, heard any child of mine scream the way this child did. I am usually pretty good at dealing with seeing my kids in pain (like stuff like shots doesn't really bother me), but it was all I could do to not cry. So after he gets that in, he goes to put the button in. She is SCREAMING and wiggling all about. I hold her legs down while looking in the opposite direction. He tries and tries and once he stops, I assume it's in. I look over and not only was he not successful, there is a small pool of blood about the size of a nickel on her belly. He assures me this is normal and we try again. This time I won't look until he tells me it is in, tears welling in my eyes.
After we are done, Cady, who at this point still hasn't eaten since 8 a.m., except for that little bit she got in the car on the way home from the Follow-up Clinic, screams for another 45 minutes before passing out. I felt so bad for her. I gave her some pain reliever once we got home and in the morning, she seemed fine.
Gah!!
Subscribe to:
Posts (Atom)
