So it has been 6 months since my last post. Holy cow! I am totally slacking on blogging about our life (I am sure my readers are happy for a break though) :). I do feel there should be some updates to this blog, however, as much as changed in our little household. First of all, as many know, I am pregnant! With another little girl - so by February we will have three beautiful little girls running us ragged and making our hearts swell even more. Right now I am 26 weeks . . . and here are some of my thoughts.
It took us a LONG time to decide to try to get pregnant again. We had actually decided we were done. With everything we dealt with Brooklynn, and three years of doctors appointments, and the fear of genetic testing, and fear of the unknown, we didn't want to risk it. We were afraid. We were nervous. We didn't want to push our fate. But we received testing that showed that Sam and I did not have the PTEN mutation. Only I am the carrier of the alpha-5 reductase deficiency (all described in previous posts). So the risk of us passing on any type of genetic disease was slim. And the risk of us having a baby with another genetic disease was the same as every other person out there. That brought us a little relief.
But that wasn't the whole picture. My pregnancies haven't been easy. Izzy was easy - until I hit 32 weeks and I started having contractions, started dilating, and spent 2 weeks in the hospital going in and out of labor. Then with Brooklynn, due to my history we were cautious. However, at 19 weeks ultrasound, we found my cervix was funneling, and was shortening. Fearful that it was my cervix that caused the issues with Izzy, I was put on modified bedrest from 19 weeks until 30 weeks. So was my body telling me that I am not meant to be pregnant? Both girls were born at 36 weeks, and overall pretty healthy at birth.
So after 3 years, we decided that maybe we could reevaluate our thoughts of being done. This all occurred of course after we sold ALL of our baby stuff. We were at a different place in our lives, and it had been 4 years since I was last pregnant. Maybe this time would be different? So we decided to give it a go. I was in a different job that I didn't have to be on my feet all day. I could listen to my body and relax if I needed to, as I had more flexibility. The girls were older and able to care more for themselves, which decreased the demand on my body. So we spent 8 months trying for a baby. And finally, the last month we were going to try before giving it a break for another year, I got pregnant.
So I have made it to 26 weeks. And every week I live in fear that my body will start failing me. That my body will start contracting. I question whether we made the right decision. But every week we get further along in my pregnancy, I see that we have made it further than we did with Brooklynn before precautions. Maybe this pregnancy will be different? I will continue to hold my breath until I get to 28 weeks. At that point, I will be able to let myself breath a couple of times here and there until we get to 32 weeks. After 32 weeks, I will be ecstatic if we can make it to 36 weeks. And than if I could go term? Than maybe we will consider having a fourth child.
Yep - I live in fear about my decision to try again. But this pregnancy has been so different, so I pray we made the right decision. Every week I look at a baby at work who is the same gestation as what I currently am. Every time we get a baby who has a diagnosis of a genetic disease, I live in fear again that maybe this time we are going to encounter something completely different and this time it may be more dangerous or scary. I have to remind myself that we have done everything possible to guarantee this pregnancy will be different, and that we have done everything right. And our risk is the same as the rest of the population for any type of disorder.
The girls are SOO excited for a little sister. I hope we can have a little sister born that is healthy and able to come right home so that the girls can start being the big sister they want to be. Izzy has come up with multiple names, including Margaret, Lucy, Jessie, and more. Brooklynn has gone between naming the baby "falcon" or "ironman". They both get a little nervous when they feel baby move but love talking to her. I am grateful for every week we make it closer to term. So those are my random thoughts about getting pregnant, my fears, my excitements, my nervousness.
Brooklynn's genetic disorder is scary to me still - any day we could find a bump or a lump, or she could develop symptoms that suggest a growth or even the "c" word. I am able to manage it better in my head and not let it overpower me. I go months now between researching PTEN - before I was looking it up at least once a week. I am still diligent to make sure there is no up to date information, but it is not as obsessive as it was before.
Brooklynn has her yearly thyroid ultrasound next week. I am praying there are no growths or no concerns, just like the last two years. That would make me happy. She also has a dermatology appointment next week due to a growth on her nose and a change in the look of one of her freckles/moles on her thigh. I am hoping these are benign and of no concern. But I don't want to be lazy and think it is nothing and not take her in. This will be our life - every change we will need to be careful with and not sit on. Because quick diagnosis and treatment are going to be imperative with her - so we will have to be diligent to watch her closely and identify changes so that we can make sure we get her evaluated quickly. So next week I am hoping to have two appointments that we hear the words "normal". I would love it!
So there are some of the changes in a nutshell. The nice thing about not posting in 6 months? That means there have been no significant changes in anybody's health - that we have been able to live a normal life working full time, managing a household and a marriage, two amazing girls, and me going to school, Life is hectic but fabulous!
Wednesday, November 5, 2014
Tuesday, May 6, 2014
It's been awhile...
It has been a while since I have posted on this blog, so I thought I would just do a little journaling, for my own sake. I never posted the girls' letters for the birthdays this year. That makes me feel terrible. Izzy turned 6 and Brooklynn turned 4 - I can't believe they have grown so fast! Izzy is truly amazing. She is bright, funny, caring, loving, athletic, and just plain awesome. She is 6 going on 16 some days, throwing her little attitude around when she doesn't get her way and this drives me CRAZY! However, if she is this way when she is 16, I think I can manage. She always wants to help others, and any time she sees someone sad, she wants to cheer them up with a hug or a story, or just by distracting them with playing. She tells me she loves me all the time and I love that she understand what that means. She tells me everything, and even when it is hard for her, she still knows she can come to me. I hope she always feels that way. I am amazed at how much she has learned, from addition and subtraction, to reading, to science, to the world. She is a sponge and just sucks in all the knowledge and really enjoys finding out new information.
Brooklynn is her amazing self as well. She is resilient, strong, loving, caring, funny (hilarious actually), energetic, interactive, and creative. She has made significant improvements this year by progressing with her interaction skills at school - she has "best friends", she plays, she tells stories, and I love hearing her little voice talk. After years of not being able to explain how she was feeling, or to tell us a story, this milestone truly makes my heart grow! She is a little more timid now than she used to be with things, but this is a good thing - she used to be fearless, now she is starting to understand what limits she should have. Yet she pushes past when she thinks she can't do it any more with encouragement. She is learning her letters, she is writing most of her name, she is starting to understand the concept of numbers. We have decreased the amount of follow up appointments (actually, most specialists have officially cleared us unless something pops up). She is able to finally be a girl who goes to the doctor when she is sick, not just to evaluate what could be. I love that. I can't wait to see how much further she is in another year from now! Even her teacher, when we sat down to go over her IEP, didn't feel like she was the same girl as the year before. This teacher didn't have her last year, and she didn't see her struggles. So it was nice to see that her IEP was no longer pertinent (mostly) and that she has made such significant strides in improvement. I love my girls, and am very grateful for all the things they teach me as the years go on.
We are trying to get into the Cleveland Clinic to meet with Dr. Charis Eng, who is the expert in PTEN. We are really hoping we can go this summer, meet with her and other specialists, and just get an idea as to what to expect. There is also a research study about developmental delays and milestones, so we will be enrolling her (hopefully) in this, and be receiving a full blown developmental evaluation from someone who understand PTEN and the struggles that others with this diagnosis face. The knowledge and expertise will be amazing to hear - not that the doctors here aren't knowledgeable, and some actually see other patients with PTEN. But this is a clinic actually devoted to PTEN! How exciting.
So we will see what this next year brings. I am anxious, excited, nervous, hopeful, and truly grateful for every day.
Brooklynn is her amazing self as well. She is resilient, strong, loving, caring, funny (hilarious actually), energetic, interactive, and creative. She has made significant improvements this year by progressing with her interaction skills at school - she has "best friends", she plays, she tells stories, and I love hearing her little voice talk. After years of not being able to explain how she was feeling, or to tell us a story, this milestone truly makes my heart grow! She is a little more timid now than she used to be with things, but this is a good thing - she used to be fearless, now she is starting to understand what limits she should have. Yet she pushes past when she thinks she can't do it any more with encouragement. She is learning her letters, she is writing most of her name, she is starting to understand the concept of numbers. We have decreased the amount of follow up appointments (actually, most specialists have officially cleared us unless something pops up). She is able to finally be a girl who goes to the doctor when she is sick, not just to evaluate what could be. I love that. I can't wait to see how much further she is in another year from now! Even her teacher, when we sat down to go over her IEP, didn't feel like she was the same girl as the year before. This teacher didn't have her last year, and she didn't see her struggles. So it was nice to see that her IEP was no longer pertinent (mostly) and that she has made such significant strides in improvement. I love my girls, and am very grateful for all the things they teach me as the years go on.
We are trying to get into the Cleveland Clinic to meet with Dr. Charis Eng, who is the expert in PTEN. We are really hoping we can go this summer, meet with her and other specialists, and just get an idea as to what to expect. There is also a research study about developmental delays and milestones, so we will be enrolling her (hopefully) in this, and be receiving a full blown developmental evaluation from someone who understand PTEN and the struggles that others with this diagnosis face. The knowledge and expertise will be amazing to hear - not that the doctors here aren't knowledgeable, and some actually see other patients with PTEN. But this is a clinic actually devoted to PTEN! How exciting.
So we will see what this next year brings. I am anxious, excited, nervous, hopeful, and truly grateful for every day.
Saturday, October 26, 2013
One Year Later
It has been one year since we received the phone call diagnosing Brooklynn with PTEN Hamartoma Tumor Syndrome. Depending on the day, sometimes I can't believe it has only been a year, and other times I can't believe it has already been a year. In this last year, I have learned a few things about myself and my family.
1. Those who care about you will stick by you through everything. Even when you are at your worse (because believe me, I was very emotional in the beginning), they understand you and allow you to not be at your best at all times.
2. Sometimes having a diagnosis does relieve some of the stress. Not being diagnosed, Brooklynn had to be at the doctors at least every month. Now that we have a diagnosis, we are going months between appointments. November is our thyroid ultrasound, and the only other appointment we have that we know of coming up is cardiology in April. To us, that is amazing. Any month we can go without doctors appointments really is a blessing.
3. Sometimes having a diagnosis really really sucks. I am glad we know what to look for. But I hate that we know what to look for. That we have to watch for signs of overgrowth. That we have to be aware of neurological symptoms that can indicate growths in the brain. That we have to watch for signs of GI polyps. And so on and so forth. And no matter how much time passes from the time of diagnosis, it will still be difficult knowing that this is her life...
4. At times, I am glad that I have a medical background. But there are times where I can turn everything over and just ask Brooklynn's doctors to be 100% responsible for knowing all of her possibilities. I hate carrying that load on myself. I want to look at her like my daughter, not like she is a patient. I am getting a little better at not "examining" her all the time. But I know I always have to look for things.
5. Brooklynn is truly an amazing young girl. I knew this before we had a diagnosis, but I know it even more now. Because even the barriers she has had to overcome, such as speech delay, muscle weakness, illnesses - she is still the HAPPIEST girl I have ever met. She throws fits, yes, but her overall demeanor is happy go lucky. It's pretty amazing to see.
6. I am very glad we have Izzy. Their sisterly bound is amazing. When Brooklynn has tests or any doctor's appointments, Izzy is right there telling her everything will be okay. She wants to make her better. She doesn't like to see her sad. I think this is going to have the been stronger as sisters. Brooklynn will need her support, and Izzy will enjoy Brooklynn's positive attitude. (I pray she keeps that positivity through everything).
7. We are stronger than we think we are. And life does really go on. I can sit here and dwell on everything that can happen. Or I can sit here and think of all that has not happened and how every day is truly amazing. I am trying to enjoy life every day with my kids. I take in every second that we go without any illness or fears of something being wrong. Because I have learned it can be taken away quickly.
8. I am still pissed some days. I am pissed that all of Brooklynn's life, the opportunity for her to be a young girl was taken away from her. My opportunity to look at her like "every other kid" was taken away from me. And I also am extremely happy to learn that her uniqueness and the fact that she is not like "every other kid" is what makes me love her even more.
9. Genetics testing really does stink. Because you open the door, and you can keep on going. We spent a whole year drawing labs. One year! That is a long time to have a lab drawn, get results, and decide which lab to draw next. And that you find out a piece of information, how it can truly effect every part of your being and your thoughts about where you were going with life. And you know, insurance companies and medical bills - they are not fun to deal with either. You have to stay on your toes.
So it has been a year. And as a family, we are stronger. And I am learning to not allow myself to dwell. I still stay up to date on journal articles. But I don't stress out about them like I did before. Because one day you can read an article that states cancer risk can be up to 85%, the next day you see an article that says 50%. So, they are still learning. And hopefully by the time cancer is a possibility in her life, we will be hundreds of miles ahead of where we are now, and cancer will no longer be such a scary word because there will be a cure, a preventative medication, something, that decreases her risk. So my hope comes in a lot more than it did when we received the diagnosis.
So far, this diagnosis has not reared it's ugly head. So far, it is allowing us to get the services Brooklynn needs to thrive and continue to grow. I am grateful for that. And while I wear my "medical hat" a little more than I would like, I know that I will be as vigilant as I can. And I know our family will continue to become stronger. I am curious as to where we will be in one year...
1. Those who care about you will stick by you through everything. Even when you are at your worse (because believe me, I was very emotional in the beginning), they understand you and allow you to not be at your best at all times.
2. Sometimes having a diagnosis does relieve some of the stress. Not being diagnosed, Brooklynn had to be at the doctors at least every month. Now that we have a diagnosis, we are going months between appointments. November is our thyroid ultrasound, and the only other appointment we have that we know of coming up is cardiology in April. To us, that is amazing. Any month we can go without doctors appointments really is a blessing.
3. Sometimes having a diagnosis really really sucks. I am glad we know what to look for. But I hate that we know what to look for. That we have to watch for signs of overgrowth. That we have to be aware of neurological symptoms that can indicate growths in the brain. That we have to watch for signs of GI polyps. And so on and so forth. And no matter how much time passes from the time of diagnosis, it will still be difficult knowing that this is her life...
4. At times, I am glad that I have a medical background. But there are times where I can turn everything over and just ask Brooklynn's doctors to be 100% responsible for knowing all of her possibilities. I hate carrying that load on myself. I want to look at her like my daughter, not like she is a patient. I am getting a little better at not "examining" her all the time. But I know I always have to look for things.
5. Brooklynn is truly an amazing young girl. I knew this before we had a diagnosis, but I know it even more now. Because even the barriers she has had to overcome, such as speech delay, muscle weakness, illnesses - she is still the HAPPIEST girl I have ever met. She throws fits, yes, but her overall demeanor is happy go lucky. It's pretty amazing to see.
6. I am very glad we have Izzy. Their sisterly bound is amazing. When Brooklynn has tests or any doctor's appointments, Izzy is right there telling her everything will be okay. She wants to make her better. She doesn't like to see her sad. I think this is going to have the been stronger as sisters. Brooklynn will need her support, and Izzy will enjoy Brooklynn's positive attitude. (I pray she keeps that positivity through everything).
7. We are stronger than we think we are. And life does really go on. I can sit here and dwell on everything that can happen. Or I can sit here and think of all that has not happened and how every day is truly amazing. I am trying to enjoy life every day with my kids. I take in every second that we go without any illness or fears of something being wrong. Because I have learned it can be taken away quickly.
8. I am still pissed some days. I am pissed that all of Brooklynn's life, the opportunity for her to be a young girl was taken away from her. My opportunity to look at her like "every other kid" was taken away from me. And I also am extremely happy to learn that her uniqueness and the fact that she is not like "every other kid" is what makes me love her even more.
9. Genetics testing really does stink. Because you open the door, and you can keep on going. We spent a whole year drawing labs. One year! That is a long time to have a lab drawn, get results, and decide which lab to draw next. And that you find out a piece of information, how it can truly effect every part of your being and your thoughts about where you were going with life. And you know, insurance companies and medical bills - they are not fun to deal with either. You have to stay on your toes.
So it has been a year. And as a family, we are stronger. And I am learning to not allow myself to dwell. I still stay up to date on journal articles. But I don't stress out about them like I did before. Because one day you can read an article that states cancer risk can be up to 85%, the next day you see an article that says 50%. So, they are still learning. And hopefully by the time cancer is a possibility in her life, we will be hundreds of miles ahead of where we are now, and cancer will no longer be such a scary word because there will be a cure, a preventative medication, something, that decreases her risk. So my hope comes in a lot more than it did when we received the diagnosis.
So far, this diagnosis has not reared it's ugly head. So far, it is allowing us to get the services Brooklynn needs to thrive and continue to grow. I am grateful for that. And while I wear my "medical hat" a little more than I would like, I know that I will be as vigilant as I can. And I know our family will continue to become stronger. I am curious as to where we will be in one year...
Thursday, August 22, 2013
What a year this will be!!
I can't get over how many things are going to be different this year!! Many of them are going to be so exciting, but challenging. First off Izzy started Kindergarten!! I can't believe how big she is now!! She is enjoying school so much, and is loving learning all the new things and interacting with new people. She is getting wiped out though, falling asleep by 8:30 most nights (tonight she was out by 7:30). We signed her up for another year of dance, this time graduating to the Combo class, where she will learn more technique for tap and ballet. She keeps asking me about gymnastics, so I told her we will enroll her in gymnastics during the summer so she can experience both! She was thrilled. I also am doing a very grown up thing and have signed up for...gulp...PTA!! Holy cow I can't believe I have a child old enough for me to do things for in PTA. Crazy.
Brooklynn's starts back at Early Childhood Center this year, hopefully beginning the transition from a special education classroom into the regular preschool classroom. This means she will get to interact with children who don't have as many developmental delays. I am really hoping she can start transitioning this year to spend half her time in the Title 1 Preschool, and maybe next year be completely in the preschool, with just having to have therapies every once in a while. The elementary school we go to does not have a special education program, only therapies, and therefore fi she can't transition to a regular class, she will need to go to a different school. We have 2 years for this to happen, so I am glad we are slowly transitioning her so it's not a shock.
I have also made a big step this year and am starting back at college. I am going to Benedictine University online to get my Masters of Science in Nursing for Nursing Executive Leadership. I hope to get into program development, management, something that I can help create and initiate policies and procedures that help with families and children who have special needs manage their medical care easier. I am hoping to get the tools I need to create a program that helps parents manage their child's care.
We have dealt with stomach issues with Izzy. She has complained her stomach hurts since May. So in July, we started her on lactose free milk. It seems to be helping. She seems to do okay with occasionally cheese, yogurts, ice cream, but it was the constant milk drinking. I don't know if this was the solution, or if we will face with stomach issues again, but for now we will stick with lactose free milk. Her doctor feels like she might have a lactose intolerance, so we will just keep monitoring her and if her stomach pains start back up, we are to go back.
I am really enjoying us not having doctors appointments or lab tests pending. We are having Brooklynn's PT look at her at school, as she is starting to rotate her ankles a little more inward, and her toes are pointing out a little more so I am wanting to see if her hot dog inserts are enough to help her muscle tone, or if she needs something that goes up to her ankles. Hopefully they will let us know if it is anything to be concerned about. So we might end up having a PT appointment but we will see. After that our next appointment that is planned will be a thyroid ultrasound in November, and than a cardiology appointment in April!! Yep that's right - in six months we only have 2 planned appointments! This is so amazing!
I have learned, though, based on other people who have experience with PTEN that you never can get too comfortable, and to appreciate all the time you have where doctors visits are not a part of your world. Things seem to just pop up out of nowhere, mostly causing pain, growths, etc that are of concern. I feel like I have to be hypervigilant, which stresses me out. I have to always be aware and do assessments, because I need to catch something at the first sign. If I allow myself to relax and not watch for things, I might not catch something and it might be too late. Today I read about a little girl who is 6 who has PTEN who just had to have her leg amputated because of a tumor that grew that cut off circulation to her body. They had to amputate her leg to save her life. While I know this will probably never happen to us, the fear that something similar might happen freaks me out. There seem to be lots of growths that pop up on kids that cause the to have to have surgery, that affects them through pain, or that cuts off blood supply. It's scary. It creates a sense of fear in me. It makes me hypervigilant. So to all those people who are tired of hearing me talk about it, I apologize. I started this blog post off with some really amazing things. And than it ends with my worries. But again, this is my blog, and it is where I can rant. I hate it, because people talk about their kids, or people they know, and the bad things that happen, and it seems many of those things are possibilities in our lives. I have a coworker who talked about her son's best friend from high school, who had an AVM on his brain, which caused him to get really sick and had to have brain surgery. This could happen to us. She also talked about her son who has GI issues, which increases his risk of GI cancer. This can happen to us. I have a former coworker who is dealing with breast cancer at a much too young of age, and my husband's cousin who has dealt with this battle as well, much too young. This can happen to us. I know this may never happen to us. But I know in the back of my mind that at any time, something COULD happen. Her chances are too high for something to NOT happen. I know something can happen to any of us, but I hate that there are SOOO many things that can happen to her. Just by having this mutation, her risk is too high for too many things. TO a mom, this sucks, it stresses me out. I thought I would be over this stress by now. But I am not. Just when I think I am better and I can move on, I hear another story that makes me think "what if". I hate that.
Brooklynn is such a fun loving kid. She is always happy. She is always cuddly with us. She is funny. She has no fear (sometimes to a fault). She loves to dance, she loves to sing. The thought of anything happening to take any of that away scares me. She is blessed with an amazing big sister. Izzy is amazing with her. She helps take care of her - I know Izzy will always be there, to help support her, help her through her troubles, love her, dote on her. The sisterly bond between these two is amazing. Our family is so amazing. I pray we have many, many, many years where we have no health scares. I am weak - I know I am weak. I cry at the drop of a hat. I am fearful and a worry wart. Those are my weaknesses. My kids are my strengths, and they are my biggest weakness. I don't know if I am strong enough fro anything to happen to them. I know these are all worries that I shouldn't think about. But I am still processing what our life will be. I am still adjusting to that fact that it is not how I had planned. Even though life is not how I planned, I am still extremely blessed. My kids are truly amazing!
Brooklynn's starts back at Early Childhood Center this year, hopefully beginning the transition from a special education classroom into the regular preschool classroom. This means she will get to interact with children who don't have as many developmental delays. I am really hoping she can start transitioning this year to spend half her time in the Title 1 Preschool, and maybe next year be completely in the preschool, with just having to have therapies every once in a while. The elementary school we go to does not have a special education program, only therapies, and therefore fi she can't transition to a regular class, she will need to go to a different school. We have 2 years for this to happen, so I am glad we are slowly transitioning her so it's not a shock.
I have also made a big step this year and am starting back at college. I am going to Benedictine University online to get my Masters of Science in Nursing for Nursing Executive Leadership. I hope to get into program development, management, something that I can help create and initiate policies and procedures that help with families and children who have special needs manage their medical care easier. I am hoping to get the tools I need to create a program that helps parents manage their child's care.
We have dealt with stomach issues with Izzy. She has complained her stomach hurts since May. So in July, we started her on lactose free milk. It seems to be helping. She seems to do okay with occasionally cheese, yogurts, ice cream, but it was the constant milk drinking. I don't know if this was the solution, or if we will face with stomach issues again, but for now we will stick with lactose free milk. Her doctor feels like she might have a lactose intolerance, so we will just keep monitoring her and if her stomach pains start back up, we are to go back.
I am really enjoying us not having doctors appointments or lab tests pending. We are having Brooklynn's PT look at her at school, as she is starting to rotate her ankles a little more inward, and her toes are pointing out a little more so I am wanting to see if her hot dog inserts are enough to help her muscle tone, or if she needs something that goes up to her ankles. Hopefully they will let us know if it is anything to be concerned about. So we might end up having a PT appointment but we will see. After that our next appointment that is planned will be a thyroid ultrasound in November, and than a cardiology appointment in April!! Yep that's right - in six months we only have 2 planned appointments! This is so amazing!
I have learned, though, based on other people who have experience with PTEN that you never can get too comfortable, and to appreciate all the time you have where doctors visits are not a part of your world. Things seem to just pop up out of nowhere, mostly causing pain, growths, etc that are of concern. I feel like I have to be hypervigilant, which stresses me out. I have to always be aware and do assessments, because I need to catch something at the first sign. If I allow myself to relax and not watch for things, I might not catch something and it might be too late. Today I read about a little girl who is 6 who has PTEN who just had to have her leg amputated because of a tumor that grew that cut off circulation to her body. They had to amputate her leg to save her life. While I know this will probably never happen to us, the fear that something similar might happen freaks me out. There seem to be lots of growths that pop up on kids that cause the to have to have surgery, that affects them through pain, or that cuts off blood supply. It's scary. It creates a sense of fear in me. It makes me hypervigilant. So to all those people who are tired of hearing me talk about it, I apologize. I started this blog post off with some really amazing things. And than it ends with my worries. But again, this is my blog, and it is where I can rant. I hate it, because people talk about their kids, or people they know, and the bad things that happen, and it seems many of those things are possibilities in our lives. I have a coworker who talked about her son's best friend from high school, who had an AVM on his brain, which caused him to get really sick and had to have brain surgery. This could happen to us. She also talked about her son who has GI issues, which increases his risk of GI cancer. This can happen to us. I have a former coworker who is dealing with breast cancer at a much too young of age, and my husband's cousin who has dealt with this battle as well, much too young. This can happen to us. I know this may never happen to us. But I know in the back of my mind that at any time, something COULD happen. Her chances are too high for something to NOT happen. I know something can happen to any of us, but I hate that there are SOOO many things that can happen to her. Just by having this mutation, her risk is too high for too many things. TO a mom, this sucks, it stresses me out. I thought I would be over this stress by now. But I am not. Just when I think I am better and I can move on, I hear another story that makes me think "what if". I hate that.
Brooklynn is such a fun loving kid. She is always happy. She is always cuddly with us. She is funny. She has no fear (sometimes to a fault). She loves to dance, she loves to sing. The thought of anything happening to take any of that away scares me. She is blessed with an amazing big sister. Izzy is amazing with her. She helps take care of her - I know Izzy will always be there, to help support her, help her through her troubles, love her, dote on her. The sisterly bond between these two is amazing. Our family is so amazing. I pray we have many, many, many years where we have no health scares. I am weak - I know I am weak. I cry at the drop of a hat. I am fearful and a worry wart. Those are my weaknesses. My kids are my strengths, and they are my biggest weakness. I don't know if I am strong enough fro anything to happen to them. I know these are all worries that I shouldn't think about. But I am still processing what our life will be. I am still adjusting to that fact that it is not how I had planned. Even though life is not how I planned, I am still extremely blessed. My kids are truly amazing!
Tuesday, July 2, 2013
Father's Day Post - Way late :)
So I know this is super late, but things have been really crazy lately. So I am going to be writing 2 letters - one to my amazing dad, and one to my hubby!
Dear Dad,
Thank you so much for all you do for our family! You are the strength that I need many times throughout my life. When I think of how things were growing up, we always knew you were there for us. You might be silently sitting in the room, but we knew you would be there to support us no matter how tired you were from work the night before, or if you had to go in that night, it didn't matter. You encouraged us, as women, to be strong. You encouraged us to never think we were any less than a man. You taught us to accept no less than the best - that we deserve the best, and we deserve to be treated with respect and dignity. You always made sure we knew that we could do anything we wanted to do, and you provided us with the tools we needed to achieve our goals. You taught us to never expect anything less than the best from ourselves. Even if the best we could give was not necessarily the best in the group - you taught us to try as hard as we can. That even if we didn't come in first place, as long as we gave it our all, that is all that mattered. You taught us to accept our failures, but to make sure we learned from them. You were always a little tough on us, not because you were mean, but because you wanted to teach us the value of hard work. And that is so much appreciated. Because now, as a grown woman, I can take care of myself. I take pride in the fact that I work hard, and to know that my dad had a huge hand in teaching me that.
You also taught me the true meaning of undeniable love for my children. I know if we ever needed anything you would drop everything and help us out, whether it is physically, financially, or emotionally. You drive cross country for your family, even in cars that might not make it - you take that risk so you can see the ones you love. You taught us the value of a dollar, and to appreciate what we have. And i hope I instill all those in my kids. I have to say, the hugs you give now are a little tighter, and little longer, and I love them every time. Thank you dad, for all you have ever given us and taught us. The skills and the values you taught me will carry on with my kids. And I love that my kids get to spend so much time with Papa. There is no denying how proud you are of them and of us. The way you look at my kids, and the love you have for them that displays on your face, makes me feel so great. I know that they feel love every where they go, and that makes me feel amazing!! The girls will always be talking about their adventures with their papas. You let them explore and find things out for themselves, even when "helicopter" mom might freak out. You allow the girls to go a little further than I might, and I appreciate that. Because they learned how to go on the monkey bars, how to climb trees, and I know that is mainly due to the fact that you don't restrict them. You let them, safely, explore their limits, and you are ok with letting them fail. But you encourage them to try again. In this world, that is a lesson that is not taught very frequently, and so that lesson is very much appreciated. Thank you for all of that.
I hope you know how much we love and appreciate all you do (every single one of us). My strength and my love for others comes from you and I hope you know how much I appreciate all the lessons you have taught me, and continue to teach me, and all the lessons you give my children that I might not be as good as teaching them.
You are loved more than you will ever know.
Love you,
Beckie
Dear Sam,
Here is my letter to you for all to read. I want you to know how much you are appreciated. How much I have seen you grow and mature, not only as a father, but as a man. The undeniable love you have for your children makes me love you even more than I could imagine. You never cease to amaze me with how much you love the girls. You have sacrificed a lot to be there with us as a father, a husband, and a man. You are teaching the girls how a man should treat a woman. You are always willing to be goofy with the girls. You don't allow them to ever question whether you love them. The fact that you make sure every night you go in and give them a kiss and tell them you love them before they fall asleep, that will stay with them forever. They won't ever doubt that their daddy loves them. I appreciate that you enjoy staying home with the family. That watching a movie and lounging on the couch with the kids is just as exciting to you as going out used to be. The smile you get on your face when you interact with the girls shows how much you truly love them.
Thank you for being there for the girls. Thank you for being there for me. Thank you for being my strength when I felt like I was falling apart, through everything we have been through this year. Thank you for bringing me back to reality and reminding me to concentrate on the here and now, not the "what ifs". You always try to make it the kids events whenever you can. I hope you know how much you are loved and appreciated, not only by me, but by your children. And that is not something every man can say!
Love you loads,
Me
Dear Dad,
Thank you so much for all you do for our family! You are the strength that I need many times throughout my life. When I think of how things were growing up, we always knew you were there for us. You might be silently sitting in the room, but we knew you would be there to support us no matter how tired you were from work the night before, or if you had to go in that night, it didn't matter. You encouraged us, as women, to be strong. You encouraged us to never think we were any less than a man. You taught us to accept no less than the best - that we deserve the best, and we deserve to be treated with respect and dignity. You always made sure we knew that we could do anything we wanted to do, and you provided us with the tools we needed to achieve our goals. You taught us to never expect anything less than the best from ourselves. Even if the best we could give was not necessarily the best in the group - you taught us to try as hard as we can. That even if we didn't come in first place, as long as we gave it our all, that is all that mattered. You taught us to accept our failures, but to make sure we learned from them. You were always a little tough on us, not because you were mean, but because you wanted to teach us the value of hard work. And that is so much appreciated. Because now, as a grown woman, I can take care of myself. I take pride in the fact that I work hard, and to know that my dad had a huge hand in teaching me that.
You also taught me the true meaning of undeniable love for my children. I know if we ever needed anything you would drop everything and help us out, whether it is physically, financially, or emotionally. You drive cross country for your family, even in cars that might not make it - you take that risk so you can see the ones you love. You taught us the value of a dollar, and to appreciate what we have. And i hope I instill all those in my kids. I have to say, the hugs you give now are a little tighter, and little longer, and I love them every time. Thank you dad, for all you have ever given us and taught us. The skills and the values you taught me will carry on with my kids. And I love that my kids get to spend so much time with Papa. There is no denying how proud you are of them and of us. The way you look at my kids, and the love you have for them that displays on your face, makes me feel so great. I know that they feel love every where they go, and that makes me feel amazing!! The girls will always be talking about their adventures with their papas. You let them explore and find things out for themselves, even when "helicopter" mom might freak out. You allow the girls to go a little further than I might, and I appreciate that. Because they learned how to go on the monkey bars, how to climb trees, and I know that is mainly due to the fact that you don't restrict them. You let them, safely, explore their limits, and you are ok with letting them fail. But you encourage them to try again. In this world, that is a lesson that is not taught very frequently, and so that lesson is very much appreciated. Thank you for all of that.
I hope you know how much we love and appreciate all you do (every single one of us). My strength and my love for others comes from you and I hope you know how much I appreciate all the lessons you have taught me, and continue to teach me, and all the lessons you give my children that I might not be as good as teaching them.
You are loved more than you will ever know.
Love you,
Beckie
Dear Sam,
Here is my letter to you for all to read. I want you to know how much you are appreciated. How much I have seen you grow and mature, not only as a father, but as a man. The undeniable love you have for your children makes me love you even more than I could imagine. You never cease to amaze me with how much you love the girls. You have sacrificed a lot to be there with us as a father, a husband, and a man. You are teaching the girls how a man should treat a woman. You are always willing to be goofy with the girls. You don't allow them to ever question whether you love them. The fact that you make sure every night you go in and give them a kiss and tell them you love them before they fall asleep, that will stay with them forever. They won't ever doubt that their daddy loves them. I appreciate that you enjoy staying home with the family. That watching a movie and lounging on the couch with the kids is just as exciting to you as going out used to be. The smile you get on your face when you interact with the girls shows how much you truly love them.
Thank you for being there for the girls. Thank you for being there for me. Thank you for being my strength when I felt like I was falling apart, through everything we have been through this year. Thank you for bringing me back to reality and reminding me to concentrate on the here and now, not the "what ifs". You always try to make it the kids events whenever you can. I hope you know how much you are loved and appreciated, not only by me, but by your children. And that is not something every man can say!
Love you loads,
Me
Monday, June 24, 2013
Dermatology Appointment and Research Labs
Today we went to our follow up for dermatology clinic. Last year, we went not knowing what we were dealing with for Brooklynn. Now we have a diagnosis. I was SOOO excited because the doctor had actually heard of PTEN Hmaratoma Tumor Syndrome, and to make things even better, he actually has had patients who have had it!! That made me feel so good because most people look at me like I am speaking a foreign language when I tell them her diagnosis. SO he took a look at her, and all of her spots look the same, and none are concerning for any types of growths or anything. He explained to me some of the things to watch for, including unexplainable bumps, colorations, and moles that are growing in size. I was able to ask him questions and he actually was able to answer them. I asked the youngest person he had seen with this and he told me 10 months of age, and that baby had a growth on their shoulder that was removed. He told me to consider buying a laundry additive that would add SPF to the clothes (right now most clothes are like an SPF of 4, and with the additive it makes clothes an SPF of 30, and it lasts for 20 washes). He said that he has seen teenagers that have spots that are concerning for cancers, because of the fact that they are more lax in applying sunscreen and they want to tan. So we just need to do lots of education for her and the importance of staying free from sunburns (of course this is important for Izzy as well, but more so for Brooklynn since her cancer rate is so much higher). I asked him about AV (or arterial venous) malformation, and he stated he does see them, and a lot of times they are red, hot to the touch, and can be any where. The most common place he has found is behind the ear, but he has seen them on the face and other places.
The nice thing is we don't have to see him every year. That with monthly exams by us her parents, and yearly at least by the pediatrician, and only making referrals if things pop up, that we don't need to be seen regularly. SO that means we have been cleared (at this time) by ONE MORE SPECIALIST!!! How exciting. He did say with this diagnosis it is like a ticking time bomb, because you never know, if ever, you will get a spot or something that will be of concern. He says it is usually a matter of time that SOMETHING pops up, but most of the time it is benign.
After our dermatology appointment, we went to get Brooklynn's labs drawn for her research study. I am not sure if I have written about the study, but we are enrolling her in a study through Cleveland CLinic (the gurus of PTEN), which will examine her blood and other people's and see if there are any links they can find to certain symptoms. She will be in a research article, which is a little scary, but it will be good in the end. If they find out anything they will give us the information, and if nothing else it will help further the information available about PTEN, that maybe some day more families will have better information that we have.
The nice thing is we don't have to see him every year. That with monthly exams by us her parents, and yearly at least by the pediatrician, and only making referrals if things pop up, that we don't need to be seen regularly. SO that means we have been cleared (at this time) by ONE MORE SPECIALIST!!! How exciting. He did say with this diagnosis it is like a ticking time bomb, because you never know, if ever, you will get a spot or something that will be of concern. He says it is usually a matter of time that SOMETHING pops up, but most of the time it is benign.
After our dermatology appointment, we went to get Brooklynn's labs drawn for her research study. I am not sure if I have written about the study, but we are enrolling her in a study through Cleveland CLinic (the gurus of PTEN), which will examine her blood and other people's and see if there are any links they can find to certain symptoms. She will be in a research article, which is a little scary, but it will be good in the end. If they find out anything they will give us the information, and if nothing else it will help further the information available about PTEN, that maybe some day more families will have better information that we have.
Sunday, June 23, 2013
June Weekend Trips!
So June has been filled with some great things. The beginning of June, Sam, the girls, and I all took a trip to St. Louis with my side of the family for my niece's wedding (Tara married Zach - her high school sweetheart). My mom, dad, sister Kristen, Alex and Mia, Sister Stephanie, Jacob and Devon, and then my half sister Susan, Half brothers Eric and Brad. It was so great to see everybody. It was the first time the girls had been to a wedding.
I posted a bunch of pictures on Facebook at
https://www.facebook.com/beckie.palmer.52/media_set?set=a.10101492875218050.1073741828.15915976&type=3.
The first day we went to the Science Center where the girls had a great time playing with chemistry sets, exploring dinosaurs, and a bunch of random other things. That night we met up with everybody and ate dinner near the Union Station. It was an interesting night, as when we went to go swimming at my parents' hotel, we got hit with tornado sirens, and had to sit in the employee lounge for about 30 minutes before we could be released. Always interesting to have to go to the bottoms of a hotel for fear of getting hit by a tornado.
Saturday, we went to Tara's wedding, which was absolutely beautiful. Saturday night after the reception, we all crashed, hoping to wake up and go to the arch or the children's museum in the morning. That night, Brooklynn woke up with a GI bug. It was not fun to travel 4 hours home with a child who has a GI bug. She was a trooper. The rest of that week, we all had the GI bug. It really was not fun. But the trip was :).
This last weekend, we took the girls to Omaha with Sam's parents. We had a blast. Saturday we drove up and took the girls to the Zoo which is always fun. It was PACKED!! There were so many people in town for baseball tournaments (the college world series was this weekend, plus there were a ton of high school tournaments going on). Word to the wise, check the calendar of events and AVOID Omaha on that week. We still had fun and the girls loved seeing the animals. Izzy, at least, had a blast. Brooklynn did not love the crowds so much and threw a lot of her fits, refused to walk, refused to ride in the stroller, etc. But she still had fun and we all had a good time. It was amazing to see her mood change when we left and went somewhere not so congested. We checked into our hotel which was really nice. We rented a 2 bedroom suite so that all of us could stay together. We got free cocktails for 2 hours, they had a movie playing in a boardroom so the girls watched part of Escape to Planet Earth. We also got complimentary breakfast made to order. Yum. The girls enjoyed swimming in the pool as well.
I posted pictures on facebook of our trip as well.
https://www.facebook.com/beckie.palmer.52/media_set?set=a.10101538074283760.1073741829.15915976&type=3
Sunday we went to the Old Market, walked by the water, went over some bridges, and did a little shopping. All and all a really great trip. Especially since before we left we all came down with a case of strep throat (except Sam luckily). But by the weekend, we were all feeling much better and able to enjoy our time.
I am happy that I finally get to blog about something joyful and NOT filled with medical news. I think we will make it more of a habit to go on weekend excursions, especially now that we have my new Escape. It is so easy to travel in that car, and the girls and us as well enjoy getting out of town, even if just for a few days. Especially when we get to enjoy it with other family members!
I posted a bunch of pictures on Facebook at
https://www.facebook.com/beckie.palmer.52/media_set?set=a.10101492875218050.1073741828.15915976&type=3.
The first day we went to the Science Center where the girls had a great time playing with chemistry sets, exploring dinosaurs, and a bunch of random other things. That night we met up with everybody and ate dinner near the Union Station. It was an interesting night, as when we went to go swimming at my parents' hotel, we got hit with tornado sirens, and had to sit in the employee lounge for about 30 minutes before we could be released. Always interesting to have to go to the bottoms of a hotel for fear of getting hit by a tornado.
Saturday, we went to Tara's wedding, which was absolutely beautiful. Saturday night after the reception, we all crashed, hoping to wake up and go to the arch or the children's museum in the morning. That night, Brooklynn woke up with a GI bug. It was not fun to travel 4 hours home with a child who has a GI bug. She was a trooper. The rest of that week, we all had the GI bug. It really was not fun. But the trip was :).
This last weekend, we took the girls to Omaha with Sam's parents. We had a blast. Saturday we drove up and took the girls to the Zoo which is always fun. It was PACKED!! There were so many people in town for baseball tournaments (the college world series was this weekend, plus there were a ton of high school tournaments going on). Word to the wise, check the calendar of events and AVOID Omaha on that week. We still had fun and the girls loved seeing the animals. Izzy, at least, had a blast. Brooklynn did not love the crowds so much and threw a lot of her fits, refused to walk, refused to ride in the stroller, etc. But she still had fun and we all had a good time. It was amazing to see her mood change when we left and went somewhere not so congested. We checked into our hotel which was really nice. We rented a 2 bedroom suite so that all of us could stay together. We got free cocktails for 2 hours, they had a movie playing in a boardroom so the girls watched part of Escape to Planet Earth. We also got complimentary breakfast made to order. Yum. The girls enjoyed swimming in the pool as well.
I posted pictures on facebook of our trip as well.
https://www.facebook.com/beckie.palmer.52/media_set?set=a.10101538074283760.1073741829.15915976&type=3
Sunday we went to the Old Market, walked by the water, went over some bridges, and did a little shopping. All and all a really great trip. Especially since before we left we all came down with a case of strep throat (except Sam luckily). But by the weekend, we were all feeling much better and able to enjoy our time.
I am happy that I finally get to blog about something joyful and NOT filled with medical news. I think we will make it more of a habit to go on weekend excursions, especially now that we have my new Escape. It is so easy to travel in that car, and the girls and us as well enjoy getting out of town, even if just for a few days. Especially when we get to enjoy it with other family members!
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