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.
Monday, June 24, 2013
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!
Monday, May 13, 2013
Mother's Day Thanks!
Dear Mom,
This letter is for you for Mother's Day! I know it's a day late, but I wanted to send you a letter that I knew you would read (and also let everybody else know how special you are to me). You are such a special woman, and one of the reasons you are so special is because you don't realize how special you are. Everybody who knows you is better off because of you. When I tell people who my mother is, they always mention "how truly amazing she is". I am a very lucky person.
You are always there for me. Even growing up, you showed me how to be a real woman, how to be strong, how to be a real mom. You tried to keep me from making mistakes, and when I truly resisted and made them any way, you were always there to pick me up and teach me how to learn from those mistakes. You set boundaries, and enforced those boundaries, but you also let me set out on my own without guilt. You let me choose my own path, even though I know at times it was hard for you to sit back and let me do it. And most of the paths I took lead to the right choice, even though sometimes I had to take the rough way.
You have always been there to dry my tears, and even though I know you struggled at times to stay strong, you knew just what to say to make me feel better. I knew in your voice that it was hard for you to maintain your strength, but you never ceased to amaze me through everything.
You have taught me how to be selfless, how to sacrifice for my children, how to truly love another person, even when it hurts. You taught me the true meaning of integrity, and what it really means to be good person. You give so much of yourself, you always forget to take for yourself. I know no matter what, I can call you up, scream, cry, and get angry, and you will just listen, and when you feel it is right you will give me advice.
I know how to raise my kids because of you. I know what values I want them to learn from me, because I learned some amazing values from you. If I am half the mother you were to me, I will have done a good job. Even the times I got so mad at you growing up, looking back, I knew you were just trying to protect me. You always knew how far to let me go without letting me completely fall flat. You taught me to not be so hard on myself, but to always push forward and to try my utmost best.
When we struggled with everything with Brooklynn, you were always there no matter what. You would drop everything and help me. When I couldn't do anything because I was on bedrest, you came to my house every day so that I could spend time with Izzy while Sam was at work. You didn't have to do that. But you knew what I needed and you sacrificed everything else for me. I will never be able to repay you for everything you have ever given me.
My kids are better because of you. They have an amazing nana who sacrifices everything for them as well. They are learning so many life lessons that I couldn't even begin to teach. I know that I can work full time, because they are being raised by an amazing woman along with us. Those memories they are creating are going to last a lifetime and I am so happy for that.
Mom, I want you to know that not only do I love you as my mom, but I love you as one of my best friends!! Thank you for everything you have ever done. It will never go unappreciated - I just hope you know how much you are appreciated and loved!
Love you always and forever, and to the moon and back,
Your youngest daughter, your surprise :)
This letter is for you for Mother's Day! I know it's a day late, but I wanted to send you a letter that I knew you would read (and also let everybody else know how special you are to me). You are such a special woman, and one of the reasons you are so special is because you don't realize how special you are. Everybody who knows you is better off because of you. When I tell people who my mother is, they always mention "how truly amazing she is". I am a very lucky person.
You are always there for me. Even growing up, you showed me how to be a real woman, how to be strong, how to be a real mom. You tried to keep me from making mistakes, and when I truly resisted and made them any way, you were always there to pick me up and teach me how to learn from those mistakes. You set boundaries, and enforced those boundaries, but you also let me set out on my own without guilt. You let me choose my own path, even though I know at times it was hard for you to sit back and let me do it. And most of the paths I took lead to the right choice, even though sometimes I had to take the rough way.
You have always been there to dry my tears, and even though I know you struggled at times to stay strong, you knew just what to say to make me feel better. I knew in your voice that it was hard for you to maintain your strength, but you never ceased to amaze me through everything.
You have taught me how to be selfless, how to sacrifice for my children, how to truly love another person, even when it hurts. You taught me the true meaning of integrity, and what it really means to be good person. You give so much of yourself, you always forget to take for yourself. I know no matter what, I can call you up, scream, cry, and get angry, and you will just listen, and when you feel it is right you will give me advice.
I know how to raise my kids because of you. I know what values I want them to learn from me, because I learned some amazing values from you. If I am half the mother you were to me, I will have done a good job. Even the times I got so mad at you growing up, looking back, I knew you were just trying to protect me. You always knew how far to let me go without letting me completely fall flat. You taught me to not be so hard on myself, but to always push forward and to try my utmost best.
When we struggled with everything with Brooklynn, you were always there no matter what. You would drop everything and help me. When I couldn't do anything because I was on bedrest, you came to my house every day so that I could spend time with Izzy while Sam was at work. You didn't have to do that. But you knew what I needed and you sacrificed everything else for me. I will never be able to repay you for everything you have ever given me.
My kids are better because of you. They have an amazing nana who sacrifices everything for them as well. They are learning so many life lessons that I couldn't even begin to teach. I know that I can work full time, because they are being raised by an amazing woman along with us. Those memories they are creating are going to last a lifetime and I am so happy for that.
Mom, I want you to know that not only do I love you as my mom, but I love you as one of my best friends!! Thank you for everything you have ever done. It will never go unappreciated - I just hope you know how much you are appreciated and loved!
Love you always and forever, and to the moon and back,
Your youngest daughter, your surprise :)
Tuesday, April 30, 2013
FirstSteps Appreciation Letter
I wrote a letter of appreciation to the head of the FirstSteps program. They asked if I could come to present at Jefferson City to the board of directors, but I was not able to, so I wrote a letter for them to read. Here it is just for my own keepsake...
"My name is Beckie and my husband is Sam. We wanted to send out a big thank you to the FirstSteps’ program, as they were very helpful with our youngest daughter Brooklynn. A little background as to how we got involved in FirstSteps. Since our daughter was a couples months of age, we have been followed by many specialists due to a large head size. Nobody could quite figure out what was wrong, but she kept hitting her milestones on the late side of normal. At our 2 year check up, it was found that she was starting to fall behind in her milestones, mostly her speech. Brooklynn was only able to vocalize about 25 words, and most of these were unclear. When we couldn’t understand what she was trying to say, she was starting to become aggressive by biting.
Our pediatrician recommended we get involved in Hearing and Speech at our local children’s hospital. We did an evaluation, and they found that she had some speech delays, but our insurance would not cover therapy, as she had no neurological diagnosis. At this time, we had no explanation as to why she was having delays, and therefore we struggled with getting her services that she needed. I was informed about the amazing program called FirstSteps. My pediatrician made the referral, and within a month, we were scheduled to meet with Toni Harrison, and our evaluation was completed. Due to her large head size and speech delays, we qualified for services. We were approved for 1 hour of speech therapy a week with Tina Kemp. By July, we were getting weekly therapy sessions in our home. Within a month of therapy, it was discovered that my daughter had some other delays and hypotonia issues that very well could have gone unnoticed until she fell further behind. She discovered that Brooklynn had some upper extremity hypotonia, and had trouble holding her own body weight on her arms, had trouble maintaining a sitting position for long periods of time, and had trouble with her fine motor skills. She had some sensory issues, including having difficulty with working with play-doh, struggled with allowing Tina to touch near her mouth, whether it be with a Z-vibe, a chewy tube, or just hands. She also demonstrated rigidity in her play skills. With the request of Tina, we were able to get special instructor Shannon Crim involved as well.
These 2 amazing women helped to make so many changes to our lives. They taught us skills to help our daughter not only with her speech, but with her strength and her ability to branch out her play skills. We were taught to give her choices, how to word our phrases to help her copy our words, invite ourselves into her world slowly during play so she would allow us to change her play pattern. They gave not only us tips, but also her school tips on how to help her with transitions. They even taught her older sister Isabella ways to interact with Brooklynn to help her, which made my oldest feel like she was an active participant. We utilized songs and timers to help her move on from an activity that before would have caused a meltdown.
We were amazed at the progress our daughter made in the short time we were blessed with FirstSteps. By her third birthday, she was using sentences, able to express her needs, her core strength improved, and her ability to do fine motor tasks such as stringing beads and picking up small objects, improved greatly. Her agility improved along with her strength. Before therapy became involved, Brooklynn fell a lot, and she didn’t have the strength to catch herself, so she hit her head many times. Now, with the help of Tina and the strengthening exercises they taught us to utilize at home, she is able to catch herself when she falls, as well as has much better balance and coordination than before. They helped us in making referrals, such as Physical Therapy at our local hospital to get HotDog inserts for her shoes due to my daughter’s hypotonia in her lower extremities. They helped us in the process of getting the referral to the Early Childhood Center at our school district, where she now gets special education and speech.
In November, we received a diagnosis of PTEN Hamartoma Tumor Syndrome, which explained many of Brooklynn’s issues, including her speech delay, developmental delay, as well as her hypotonia issues. Tina and Shannon helped us through this diagnosis as well, and gave us tools we could use to make sure we provided our daughter with the best support and best possible chance to catch up to her peers, or at least not fall further behind. They gave us an amazing start to getting the services our daughter needs. As a full time working mom, the convenience of having them come to our house for services was undeniable. We will never forget all the FirstSteps program provided us. Your program makes such an amazing difference in so many childrens’ lives in so many ways. Your program gave my daughter the tools to interact with not only us, but other adults and peers. Thank you so much for your program.
Sincerely,
Beckie and Sam Palmer
"My name is Beckie and my husband is Sam. We wanted to send out a big thank you to the FirstSteps’ program, as they were very helpful with our youngest daughter Brooklynn. A little background as to how we got involved in FirstSteps. Since our daughter was a couples months of age, we have been followed by many specialists due to a large head size. Nobody could quite figure out what was wrong, but she kept hitting her milestones on the late side of normal. At our 2 year check up, it was found that she was starting to fall behind in her milestones, mostly her speech. Brooklynn was only able to vocalize about 25 words, and most of these were unclear. When we couldn’t understand what she was trying to say, she was starting to become aggressive by biting.
Our pediatrician recommended we get involved in Hearing and Speech at our local children’s hospital. We did an evaluation, and they found that she had some speech delays, but our insurance would not cover therapy, as she had no neurological diagnosis. At this time, we had no explanation as to why she was having delays, and therefore we struggled with getting her services that she needed. I was informed about the amazing program called FirstSteps. My pediatrician made the referral, and within a month, we were scheduled to meet with Toni Harrison, and our evaluation was completed. Due to her large head size and speech delays, we qualified for services. We were approved for 1 hour of speech therapy a week with Tina Kemp. By July, we were getting weekly therapy sessions in our home. Within a month of therapy, it was discovered that my daughter had some other delays and hypotonia issues that very well could have gone unnoticed until she fell further behind. She discovered that Brooklynn had some upper extremity hypotonia, and had trouble holding her own body weight on her arms, had trouble maintaining a sitting position for long periods of time, and had trouble with her fine motor skills. She had some sensory issues, including having difficulty with working with play-doh, struggled with allowing Tina to touch near her mouth, whether it be with a Z-vibe, a chewy tube, or just hands. She also demonstrated rigidity in her play skills. With the request of Tina, we were able to get special instructor Shannon Crim involved as well.
These 2 amazing women helped to make so many changes to our lives. They taught us skills to help our daughter not only with her speech, but with her strength and her ability to branch out her play skills. We were taught to give her choices, how to word our phrases to help her copy our words, invite ourselves into her world slowly during play so she would allow us to change her play pattern. They gave not only us tips, but also her school tips on how to help her with transitions. They even taught her older sister Isabella ways to interact with Brooklynn to help her, which made my oldest feel like she was an active participant. We utilized songs and timers to help her move on from an activity that before would have caused a meltdown.
We were amazed at the progress our daughter made in the short time we were blessed with FirstSteps. By her third birthday, she was using sentences, able to express her needs, her core strength improved, and her ability to do fine motor tasks such as stringing beads and picking up small objects, improved greatly. Her agility improved along with her strength. Before therapy became involved, Brooklynn fell a lot, and she didn’t have the strength to catch herself, so she hit her head many times. Now, with the help of Tina and the strengthening exercises they taught us to utilize at home, she is able to catch herself when she falls, as well as has much better balance and coordination than before. They helped us in making referrals, such as Physical Therapy at our local hospital to get HotDog inserts for her shoes due to my daughter’s hypotonia in her lower extremities. They helped us in the process of getting the referral to the Early Childhood Center at our school district, where she now gets special education and speech.
In November, we received a diagnosis of PTEN Hamartoma Tumor Syndrome, which explained many of Brooklynn’s issues, including her speech delay, developmental delay, as well as her hypotonia issues. Tina and Shannon helped us through this diagnosis as well, and gave us tools we could use to make sure we provided our daughter with the best support and best possible chance to catch up to her peers, or at least not fall further behind. They gave us an amazing start to getting the services our daughter needs. As a full time working mom, the convenience of having them come to our house for services was undeniable. We will never forget all the FirstSteps program provided us. Your program makes such an amazing difference in so many childrens’ lives in so many ways. Your program gave my daughter the tools to interact with not only us, but other adults and peers. Thank you so much for your program.
Sincerely,
Beckie and Sam Palmer
Monday, April 22, 2013
My Testing Results
I received a phone call on Friday from the genetics counselor. My carrier testing results came back for the alpha-5 reductase deficiency. It showed that I am, in fact, a carrier for this deficiency. Which means Sam goes to the second level of testing for the carrier status to see if he is a carrier.
What does this mean as it stands right now? Right now, Brooklynn might have received the carrier gene from me. We would never have known we were carriers except for the fact that Brooklynn had a large cambut of genetic testing done, and this was an incidental finding. This means we do not have any symptoms of the disease, and the only way of passing this disease on to children is if we marry someone else (or produce with someone else I guess) who is also a carrier, at which point we would have a 1 in 4 chance of having a baby who has this genetic disease. It would only effect boys, because the hormones it effects is the male sex hormone, not the female hormones.
So if Sam's test comes back positive as also being a carrier, we are officially done having children. If his test comes back negative as being a carrier, we MIGHT be done having children. It is open for discussion. Either way, or fate as having more children is unknown, and leaning more towards us only being a family of 4. There is nothing wrong with being a family of 4. It is just a big adjustment to thinking that way. We always thought we would be a family of 5 or 6. I guess God might have other plans for us...
What does this mean as it stands right now? Right now, Brooklynn might have received the carrier gene from me. We would never have known we were carriers except for the fact that Brooklynn had a large cambut of genetic testing done, and this was an incidental finding. This means we do not have any symptoms of the disease, and the only way of passing this disease on to children is if we marry someone else (or produce with someone else I guess) who is also a carrier, at which point we would have a 1 in 4 chance of having a baby who has this genetic disease. It would only effect boys, because the hormones it effects is the male sex hormone, not the female hormones.
So if Sam's test comes back positive as also being a carrier, we are officially done having children. If his test comes back negative as being a carrier, we MIGHT be done having children. It is open for discussion. Either way, or fate as having more children is unknown, and leaning more towards us only being a family of 4. There is nothing wrong with being a family of 4. It is just a big adjustment to thinking that way. We always thought we would be a family of 5 or 6. I guess God might have other plans for us...
Brooklynn's Tonsils and Adenoids - GONE!
It has been a whirlwind these last couple of weeks. April 6th Izzy had her dance recital (videos were posted on facebook - I must say she did an AMAZING job!!). April 9th, I was able to move Brooklynn's ENT appointment up from the following Friday. She had been snoring A LOT more, and was definitely struggling to get air in throughout the night with her sleep. So we took her in to Dr. B's office. He took one look at her throat and said "Those suckers need to come out". We walked out of the office with her adenoid and tonsil removal surgery scheduled for Monday, April 15th.
Monday, we went in to the Outpatient Surgery Center. We arrived at 7:30, by 8:30 they were taking her back. She was not a happy camper - she knew something was going on when we had to change her out of her pajamas into a hospital gown. She was screaming and kicking. When the nurse took her back, she was reaching for us (that was hard!). By 9:15, we were talking to the ENT surgeon. He said she did well. He told us that her tonsils and adenoids were definitely large (even the anesthesiologist made a comment). He told us that her throat was probably 90% occluded by the size of her tonsils and adenoids, and that this was definitely the right decision.
We were able to see her by 9:30. They had to give her some racemic epinephrine breathing treatment because she woke up out of anesthesia with a barking cough (no news to us - if she wakes up upset ever she usually has a barking cough and anesthesia is no fun). Other than that, we were kept at the surgery center for 2 hours to pump her full of fluids and to watch her, and we were home by 12:30. She did amazingly well, with only really 1 bad day (the following day she didn't want to eat, drink, or take her pain medications until daddy got home from work). They told us day 5-7 would be hard days, but she has done an amazing job. I think it is to her benefit that her pain tolerance is ridiculously high. Only had to give her a few doses of tylenol throughout the weekend.
And I must say - listening to her sleep at night is AMAZING! Hardly any snoring, she is able to breath through her nose! you can tell her throat is still a little sore, because she refuses to open up her mouth (so I have not been able to get an after picture to compare to her before), and she continues to have trouble with her appetite. At times she is a little more fussy than normal, but that is to be expected. Overall, I am very excited we are through this surgery, and able to move on!
Monday, we went in to the Outpatient Surgery Center. We arrived at 7:30, by 8:30 they were taking her back. She was not a happy camper - she knew something was going on when we had to change her out of her pajamas into a hospital gown. She was screaming and kicking. When the nurse took her back, she was reaching for us (that was hard!). By 9:15, we were talking to the ENT surgeon. He said she did well. He told us that her tonsils and adenoids were definitely large (even the anesthesiologist made a comment). He told us that her throat was probably 90% occluded by the size of her tonsils and adenoids, and that this was definitely the right decision.
We were able to see her by 9:30. They had to give her some racemic epinephrine breathing treatment because she woke up out of anesthesia with a barking cough (no news to us - if she wakes up upset ever she usually has a barking cough and anesthesia is no fun). Other than that, we were kept at the surgery center for 2 hours to pump her full of fluids and to watch her, and we were home by 12:30. She did amazingly well, with only really 1 bad day (the following day she didn't want to eat, drink, or take her pain medications until daddy got home from work). They told us day 5-7 would be hard days, but she has done an amazing job. I think it is to her benefit that her pain tolerance is ridiculously high. Only had to give her a few doses of tylenol throughout the weekend.
And I must say - listening to her sleep at night is AMAZING! Hardly any snoring, she is able to breath through her nose! you can tell her throat is still a little sore, because she refuses to open up her mouth (so I have not been able to get an after picture to compare to her before), and she continues to have trouble with her appetite. At times she is a little more fussy than normal, but that is to be expected. Overall, I am very excited we are through this surgery, and able to move on!
Wednesday, April 3, 2013
Question Posed on PTEN World....
I follow PTEN World on Facebook. It is a place where the person who runs it posts updates on anything that could be associated with PTEN mutation (updates on cancer organizations, autism, National Organization of Rare Diseases. If you follow me on this blog, and you would like to stay up to date on issues that we might face throughout our journey with this PTEN mutation, like them on facebook. It opens my eyes to other issues, not just PTEN related issues. But yesterday they posted a question that hit home. "What is one thing you wish your loved ones knew about life with a PTEN condition?"
This got me thinking. I have probably said this over and over in my blog, so if you are tired of hearing my ramblings - don't read. But if you want to understand a little of what goes on in my braind - continue to read. What do I wish others knew? That when it comes to your kid, the unknown is scary. If it was me who had this mutation, I could deal with it. I would fear that cancer would take me away before my kids were grown, but this is a fear I have any way. I could deal with any pain, or problems socially I would face. But it's my kid. I fear that she will get a growth that will affect her - either her ability to be physically active, affect her ability to socialize with others, or makes her feel like others are negatively looking at her. I am afraid that some days her challenges might be hard for her to face.
I am fearful that as more research is being done, they will find this mutation is linked to more things. Right now, it is shown to be with developmental delays (she has a few of these), large head (we all know she has this), speech delays (she struggles with this but continues to make improvements). They are finding its' link with AV malformations (problems in the arteries and veins) and these can pop up at any time. She will probably need her tonsils removed. And we have all read about the tumor growths (benign and cancerous that she is at risk for). She is at risk for intestinal polyps, and so with every diaper change, I have to make sure I find no blood. This is our life from here on out. I have to be a step ahead of everything and catch stuff at the first sign of problems.
But they are doing more research. And they continue to find other things this might be linked to.
But than there is hope. With continued research, they will continue to find ways to treat the symptoms. They are doing research on a drug that some people are taking when they find out about cancer, and it slows the growth of cancer. So potentially, could there be a drug that wipes out her chance she will get a cancer? Potentially can this be obsolete, so when she is older, she doesn't have to worry about her decision to have a child herself? That she, herself, could be a mom and not have to worry what this means?
I am fearful for the day she starts asking me questions, and I won't have the right answers for her. I worry that her life will be filled with doctors' appointments, tests, etc and she won't know what it's like to be a "normal" kid. I am afraid of her having struggles in school, and if budgets are cut, will they cut special education and her ability to get services that she needs? The unknown freaks me out.
And I do struggle with this knowledge every day. I really do want my family and friends to know I am working on this. I really want to get to a point that I don't let it overwhelm me. But I feel like I have to stay up on the research. I have to read the journal articles. Because nobody truly knows a lot about this. So I HAVE to be the expert. So if I look like I am engrossing myself in it too much, I probably am. I don't want to miss any reports of it being linked to anything I don't know about and I miss the symptoms.
And it makes my eyes so much wider at work. The terms we use, the phrases we say. When parents are waiting for a test result that takes 6 weeks, we tell them not to worry. "Don't worry, we are testing for a genetic mutation that may affect your life forever - but I wouldn't worry until we have the results". Or when we use the phrasing "We don't know what it means, it could mean nothing, or it could mean she has x, y, or z" - we are setting these parents off into a world of unknowns, and it makes me fearful for them. It makes me want to hug them and say I am where you are. It makes me want to give them all the tools they would need on the outside so if this nothing does become something, they would know where to look. If it wasn't for where I work, I would not have found many of the resources we have found for Brooklynn. And I would feel helpless. And than I struggle because I keep my private life private (besides the blog) - I want to shout from the rooftops and open people's eyes to things that seem not so big (and honestly maybe it isn't so big and I just stress about it for no reason). I dont' know how to get our story out there. I don't want to blast it out, but I want to help another mom who might be struggling like me. Not saying I am where I could help. But eventually, I want to help others. I feel powerless right now, and probably because I feel so powerless over my own life.
So to my family and friends - I am adjusting. I would like to talk about it if you want to know about it. I am trying to adjust to this. I am trying to not let it engulf me. And if I ever dwell on it too much - you can knock some sense into me and say shape up! That's the long of it. My response to the question.
What is interesting is later on PTEN world, they posted as a family member or friend what do you want to know about PTEN? This made me think as well - what do others want to know? Are there any questions people would like to ask? If so, please ask. I probably won't have the answers, but maybe it would get a perspective or a question to bring me back to space. I feel like sometimes others don't want to ask, don't care to ask, I dont' know. But it is OKAY to ask. Just saying.
This got me thinking. I have probably said this over and over in my blog, so if you are tired of hearing my ramblings - don't read. But if you want to understand a little of what goes on in my braind - continue to read. What do I wish others knew? That when it comes to your kid, the unknown is scary. If it was me who had this mutation, I could deal with it. I would fear that cancer would take me away before my kids were grown, but this is a fear I have any way. I could deal with any pain, or problems socially I would face. But it's my kid. I fear that she will get a growth that will affect her - either her ability to be physically active, affect her ability to socialize with others, or makes her feel like others are negatively looking at her. I am afraid that some days her challenges might be hard for her to face.
I am fearful that as more research is being done, they will find this mutation is linked to more things. Right now, it is shown to be with developmental delays (she has a few of these), large head (we all know she has this), speech delays (she struggles with this but continues to make improvements). They are finding its' link with AV malformations (problems in the arteries and veins) and these can pop up at any time. She will probably need her tonsils removed. And we have all read about the tumor growths (benign and cancerous that she is at risk for). She is at risk for intestinal polyps, and so with every diaper change, I have to make sure I find no blood. This is our life from here on out. I have to be a step ahead of everything and catch stuff at the first sign of problems.
But they are doing more research. And they continue to find other things this might be linked to.
But than there is hope. With continued research, they will continue to find ways to treat the symptoms. They are doing research on a drug that some people are taking when they find out about cancer, and it slows the growth of cancer. So potentially, could there be a drug that wipes out her chance she will get a cancer? Potentially can this be obsolete, so when she is older, she doesn't have to worry about her decision to have a child herself? That she, herself, could be a mom and not have to worry what this means?
I am fearful for the day she starts asking me questions, and I won't have the right answers for her. I worry that her life will be filled with doctors' appointments, tests, etc and she won't know what it's like to be a "normal" kid. I am afraid of her having struggles in school, and if budgets are cut, will they cut special education and her ability to get services that she needs? The unknown freaks me out.
And I do struggle with this knowledge every day. I really do want my family and friends to know I am working on this. I really want to get to a point that I don't let it overwhelm me. But I feel like I have to stay up on the research. I have to read the journal articles. Because nobody truly knows a lot about this. So I HAVE to be the expert. So if I look like I am engrossing myself in it too much, I probably am. I don't want to miss any reports of it being linked to anything I don't know about and I miss the symptoms.
And it makes my eyes so much wider at work. The terms we use, the phrases we say. When parents are waiting for a test result that takes 6 weeks, we tell them not to worry. "Don't worry, we are testing for a genetic mutation that may affect your life forever - but I wouldn't worry until we have the results". Or when we use the phrasing "We don't know what it means, it could mean nothing, or it could mean she has x, y, or z" - we are setting these parents off into a world of unknowns, and it makes me fearful for them. It makes me want to hug them and say I am where you are. It makes me want to give them all the tools they would need on the outside so if this nothing does become something, they would know where to look. If it wasn't for where I work, I would not have found many of the resources we have found for Brooklynn. And I would feel helpless. And than I struggle because I keep my private life private (besides the blog) - I want to shout from the rooftops and open people's eyes to things that seem not so big (and honestly maybe it isn't so big and I just stress about it for no reason). I dont' know how to get our story out there. I don't want to blast it out, but I want to help another mom who might be struggling like me. Not saying I am where I could help. But eventually, I want to help others. I feel powerless right now, and probably because I feel so powerless over my own life.
So to my family and friends - I am adjusting. I would like to talk about it if you want to know about it. I am trying to adjust to this. I am trying to not let it engulf me. And if I ever dwell on it too much - you can knock some sense into me and say shape up! That's the long of it. My response to the question.
What is interesting is later on PTEN world, they posted as a family member or friend what do you want to know about PTEN? This made me think as well - what do others want to know? Are there any questions people would like to ask? If so, please ask. I probably won't have the answers, but maybe it would get a perspective or a question to bring me back to space. I feel like sometimes others don't want to ask, don't care to ask, I dont' know. But it is OKAY to ask. Just saying.
Subscribe to:
Posts (Atom)