The weeks following our trek to Virginia for Scooter's cleft palate surgery were a blur.
We took Hopper in for developmental testing, which absolutely drained our mental reserves. Instead of scheduling the testing over the course of several days, they had us bring her in for hours upon hours of testing in one day. What would have been a long day for an adult was torturous for a 2.5 year old, and she made sure to show her displeasure every chance she got. We'd do it differently and insist on staggering the tests, if we had the chance to do it again.
Some of the tests were absolutely ridiculous. It wasn't the tester's fault. She did the best she could under the circumstances, but the people who wrote the test...well, let's just say they did a bang up job. Most of the questions were pass/fail, so the child didn't get credit, if they didn't do complete the task exactly as it was written.
Let's just say that caused some problems. Some of the problems had a hint of humor while being absolutely maddening. For example, Hopper was tested to see, if she could put a raisin in a tube. She could put cereal in the tube. She could put little chocolate candies in the tube. But for the life of her, she could not bring herself to put a raisin in the tube. In her little mind they were gross! The texture freaked her out, and she adamantly refused to pick them up.
So while it was somewhat funny that she had such an aversion to raisins, it was incredibly frustrating that she wouldn't get credit for putting a small object in the tube. According to the test, it was a complete and utter failure, if the child didn't put a raisin in the tube.
You would think that since these tests are compiled by doctors who understand child development that they would take into consideration that children may have aversions to certain things. Considering that the point of the test was to see, if the child had the fine motor skills to put the raisin in the tube, and to see, if they understood the concept of 'in', the raisin itself should not have been the hold up. There is no doubt in my mind, my husband's mind or minds of testers around the world that the tests should be written with the ability to substitute raisins for cereal for chocolate candies, etc. Children who need to have these tests in the first place have enough going against them. The testing shouldn't be one of them.
To add to the stress of Scooter's surgery and Hopper's various tests, we were dealing with Hubster's separation from active duty with the United States Marine Corps.
It only made sense to get all dental work caught up for each of us, all prescriptions refilled, final medical and veterinarian appointments completed, and all medical records copied to bring with us to our new lives without the USMC. We also had to arrange for the movers to come and pack our household up and get the house cleaned for the military inspection.
The last major detail was to get the all clear from Scooter's plastic surgeon in Norfolk, so we set out for Virginia once. Dr. Magee was happy with her progress and felt it was safe for us to move cross country with our little girl. The cleft palate repair had gone well, and it was such a weight off our shoulders!
The stress had caught up to us a bit, so when Bugster brought home a respiratory bug from school, she and I ended up with walking pneumonia and bronchitis. We were advised to rest, which was easy enough for Bugster to do, but nearly impossible for me. I had too much to do.
Like clean the room we stayed in before leaving town shortly after I'd cleaned it in the first place...
We were staying in a small motel on base while we waited to be released from base housing, and for Hubster to finish up the last of the paperwork with his military unit. We'd spent the majority of the evening packing and squeezing the necessities in the car that we needed as soon as we got to Colorado, and we were tired and hungry. After I fixed something for us to eat in the little kitchenette and cleaned up, I set off to get the girls bathed, so we didn't have to do it in the morning before we set out.
Bugster bathed first, and then I went in with Hopper and Scooter to get them bathed and in their jammies, so they could go to bed. When I came out of the bathroom, exhaustion had set in, and I nearly lost it. I couldn't believe my eyes as I watched Bugster singing, dancing around and joyfully crumbling crackers all over the freshly washed counter and table top.
It didn't take long for the shock to wear off and for me to yell, "What are you doing??!!" to our oldest daughter. She looked like she was ready to cry when she explained that she was just trying to feed her 'friends'.
Her friends?
Yeah. Those would be the cockroaches that inhabited the base motel, and that we did not want to bring with us to Colorado!! Laughing and crying at the same time, I hugged her and dragged my weary body into the kitchen area to vacuum and scrub again before crawling into bed. Cockroaches totally freak me out, so needless to say, my sleep was fitful with dreams of them crawling all over our girls and into the crevices of our suitcases.
In the morning, still exhausted, we packed up the car, went to our friends' house to say our goodbyes.
Just a short 6 weeks after Scooter had her cleft palate surgery, we left the USMC, our good friends, and North Carolina behind.
Showing posts with label Life Before. Show all posts
Showing posts with label Life Before. Show all posts
Tuesday, April 26, 2011
Sunday, April 10, 2011
That which changed our Life Before. Part 5
The Marine Corps rarely allowed families to go on deployments, and at the time my husband was active duty, the shortest accompanied tour was 18 months. Shortly after we found out we were expecting Scooter, The Hubster found out his military unit would be deploying for 6 months. He would leave in March and return in October, be home for 2 weeks and leave on an 18 month unaccompanied tour.
Although I hadn't had the amnio yet, we knew that there was a chance that Scooter would have the genetic problem Hopper had, so The Hubster told his commanding officer that he would be leaving active duty. To be home for only 2 weeks in a 2 year period was too much for our family, and when the results from the amniocentesis came in a few short weeks later, we were very thankful he'd made the decision to get out.
I can't describe how thankful I've been over the years. It's been so very difficult at times for us to go through what we've gone through together. I can't imagine having to have done it alone.
Scooter was born on my birthday that July. She was and is the best birthday gift I could have ever hoped for. She was absolutely gorgeous! She was a healthy 8 pounds 1 oz and had thick dark hair that stuck to her head in swirls. She looked like she'd had a professional finger wave done before making her grand entrance into the world by c-section.
I was a bit preoccupied with things like a pesky surgery, so The Hubster had the privilege of cutting her umbilical cord and accompanying her to have her vitals checked and to be looked over by a doctor. Like most babies, she was crying. It sounded more like a young kitten mewing than a cry, though. We found out later that it was due to tracheomalacia, a condition similar to her sister's laryngomalacia.
And while the weak cry that our youngest had was a bit distracting to The Hubster, it wasn't the situation that had his attention. For when she opened her little mouth all the way when crying, he noticed that she had a little hole above the uvula in the back of her throat. He said it looked slightly off, but it also looked somewhat normal.
Still. It took him off guard enough that he couldn't remember, if he had a hole above his own uvula. So while the nurses were busy with Scooter, and he was washing up in order to hold her, he looked in the chrome paper towel dispenser above the sink with his mouth wide open. There was no hole in his throat.
Scooter had a cleft of her soft palate, and we needed to head back up to Norfolk to have it evaluated.
So just a week or so after having Scooter by c-section, we were back on the road to Virginia.
Although I hadn't had the amnio yet, we knew that there was a chance that Scooter would have the genetic problem Hopper had, so The Hubster told his commanding officer that he would be leaving active duty. To be home for only 2 weeks in a 2 year period was too much for our family, and when the results from the amniocentesis came in a few short weeks later, we were very thankful he'd made the decision to get out.
I can't describe how thankful I've been over the years. It's been so very difficult at times for us to go through what we've gone through together. I can't imagine having to have done it alone.
Scooter was born on my birthday that July. She was and is the best birthday gift I could have ever hoped for. She was absolutely gorgeous! She was a healthy 8 pounds 1 oz and had thick dark hair that stuck to her head in swirls. She looked like she'd had a professional finger wave done before making her grand entrance into the world by c-section.
I was a bit preoccupied with things like a pesky surgery, so The Hubster had the privilege of cutting her umbilical cord and accompanying her to have her vitals checked and to be looked over by a doctor. Like most babies, she was crying. It sounded more like a young kitten mewing than a cry, though. We found out later that it was due to tracheomalacia, a condition similar to her sister's laryngomalacia.
And while the weak cry that our youngest had was a bit distracting to The Hubster, it wasn't the situation that had his attention. For when she opened her little mouth all the way when crying, he noticed that she had a little hole above the uvula in the back of her throat. He said it looked slightly off, but it also looked somewhat normal.
Still. It took him off guard enough that he couldn't remember, if he had a hole above his own uvula. So while the nurses were busy with Scooter, and he was washing up in order to hold her, he looked in the chrome paper towel dispenser above the sink with his mouth wide open. There was no hole in his throat.
Scooter had a cleft of her soft palate, and we needed to head back up to Norfolk to have it evaluated.
So just a week or so after having Scooter by c-section, we were back on the road to Virginia.
Wednesday, April 6, 2011
That which changed our Life Before. Part 3
Shortly after we returned from the hospital in Norfolk, Mom went home, and life started to get back to normal.
Hopper finally started to walk at 19 months old, just weeks after we were back home. And while it was humorous to watch her walk, it was obvious she needed help. Walking down a 3ft wide hallway, she'd bounce from wall to wall. She looked like a little tiny drunken sailor. She was adorable and it was funny to watch.
Until she fell.
We lived in base housing, and for anyone not familiar with base housing, the floors are hard. They are cement covered with a commercial grade linoleum. So when something fell on it, the thing that fell was likely to break. Even if that thing was a child.
Hopper's little tongue stuck out pretty much all the time. It made for adorable pictures. She was absolutely precious. Talking a mile a minute, giggling nonstop, and she was constantly on the go. One of the happiest, funniest and fun little things you could imagine. A little bundle of dynamite.
During one of her treks around the house at top speed, she slipped, and fell right on her face. Right on her little tongue that stuck out between her teeth all the time. She bit all the way through it, and the amount of blood was unbelievable. We scooped her up and rushed her to the emergency room where they told us that there was nothing they could do. The tongue apparently heals so quickly that they don't require stitches.
Sure enough, within a couple of days, her tongue was much better, and she was eating normally again. Until she fell. Again. Twice. She bit through in the exact same spot. Twice. Then she fell again and bit through her tongue in a different spot. She bit through that spot 2 more times as well.
Being pregnant at the time, I tended to worry even more than normal as a mom. I'd have the most horrific and graphic dreams about her little tongue and not making it into the room in time to stop the dog from...Well, no sense in me giving anyone else nightmares over it.
We made an appointment to go back to Norfolk and see the ENT that had seen her and diagnosed the vocal cord paralysis to get set up to get her first set of ear tubes. While we were up there on that visit, we made yet another visit to have Bugster evaluated for ear tubes as well. We made a total of 6 trips to Norfolk for evaluations, surgeries and post-op visits for the girls' ears alone within just a couple of months.
Thankfully, the tubes did their jobs on both girls, the ear infections slowed considerably, and little Hopper could walk without running into walls. She still had so much energy, coupled with ADHD, that she bounced off the walls, but at least she didn't run into them anymore.
The fact Hopper was no longer running into walls and no longer suffering from ear infection after ear infection helped bring my stress level down drastically. It was such a relief in the 4 months that followed to not have to worry about Hopper tripping and biting her tongue off was huge.
I had much bigger worries in store, and I needed all the help I could get.
Hopper finally started to walk at 19 months old, just weeks after we were back home. And while it was humorous to watch her walk, it was obvious she needed help. Walking down a 3ft wide hallway, she'd bounce from wall to wall. She looked like a little tiny drunken sailor. She was adorable and it was funny to watch.
Until she fell.
We lived in base housing, and for anyone not familiar with base housing, the floors are hard. They are cement covered with a commercial grade linoleum. So when something fell on it, the thing that fell was likely to break. Even if that thing was a child.
Hopper's little tongue stuck out pretty much all the time. It made for adorable pictures. She was absolutely precious. Talking a mile a minute, giggling nonstop, and she was constantly on the go. One of the happiest, funniest and fun little things you could imagine. A little bundle of dynamite.
During one of her treks around the house at top speed, she slipped, and fell right on her face. Right on her little tongue that stuck out between her teeth all the time. She bit all the way through it, and the amount of blood was unbelievable. We scooped her up and rushed her to the emergency room where they told us that there was nothing they could do. The tongue apparently heals so quickly that they don't require stitches.
Sure enough, within a couple of days, her tongue was much better, and she was eating normally again. Until she fell. Again. Twice. She bit through in the exact same spot. Twice. Then she fell again and bit through her tongue in a different spot. She bit through that spot 2 more times as well.
Being pregnant at the time, I tended to worry even more than normal as a mom. I'd have the most horrific and graphic dreams about her little tongue and not making it into the room in time to stop the dog from...Well, no sense in me giving anyone else nightmares over it.
We made an appointment to go back to Norfolk and see the ENT that had seen her and diagnosed the vocal cord paralysis to get set up to get her first set of ear tubes. While we were up there on that visit, we made yet another visit to have Bugster evaluated for ear tubes as well. We made a total of 6 trips to Norfolk for evaluations, surgeries and post-op visits for the girls' ears alone within just a couple of months.
Thankfully, the tubes did their jobs on both girls, the ear infections slowed considerably, and little Hopper could walk without running into walls. She still had so much energy, coupled with ADHD, that she bounced off the walls, but at least she didn't run into them anymore.
The fact Hopper was no longer running into walls and no longer suffering from ear infection after ear infection helped bring my stress level down drastically. It was such a relief in the 4 months that followed to not have to worry about Hopper tripping and biting her tongue off was huge.
I had much bigger worries in store, and I needed all the help I could get.
Tuesday, April 5, 2011
That which changed our Life Before. Part 2
When Hopper was born, she squeaked. She squeaked when she breathed in. She squeaked when she breathed out. It wasn't a soft little squeak like a mouse would make. It was much louder. Like a squeaky door hinge. She was diagnosed with a Stridor that was the result of Laryngomalacia. And by the time we were in the doctor's office in Norfolk 2.5 years later, The Hubster and I didn't hear it anymore. Well, we could hear it when she cried, but there was such a huge improvement that we really didn't hear it.
So when the pediatric cardiac surgeon came through the door and asked who was squeaking, The Hubster and I didn't even know what to say. He said that he could hear it through the closed door of the exam room across the hall in his office with the door closed. We were in shock. We honestly had gotten so used to it that we didn't even notice it anymore. Mom was shocked that we didn't hear it, because she said that she was surprised at how loud it still was after all these years.
The surgeon was unwilling to operate until we saw an ear, nose and throat doctor to find out what was causing the squeak. Because Hopper should have outgrown it by the age she was at the time. So we went to the ENT the next morning.
We were told that Hopper not only had the Laryngomalacia, which she had mostly outgrown, but also had paralyzed vocal cords. They could still vibrate, but they didn't open and close like they should, and that's why she squeaked. We were told that she should have had a tracheotomy tube at birth, and that we were lucky she was alive and doing as well as she was.
Boy, did that explain a lot! Like how she would turn blue and pass out when she cried when she was tiny. I took her to the pediatrician about it when she was little, and he said she was holding her breath to get attention and had a bit of a temper. That didn't sound quite right to me, but what did I know? I was overwhelmed with therapy and doctor appointments and dealing with The Hubster's 15 month deployment, so I didn't question it. I didn't insist on more testing to make sure, like I would now. I had to trust that the doctor knew what he was talking about. I thank the Good Lord that He protected Hopper. Things could have been so much worse.
The ENT told us that although we had been lucky up until that point that we still needed to be on guard. We had to make sure Hopper never got overheated or cried too hard, because her vocal cords could swell shut. If her vocal cords did swell shut, she would need to have an emergency tracheotomy.
So much for being able to breathe.
It was bad enough that she had a seizure once when she turned blue and passed out. The fact that we could have lost her shook us to the core. So when we went back to the surgeon later that day with the results, we were relieved to find out that he would not be performing heart surgery on Hopper. He said the risk of intubation far outweighed the risk of the heart defect that needed repaired. She would eventually need to have the surgery, but it could wait until her vocal cords grew enough there was no danger of intubation.
We felt like we could breathe again.
At least for a time.
So when the pediatric cardiac surgeon came through the door and asked who was squeaking, The Hubster and I didn't even know what to say. He said that he could hear it through the closed door of the exam room across the hall in his office with the door closed. We were in shock. We honestly had gotten so used to it that we didn't even notice it anymore. Mom was shocked that we didn't hear it, because she said that she was surprised at how loud it still was after all these years.
The surgeon was unwilling to operate until we saw an ear, nose and throat doctor to find out what was causing the squeak. Because Hopper should have outgrown it by the age she was at the time. So we went to the ENT the next morning.
We were told that Hopper not only had the Laryngomalacia, which she had mostly outgrown, but also had paralyzed vocal cords. They could still vibrate, but they didn't open and close like they should, and that's why she squeaked. We were told that she should have had a tracheotomy tube at birth, and that we were lucky she was alive and doing as well as she was.
Boy, did that explain a lot! Like how she would turn blue and pass out when she cried when she was tiny. I took her to the pediatrician about it when she was little, and he said she was holding her breath to get attention and had a bit of a temper. That didn't sound quite right to me, but what did I know? I was overwhelmed with therapy and doctor appointments and dealing with The Hubster's 15 month deployment, so I didn't question it. I didn't insist on more testing to make sure, like I would now. I had to trust that the doctor knew what he was talking about. I thank the Good Lord that He protected Hopper. Things could have been so much worse.
The ENT told us that although we had been lucky up until that point that we still needed to be on guard. We had to make sure Hopper never got overheated or cried too hard, because her vocal cords could swell shut. If her vocal cords did swell shut, she would need to have an emergency tracheotomy.
So much for being able to breathe.
It was bad enough that she had a seizure once when she turned blue and passed out. The fact that we could have lost her shook us to the core. So when we went back to the surgeon later that day with the results, we were relieved to find out that he would not be performing heart surgery on Hopper. He said the risk of intubation far outweighed the risk of the heart defect that needed repaired. She would eventually need to have the surgery, but it could wait until her vocal cords grew enough there was no danger of intubation.
We felt like we could breathe again.
At least for a time.
Monday, April 4, 2011
That which changed our Life Before. Part 1
I've been on an emotional roller coaster today going through the laundry that had long been forgotten. They seem familiar and yet foreign to me. They bring back faint memories of a life that once was but passed too quickly. These clothes are the window to my past. To our past. And the memories associated with them are bittersweet.
You see, these clothes represent a moment in time when all was well with the world. When life was simple. When life wasn't all about hospitalizations and illness and loneliness and and emptiness that overwhelmed me. They were from our Life Before, and while I am no longer in that dark place today, I feel I need to acknowledge it, that I might realize I did the best I could and I can leave it in the past...
The Hubster was in the United States Marine Corps, and we were stationed at Camp Lejeune, NC. I was so proud of him for serving our country, and I was proud to be a Marine's wife. Granted, there were a lot of separations from being in the field for weeks at a time, and there was loneliness from missing 'home' that was over 1500 miles away, but overall we were happy.
We lived off-base in the community of Jacksonville in the Fall of 1992. The house we lived in had major problems that we didn't realize until we'd been there several weeks. It seemed I was always sick, and there was a good reason for it. There was mold and mildew growing up the walls inside the house. I had to move furniture and take pictures off the walls every few weeks and bleach the walls to get rid of the mildew and mold. The house apparently had no moisture barrier under the foundation, and it allowed for entirely too much moisture in the house. It was beyond miserable. I just never felt like I could breathe. I knew I had asthma as a kid, but when I would ask the doctors, if it could have possibly come back, I always got the same answer. My lungs sounded clear.
I did my best to carry on. I walked Bugster to kindergarten and home from school every day, and I stayed home with Hopper while Bugster was in school. I loved the time we had together. However, it wasn't long before I found out we were expecting Scooter. I had a few complications, as it was a high risk pregnancy, but I was falling in love with our little baby more and more every single day.
Fall turned into Winter which slowly turned into Spring. In March of '93, we were approved for base housing, and we were thrilled. We were beyond ready to get out of that horrible and moldy house. I felt like I could finally breathe again and waited in anticipation for moving day.
In the meantime, we found out that Hopper needed to have heart surgery. They couldn't do the surgery at Camp Lejeune, so we traveled up to Norfolk to see what they could do up there. We were scared to death. The mere mention of heart surgery tends to stop a parent's heart mid-beat with fear, and we were no exception. We were scared.
Mom traveled the 1500 miles to be with us to help out when Hopper went in. She helped us move into base housing, and we all left for Norfolk the next morning. We had an appointment first thing to have Hopper checked out by the pediatric cardiologist prior to her surgery.
Mom went with us to Hopper's doctor appointment, partly for moral support, partly to act as another set of ears to listen to what the doctor had to say should we forget something he said, and mostly, because none of us could see her sitting in the hotel waiting for us and worrying. We were all very thankful she was there, as things didn't go exactly as planned.
You see, these clothes represent a moment in time when all was well with the world. When life was simple. When life wasn't all about hospitalizations and illness and loneliness and and emptiness that overwhelmed me. They were from our Life Before, and while I am no longer in that dark place today, I feel I need to acknowledge it, that I might realize I did the best I could and I can leave it in the past...
The Hubster was in the United States Marine Corps, and we were stationed at Camp Lejeune, NC. I was so proud of him for serving our country, and I was proud to be a Marine's wife. Granted, there were a lot of separations from being in the field for weeks at a time, and there was loneliness from missing 'home' that was over 1500 miles away, but overall we were happy.
We lived off-base in the community of Jacksonville in the Fall of 1992. The house we lived in had major problems that we didn't realize until we'd been there several weeks. It seemed I was always sick, and there was a good reason for it. There was mold and mildew growing up the walls inside the house. I had to move furniture and take pictures off the walls every few weeks and bleach the walls to get rid of the mildew and mold. The house apparently had no moisture barrier under the foundation, and it allowed for entirely too much moisture in the house. It was beyond miserable. I just never felt like I could breathe. I knew I had asthma as a kid, but when I would ask the doctors, if it could have possibly come back, I always got the same answer. My lungs sounded clear.
I did my best to carry on. I walked Bugster to kindergarten and home from school every day, and I stayed home with Hopper while Bugster was in school. I loved the time we had together. However, it wasn't long before I found out we were expecting Scooter. I had a few complications, as it was a high risk pregnancy, but I was falling in love with our little baby more and more every single day.
Fall turned into Winter which slowly turned into Spring. In March of '93, we were approved for base housing, and we were thrilled. We were beyond ready to get out of that horrible and moldy house. I felt like I could finally breathe again and waited in anticipation for moving day.
In the meantime, we found out that Hopper needed to have heart surgery. They couldn't do the surgery at Camp Lejeune, so we traveled up to Norfolk to see what they could do up there. We were scared to death. The mere mention of heart surgery tends to stop a parent's heart mid-beat with fear, and we were no exception. We were scared.
Mom traveled the 1500 miles to be with us to help out when Hopper went in. She helped us move into base housing, and we all left for Norfolk the next morning. We had an appointment first thing to have Hopper checked out by the pediatric cardiologist prior to her surgery.
Mom went with us to Hopper's doctor appointment, partly for moral support, partly to act as another set of ears to listen to what the doctor had to say should we forget something he said, and mostly, because none of us could see her sitting in the hotel waiting for us and worrying. We were all very thankful she was there, as things didn't go exactly as planned.
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