My four year old daughter Kayla is beautiful. She is half Filipino and half Caucasian and has a very unique look. She has ringlet curls, long eyelashes, and a pretty smile. She is very photogenic, and has even done some modeling, however that is not the special part of my little girl.
Her brother Aidan has special needs but she only sees him as her brother. From a very young age she has tried to help him. She sometimes says she is the older sister when in reality she is the younger. When she was 16-months-old, her daddy was shot in the line of duty and I had to rush to his side. I had left my two sleeping babies with my neighbor, Linda. Linda was not trained to care for either of them but thankfully was willing to help me. When Kayla woke up from her nap she went into Aidan's room and brought Linda a diaper, as if to tell her he needed to be changed.
Two of the biggest things Kayla has learned in her four short years is caring and compassion and these are qualities I hope she never loses. She doesn't seem to see the differences some people may have, or if she does, she doesn't dwell on them. She can be found on the playground at preschool consoling a little friend that may have fallen down or hugging her mommy on a really bad day.
This last week was open house at her preschool. I was at a doctor's appointment with Aidan so her daddy took her. The next morning I couldn't wait to walk around her classroom and see all her artwork. When I saw a picture entitled, "what I want to be" I didn't know what to expect. Her answer was a Firewoman. It proceeded to say "because I want to help people when they are sick or hurt like they help my brother Aidan." It's true she has witnessed more than her fair share of 9-1-1 calls but I guess I didn't really think she understood.
Some day if you ever get the chance, ask my daughter about firemen. She LOVES them and I always joke that we are going to be in trouble when she turns 18. I thought maybe it was the firetruck or the cool uniform she liked, but apparently I was wrong.
Sunday, February 28, 2010
Friday, February 26, 2010
The Mystery
As some of you know I have been dealing with this mystery rash on Aidan's face for quite a while. I was so excited last week when he actually got a diagnosis, even though it was eczema, because I was armed with two new creams that would hopefully make it go away. So imagine my disappointment when as the week went on it seemed to get worse and worse. I was receiving all kinds of advice from fellow eczema sufferers like "try Aveeno body wash" or "ask the doctor for a different cream" but nothing seemed to work.
Yesterday evening we returned to the Dermatologist. As we were sitting in the waiting room his face became darker and darker red. When the doctor came in he looked at Aidan and asked me if I was using the creams. I told him I was but that his skin seemed worse. He took a closer look and I asked him if he still thought it was eczema to which he responded, "no I don't." He looked over to where I was sitting and saw the medications I was drawing up for Aidan. And then he asked, "he is on seizure meds, right?" I said "yes he is." He went on to tell me that some seizure medications can cause allergic rashes and the fact that the rash was photosensitive made him believe that is what was happening. He said that as Aidan sat there his face was getting redder but the covered parts of his body had a much lesser rash and few rashes are photosensitive. He gave me an oil to put on the rash and told me to talk to our neurologist. He was reluctant to prescribe a steroid because of the number of meds he was already on.
On the way home I called our neurologist and updated her. She said "don't give him anymore." Unfortunately I had given him his 6pm dose already so I asked her if there were any scary side effects and she said there could be. She wanted to know if he had prescribed anything. I told her what he said about Aidan having so many drugs already. She told me to call him and get a steroid right away.
I called back to the office and luckily they were still there and able to call in a prescription. We picked it up last night and started Aidan on it. This should ensure us that his throat will stay open during this transition time; however, I have to say last night was not the best sleep I have ever had. Every little noise I heard made me think he was in danger.
I think everyone was where they were suppose to be last night. First, the doctor was out of the office on Tuesday and Wednesday so they were behind schedule making it necessary for me to prepare Aidan's 6pm medications in the office while I was waiting. Second, his neurologist answered her cell phone when I called and third, they wouldn't normally be there at 7:30pm when I called back a little while after I left the office. I like when all the players are in place, don't you?
I took Aidan to school this morning, minus one seizure drug. He seemed happy but he was showing signs of sleepiness. I explained the situation to his aide and told him to call me if anything seemed strange or concerned them. The only thing left is to wait and see. I am hoping that the thoughts and prayers being sent from across the country will help and that the seizures stay away until we can determine whether or not the Lamictal was the culprit after all.
Yesterday evening we returned to the Dermatologist. As we were sitting in the waiting room his face became darker and darker red. When the doctor came in he looked at Aidan and asked me if I was using the creams. I told him I was but that his skin seemed worse. He took a closer look and I asked him if he still thought it was eczema to which he responded, "no I don't." He looked over to where I was sitting and saw the medications I was drawing up for Aidan. And then he asked, "he is on seizure meds, right?" I said "yes he is." He went on to tell me that some seizure medications can cause allergic rashes and the fact that the rash was photosensitive made him believe that is what was happening. He said that as Aidan sat there his face was getting redder but the covered parts of his body had a much lesser rash and few rashes are photosensitive. He gave me an oil to put on the rash and told me to talk to our neurologist. He was reluctant to prescribe a steroid because of the number of meds he was already on.
On the way home I called our neurologist and updated her. She said "don't give him anymore." Unfortunately I had given him his 6pm dose already so I asked her if there were any scary side effects and she said there could be. She wanted to know if he had prescribed anything. I told her what he said about Aidan having so many drugs already. She told me to call him and get a steroid right away.
I called back to the office and luckily they were still there and able to call in a prescription. We picked it up last night and started Aidan on it. This should ensure us that his throat will stay open during this transition time; however, I have to say last night was not the best sleep I have ever had. Every little noise I heard made me think he was in danger.
I think everyone was where they were suppose to be last night. First, the doctor was out of the office on Tuesday and Wednesday so they were behind schedule making it necessary for me to prepare Aidan's 6pm medications in the office while I was waiting. Second, his neurologist answered her cell phone when I called and third, they wouldn't normally be there at 7:30pm when I called back a little while after I left the office. I like when all the players are in place, don't you?
I took Aidan to school this morning, minus one seizure drug. He seemed happy but he was showing signs of sleepiness. I explained the situation to his aide and told him to call me if anything seemed strange or concerned them. The only thing left is to wait and see. I am hoping that the thoughts and prayers being sent from across the country will help and that the seizures stay away until we can determine whether or not the Lamictal was the culprit after all.
Wednesday, February 24, 2010
Control in an Uncontrollable World
I don't think it is a big secret to most people that know me, I am a control freak. If you were to ask my husband he would give you an answer like "you're kidding right?" Well at least I can admit it.
Part of the reason I try so hard to control things is because so much in my life is so far out of it. It may be the reason I do many of the things I do. It may be the reason I don't eat chocolate or why I am a vegetarian. Knowing that I can choose to not eat something and then don't. Maybe it is the reason I do so much hot yoga. I can control my body and perfect my practice. At least these things are all good for me but as you see they allow me to control my health, weight, and diet.
With that said there are many times I have to give up control. Especially when it comes to my son. His illnesses and disabilities leave me not only without control but helpless sometimes like when he has a seizure or becomes suddenly ill.
So here I am a wannabe control freak in an uncontrollable world but even though that might be the case I do have two things: hope and a sense of humor.
Part of the reason I try so hard to control things is because so much in my life is so far out of it. It may be the reason I do many of the things I do. It may be the reason I don't eat chocolate or why I am a vegetarian. Knowing that I can choose to not eat something and then don't. Maybe it is the reason I do so much hot yoga. I can control my body and perfect my practice. At least these things are all good for me but as you see they allow me to control my health, weight, and diet.
With that said there are many times I have to give up control. Especially when it comes to my son. His illnesses and disabilities leave me not only without control but helpless sometimes like when he has a seizure or becomes suddenly ill.
So here I am a wannabe control freak in an uncontrollable world but even though that might be the case I do have two things: hope and a sense of humor.
Thursday, February 18, 2010
A Step At a Time
As parents we want to give our kids the best of everything. The best we can sensibly afford, the best advice, and the best chances in life. Last year my husband and I had to make a potentially life altering decision for our son Aidan. All current indications are that it was the right decision but only time will tell.
In the spring of 2009 our son came home from school in his wheelchair. He was crying hysterically and the bus driver said she got him that way from the teacher. "Did they call you" she asked me? But sadly they had not. My son doesn't speak words he simply smiles, signs "OK," or shows disapproval, and this was way beyond disapproval. He has cerebral palsy and for most of his 6 years of life his muscles and bones have played a kind of tug of war. With this in mind I took him to our chiropractor to see if perhaps this was the source of his pain. It was determined that one of his hips was rotated forward and so he was adjusted.
For the next few weeks this continued to happen until one day his physical therapist asked me if I had ever had his hips x-rayed. I hadn't. This was not one of the things our doctors were monitoring. I asked our chiropractor if he could do it and he agreed. The x-ray to him was inconclusive however he told me he wasn't a pediatric specialist and maybe I should take it to someone else, so I did.
I was not prepared for what I would later hear. Both Aidan's hips were dislocated. There was a local surgeon that did this kind of repair but it would not be an easy fix. I went home cried a lot and then called for a consultation.
The biggest question I had was whether this surgery would help my son walk. He said, "usually by the time it gets to this stage most of my patients aren't walking anyway, I can't tell you that. But I will tell you that if we don't repair his hips he will never be stable enough to walk."
This last August Aidan went through two hip surgeries known as a "bi-lateral hip reduction with tendon lenghtening" a week apart. We stayed in the hospital for 10 days. When he did come home it was in a full body cast known as a spica cast. It ran from his nipple line to his toes with his feet turned out and about 15 inches apart. I did have to laugh when we tried to get him through the very small doorways in our home. We had to literally turn him sideways and walk through holding him horizontally, aahhh the memories.
So we survived the last six months. It was very tough but so am I. I was a type A businesswoman that became a full time stay-at-home mom to a 25 week preemie. I scare easy, I cry, and then I assess the situation and do what needs to be done. What is the alternative? For me, there isn't one.
This week marked six months since surgery and it was a great week. Aidan took 47 independent steps at physical therapy and the surgeon told me he looks great and better yet his hips look great. Now everyday, one step at a time, Aidan shows me why we went through what we did.
In the spring of 2009 our son came home from school in his wheelchair. He was crying hysterically and the bus driver said she got him that way from the teacher. "Did they call you" she asked me? But sadly they had not. My son doesn't speak words he simply smiles, signs "OK," or shows disapproval, and this was way beyond disapproval. He has cerebral palsy and for most of his 6 years of life his muscles and bones have played a kind of tug of war. With this in mind I took him to our chiropractor to see if perhaps this was the source of his pain. It was determined that one of his hips was rotated forward and so he was adjusted.
For the next few weeks this continued to happen until one day his physical therapist asked me if I had ever had his hips x-rayed. I hadn't. This was not one of the things our doctors were monitoring. I asked our chiropractor if he could do it and he agreed. The x-ray to him was inconclusive however he told me he wasn't a pediatric specialist and maybe I should take it to someone else, so I did.
I was not prepared for what I would later hear. Both Aidan's hips were dislocated. There was a local surgeon that did this kind of repair but it would not be an easy fix. I went home cried a lot and then called for a consultation.
The biggest question I had was whether this surgery would help my son walk. He said, "usually by the time it gets to this stage most of my patients aren't walking anyway, I can't tell you that. But I will tell you that if we don't repair his hips he will never be stable enough to walk."
This last August Aidan went through two hip surgeries known as a "bi-lateral hip reduction with tendon lenghtening" a week apart. We stayed in the hospital for 10 days. When he did come home it was in a full body cast known as a spica cast. It ran from his nipple line to his toes with his feet turned out and about 15 inches apart. I did have to laugh when we tried to get him through the very small doorways in our home. We had to literally turn him sideways and walk through holding him horizontally, aahhh the memories.
So we survived the last six months. It was very tough but so am I. I was a type A businesswoman that became a full time stay-at-home mom to a 25 week preemie. I scare easy, I cry, and then I assess the situation and do what needs to be done. What is the alternative? For me, there isn't one.
This week marked six months since surgery and it was a great week. Aidan took 47 independent steps at physical therapy and the surgeon told me he looks great and better yet his hips look great. Now everyday, one step at a time, Aidan shows me why we went through what we did.
Wednesday, February 17, 2010
Smile... It Is What It Is
So I wake up on a typical Wednesday for me, at 6 am. No not to go to typical work but for my "Mommy Work." You see my son Aidan has a g-tube or gastric tube by which he eats. It actually is a pretty cool contraption. He has a button on his skin that allows me to feed him formula or give him medicine while he sleeps. How many parents wouldn't want to give their kids yucky tasting medicine without them even knowing it, right?
In 2005 and again in 2006 Aidan developed pneumonia. From the best the doctors could figure out he aspirated on some meds I had given him, and it turned into pneumonia not once but twice. After that he really didn't have the desire to eat anymore. Not that I could blame him. So we had to make the tough decision to have a g-tube placed. Looking back I guess we should have seen it as the blessing it has become for him. He gains weight, grows and as much as possible stays pretty healthy. The only downside is the sleep thing for mom and dad.
We feed him at 6am, 10am, 2pm, 6pm and 10pm. So as you see someone has to be up for the 6am and the 10pm feedings. Sounds like we still have an infant, right? Unfortunately our "infant" is 6 years old :( I don't want it to sound like a bad thing because it isn't. How many parents would still love to hold their child, as I do mine. Have him stroke your face or hair, OK sometimes he pulls it but you know what I mean. Some nights I still rock him and he looks at me with the biggest most adoring eyes. For me that is everything.
Sometimes I cry because one of my babies can't say "Mommy" or "I love you" but I smile because his eyes say it to me every day.
In 2005 and again in 2006 Aidan developed pneumonia. From the best the doctors could figure out he aspirated on some meds I had given him, and it turned into pneumonia not once but twice. After that he really didn't have the desire to eat anymore. Not that I could blame him. So we had to make the tough decision to have a g-tube placed. Looking back I guess we should have seen it as the blessing it has become for him. He gains weight, grows and as much as possible stays pretty healthy. The only downside is the sleep thing for mom and dad.
We feed him at 6am, 10am, 2pm, 6pm and 10pm. So as you see someone has to be up for the 6am and the 10pm feedings. Sounds like we still have an infant, right? Unfortunately our "infant" is 6 years old :( I don't want it to sound like a bad thing because it isn't. How many parents would still love to hold their child, as I do mine. Have him stroke your face or hair, OK sometimes he pulls it but you know what I mean. Some nights I still rock him and he looks at me with the biggest most adoring eyes. For me that is everything.
Sometimes I cry because one of my babies can't say "Mommy" or "I love you" but I smile because his eyes say it to me every day.
Tuesday, February 16, 2010
How It All Began
I never planned on being a writer, it just kind of happened. Sure I jotted stuff down all the time as a kid and a teen but I never dreamed I would actually get paid for it. I was a business major in college and spent many years in the computer industry. I also owned my own business, a smoothie shop in Redondo Beach CA, Smoothie Girl. But one day in the 25th week of my first pregnancy everything changed and I do mean everything.
I suffered a placenta abruption and my son Aidan was delivered via emergency c-section weighing all of 1 lb 11 ozs. He ended up spending 143 days in the NICU or neonatal intensive care unit for those of you lucky enough to not have experienced it. He had every complication a preemie can have. He suffered a brain hemorrhage, hydrocephalus, an intestinal blockage, a PDA ligation, and many other things. He even came home on oxygen and monitors that we kept for his entire first year of life.
So the reason I am giving you all this background is that one day when I was being interviewed for a story about my husband I jokingly responded, "I can save you a lot of time. I journal and I have all of this written down already!" The writer politely responded, " I would love to read it sometime." Well I sent it to her and that was the beginning. About a month later I received an email asking me if I felt ready to take on an assignment. I said "yes" and a couple of months later I was looking at my name in print. I had written a story about my son and it was published.
I suffered a placenta abruption and my son Aidan was delivered via emergency c-section weighing all of 1 lb 11 ozs. He ended up spending 143 days in the NICU or neonatal intensive care unit for those of you lucky enough to not have experienced it. He had every complication a preemie can have. He suffered a brain hemorrhage, hydrocephalus, an intestinal blockage, a PDA ligation, and many other things. He even came home on oxygen and monitors that we kept for his entire first year of life.
So the reason I am giving you all this background is that one day when I was being interviewed for a story about my husband I jokingly responded, "I can save you a lot of time. I journal and I have all of this written down already!" The writer politely responded, " I would love to read it sometime." Well I sent it to her and that was the beginning. About a month later I received an email asking me if I felt ready to take on an assignment. I said "yes" and a couple of months later I was looking at my name in print. I had written a story about my son and it was published.
Subscribe to:
Posts (Atom)
