F's AT/AAC team was here a week ago. They updated his maestro for him. He had wanted some comments for family added to it. One being "I love you".
He's been using the maestro and learning the new format. We've got it set up so that he has a personal speaker for his prompts and then the loud speaker for us. This cuts down in the confusion about what he's saying.
While sitting in the family room with us. He was chatting away and more or less exploring the new comments and then finally it came R hears's "I love you". He checked f's screen to see what it was he said, but this comment didn't show on the screen (an adjustment is necessary). Upon being asked what he said within a few
minutes he repeated "I love you". We were overjoyed. It has taken f almost 19 years to have the ability to say I love you to us. His smile said it all. Our hearts were so full at that moment.
I was telling his speech therapist about it and he beamed from ear to ear with pride. This is a milestone we have all waited a very long time for.
Monday, March 26, 2012
Wednesday, March 21, 2012
To Leave or Not Leave When My Boy is Sick :(
Last Friday upon my return from swim practice, I walked in took one look at my boy and I knew he was getting sick. Cough, cough, cough was all I heard him do that day... although not unusual for the spring season the amount of coughing was. I asked if he felt like he was getting sick and a resounding "yes" response came from him. I was torn.
The next day I was scheduled to get C up bright and early to be not he road for an out of town swim meet. We were only traveling an hour away from home. I knew I could return if needed. I knew F would be in R's care (his dad)... but the pit in my stomach was there and it was all I could do to think about leaving. R assured me he would be attentive and on the respiratory care. R does a good job with almost everything for F, but there are times when he gets distracted or doesn't notice the little signs and signals F's been giving him that say "I need something" until it's too late. And let's face it, it's a mom thing.
My anxiety was at an all new level after having F wake me up at 3:25 in the morning in full respiratory distress and fever. He was panting. Fever 101.6 axillary. Respirations to many to count. We have an O2 sat monitor he was at 89 and his HR was 150!!! I was freaking. I immediately started albuteral. Stripped him down to a t-shirt. Wiped him down with a cool cloth. Within just a few minutes of the albuteral his numbers started to rise an fall. By it's completion he was up to 94/95 and his heart rate was at 132. I gave him a cup of water and some tylenol. I got him calm and comfortable and went back to bed by 4:20 or so. The alarm was set for 5 am!
R thankfully awoke at the early hour upon hearing about the crisis during the night. He packed our ice chest and filled our thermoses. He was already on my computer printing a med list. Had it planned to call on-call doctor and get F to urgent care. We both knew a prednisone burst would be necessary. Much to my relief R was on it with a plan. I was so torn to leave, but knew that R needed to be able to come through for us girls so that we could get away for the meet. R also needed to show F that dad can come through and take care of business when it needs to be done. The two of them have been bonding a lot while I'm gone with C at swim practice each night. I think it's been good for the two guys to not only work on their communication, but for R to work on being a better partner and assistant to F. It's been nice to see them grow closer.
But the truth is when F is sick... I HATE to be that far away from him. He's pretty stable with his health, but that asthma and respiratory piece combined can cause sudden crisis and I'd hate to not have my opportunity to be with him. I know what a way to think the worst! But most kids I've known like F didn't make it to adulthood they died in some state of respiratory illness or distress between 8 and 12. I've... we've been so lucky to have F almost 19 years now.
To make a long story short... R handled the illness with flying colors. He pulled night shift respiratory duty the night I was gone. He did a really good job for F as his nurse/respiratory therapist this weekend. I didn't worry too much while I was gone. C and I enjoyed our weekend... only to return with colds ourselves. F hasn't quite returned to his baseline, but he'll get there. How we all love that kid!
The next day I was scheduled to get C up bright and early to be not he road for an out of town swim meet. We were only traveling an hour away from home. I knew I could return if needed. I knew F would be in R's care (his dad)... but the pit in my stomach was there and it was all I could do to think about leaving. R assured me he would be attentive and on the respiratory care. R does a good job with almost everything for F, but there are times when he gets distracted or doesn't notice the little signs and signals F's been giving him that say "I need something" until it's too late. And let's face it, it's a mom thing.
My anxiety was at an all new level after having F wake me up at 3:25 in the morning in full respiratory distress and fever. He was panting. Fever 101.6 axillary. Respirations to many to count. We have an O2 sat monitor he was at 89 and his HR was 150!!! I was freaking. I immediately started albuteral. Stripped him down to a t-shirt. Wiped him down with a cool cloth. Within just a few minutes of the albuteral his numbers started to rise an fall. By it's completion he was up to 94/95 and his heart rate was at 132. I gave him a cup of water and some tylenol. I got him calm and comfortable and went back to bed by 4:20 or so. The alarm was set for 5 am!
R thankfully awoke at the early hour upon hearing about the crisis during the night. He packed our ice chest and filled our thermoses. He was already on my computer printing a med list. Had it planned to call on-call doctor and get F to urgent care. We both knew a prednisone burst would be necessary. Much to my relief R was on it with a plan. I was so torn to leave, but knew that R needed to be able to come through for us girls so that we could get away for the meet. R also needed to show F that dad can come through and take care of business when it needs to be done. The two of them have been bonding a lot while I'm gone with C at swim practice each night. I think it's been good for the two guys to not only work on their communication, but for R to work on being a better partner and assistant to F. It's been nice to see them grow closer.
But the truth is when F is sick... I HATE to be that far away from him. He's pretty stable with his health, but that asthma and respiratory piece combined can cause sudden crisis and I'd hate to not have my opportunity to be with him. I know what a way to think the worst! But most kids I've known like F didn't make it to adulthood they died in some state of respiratory illness or distress between 8 and 12. I've... we've been so lucky to have F almost 19 years now.
To make a long story short... R handled the illness with flying colors. He pulled night shift respiratory duty the night I was gone. He did a really good job for F as his nurse/respiratory therapist this weekend. I didn't worry too much while I was gone. C and I enjoyed our weekend... only to return with colds ourselves. F hasn't quite returned to his baseline, but he'll get there. How we all love that kid!
Wednesday, March 14, 2012
My Baby was Born with Cancer
It's come to that point where it's time to talk about Cienna, my first daughter. The little sweet girl who came into our lives at just the right time to give our lives some new perspective. I can remember being quite focused on F and all of his issues, baggage, complications... call it whatever you like he wasn't a normal healthy baby and I was in constant crisis mode with him. Then this sweet baby girl came into our lives and we were introduced to a couple of things. The first, what it was like to have a baby that had normal motor function. The second, babies can be born with cancer. Yes, born with cancer.
Cienna was born on January 18, 1995. I remember the morning very well. R had a doctor's appointment prior to the scheduled Cesarean. As soon as we were done we walked over to the hospital and checked in for her scheduled delivery. I can't remember if R's mom was caring for F or if we'd made arrangements for hm to stay at the Rotary House (a local respite facility for special needs children or children with health needs). Cienna had a normal Cesarean delivery. She weighed 8 pounds 5 ounces. She was so beautiful.
We took her home and everything seemed to be going well. We adjusted to our new family. My mother-in-law stayed to help me with F because I was unable to lift him. I can remember this day as if it was yesterday. My mother-in-law says to me "I noticed Cienan's eye has a funny look to it in certain light." Then she showed me what she saw. In just the right light you could see the light bounce off the inside of Cienna's eye and shimmer in a weird pink reflective way. It was almost like when a cat or dog's eyes reflects light, except a different color.
Monday morning I call the pediatricians office. I made an appointment for the following day. The next day is Valentines Day. R and I take her to the pediatrician and I show her exactly what my mother-in-law saw. Cienna's red reflex was normal, but the eye had that reflective glow. Our pediatrician says to us it could be a congenital detached retina or this "one really rare thing called retinoblastoma, but it's so rare a pediatrician may never ever see a case of it in their entire career." We leave the appointment knowing we will be referred to a pediatric opthamologist who we already knew because she was F's doctor.
I can remember going to dinner and a movie with R that night. I don't remember what we saw or even if we talked about what happened at the pediatrician's office that morning. I just remember neither of us could or would be prepared to deal with what was to come.
The phone rang at about 9 am. It was the ophthalmologist's office. They were calling to find out how soon we could get Cienna into the office. You'd think that I'd have really thought about this call and what it meant, the urgency of it. I was naive and had no clue. R and I arrive at the appointment and we wait and wait. They are literally squeezing us in. The doctor comes in does her initial evaluation and then she needs to dilate Cienna's eyes so we wait some more. Eventually, we've been there long enough that R needs to leave for work. Finally, the time comes when the doctor comes in for the detailed exam of Cienna's eyes. They put these little metal things on her eyelids to force them to stay open and it was HORRIBLE. Cienna was crying and crying. It was very unpleasant. After my new baby girl is done being tortured, the doctor looks right at me and says "She has retinoblastoma in both eyes. The right eye's tumor is very large. I'm going to immediately send you to Children's for an MRI. I will refer you to UCSF or Children's Hospital Los Angeles." What? My head is spinning. I'm not really sure I'm grasping the situation at this moment.
I call R and his mom. R leaves work early or his mom comes to get us. I can't really remember. We head to the local children's hospital for the MRI. We run into my favorite doctor, Dr. Hutch. F's neurologist. He is shocked to see us. We explain what's happening. His look should have told me a lot, but again CLUELESS! The ophthalmologist calls us on the hospital phone to give us the results. Cienna's right eye is 98 percent tumor and needs to be removed IMMEDIATELY! We are told she will call us later in the evening to tell us which hospital we are going to be referred to. Our heads are spinning!
The phone finally rings. We are told that arrangements have been made with the Dr. in Los Angeles. We need to leave the next morning. It's Thursday. The surgery is scheduled for Friday. We are in shock.
We get up and leave the house as early as possible. We arrive with the MRI films and we are waiting in the eye clinic. The doctor comes in and tells us the procedure to remove the eye is very simple. All aspects are covered and the recovery process. Then he proceeds to tell us that she will be referred to hematology oncology and they will put together her treatment plan for her CHEMOTHERAPY. R and I look right at each other.
The room is spinning. "What? Chemotherapy You say?"
Doctor "Yes, chemotherapy that is how we treat retinoblastoma in conjunction with laser therapy..." more things are said, but at that moment. My head is spinning and my heart is broken into a million pieces once again.
Me "You mean this is cancer."
Doctor, "Yes, retinoblastoma is a rare children's cancer that affects the eyes. She has the bilateral version..." then he goes into the blah, blahs about the genetic aspect of the disease.
I don't think we were really listening anymore because we were just told that our daughter had been BORN with cancer. Cancer grew in that right eye all through her in-utero development.
**Their Newsletter just arrived in my inbox. If I can figure out how to imbed or attach it I will. For now here is the link:
Retinoblastoma International
Cienna was born on January 18, 1995. I remember the morning very well. R had a doctor's appointment prior to the scheduled Cesarean. As soon as we were done we walked over to the hospital and checked in for her scheduled delivery. I can't remember if R's mom was caring for F or if we'd made arrangements for hm to stay at the Rotary House (a local respite facility for special needs children or children with health needs). Cienna had a normal Cesarean delivery. She weighed 8 pounds 5 ounces. She was so beautiful.
We took her home and everything seemed to be going well. We adjusted to our new family. My mother-in-law stayed to help me with F because I was unable to lift him. I can remember this day as if it was yesterday. My mother-in-law says to me "I noticed Cienan's eye has a funny look to it in certain light." Then she showed me what she saw. In just the right light you could see the light bounce off the inside of Cienna's eye and shimmer in a weird pink reflective way. It was almost like when a cat or dog's eyes reflects light, except a different color.
Monday morning I call the pediatricians office. I made an appointment for the following day. The next day is Valentines Day. R and I take her to the pediatrician and I show her exactly what my mother-in-law saw. Cienna's red reflex was normal, but the eye had that reflective glow. Our pediatrician says to us it could be a congenital detached retina or this "one really rare thing called retinoblastoma, but it's so rare a pediatrician may never ever see a case of it in their entire career." We leave the appointment knowing we will be referred to a pediatric opthamologist who we already knew because she was F's doctor.
I can remember going to dinner and a movie with R that night. I don't remember what we saw or even if we talked about what happened at the pediatrician's office that morning. I just remember neither of us could or would be prepared to deal with what was to come.
The phone rang at about 9 am. It was the ophthalmologist's office. They were calling to find out how soon we could get Cienna into the office. You'd think that I'd have really thought about this call and what it meant, the urgency of it. I was naive and had no clue. R and I arrive at the appointment and we wait and wait. They are literally squeezing us in. The doctor comes in does her initial evaluation and then she needs to dilate Cienna's eyes so we wait some more. Eventually, we've been there long enough that R needs to leave for work. Finally, the time comes when the doctor comes in for the detailed exam of Cienna's eyes. They put these little metal things on her eyelids to force them to stay open and it was HORRIBLE. Cienna was crying and crying. It was very unpleasant. After my new baby girl is done being tortured, the doctor looks right at me and says "She has retinoblastoma in both eyes. The right eye's tumor is very large. I'm going to immediately send you to Children's for an MRI. I will refer you to UCSF or Children's Hospital Los Angeles." What? My head is spinning. I'm not really sure I'm grasping the situation at this moment.
I call R and his mom. R leaves work early or his mom comes to get us. I can't really remember. We head to the local children's hospital for the MRI. We run into my favorite doctor, Dr. Hutch. F's neurologist. He is shocked to see us. We explain what's happening. His look should have told me a lot, but again CLUELESS! The ophthalmologist calls us on the hospital phone to give us the results. Cienna's right eye is 98 percent tumor and needs to be removed IMMEDIATELY! We are told she will call us later in the evening to tell us which hospital we are going to be referred to. Our heads are spinning!
The phone finally rings. We are told that arrangements have been made with the Dr. in Los Angeles. We need to leave the next morning. It's Thursday. The surgery is scheduled for Friday. We are in shock.
We get up and leave the house as early as possible. We arrive with the MRI films and we are waiting in the eye clinic. The doctor comes in and tells us the procedure to remove the eye is very simple. All aspects are covered and the recovery process. Then he proceeds to tell us that she will be referred to hematology oncology and they will put together her treatment plan for her CHEMOTHERAPY. R and I look right at each other.
The room is spinning. "What? Chemotherapy You say?"
Doctor "Yes, chemotherapy that is how we treat retinoblastoma in conjunction with laser therapy..." more things are said, but at that moment. My head is spinning and my heart is broken into a million pieces once again.
Me "You mean this is cancer."
Doctor, "Yes, retinoblastoma is a rare children's cancer that affects the eyes. She has the bilateral version..." then he goes into the blah, blahs about the genetic aspect of the disease.
I don't think we were really listening anymore because we were just told that our daughter had been BORN with cancer. Cancer grew in that right eye all through her in-utero development.
**Their Newsletter just arrived in my inbox. If I can figure out how to imbed or attach it I will. For now here is the link:
Retinoblastoma International
Sunday, March 11, 2012
Some Things are Better Left Unsaid
So I recently found out that a former friend of mine (note the word "former") has recently announced that she's expecting. I'm super excited for her. Being a mom has been the best job of my life. I've tried to stay connected with this friend here and there. She was my training partner for a year or two and we logged tons of miles on our feet and on our bikes. Spending that much time together you become pretty good friends.
When I started having to cut back on training because my kids needed me things began to fizzle. She dropped me so fast and pretty much stopped contacting me. I was fairly hurt by te fact that I was pretty disposable since I thought we were pretty good friends.
So this past couple of weeks we've been communicating via email. We had scheduled on the calendar a time to meet up for coffee or go to lunch. We confirmed the day before and te next day she kind of left me hanging. She wasn't feeling well only to find out later it was due to the morning sickness.ok I'll give her that, but not even a call or text message to cancel?
Recently we were talking about a half-marathon in an email conversation. I mention who I planned on running. I get a reply that states the friend I plan on running with is riding in the limo with them to the race. Ok, I'm not looking for an invite or anything, but really she has to tell me she's doing something fun and fabulous with a group of people and drive home the fact that I'm not invited. Was it to make me feel bad? Was it to point out that my life is isolating or I suck as a friend so no one wants to include me.
I can remember early in our friendship. The whining and crying over one of her now best friends and how that individual treated her. How they made her feel badly about herself. Clearly she doesn't recall what that feels like. I think I'm completely over this friend.
When I started having to cut back on training because my kids needed me things began to fizzle. She dropped me so fast and pretty much stopped contacting me. I was fairly hurt by te fact that I was pretty disposable since I thought we were pretty good friends.
So this past couple of weeks we've been communicating via email. We had scheduled on the calendar a time to meet up for coffee or go to lunch. We confirmed the day before and te next day she kind of left me hanging. She wasn't feeling well only to find out later it was due to the morning sickness.ok I'll give her that, but not even a call or text message to cancel?
Recently we were talking about a half-marathon in an email conversation. I mention who I planned on running. I get a reply that states the friend I plan on running with is riding in the limo with them to the race. Ok, I'm not looking for an invite or anything, but really she has to tell me she's doing something fun and fabulous with a group of people and drive home the fact that I'm not invited. Was it to make me feel bad? Was it to point out that my life is isolating or I suck as a friend so no one wants to include me.
I can remember early in our friendship. The whining and crying over one of her now best friends and how that individual treated her. How they made her feel badly about herself. Clearly she doesn't recall what that feels like. I think I'm completely over this friend.
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