Wow, just went from major high to major low in a period of less than 24 hours. First the good stuff or else I'll forget. Olin and I had a fun date night on Friday. We checked out "The Social Network" at the dollar theater (I'll never go anywhere else again) and then went to Marlow's Tavern for a drink. It was nice just being the two of us and not having to worry about rushing home to the baby. I don't think we've enjoyed that much uninterrupted conversation in a long time. The weather was so gorgeous outside this weekend, I had to put on my shoes and go to the Roswell Rec for a run on Saturday. It's been a long time since I've done that. It was so nice even though I realized my 45 minutes or so on the treadmill is nothing compared to actually running outside...a little wake up call there. Saturday night was spent with fantastic friends. We hung out in Brookhaven and it turned into a slumber party. So fun to just be with the girls for a night with no responsibilities : )
The good times couldn't last forever though, right? Logan started getting a runny nose/congestion/watery eye when he got home on Sunday. I hoped it was just from being a little tired from his fun weekend with the grandparents. But, Olin said that he was grabbing his ear that night when he was having his bottle. I was praying that he would be well enough to take to Sally's in the morning because it is so hard to get a sub and make lesson plans at the last minute. Well, Logan did not go to sleep last night until like 11:30 (started at 7:00). Everytime he would get close, he'd wake himself up with snot bubbles or choking on his phlem (sorry). By 5:30 A.M. he was awake with one eye completely crusted shut. I should have just called in right then, but it didn't seem to bother him; he was all smiles. I just wiped it off. Well, Sally emailed me around 10:00 and said he just wasn't having it today! I knew it must have been bad if she was calling me at school. I gave a quick call to the pediatrician, and we were in at 1:45. Diagnosis: ear infection and pink eye. So fun. Hopefully, with these antibiotics he'll be feeling better quickly. Luckily, Olin is going to be able to stay home with him tomorrow. So, that was the double whammy. There's still more.
We've been waiting since last week for the results of Logan's biopsy. This was to determine if he has Hirschprung's disease. The surgeon even said we were basically doing this last biopsy to confirm that he did not have it. Since the biopsy, Logan has been "going" regularly, so we've been really optimistic. Well, the doctor and I finally stopped playing phone tag today. I think he called around 4:30 or so. And, basically Logan's biopsy showed no ganglion cells (these are needed to move things along in the system) and large nerve trunks...both indicators of Hirschprung's. The doctor said he was shocked; he'd been sure that Logan didn't have it. I kept telling the doctor how much Logan has been going and he said it is probably just a temporary side effect from the biopsy. I'll leave out all the fun medical terms, but you get the idea. Anyways, where we're at now, the surgeon wants to see us back in 4-6 weeks if he is continuing his pooping party, and in 1-2 if he doesn't and things taper off like before. If this is the case, he thinks Logan will need the "pull through" surgery to treat the Hirschprung's. I'm too tired to explain the surgery, but it's not pretty. You can look it up. I just don't know what we're going to do. Obviously, nothing is happening immediately and we have a million questions still to be answered. We've read that with the surgery it's not a 100% guarantee that he won't still need other "assistance" to help him go #2. Is the surgery and the risk worth it then? So, right now it's just a waiting game to see if the diapers keep filling up. We hope so. Triple whammy today. And it was raining ...what a sucky Monday : (
Monday, January 31, 2011
Friday, January 28, 2011
Bittersweet
It's always the same bittersweet feeling when Logan's grandparents take him for the weekend. At first, I'm so excited to have some extra time to catch up on things around the house, grade papers, do my school work, work out, etc. (not that all of those things get done by any means because I usually end up sleeping for most of the weekend). But as soon as Granddad pulls out of the driveway, an emptiness hits me. I go back inside and wonder what to do with myself (see, none of the above have come into my mind again). At least this time, I have decided to blog. That's productive, right? The house is quiet and there isn't the guilty feeling of being on the computer or doing something other than being on the floor with Logan working on his exercises. When we're home I feel like we always need to be working with him on something to help him develop. I feel guilty when we put him in the walker or jumperoo. It's like we're wasting valuable time and we won't be able to get those minutes back or something.
I guess after his first surgery when he was a baby, I feel like I "babied" him even more than the normal mom. I held him alot and all that time I was home on maternity leave, I remember days and days of just holding him, feeding him, changing him, and watching reruns on Bravo. I still have some guilt about this. Can you tell? One, we probaby should have been watching Sprout or some Baby Einstein movie. Two, I should have put him down more and let him explore. I waited so long to even put him in the walker or jumper. I guess it's hard to remember now, but I must have thought he wasn't ready for those things. He still had bad reflux in the beginning...exorcist style. And he didn't reach for any toys on his own. His arms were pretty much glued to his sides and his fists in balls for the first 7 months of his life. We kind of joked about it at first...he was just tense like his Grumps. But, after a while it started to worry me. We went to story time and swim lessons over the summer. We also joined a play group (which we've since been kicked out of for lack of participation : ) I could tell Logan was different from the other babies. The biggest difference was in his lack of physical movement. At swim lessons, he wouldn't swim out after a toy in the water. At the playgroup, he still needed me to hold him up in the sitting position. I remember trying to compensate and cover up for the things he wasn't doing. You know, instead of putting him down on the floor, I'd just hold him and say he was tired or something. At swim lessons, the water was too cold. I guess it was some denial or fear or the dreaded comparing done by all moms! You can't escape that.
In August, Sally, our babysitter, had an old friend come visit at her house. This woman works in the medical field (I'm not sure her exact role). I think she trains pediatrians about the latest research. Something like that. Anyways, when I went to pick up Logan one day, Sally told me she wanted to tell me something, but wasn't exactly sure how. Finally, she said that when her friend arrived, she took one look at Logan and asked if he had been to see a developmental pediatrician yet. Sally said no, I don't think so. Why? The woman began to point out little things about him that seemed a bit off to her...his thick neck fold behind his head, the protruding bones around his skull, and the balled up fists. That's all I can remember now. The details weren't important anymore. I was scared. It was just like a pit in my stomach, someone finally confirming what I thought all along, something was different about this sweet boy. My mom asked me a couple of months ago if I knew something was wrong from the beginning. I told her yes. I can't really explain it. Maybe a mother just knows. I can't believe I'm writing this, but I guess it's part of the therapy. When Logan came out and I first saw him, I knew something was not right. At first I was just thrilled that he didn't have Down Syndrome. There were little indicators throughout my pregnancy that had us scared. We actually met with a genetic counselor around 6 months because we had some gray areas on some test that showed in the future we could pass along Fragil X Syndrome. From the ultrasounds, we also knew our little baby had a little spot on his heart and fluid in his kidneys. It was just the collection of these little things that everyone said was "probably nothing" that had us scared already. Yet, when he came there was some relief that he was not Downs. I know I'm supposed to say that my baby was the cutest thing that I had ever laid eyes on, but it was sort of wierd. He looked like a little old man. His chin was very prominent and he had so much extra skin ( I know this can be normal for babies, but it was alot). I'm sure I sound like the worst mother saying this, but I promised myself I'd be truthful here. And then, there were his turned up ears. Like I said before, we tried to joke that it was just because he didn't have enough room in my belly and they were probably squished. I don't know who really believed this and who didn't. Then, as the nurse was giving him his first bath, she said, " Has anyone noted that his penis and scrotum are fused together?" I know it sounds way worse than it looked. In fact, he's already had his "boys" fixed and he's good as new down there : ) But for a new mother, it just seemed like everything was stacking up against this little boy. I was positive that I was going to cry when I delivered him. But I didn't. I didn't cry after he was handed to me either. Maybe this is the same with other moms too? (I hope) Shocked would be a good word for it..when the past 10 months finally deliver what you've been waiting for all this time. One minute you're just another pregnant woman, the next you're a mother. It kind of makes me sad when I think about all of this. While we were in the hospital, a geneticist came to look over Logan. She did a few tests, one of which tests for like the 200 most common genetic syndromes. That came back normal. Yeah, Mowat-Wilson wasn't on that list of 200. This woman also wrote up an 8 page summary of her evaluation of Logan. Page after page went on about all of his little defects...fused penis, turned up ears, small head, odd shaped head, VSD (small hole in his heart). It was so devastating to see this list of imperfections of my newborn baby. Wasn't he just supposed to come out perfect and we could take him home? Well, we did take him home, and things were fine for about a week. He didn't nurse well so I was in the never ending cycle of trying to feed, giving up and pumping, feeding again, sleeping for an hour, and doing it all again. Exhausting. They sure don't tell you all about this stuff when you're pregnant! Fast forward, and we returned to the hospital at day 10 because Logan would not eat or keep anything in his stomach. That's when we were given the option to proceed with exploratory surgery or else. I think I wrote all about that fun adventure already.
Wow, I really got off track somewhere a few paragraphs ago. How did this start? Oh yeah, I was sad that Logan is gone and the house is empty. He's just a part of me now. Nothing I ever do is done without thinking of him first. How will he be affected? I know everyone said it to me while I was pregnant, but motherhood changes you forever. That is a fact.
P.S. Don't get me wrong...I am now like every other mom and think my baby is the cutest one in the whole wide world!!!
I guess after his first surgery when he was a baby, I feel like I "babied" him even more than the normal mom. I held him alot and all that time I was home on maternity leave, I remember days and days of just holding him, feeding him, changing him, and watching reruns on Bravo. I still have some guilt about this. Can you tell? One, we probaby should have been watching Sprout or some Baby Einstein movie. Two, I should have put him down more and let him explore. I waited so long to even put him in the walker or jumper. I guess it's hard to remember now, but I must have thought he wasn't ready for those things. He still had bad reflux in the beginning...exorcist style. And he didn't reach for any toys on his own. His arms were pretty much glued to his sides and his fists in balls for the first 7 months of his life. We kind of joked about it at first...he was just tense like his Grumps. But, after a while it started to worry me. We went to story time and swim lessons over the summer. We also joined a play group (which we've since been kicked out of for lack of participation : ) I could tell Logan was different from the other babies. The biggest difference was in his lack of physical movement. At swim lessons, he wouldn't swim out after a toy in the water. At the playgroup, he still needed me to hold him up in the sitting position. I remember trying to compensate and cover up for the things he wasn't doing. You know, instead of putting him down on the floor, I'd just hold him and say he was tired or something. At swim lessons, the water was too cold. I guess it was some denial or fear or the dreaded comparing done by all moms! You can't escape that.
In August, Sally, our babysitter, had an old friend come visit at her house. This woman works in the medical field (I'm not sure her exact role). I think she trains pediatrians about the latest research. Something like that. Anyways, when I went to pick up Logan one day, Sally told me she wanted to tell me something, but wasn't exactly sure how. Finally, she said that when her friend arrived, she took one look at Logan and asked if he had been to see a developmental pediatrician yet. Sally said no, I don't think so. Why? The woman began to point out little things about him that seemed a bit off to her...his thick neck fold behind his head, the protruding bones around his skull, and the balled up fists. That's all I can remember now. The details weren't important anymore. I was scared. It was just like a pit in my stomach, someone finally confirming what I thought all along, something was different about this sweet boy. My mom asked me a couple of months ago if I knew something was wrong from the beginning. I told her yes. I can't really explain it. Maybe a mother just knows. I can't believe I'm writing this, but I guess it's part of the therapy. When Logan came out and I first saw him, I knew something was not right. At first I was just thrilled that he didn't have Down Syndrome. There were little indicators throughout my pregnancy that had us scared. We actually met with a genetic counselor around 6 months because we had some gray areas on some test that showed in the future we could pass along Fragil X Syndrome. From the ultrasounds, we also knew our little baby had a little spot on his heart and fluid in his kidneys. It was just the collection of these little things that everyone said was "probably nothing" that had us scared already. Yet, when he came there was some relief that he was not Downs. I know I'm supposed to say that my baby was the cutest thing that I had ever laid eyes on, but it was sort of wierd. He looked like a little old man. His chin was very prominent and he had so much extra skin ( I know this can be normal for babies, but it was alot). I'm sure I sound like the worst mother saying this, but I promised myself I'd be truthful here. And then, there were his turned up ears. Like I said before, we tried to joke that it was just because he didn't have enough room in my belly and they were probably squished. I don't know who really believed this and who didn't. Then, as the nurse was giving him his first bath, she said, " Has anyone noted that his penis and scrotum are fused together?" I know it sounds way worse than it looked. In fact, he's already had his "boys" fixed and he's good as new down there : ) But for a new mother, it just seemed like everything was stacking up against this little boy. I was positive that I was going to cry when I delivered him. But I didn't. I didn't cry after he was handed to me either. Maybe this is the same with other moms too? (I hope) Shocked would be a good word for it..when the past 10 months finally deliver what you've been waiting for all this time. One minute you're just another pregnant woman, the next you're a mother. It kind of makes me sad when I think about all of this. While we were in the hospital, a geneticist came to look over Logan. She did a few tests, one of which tests for like the 200 most common genetic syndromes. That came back normal. Yeah, Mowat-Wilson wasn't on that list of 200. This woman also wrote up an 8 page summary of her evaluation of Logan. Page after page went on about all of his little defects...fused penis, turned up ears, small head, odd shaped head, VSD (small hole in his heart). It was so devastating to see this list of imperfections of my newborn baby. Wasn't he just supposed to come out perfect and we could take him home? Well, we did take him home, and things were fine for about a week. He didn't nurse well so I was in the never ending cycle of trying to feed, giving up and pumping, feeding again, sleeping for an hour, and doing it all again. Exhausting. They sure don't tell you all about this stuff when you're pregnant! Fast forward, and we returned to the hospital at day 10 because Logan would not eat or keep anything in his stomach. That's when we were given the option to proceed with exploratory surgery or else. I think I wrote all about that fun adventure already.
Wow, I really got off track somewhere a few paragraphs ago. How did this start? Oh yeah, I was sad that Logan is gone and the house is empty. He's just a part of me now. Nothing I ever do is done without thinking of him first. How will he be affected? I know everyone said it to me while I was pregnant, but motherhood changes you forever. That is a fact.
P.S. Don't get me wrong...I am now like every other mom and think my baby is the cutest one in the whole wide world!!!
Monday, January 24, 2011
Biopsies and Bloody Noses
Lots to update since last time...Logan's procedure went well on Friday. The alarm clock went off pretty early (especially for Olin). We had to be at Scottish Rite by 6:30 A.M. Our nurses and doctors were great. Logan didn't mind too much being awake with no food. He started getting restless by about 8:00, but they actually started twenty minutes early so he was okay. He's such a little person now. Last night I asked my sister if I could still call him my baby since he's one, and she said yes. So I will probably call him Baby Logan until he's 10! I still have this vision in my head of him tucked under the sheet and being rolled down the hallway. He had this little purple hospital gown (I think that's the first time he's ever worn purple!) and his little arms were sticking up over the blanket. If he hadn't been getting ready to go under, I would've taken a picture. It was pretty cute. They didn't let Olin or I back during the anesthesia this time...probably for the best. So, Olin and I went down to the cafeteria and had some breakfast, caught up on SportsCenter. I don't know...I guess since this is the fourth time Logan's been under anesthesia or sedation, and he's handled it so well, we weren't too worried. We just tried to pass the time as quickly as we could.
The procedure was done in about an hour and a little after that they brought Logan back to us. I hate nothing more than IVs in the hand. I remember having my gallbladder taken out and they had to put an IV in my hand. I wanted to pass out. I'd rather give birth than get an IV put in. Logan was pretty out of his element when he got back to us. He wouldn't drink the apple juice they gave us so he couldn't have his formula yet. Poor guy was just screaming his head off. I get so flustered when he cries like that because it happens so infrequently. He eventually burped a bunch, so I think he just had some bubbles that were hurting him. Then, as if on command, he took a really big poop. I promise I will not write all about poop all of the time, but poop is pretty exciting to us right now. Anyways, we finally got out of there by about 11:30. Not too bad. We got home, Logan took another poop ; ) and all three of us sacked out on the couch. Oh, how I have missed my naps! People who know me know how important naps used to be in my life. I rarely went a day without one. This 3 hour siesta was incredible!
Saturday was a pretty regular day. Olin did "man" stuff in the yard, like using a machete to hack down some briars by the creek. He's been wanting soooo badly to use the chainsaw to cut down the dying Bradford Pears in our yard, but I insisted he have a buddy come help him out. The last thing I want to do is spend the afternoon in the ER because of a chainsaw accident. Fastforward to about 10:30 that night. Olin was out at a work get together. Logan was having a hard time settling down (very unlike him). I'm blaming it on the anethesia or maybe teething (poor baby is still gummy and toothless) but he would not calm down. The usual tricks were not working. As I bent down to pull him out of the crib, something whacked me across the nose...his head, a hand, I'm not sure. But as soon as I sat down to feed him a little, I felt my nose dripping. Although it was dark, I could still make out the blood. My first bloody nose via Baby Logan. One of the people we have met through out Mowat-Wilson support group on google, said her husband bought her a hockey mask to protect her face (and nose job) because her little girl can be aggressive sometimes. Logan didn't mean to do it this time, but is sure did hurt. While trying to hold up his bottle, all I could think was "Please God, do not let blood get on our white carpet and chair." Luckly, he answered my pray! I did, however, drip some on to Logan's hand, and of course by the time I got something to wipe it up with, he had put his face right in it. It looked like someone had given him a bloody lip! Still unsettled, I took him to our bed to see if SportsCenter might do the trick (it usually does). No such luck. Finally, I called Olin and pleaded "Please come home." Well, those might not have been my exact words : ) but he did come home (with Tylenol) and eventually Logan fell asleep for the night. Phew...it was some night.
Even today though, he seems to be a bit out of sorts. Sally, his babysitter, agreed. Hopefully, all of the anesthesia or whatever it is will run its course. Logan's grandparents are planning to kidnap him for the weekend so I hope he's back to his normal self by then. A totally free weekend is ahead. So far Olin and I have established a date night for Friday. I'm not sure I remember what that is. We've definitey gone out without Logan plenty of times, but it's always for a party or a wedding. Friday is just for us. I'm really looking forward to it. Hopefully, biopsy results will be in tomorrow. We are very optimistic about not having to do another surgery, but we'll know for sure soon!
The procedure was done in about an hour and a little after that they brought Logan back to us. I hate nothing more than IVs in the hand. I remember having my gallbladder taken out and they had to put an IV in my hand. I wanted to pass out. I'd rather give birth than get an IV put in. Logan was pretty out of his element when he got back to us. He wouldn't drink the apple juice they gave us so he couldn't have his formula yet. Poor guy was just screaming his head off. I get so flustered when he cries like that because it happens so infrequently. He eventually burped a bunch, so I think he just had some bubbles that were hurting him. Then, as if on command, he took a really big poop. I promise I will not write all about poop all of the time, but poop is pretty exciting to us right now. Anyways, we finally got out of there by about 11:30. Not too bad. We got home, Logan took another poop ; ) and all three of us sacked out on the couch. Oh, how I have missed my naps! People who know me know how important naps used to be in my life. I rarely went a day without one. This 3 hour siesta was incredible!
Saturday was a pretty regular day. Olin did "man" stuff in the yard, like using a machete to hack down some briars by the creek. He's been wanting soooo badly to use the chainsaw to cut down the dying Bradford Pears in our yard, but I insisted he have a buddy come help him out. The last thing I want to do is spend the afternoon in the ER because of a chainsaw accident. Fastforward to about 10:30 that night. Olin was out at a work get together. Logan was having a hard time settling down (very unlike him). I'm blaming it on the anethesia or maybe teething (poor baby is still gummy and toothless) but he would not calm down. The usual tricks were not working. As I bent down to pull him out of the crib, something whacked me across the nose...his head, a hand, I'm not sure. But as soon as I sat down to feed him a little, I felt my nose dripping. Although it was dark, I could still make out the blood. My first bloody nose via Baby Logan. One of the people we have met through out Mowat-Wilson support group on google, said her husband bought her a hockey mask to protect her face (and nose job) because her little girl can be aggressive sometimes. Logan didn't mean to do it this time, but is sure did hurt. While trying to hold up his bottle, all I could think was "Please God, do not let blood get on our white carpet and chair." Luckly, he answered my pray! I did, however, drip some on to Logan's hand, and of course by the time I got something to wipe it up with, he had put his face right in it. It looked like someone had given him a bloody lip! Still unsettled, I took him to our bed to see if SportsCenter might do the trick (it usually does). No such luck. Finally, I called Olin and pleaded "Please come home." Well, those might not have been my exact words : ) but he did come home (with Tylenol) and eventually Logan fell asleep for the night. Phew...it was some night.
Even today though, he seems to be a bit out of sorts. Sally, his babysitter, agreed. Hopefully, all of the anesthesia or whatever it is will run its course. Logan's grandparents are planning to kidnap him for the weekend so I hope he's back to his normal self by then. A totally free weekend is ahead. So far Olin and I have established a date night for Friday. I'm not sure I remember what that is. We've definitey gone out without Logan plenty of times, but it's always for a party or a wedding. Friday is just for us. I'm really looking forward to it. Hopefully, biopsy results will be in tomorrow. We are very optimistic about not having to do another surgery, but we'll know for sure soon!
Thursday, January 20, 2011
Deja Vu
Tomorrow will be exactly one year to the day that Logan had his exploratory surgery. It's crazy to look back on that day and think how little Olin and I knew at the time. We had been parents for just ten days when our pediatrician told us that Logan needed to go to Children's Healthcare because he could not keep anything down and was basically puking up bile. I can't even remember how many tests they ran on our sweet little man before a surgeon came in and basically said that she had to perform emergency surgery or else. The doctors didn't have an explanation of why he couldn't eat, thus the "exploratory" surgery began. I think the whole procedure took about 2-3 hours. Luckily, our incredible families came as soon as they got our messages. I can only imagine what we must have sounded like: probably like thirteen year old kids scared out of their minds.
Looking back on this event 365 days later, this part of the story still isn't funny (I thought maybe it would be as time passed, but...nope). After three hours of waiting and trying hopelessly to think of something other than Logan under the knife...the surgeon came out to tell us some news. We huddled around her as she stated that he was doing okay. She said, "I snipped a couple of bands, but his intestines we're really rotated like we thought." And then with a smile and sort of a laugh, she added, "But at least I took his appendix out!" Seriously? I wanted to hit her. Just wait though. It gets better. As she continued to run us through the operation, her cell phone rang. No problem. I'm sure doctors must have to have it with them at all times for emergencies. So she answered the phone, but it was not a medical emergency at all. It was American Express telling her that someone had been using her debit card. Her eyes widened like she couldn't believe her ears and proceeded to stay on the phone with American Express for at least ten minutes to discuss the purchases made her stolen debit card. Meanwhile, mine and Olin's families were in complete shock. She had left us in the middle of explaining how our ten day old son was recuperating from major surgey to take this call about her freaking debit card. I looked around tenatively. Who was going to knock her out first? Looking back, I'm really surprised Olin didn't! Oh, and to make all of this worse...shehad glitter eye shadow on her eyes. Now, I don't know much about medicine and surgery, but something tells me that glitter in the operating room probably isn't the best idea. Geez, I can't even stand to get glitter cards in the mail. That stuff gets everywhere. To this day, I'm convinced Logan probably has some shiny silver glitter pieces floating around in his body!
The reason I was reflecting on Jan. 21, 2010 is because tomorrow Jan. 21, 2011, Logan is going to be back in the operating room having a full thickness rectal biopsy performed. Sounds fun, right? About 50% of the kids with MWS have something called Hirschprung's disease that affects bowel activity and basically means that part of the intestine does not function properly and needs to be removed. At the time of Logan's exploratory surgery, we didn't have the MWS diagnosis, so Hirschprung's was never considered. However, in the last year, I can honestly say we've probably only cleaned 50 dirty diapers. Logan gets backed up to say the least. Without some assisstance, he could easily not go for ten days! Because of our knowledge of his syndrome and his patterns, we've been trying to find out if he has Hirschprungs since late November. They have already done two biopsies, but the results were not conclusive to say one way or another if he had the disease. So, tomorrow's surgery should (and better be) the last step in finding this out. We are optimistic because he has been going on his own more lately with a few daily "poop scoops" aka Benefiber. We have also figured out that it is possible to scare the shit out of him. Literally. I swear...I have witnesses. Whenever we talk about an upcoming procedure or "threaten" that a suppository is in store soon if he doesn't poop, within minutes, he's making something come out. It's almost like he says "okay okay, I'll do it already. Just don't make me do that other stuff!" It's pretty funny. You've never seen two people get more excited about poop than Olin and me. We fight to change the dirty ones (well, we fight more to watch the other person change it). It's very ironic that exactly a year from last year's crazy extended hospital stay, we will be back at the same place. Luckily, we know we will be back home in a matter of hours versus almost a week last year. Logan is such a fighter though. He doesn't cry anymore at his shots. In fact, I think he gives the nurses the middle finger when they start to poke at him : ) He's very skeptical of all doctors. I don't blame him though. I would be too. Keep Logan and his little bum in your prayers tomorrow.
Looking back on this event 365 days later, this part of the story still isn't funny (I thought maybe it would be as time passed, but...nope). After three hours of waiting and trying hopelessly to think of something other than Logan under the knife...the surgeon came out to tell us some news. We huddled around her as she stated that he was doing okay. She said, "I snipped a couple of bands, but his intestines we're really rotated like we thought." And then with a smile and sort of a laugh, she added, "But at least I took his appendix out!" Seriously? I wanted to hit her. Just wait though. It gets better. As she continued to run us through the operation, her cell phone rang. No problem. I'm sure doctors must have to have it with them at all times for emergencies. So she answered the phone, but it was not a medical emergency at all. It was American Express telling her that someone had been using her debit card. Her eyes widened like she couldn't believe her ears and proceeded to stay on the phone with American Express for at least ten minutes to discuss the purchases made her stolen debit card. Meanwhile, mine and Olin's families were in complete shock. She had left us in the middle of explaining how our ten day old son was recuperating from major surgey to take this call about her freaking debit card. I looked around tenatively. Who was going to knock her out first? Looking back, I'm really surprised Olin didn't! Oh, and to make all of this worse...shehad glitter eye shadow on her eyes. Now, I don't know much about medicine and surgery, but something tells me that glitter in the operating room probably isn't the best idea. Geez, I can't even stand to get glitter cards in the mail. That stuff gets everywhere. To this day, I'm convinced Logan probably has some shiny silver glitter pieces floating around in his body!
The reason I was reflecting on Jan. 21, 2010 is because tomorrow Jan. 21, 2011, Logan is going to be back in the operating room having a full thickness rectal biopsy performed. Sounds fun, right? About 50% of the kids with MWS have something called Hirschprung's disease that affects bowel activity and basically means that part of the intestine does not function properly and needs to be removed. At the time of Logan's exploratory surgery, we didn't have the MWS diagnosis, so Hirschprung's was never considered. However, in the last year, I can honestly say we've probably only cleaned 50 dirty diapers. Logan gets backed up to say the least. Without some assisstance, he could easily not go for ten days! Because of our knowledge of his syndrome and his patterns, we've been trying to find out if he has Hirschprungs since late November. They have already done two biopsies, but the results were not conclusive to say one way or another if he had the disease. So, tomorrow's surgery should (and better be) the last step in finding this out. We are optimistic because he has been going on his own more lately with a few daily "poop scoops" aka Benefiber. We have also figured out that it is possible to scare the shit out of him. Literally. I swear...I have witnesses. Whenever we talk about an upcoming procedure or "threaten" that a suppository is in store soon if he doesn't poop, within minutes, he's making something come out. It's almost like he says "okay okay, I'll do it already. Just don't make me do that other stuff!" It's pretty funny. You've never seen two people get more excited about poop than Olin and me. We fight to change the dirty ones (well, we fight more to watch the other person change it). It's very ironic that exactly a year from last year's crazy extended hospital stay, we will be back at the same place. Luckily, we know we will be back home in a matter of hours versus almost a week last year. Logan is such a fighter though. He doesn't cry anymore at his shots. In fact, I think he gives the nurses the middle finger when they start to poke at him : ) He's very skeptical of all doctors. I don't blame him though. I would be too. Keep Logan and his little bum in your prayers tomorrow.
Wednesday, January 19, 2011
"Fear not for the future, weep not for the past" - Percy Bysshe Shelley
I've only been writing this blog for about a week now, but I can honestly say that I haven't felt this good in a long time. It's not like everything in my life is now perfect and that the hurt and anger have miraculously subsided, but I do feel a sense of relief and freedom from my own thoughts. Do you ever feel like you cannot get your brain to turn off...the thoughts just keep spinning and spinning inside your head? Welcome to my life. It doesn't matter if I've just woken up for the day or if I'm riding home from work in the car, I can't get my mind to turn off. It can be 5:15 in the morning and I'm trying to picture what our lives are going to be like 20 years from now. I know it sounds so ridiculous, but it's the truth. I keep telling myself that if I don't start living in the moment that so many wonderful things are going to pass me by.
This week though, I finally feel a little less crazy. Even Olin has commented that I seem happier than usual this week : ) Totally unexpectedly I have found comfort in a friend from the past who is going through a very similar experience to ours. It's almost like we're living parallel lives just a few hundred miles apart. Looking at her, I think she is soooo incredibly strong, and I marvel at her faith in God. People sometimes say "Gosh, I don't know how you do it...or I could never do what you're doing." Well, the thing is, you don't have a choice. You do it. What other option is there? Your baby might not be everything you imagined him to be, but he's your baby, and now you love him just the way he is. You can't imagine him any other way. If Logan didn't have MWS, would he still be the incredibly lovable, cuddly, hardly ever cries, loves to be thrown in the air, beautiful baby that he is? How could I ever want to change him now? I guess, I want to change what the research tells us his future will be. I want to change the fact that I may never hear him say he loves me or ask me for help. Yes, that I want to change. But if he never has to experience hate, or pain, or understand why people kill each other in this world, maybe he's pretty lucky. We all just want our babies to be happy. That's the ultimate goal. And if I can learn to be happy along the way too, that's a double bonus!
"Fear not for the future, weep not for the past" - Percy Bysshe Shelley
This week though, I finally feel a little less crazy. Even Olin has commented that I seem happier than usual this week : ) Totally unexpectedly I have found comfort in a friend from the past who is going through a very similar experience to ours. It's almost like we're living parallel lives just a few hundred miles apart. Looking at her, I think she is soooo incredibly strong, and I marvel at her faith in God. People sometimes say "Gosh, I don't know how you do it...or I could never do what you're doing." Well, the thing is, you don't have a choice. You do it. What other option is there? Your baby might not be everything you imagined him to be, but he's your baby, and now you love him just the way he is. You can't imagine him any other way. If Logan didn't have MWS, would he still be the incredibly lovable, cuddly, hardly ever cries, loves to be thrown in the air, beautiful baby that he is? How could I ever want to change him now? I guess, I want to change what the research tells us his future will be. I want to change the fact that I may never hear him say he loves me or ask me for help. Yes, that I want to change. But if he never has to experience hate, or pain, or understand why people kill each other in this world, maybe he's pretty lucky. We all just want our babies to be happy. That's the ultimate goal. And if I can learn to be happy along the way too, that's a double bonus!
"Fear not for the future, weep not for the past" - Percy Bysshe Shelley
Monday, January 17, 2011
Birthday Party Success...check!
My high expectations for Logan's first birthday party were met and exceeded yesterday. It was a wonderful day that I'll never forget. One image that stands out in my mind was when Logan was in his high chair and "Happy Birthday" echoed through the dining room, I looked around and saw a packed house full of people who love this little guy so much! It really kind of took my breath away. All of the planning and preparation paid off...the yellow hat cookies were a success (I finally figured out how to get the icing to stay put)...the food was delicious (we had just enough!)...and the company was fantastic (I think we had about 35 people in all).
Logan was the best behaved birthday boy as well. I don't know what I'll do if I have another baby that cries all of the time. Logan definitely spoils us in that regard. Fortunately he had a good morning nap, but still, he was totally content with people in his face and being passed around for about 3 hours! Not once did he even make the notion to cry. He's awesome. His face was priceless when everyone sang to him. It was like he knew everyone was there for him. He was the king in his throne!
We defnitely have more toys than we have space for now : ) It's great though. I think we'll pack some up and take them to Sally (his babysitter) so Logan and Holt can play with them during the day. Holt is his buddy (born in August). Sally says they "talk" to each other all day long. Logan also got lots of adorable spring clothes. Just what he needed too. I can't believe he's pretty much in 18-24 month sizes already. I had jeans on him for most of the party, but the poor boy just doesn't do pants with buttons very well. We unbuttoned and unzipped about halfway through the party! We got lots of fun pictures of him banging in his monkey cake. The frosting was well-received and after a little guiding of his hand, he made a great mess like any other one year-old.
I guess it's back to reality (work) tomorrow. Let's see...we've had nine days in a row off. It's going to be like the first day of school all over again. The kids had only been back from Christmas break for three days before the snow and ice hit. Luckily, it's a short week. MLK day today and off on Friday. Should be doable.
Logan was the best behaved birthday boy as well. I don't know what I'll do if I have another baby that cries all of the time. Logan definitely spoils us in that regard. Fortunately he had a good morning nap, but still, he was totally content with people in his face and being passed around for about 3 hours! Not once did he even make the notion to cry. He's awesome. His face was priceless when everyone sang to him. It was like he knew everyone was there for him. He was the king in his throne!
We defnitely have more toys than we have space for now : ) It's great though. I think we'll pack some up and take them to Sally (his babysitter) so Logan and Holt can play with them during the day. Holt is his buddy (born in August). Sally says they "talk" to each other all day long. Logan also got lots of adorable spring clothes. Just what he needed too. I can't believe he's pretty much in 18-24 month sizes already. I had jeans on him for most of the party, but the poor boy just doesn't do pants with buttons very well. We unbuttoned and unzipped about halfway through the party! We got lots of fun pictures of him banging in his monkey cake. The frosting was well-received and after a little guiding of his hand, he made a great mess like any other one year-old.
I guess it's back to reality (work) tomorrow. Let's see...we've had nine days in a row off. It's going to be like the first day of school all over again. The kids had only been back from Christmas break for three days before the snow and ice hit. Luckily, it's a short week. MLK day today and off on Friday. Should be doable.
Saturday, January 15, 2011
Getting Ready for The Big "One"
It's been really nice having the week off because of snow and ice to get ready for Logan's first birthday party. Yes, I am being a little bit pyscho about the details, but a 1st birthday only happens once, right? My mom keeps reminding me that this is just a birthday party not a wedding. I guess I kind of figure that if Logan never gets to have a wedding, then every year his birthday will be like one : ) We are finishing the year out with a Curious George themed party. I just finished a poster that has all of his monthly pictures with George all lined up from one month to one year. It's really crazy to see how much he has grown (well, all except for his feet). I swear they are the same size as when he was born!
I was inspired by our art teacher at school to make cookie favors. So I ordered online what was labeled a "pilgrim" hat to make "man in the yellow hat" cookies. They came out looking pretty good, but now I can't get them into the baggies without the stupid black stripe peeling off. Hopefully, if I leave them out tonight, the icing will dry out but the cookies won't turn into cement. I guess it's the thought that counts.
I'm wondering if Logan will attempt to mash his hand in his little monkey cake tomorrow. I hope that he does. We were at Logan's little buddy's first birthday party today and the little guy was just going to town on his cake. Too cute. Well, not so conveniently, the cleaning ladies will be coming on Monday (ice kept them away this week) so Olin and I have some work to do in the morning. I hope tomorrow goes as I have dreamed it up in my head. I know probably should lower my expectations a little, but oh well. I'm excited anyways. Happy Birthday Logan!
I was inspired by our art teacher at school to make cookie favors. So I ordered online what was labeled a "pilgrim" hat to make "man in the yellow hat" cookies. They came out looking pretty good, but now I can't get them into the baggies without the stupid black stripe peeling off. Hopefully, if I leave them out tonight, the icing will dry out but the cookies won't turn into cement. I guess it's the thought that counts.
I'm wondering if Logan will attempt to mash his hand in his little monkey cake tomorrow. I hope that he does. We were at Logan's little buddy's first birthday party today and the little guy was just going to town on his cake. Too cute. Well, not so conveniently, the cleaning ladies will be coming on Monday (ice kept them away this week) so Olin and I have some work to do in the morning. I hope tomorrow goes as I have dreamed it up in my head. I know probably should lower my expectations a little, but oh well. I'm excited anyways. Happy Birthday Logan!
Friday, January 14, 2011
Overwhelmed with love
I can hardly put into words what happened tonight and how loved and blessed I feel. I wish I knew some bible verses or more profound words to sum up what I am feeling, but it will have to just be the words of "Jackie" tonight.
My best and childhood friend, Katie, had been insisting all week that she needed to come over sometime this week to give Logan a birthday present since she and her hubby would be out of town and miss his party this weekend. Because of the crazy snow and ice, she never made it during the week. So, today she called and said she and Greg wanted to come by, but she also asked if Olin would be home. I thought it was kind of weird that she wanted him to be there. That got me a little suspicious and I thought...she's pregnant : )
Well, she is not pregnant (yet), but she and Greg did come over right as Olin got home tonight. She came in with a big basket and told me not to look yet. So I showed Greg some of the ridiculous crafting that I've done all week (hey- what else do you do when you have 5 snow days in a row?). Then Katie handed me a card with a letter inside. I won't rewrite the letter, but I will say that I've never had a friend write something like that to me. If it weren't for medication, I would have been blubbering like an idiot. Katie was actually in the hospital room, working as a NICU nurse, the night that Logan was born. She truly has been there since the beginning of this journey. In her letter, Katie explained that she wanted to give Logan something that would really be helpful to us in the next year, whatever he decided to throw at us. S0, she gathered support from all of our friends and their families to put together a "Birthday Fund for Logan." The basket contained over $2500 of gift cards to Publix for the next year. Unbelievable. Overwhelmed doesn't even begin to describe what I am feeling. Friends, their parents, their grandparents, etc. all contributed to make this incredible gift for us. To all of them, I am so thankful...you have no idea how helpful it is going to be in the future. Hopefully, Logan will be able to drink milk soon and eat lots of fresh fruit. You know Publix always has the best of everything!
I just can't put it all together in my mind. The idea Katie had...the plan to get the word out...the generosity of all of these wonderful people. It just makes me feel so lucky to have Katie and all of these people in my life. I really know that Logan has so many people looking after him and wanting nothing but the best for him. If he was on Facebook, I'm sure he would have more friends than me and Olin combined! He really is an angel. This afternoon, he was belly laughing at everything. If his smile can't make you smile, nothing can. I have to believe he was put here on this Earth for a reason. Maybe he is here to teach us all how to love more and enjoy life...stop taking everything so seriously. I know we'll have our up and down days, but today we are definitely at the top!
My best and childhood friend, Katie, had been insisting all week that she needed to come over sometime this week to give Logan a birthday present since she and her hubby would be out of town and miss his party this weekend. Because of the crazy snow and ice, she never made it during the week. So, today she called and said she and Greg wanted to come by, but she also asked if Olin would be home. I thought it was kind of weird that she wanted him to be there. That got me a little suspicious and I thought...she's pregnant : )
Well, she is not pregnant (yet), but she and Greg did come over right as Olin got home tonight. She came in with a big basket and told me not to look yet. So I showed Greg some of the ridiculous crafting that I've done all week (hey- what else do you do when you have 5 snow days in a row?). Then Katie handed me a card with a letter inside. I won't rewrite the letter, but I will say that I've never had a friend write something like that to me. If it weren't for medication, I would have been blubbering like an idiot. Katie was actually in the hospital room, working as a NICU nurse, the night that Logan was born. She truly has been there since the beginning of this journey. In her letter, Katie explained that she wanted to give Logan something that would really be helpful to us in the next year, whatever he decided to throw at us. S0, she gathered support from all of our friends and their families to put together a "Birthday Fund for Logan." The basket contained over $2500 of gift cards to Publix for the next year. Unbelievable. Overwhelmed doesn't even begin to describe what I am feeling. Friends, their parents, their grandparents, etc. all contributed to make this incredible gift for us. To all of them, I am so thankful...you have no idea how helpful it is going to be in the future. Hopefully, Logan will be able to drink milk soon and eat lots of fresh fruit. You know Publix always has the best of everything!
I just can't put it all together in my mind. The idea Katie had...the plan to get the word out...the generosity of all of these wonderful people. It just makes me feel so lucky to have Katie and all of these people in my life. I really know that Logan has so many people looking after him and wanting nothing but the best for him. If he was on Facebook, I'm sure he would have more friends than me and Olin combined! He really is an angel. This afternoon, he was belly laughing at everything. If his smile can't make you smile, nothing can. I have to believe he was put here on this Earth for a reason. Maybe he is here to teach us all how to love more and enjoy life...stop taking everything so seriously. I know we'll have our up and down days, but today we are definitely at the top!
Life As We Know It (now)
So today is one day after Logan's first birthday...why am I starting this blog now? Well, that's a good question. The simplest explanation: It's cheaper than therapy.
Too much has happened in the last year to write about in one post so I'll just start here and fill in as needed. I guess I finally feel strong enough to share the things I am feeling, and I hope that not keeping them bottled up inside will make me a better mother, wife, teacher, and person. It was a hard year to say the least. Definitely not what I expected after learning that we were expecting! In November, Logan was diagnosed with an extremely rare genetic syndrome called Mowat-Wilson syndrome. You can go google it, but you won't find too much about it. About 200 cases in the world have been diagnosed. Obviously, there are more cases out there, but those are the few we know about. According to what we read, Logan will have moderate to severe intellectual disablities and other areas of developmental delay. The hardest part I have is that he may never talk or have very limited speech. Everyday I try to play in my head what I think his voice might sound like saying "mama" or "dada" or "I love you." I'm hopeful that all of his laughing and babbling will turn into words one of these days. Because MWS is so rare and there is so little research, we don't really know what to expect. We want to believe that Logan is on the more mild end of this spectrum. He is so aware of his surroundings and always wants to be around people. He is truly an "Arnold" in that regard. There are so many questions and so few answers. People constantly tell me "well, you don't have a crystal ball with any child. you don't know what the future brings." I guess that's true, but at least you have an image of what things will be like. You have a dream for what you want your child to do, to be. I'm not sure what my dreams for Logan are yet. I am guarded. I may still be in a little bit of denial (or my mom says it's hope). It's hard when he looks "normal" (ah, normal, what an interesting word!) and is basically healthy as a horse. It's just like he's 5 months behind what he should be doing. When we're not around other kids his age to compare him to, I sometimes forget about MWS. But, when we're at Monkey Joes with children running all over the place or at the Children's Museum and little ones are exploring all over the place...it's harder. It's hard not to compare him to other children. But it's not fair either. To him, to me. It will drive me crazy if I don't stop. I need to find a way to give up that competitive nature of mine. Or at least turn it into determination for my son.
Too much has happened in the last year to write about in one post so I'll just start here and fill in as needed. I guess I finally feel strong enough to share the things I am feeling, and I hope that not keeping them bottled up inside will make me a better mother, wife, teacher, and person. It was a hard year to say the least. Definitely not what I expected after learning that we were expecting! In November, Logan was diagnosed with an extremely rare genetic syndrome called Mowat-Wilson syndrome. You can go google it, but you won't find too much about it. About 200 cases in the world have been diagnosed. Obviously, there are more cases out there, but those are the few we know about. According to what we read, Logan will have moderate to severe intellectual disablities and other areas of developmental delay. The hardest part I have is that he may never talk or have very limited speech. Everyday I try to play in my head what I think his voice might sound like saying "mama" or "dada" or "I love you." I'm hopeful that all of his laughing and babbling will turn into words one of these days. Because MWS is so rare and there is so little research, we don't really know what to expect. We want to believe that Logan is on the more mild end of this spectrum. He is so aware of his surroundings and always wants to be around people. He is truly an "Arnold" in that regard. There are so many questions and so few answers. People constantly tell me "well, you don't have a crystal ball with any child. you don't know what the future brings." I guess that's true, but at least you have an image of what things will be like. You have a dream for what you want your child to do, to be. I'm not sure what my dreams for Logan are yet. I am guarded. I may still be in a little bit of denial (or my mom says it's hope). It's hard when he looks "normal" (ah, normal, what an interesting word!) and is basically healthy as a horse. It's just like he's 5 months behind what he should be doing. When we're not around other kids his age to compare him to, I sometimes forget about MWS. But, when we're at Monkey Joes with children running all over the place or at the Children's Museum and little ones are exploring all over the place...it's harder. It's hard not to compare him to other children. But it's not fair either. To him, to me. It will drive me crazy if I don't stop. I need to find a way to give up that competitive nature of mine. Or at least turn it into determination for my son.
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