As many of you know I am part of the 1p36 Deletion Syndrome yahoo group. It has been my lifesaver and saving grace almost everyday since I found it! There are some truly amazing and inspiring people on that site and I just wanted to share a bit about it.
I try to check the yahoo group everyday..I usually don't go two days without looking at it. I don't always have time to respond to some of the topics that are being shared but I do try because I appreciate it when the other parents respond to my posts. I have read soooo much about the other kiddos and their families. It's a group that I can share anything and everything about my little Sammie with and they have either gone through it or have some incredible advice about how to get through it.
Some weeks I am overwhelmingly reminded of how important the group is to me and the other members. Just in the last seven days..one mother reported her little peanut is seizure free! How exciting that is! I would venture to say that 100% of the people I know are terrified of the thought of someone having a seizure, myself included. There is nothing like being told your baby is seizure free. As the parent you are absolutely helpless in the sense that there is really nothing you can do for your child except wait. Another mother told us her story about her last days with her girl. I cried my eyes out on Sunday reading about her and her daughters struggles during her last months. How to respond to this? I can't possibly begin to imagine what it's like to lose a child and hope to NEVER be in that position. Another mother told about an upcoming surgery on her little one's spine that is very risky but must happen sooner that later. Another was writing about her 20 month old not being within the growth charts..something my Sammie has never been in either! And another was telling us about her little one's Cardiac issues. Of course there is always good news on the site to! But some weeks are much more medically busy then others.
And I sit back and think how darn lucky I am. My little Sammie is plugging away right now without any major concerns at the moment...phew! I send my thoughts and prayers out to my yahoo people everyday. And I am reminded to take life one day at a time and enjoy all the happy moments.
There are no other people in my life like the people on the yahoo group. They are my people...the one's that know everything about my struggles and triumphs as a parent with a child with 1p36... I can't wait to see them again!
Tuesday, August 19, 2008
Wednesday, August 6, 2008
Fish & Chips
A week and a year ago I was in Boston with my little guy nervously awaiting the early morning hours of August 14th. That's the day Samuel's Open-heart surgery was scheduled for.
The week prior to the that was an interesting one to say the least. I work at a restaurant called Geoffrey's Pub & Restaurant and one of my best friends (who was also my boss!) took 8 weeks off for maternity leave so there I was for 8 weeks trying to act like the manager and a server. I won't go into details but lets just say I was drowning in stress!
My co-workers all knew that it was almost time for Sammie to have his surgery and they were all sympathetic and wonderful. I couldn't have asked for better people to be surrounded by.
There is this one night that sticks out in my mind....
It was one of the last nights I worked before Sammie's surgery. It was a pretty busy night and I was in the office doing all the paper work that I didn't get to earlier in the week because I was also waitressing at the time. One of my good friends/servers came into the office to let me know that she had a complaint. I asked what the situation was and she had offered the "free dessert" we offer first and the lady said no thanks. I asked the server if the lady was upset and she said "no I think she just wanted to say that it wasn't as good as last time". The lady had ordered our Fish & Chips. Now I hate fish and have never eaten it in my life. But, I have worked at the Pub for 4 years now and that is the most popular plate on the menu. People rave about it and I can honestly say that I have NEVER had a complaint about it. To make a long story short...I was at the computer helping another server with a computer issue and suddenly this lady starts yelling "ARE YOU THE MANAGER?!!!" Of course I turned around with a stunned look on my face and quietly said yes. I walked over to her because the place was full and now everyone is starring at us! It was the Fish & Chips lady...but I didn't know this cause I never saw her. She continued to scream at me about her Fish & Chips and that I should have given it to her for free. We went back and forth about what the server did/said and it all matched up. I told her that I didn't come to the table because I discussed it with the server and I decided that she wasn't upset she was just "letting us know" it wasn't as good. She had me pinned against one of the booths as she continued to scream at me and then she started pointing her finger in my face. From that point on I was no longer listening to her. Over and over and over again in my mind I kept saying touch me one time lady...one time..and it's self-defense! I kept envisioning doing a spinning side kick right into her Solar Plex. knocking the wind out of her and sending her across the room. Touch me one time.....it didn't happen.
Now I would say that I am not a violent person. I have never started a fight. I've trained in martial arts more than half my life and understand (no matter what my ex says!) that I have an advantage over some! But really..I wanted nothing more than to send this woman across the room. She was tearing into me in front of her own children about Fish & Chips and after a while of being yelled at I started getting defensive, not yelling but standing my ground. All the while I'm thinking look at this lady....I'm leaving for Boston so my son can have open-heart surgery and this lady is all distraught about Fish & Chips....I should say something..I should tell I don't care about her damn Fish & Chips and then tell her why....F*ck your Fish & Chips lady! Of course I only said that in my head cause I did need my job back once I returned from Boston! I just couldn't believe it. I would/will never get that upset about food unless I'm starving and I mean starving like to the point I might actually die of starvation. It's Fish & Chips lady! The best part about it is that she ate every last morsel on her plate. She stomped out of the restaurant screaming that she would never come back and I quietly screamed back good! A couple of weeks ago I saw her at the Pub again. The weird thing was we met each other coming up the stairs and I just starred at her. I couldn't believe it...that b*tch came back. I really had to hold my tongue. I wanted to ask her if she remembered me..and I wanted to tell her that I left Plattsburgh a couple of days after that for Boston. I was/still am curious about whether or not she would feel like an ass!?!?! Oh well!
The Fish & Chips were soon forgotten as we packed for Boston. We flew down. We got there 2 days early. The first night we didn't do much. The second day we had to go to the hospital to do all the pre-op stuff. And yes that took alllllllllll day. There were so many doctors, tests, questions, answers. We had lots of family support...thank god. So we went out to eat that night because I knew we probably wouldn't eat the next day. At this point I'm not sure that I was even sleeping. I mean I layed down and shut my eyes at night but my mind was racing. I told Steve to bring his Xanex (sp?) because I wasn't sure I could handle it.
So then it was surgery day. He got all his kisses from the family and then Steve and I were allowed to go into pre-op with him. They had us dress him in these pj's that were made for a 3 year old (he was 10 months old at the time). And then they asked us if we wanted his stuffed animal to go with him so he wouldn't be alone..and then I saw the Anaesthesiologist that we had met the day before and I knew it was time. I wanted to say something, I wanted to change my mind, I wanted to grab him and run out of there as fast as I could, but this was reality and he had to have the surgery. They took him and I said please please please take care of my baby. I'm not sure really how many times I said please and then we were escorted to the waiting area where all our family was and I just cried and thought about puking but didn't.
Four and a half hours. They called us to tell us when he was put on by-pass, called us I think one time during the procedure and then when they took him off the by-pass. And then we had to wait another 30 or so minutes to get him cleaned up and to the critical care floor. I'm not sure a day has been longer for me. The next week was the most intense I hope to experience in my life. I have lost people close to me but the couple of incidents Samuel had were the most devastating times I have experienced in my life. The feeling is indescribable when your child codes and you witness doctors and nurses running to your helpless child.
And yet there are people in the world who go crazy in the brain over Fish & Chips. I have learned five lifetimes of compassion, courage, empathy, understanding, patients, and optimism from my Samuel. I would never wish what he has gone through on any child. And I know that there are children who go through and have it much worse and yes some that don't make it. Most people haven't experienced life on the Cardiac Critical Care Unit at Boston's Children's Hospital because if they had then their definition of "problems, issues, and struggles" would change. Some of the children on that floor had been there since the day they were born and some were never going to leave. How could I as a human continue to think my trivial "problems" were really relative?
I try to take things in stride and yes I get frustrated and discouraged but I always gauge it....is this really a big deal? Come on Shannon...does this possibly compare? I am always accused of being happy-go -lucky...I couldn't tell you how many times people have told me that not everyone is as optimistic as I am. Almost like they're accusing me of being bad in some way. And I try to share my story..I try to tell people so that they themselves do no become the Fish & Chips lady. I am not at all saying that peoples "problems" are trivial..certainly not. We were all given/learned certain tools and I understand we all cope differently but next time you see yourself becoming Fish & Chips lady please remember that you have NO IDEA what is going on in that persons life. Remember it's only Fish & Chips...it's not Open-Heart Surgery!
The week prior to the that was an interesting one to say the least. I work at a restaurant called Geoffrey's Pub & Restaurant and one of my best friends (who was also my boss!) took 8 weeks off for maternity leave so there I was for 8 weeks trying to act like the manager and a server. I won't go into details but lets just say I was drowning in stress!
My co-workers all knew that it was almost time for Sammie to have his surgery and they were all sympathetic and wonderful. I couldn't have asked for better people to be surrounded by.
There is this one night that sticks out in my mind....
It was one of the last nights I worked before Sammie's surgery. It was a pretty busy night and I was in the office doing all the paper work that I didn't get to earlier in the week because I was also waitressing at the time. One of my good friends/servers came into the office to let me know that she had a complaint. I asked what the situation was and she had offered the "free dessert" we offer first and the lady said no thanks. I asked the server if the lady was upset and she said "no I think she just wanted to say that it wasn't as good as last time". The lady had ordered our Fish & Chips. Now I hate fish and have never eaten it in my life. But, I have worked at the Pub for 4 years now and that is the most popular plate on the menu. People rave about it and I can honestly say that I have NEVER had a complaint about it. To make a long story short...I was at the computer helping another server with a computer issue and suddenly this lady starts yelling "ARE YOU THE MANAGER?!!!" Of course I turned around with a stunned look on my face and quietly said yes. I walked over to her because the place was full and now everyone is starring at us! It was the Fish & Chips lady...but I didn't know this cause I never saw her. She continued to scream at me about her Fish & Chips and that I should have given it to her for free. We went back and forth about what the server did/said and it all matched up. I told her that I didn't come to the table because I discussed it with the server and I decided that she wasn't upset she was just "letting us know" it wasn't as good. She had me pinned against one of the booths as she continued to scream at me and then she started pointing her finger in my face. From that point on I was no longer listening to her. Over and over and over again in my mind I kept saying touch me one time lady...one time..and it's self-defense! I kept envisioning doing a spinning side kick right into her Solar Plex. knocking the wind out of her and sending her across the room. Touch me one time.....it didn't happen.
Now I would say that I am not a violent person. I have never started a fight. I've trained in martial arts more than half my life and understand (no matter what my ex says!) that I have an advantage over some! But really..I wanted nothing more than to send this woman across the room. She was tearing into me in front of her own children about Fish & Chips and after a while of being yelled at I started getting defensive, not yelling but standing my ground. All the while I'm thinking look at this lady....I'm leaving for Boston so my son can have open-heart surgery and this lady is all distraught about Fish & Chips....I should say something..I should tell I don't care about her damn Fish & Chips and then tell her why....F*ck your Fish & Chips lady! Of course I only said that in my head cause I did need my job back once I returned from Boston! I just couldn't believe it. I would/will never get that upset about food unless I'm starving and I mean starving like to the point I might actually die of starvation. It's Fish & Chips lady! The best part about it is that she ate every last morsel on her plate. She stomped out of the restaurant screaming that she would never come back and I quietly screamed back good! A couple of weeks ago I saw her at the Pub again. The weird thing was we met each other coming up the stairs and I just starred at her. I couldn't believe it...that b*tch came back. I really had to hold my tongue. I wanted to ask her if she remembered me..and I wanted to tell her that I left Plattsburgh a couple of days after that for Boston. I was/still am curious about whether or not she would feel like an ass!?!?! Oh well!
The Fish & Chips were soon forgotten as we packed for Boston. We flew down. We got there 2 days early. The first night we didn't do much. The second day we had to go to the hospital to do all the pre-op stuff. And yes that took alllllllllll day. There were so many doctors, tests, questions, answers. We had lots of family support...thank god. So we went out to eat that night because I knew we probably wouldn't eat the next day. At this point I'm not sure that I was even sleeping. I mean I layed down and shut my eyes at night but my mind was racing. I told Steve to bring his Xanex (sp?) because I wasn't sure I could handle it.
So then it was surgery day. He got all his kisses from the family and then Steve and I were allowed to go into pre-op with him. They had us dress him in these pj's that were made for a 3 year old (he was 10 months old at the time). And then they asked us if we wanted his stuffed animal to go with him so he wouldn't be alone..and then I saw the Anaesthesiologist that we had met the day before and I knew it was time. I wanted to say something, I wanted to change my mind, I wanted to grab him and run out of there as fast as I could, but this was reality and he had to have the surgery. They took him and I said please please please take care of my baby. I'm not sure really how many times I said please and then we were escorted to the waiting area where all our family was and I just cried and thought about puking but didn't.
Four and a half hours. They called us to tell us when he was put on by-pass, called us I think one time during the procedure and then when they took him off the by-pass. And then we had to wait another 30 or so minutes to get him cleaned up and to the critical care floor. I'm not sure a day has been longer for me. The next week was the most intense I hope to experience in my life. I have lost people close to me but the couple of incidents Samuel had were the most devastating times I have experienced in my life. The feeling is indescribable when your child codes and you witness doctors and nurses running to your helpless child.
And yet there are people in the world who go crazy in the brain over Fish & Chips. I have learned five lifetimes of compassion, courage, empathy, understanding, patients, and optimism from my Samuel. I would never wish what he has gone through on any child. And I know that there are children who go through and have it much worse and yes some that don't make it. Most people haven't experienced life on the Cardiac Critical Care Unit at Boston's Children's Hospital because if they had then their definition of "problems, issues, and struggles" would change. Some of the children on that floor had been there since the day they were born and some were never going to leave. How could I as a human continue to think my trivial "problems" were really relative?
I try to take things in stride and yes I get frustrated and discouraged but I always gauge it....is this really a big deal? Come on Shannon...does this possibly compare? I am always accused of being happy-go -lucky...I couldn't tell you how many times people have told me that not everyone is as optimistic as I am. Almost like they're accusing me of being bad in some way. And I try to share my story..I try to tell people so that they themselves do no become the Fish & Chips lady. I am not at all saying that peoples "problems" are trivial..certainly not. We were all given/learned certain tools and I understand we all cope differently but next time you see yourself becoming Fish & Chips lady please remember that you have NO IDEA what is going on in that persons life. Remember it's only Fish & Chips...it's not Open-Heart Surgery!
Friday, July 18, 2008
1P36 Deletion Syndrome Fund!
Dear Friends,
As some of you know, my 20 month old son, Samuel, has a rare genetic disorder called 1P36 Deletion Syndrome or Monosomy 1P36. This genetic anomaly is present in only 1 in every 5000-10,000 births and affects every aspect of my son's life.
Samuel's congential heart defects, Dilated Cardiomyopathy, Ventricular Septal Defect (VSD), and Atrial Septal Defect (ASD) are secondary to his 1P36 diagnosis. Samuel had a successful open-heart surgery last August to repair the VSD and ASD. However, the Cardiomyopathy is a defect that will require several heart medications and echocardiograms for the rest of his life. He is seen by six specialists and several therapists to help him progress and stay healthy.
1P36 Deletion Syndrome was diagnosed only about 10 years ago and very little is known about its causes and means of treatment. Families affected by it are spread far and wide. To help each other, we have formed an internet-based support group to share knowledge and assist those affected by this syndrome.
In order to further research and discover better ways to help affected children, our support group has recently formed a non-profit organization called the 1P36 Deletion Syndrome Fund. Contributions to this fund are 100% dedicated to improving life for these special children and raising public awareness about the sydrome. There is no overhead for administration since the fund is managed by 1P36 parents who volunteer their time. The fund also helps sponsor an annual conference for healthcare providers, therapists, and 1P36 families to meet and learn more about caring for those with the disorder.
If you would like to make a tax deductible contribution to the 1P36 Deletion Syndrome Fund please contact me via email shayrenee@hotmail.com or call me at (518) 420-4371. To learn more about 1P36 Deletion Syndrome please visit 1p36.com. Or if you would like to learn more about my son Samuel's experiences and progress, visit my blog at http://samuelbartlett.blogspot.com
Thank you for making a differnce!
Shannon Bartlett
Proud Mommy of a 1P36 Deletion Child
You can also send donations to me at
12 MacDonough Street Apt. 4
Plattsburgh, NY 12901
Also wanted to mention that my mother (Diane) and sister Andrea are putting together a bake sale to help raise funds! It will be August 1st starting at 8:00am at Chittenden Bank in Newport, Vermont!! Please go down and buy some goodies! I promise it will be yummy!
Please make checks payable to 1P36 Deletion Syndrome Fund
As some of you know, my 20 month old son, Samuel, has a rare genetic disorder called 1P36 Deletion Syndrome or Monosomy 1P36. This genetic anomaly is present in only 1 in every 5000-10,000 births and affects every aspect of my son's life.
Samuel's congential heart defects, Dilated Cardiomyopathy, Ventricular Septal Defect (VSD), and Atrial Septal Defect (ASD) are secondary to his 1P36 diagnosis. Samuel had a successful open-heart surgery last August to repair the VSD and ASD. However, the Cardiomyopathy is a defect that will require several heart medications and echocardiograms for the rest of his life. He is seen by six specialists and several therapists to help him progress and stay healthy.
1P36 Deletion Syndrome was diagnosed only about 10 years ago and very little is known about its causes and means of treatment. Families affected by it are spread far and wide. To help each other, we have formed an internet-based support group to share knowledge and assist those affected by this syndrome.
In order to further research and discover better ways to help affected children, our support group has recently formed a non-profit organization called the 1P36 Deletion Syndrome Fund. Contributions to this fund are 100% dedicated to improving life for these special children and raising public awareness about the sydrome. There is no overhead for administration since the fund is managed by 1P36 parents who volunteer their time. The fund also helps sponsor an annual conference for healthcare providers, therapists, and 1P36 families to meet and learn more about caring for those with the disorder.
If you would like to make a tax deductible contribution to the 1P36 Deletion Syndrome Fund please contact me via email shayrenee@hotmail.com or call me at (518) 420-4371. To learn more about 1P36 Deletion Syndrome please visit 1p36.com. Or if you would like to learn more about my son Samuel's experiences and progress, visit my blog at http://samuelbartlett.blogspot.com
Thank you for making a differnce!
Shannon Bartlett
Proud Mommy of a 1P36 Deletion Child
You can also send donations to me at
12 MacDonough Street Apt. 4
Plattsburgh, NY 12901
Also wanted to mention that my mother (Diane) and sister Andrea are putting together a bake sale to help raise funds! It will be August 1st starting at 8:00am at Chittenden Bank in Newport, Vermont!! Please go down and buy some goodies! I promise it will be yummy!
Please make checks payable to 1P36 Deletion Syndrome Fund
Monday, July 14, 2008
Hearing
hmmmmmm
I was hoping that this could be one issue that my little peanut would be able to avoid but it turns out that he doesn't want to be left out of anything!
He had another hearing test today and failed in both ears. So now we will see his Pediatrician tomorrow afternoon to get an appointment to have an ABR (Auditory Brainstem Response) done at Fletcher Allen. He will be sedated for this test. I totally stole the following from some website!!!
Tiny earphones are placed in the ear canals. Usually, click-type sounds are introduced through the earphones, and electrodes measure the hearing nerve's response to the sounds. A computer averages these responses and displays waveforms. Because there are characteristic waveforms for normal hearing in portions of the speech range, a normal ABR can predict fairly well that a baby's hearing is normal in that part of the range. An abnormal ABR may be due to hearing loss, but it may also be due to some medical problems or measurement difficulties.
She already told us that he will probably have hearing aides. Something new to learn about and take care of!
I was hoping that this could be one issue that my little peanut would be able to avoid but it turns out that he doesn't want to be left out of anything!
He had another hearing test today and failed in both ears. So now we will see his Pediatrician tomorrow afternoon to get an appointment to have an ABR (Auditory Brainstem Response) done at Fletcher Allen. He will be sedated for this test. I totally stole the following from some website!!!
Tiny earphones are placed in the ear canals. Usually, click-type sounds are introduced through the earphones, and electrodes measure the hearing nerve's response to the sounds. A computer averages these responses and displays waveforms. Because there are characteristic waveforms for normal hearing in portions of the speech range, a normal ABR can predict fairly well that a baby's hearing is normal in that part of the range. An abnormal ABR may be due to hearing loss, but it may also be due to some medical problems or measurement difficulties.
She already told us that he will probably have hearing aides. Something new to learn about and take care of!
Sunday, July 13, 2008
Having a child with disabilities..
First let me state that the title is loaded.. of course I guess there is a definition somewhere of what it means to be disabled. I know what disabled means but the word can carry many meanings and even people with the same disabilities are different from each other. I'm not gonna lie...before Sammie was brought into my life I guess I kinda thought all people with Down's Syndrome were the same. Not that it was something I thought about often but when I would see someone with Down's I sorta unconsciously put them in the same "group". I guess that could sound awful to some people. Let me also apologize for thinking that way and let you all know that I have since been enlightened!
I can't really say for sure what it's like to have a child with disabilities. After all, Sammie is only 20 months old and we have a lifetime of stuff to go through before I could really elaborate on this topic. But I can tell you what it's been like thus far. Really I should be going to sleep!
Sammie's father (Steve) and I are separated. Don't feel bad! It has been a blessing! We split for our own reasons but the truth is we are still friends and will always be partners in raising Sammie. It's also a blessing because we get breaks! I know that might sound awful but the truth is that sometimes it's tiring doing all the stuff we do for Sammie, his sister Darby, our jobs and all the other things life comes with!
Each morning Sammie wakes us up...and so the day begins. He is usually in a very happy mood when he gets up! I myself have always been a happy morning person! So we come out into the living room and of course he needs to be changed first thing. Then I put him in his high-chair and give him some cereal puffs to eat while I measure out his medications. I'm a tiny bit OCD so I always do it the same. First the .7mls of digoxin, I usually give that to him right away..well unless his mouth is full of cereal puffs! The I put the Prevacid solutab in the medicine dropper and add 5 mls of water to dissolve it. This is sometimes a pain because he doesn't drink water and so sometimes if I put to much he chokes a bit. :( As I'm giving him that I split the 2.5 mg Enalapril pill (half twice a day!) and crush it. I usually try to mix it with baby prunes to help keep the little guy regular! He doesn't really like any of the above occurrences but you know he never cries about it. He is such a trooper. Then I give him his breakfast. He loves eggs and bananas and cheese for breakfast. At his dads house I think he eats donuts most days!
Then we chill for a bit and depending on the day he has Physical Therapy at 8am. I think its usually Tues and Thurs. I still write them all done on my calendar cause we do a lot! Speech therapy is usually between 9 and 11 twice a week. We do lots of work and lots of play! Most of the time he tolerates these therapies but of course we all have a moody day once in a while.
He takes his Carvedilol at around 11-12 each day. This one has to be given at least 2 hours after the Enalapril so it all depends on what time he had his morning meds. Somewhere in this time he will eat then nap or nap then eat lunch! We're giving him big people food now! Very exciting! I still buy the baby snacks and stuff cause they're soft and easy to chew. So he can eat anything that we can cut with a fork. I always try to make it high calorie cause he is a tiny peanut!
Lately we have been going to the beach and of course there are always errands to run and things to do. Then of course depending on the day he might have Occupational Therapy (always in the afternoon, once a week) or Special Instruction (always in the afternoon also, twice a week). We usually have Mondays free of all these therapies...which is nice cause that is usually my one day off from work! Then again tomorrows Monday and we have to go see the Audiologist...darn. The doctor visits are fewer but we go to Burlington at least twice a month and we see his regular doc probably once a month.
So I go to work at 5 everyday except Thursdays (I go in at 4). Steve picks up where I left off cause that's what time he finishes his work day. Sammie has to have all the same medications at dinner that he had with breakfast. I'm not sure what those boys do but I imagine it's a lot like what we do! When I have Sammie for the night I pick him up around 10:30pm but it's been a bit later sometimes cause it's summer and I work at a restaurant and people come in 15 minutes before we close....JERKS! It never fails that he wakes up when I pull into my driveway. Sometimes he goes right back to sleep and other times he wants to stay up and party! That's the term I use to keep me sane and pretend like I'm having a good time! haha He is a pretty good sleeper and most of the time will sleep through the night! We still have our nights that we party alllllll night long though!
We repeat this everyday! But you know what it doesn't matter cause it's normal. I remember coming home from the hospital with pages of instructions about medications, dosages, feedings and on and on and thinking we'll never get this right. Now it's life and it's simple and it's what we do. I never even think about it really. I never think about it as different from the norm. It's just what we do. And when I chat with his therapists I realize it's what a lot of people do and we have it soooo much easier than a lot of people.
I really need to go to bed!
I can't really say for sure what it's like to have a child with disabilities. After all, Sammie is only 20 months old and we have a lifetime of stuff to go through before I could really elaborate on this topic. But I can tell you what it's been like thus far. Really I should be going to sleep!
Sammie's father (Steve) and I are separated. Don't feel bad! It has been a blessing! We split for our own reasons but the truth is we are still friends and will always be partners in raising Sammie. It's also a blessing because we get breaks! I know that might sound awful but the truth is that sometimes it's tiring doing all the stuff we do for Sammie, his sister Darby, our jobs and all the other things life comes with!
Each morning Sammie wakes us up...and so the day begins. He is usually in a very happy mood when he gets up! I myself have always been a happy morning person! So we come out into the living room and of course he needs to be changed first thing. Then I put him in his high-chair and give him some cereal puffs to eat while I measure out his medications. I'm a tiny bit OCD so I always do it the same. First the .7mls of digoxin, I usually give that to him right away..well unless his mouth is full of cereal puffs! The I put the Prevacid solutab in the medicine dropper and add 5 mls of water to dissolve it. This is sometimes a pain because he doesn't drink water and so sometimes if I put to much he chokes a bit. :( As I'm giving him that I split the 2.5 mg Enalapril pill (half twice a day!) and crush it. I usually try to mix it with baby prunes to help keep the little guy regular! He doesn't really like any of the above occurrences but you know he never cries about it. He is such a trooper. Then I give him his breakfast. He loves eggs and bananas and cheese for breakfast. At his dads house I think he eats donuts most days!
Then we chill for a bit and depending on the day he has Physical Therapy at 8am. I think its usually Tues and Thurs. I still write them all done on my calendar cause we do a lot! Speech therapy is usually between 9 and 11 twice a week. We do lots of work and lots of play! Most of the time he tolerates these therapies but of course we all have a moody day once in a while.
He takes his Carvedilol at around 11-12 each day. This one has to be given at least 2 hours after the Enalapril so it all depends on what time he had his morning meds. Somewhere in this time he will eat then nap or nap then eat lunch! We're giving him big people food now! Very exciting! I still buy the baby snacks and stuff cause they're soft and easy to chew. So he can eat anything that we can cut with a fork. I always try to make it high calorie cause he is a tiny peanut!
Lately we have been going to the beach and of course there are always errands to run and things to do. Then of course depending on the day he might have Occupational Therapy (always in the afternoon, once a week) or Special Instruction (always in the afternoon also, twice a week). We usually have Mondays free of all these therapies...which is nice cause that is usually my one day off from work! Then again tomorrows Monday and we have to go see the Audiologist...darn. The doctor visits are fewer but we go to Burlington at least twice a month and we see his regular doc probably once a month.
So I go to work at 5 everyday except Thursdays (I go in at 4). Steve picks up where I left off cause that's what time he finishes his work day. Sammie has to have all the same medications at dinner that he had with breakfast. I'm not sure what those boys do but I imagine it's a lot like what we do! When I have Sammie for the night I pick him up around 10:30pm but it's been a bit later sometimes cause it's summer and I work at a restaurant and people come in 15 minutes before we close....JERKS! It never fails that he wakes up when I pull into my driveway. Sometimes he goes right back to sleep and other times he wants to stay up and party! That's the term I use to keep me sane and pretend like I'm having a good time! haha He is a pretty good sleeper and most of the time will sleep through the night! We still have our nights that we party alllllll night long though!
We repeat this everyday! But you know what it doesn't matter cause it's normal. I remember coming home from the hospital with pages of instructions about medications, dosages, feedings and on and on and thinking we'll never get this right. Now it's life and it's simple and it's what we do. I never even think about it really. I never think about it as different from the norm. It's just what we do. And when I chat with his therapists I realize it's what a lot of people do and we have it soooo much easier than a lot of people.
I really need to go to bed!
Monday, July 7, 2008
Neo-Natal clinic is over!
Sammie is being followed by numerous specialists but I am happy to announce that we will no longer be seeing the Neo-Natal Physician! We love love love her and her nurse Nichole but she feels comfortable letting the rest of the team take over! Honestly I believe most of her patients are premature babies (Sammie was only 4 weeks early) but she was on the NICU floor most days that he was there and she, along with everyone else wanted as many eyes on him as possible when he finally left the hospital.
We've seen her every couple of months for the past 20 months and she has done a lot to help us get some weight on our little guy! She also helped us and all his doctors get on the same page and going in the same direction for Sammie's care.
I am sad that we won't see her (I'm sure we will run into her at the Children's Hospital at some point!) I must admit that I am somewhat attached to Sammie's doctors and therapists! But, I am happy that we will have less doctors visits! Even though she doesn't read this we are sending out a huge huge Thank you and hugs from everyone in Sammie's family!
We've seen her every couple of months for the past 20 months and she has done a lot to help us get some weight on our little guy! She also helped us and all his doctors get on the same page and going in the same direction for Sammie's care.
I am sad that we won't see her (I'm sure we will run into her at the Children's Hospital at some point!) I must admit that I am somewhat attached to Sammie's doctors and therapists! But, I am happy that we will have less doctors visits! Even though she doesn't read this we are sending out a huge huge Thank you and hugs from everyone in Sammie's family!
Sunday, June 29, 2008
Family
The word family has taken on a hole new meaning for me.
The entire family knew about the heart problems that Samuel was going to be born with. Of course we didn't completely understand it but it didn't matter because we were all in it together from the beginning. Now I know that families sometimes have their problems and of course mine is no different but in the last 2 years I have seen love like I have never seen.
From the beginning there was always someone from my family by my side. The first hospitalization, the second, ultra-sounds, echos, an ungodly amount of appointments. In fact, the only reason no one was there during our first Boston visit was because Lynn was having her baby, Owen! But I know if she could have been there she would have been there! I went to Boston on Thursday for a Friday morning appointment. After seeing the Cardiologists at Children's they said we could wait two more weeks. I called my mom and the phone tree began. A couple of hours later I called her to say there had been a change in plans and they were going to start inducing that night.
Without hesitation, my dad, sister Lynn, her husband Phil, my Grammy, and mother-in-law Diane all got in the vehicle and started the 4 1/2 hour trip to Boston. I know the rules in every hospital are different. At Bringham & Women's the rules are that only the 2 people that will be there for the delivery can be in the room. So my family sat in the hospital lobby for 3 days waiting for Samuel's arrival. Sunday afternoon the doctors told me that there was no way Samuel was coming that night...in fact he probably wouldn't be here till Tuesday (just what I wanted to hear!). So my family decided that had to go back home. Mind you, Lynn had just had a baby two months prior and he had his own heart issues going on. They left Boston at about 5:30 pm...I called them at 8:00pm to tell them he had come! We made this joke that he wanted to be alone with his mommy and daddy!
So the next morning Steve's dad and Darby (Sammie's sister) came by for a visit and a couple of days later my sister Andrea, her fiance Joel, my mom and step-father came for a visit. They all spent a couple of days there with me, taking care of me and doing what they could for Samuel. When Samuel was transferred to Fletcher Allen in Vermont he had visitors at least twice a week and every weekend. Cousins, Aunts, Uncles, Grammies, Grandpas, Memeres, friends of all the family and of course us!
When Sammie had his heart cath they all came down to the hospital for the day with us and didn't leave until he was released. When he had his open-heart surgery people actually took turns sleeping on the floor of the hotel so they could be there for him and us. They continue to involve themselves in all aspects of Sammie's life and I welcome that with open arms. What more could I ask for than to have the most supportive and loving family?
The entire family knew about the heart problems that Samuel was going to be born with. Of course we didn't completely understand it but it didn't matter because we were all in it together from the beginning. Now I know that families sometimes have their problems and of course mine is no different but in the last 2 years I have seen love like I have never seen.
From the beginning there was always someone from my family by my side. The first hospitalization, the second, ultra-sounds, echos, an ungodly amount of appointments. In fact, the only reason no one was there during our first Boston visit was because Lynn was having her baby, Owen! But I know if she could have been there she would have been there! I went to Boston on Thursday for a Friday morning appointment. After seeing the Cardiologists at Children's they said we could wait two more weeks. I called my mom and the phone tree began. A couple of hours later I called her to say there had been a change in plans and they were going to start inducing that night.
Without hesitation, my dad, sister Lynn, her husband Phil, my Grammy, and mother-in-law Diane all got in the vehicle and started the 4 1/2 hour trip to Boston. I know the rules in every hospital are different. At Bringham & Women's the rules are that only the 2 people that will be there for the delivery can be in the room. So my family sat in the hospital lobby for 3 days waiting for Samuel's arrival. Sunday afternoon the doctors told me that there was no way Samuel was coming that night...in fact he probably wouldn't be here till Tuesday (just what I wanted to hear!). So my family decided that had to go back home. Mind you, Lynn had just had a baby two months prior and he had his own heart issues going on. They left Boston at about 5:30 pm...I called them at 8:00pm to tell them he had come! We made this joke that he wanted to be alone with his mommy and daddy!
So the next morning Steve's dad and Darby (Sammie's sister) came by for a visit and a couple of days later my sister Andrea, her fiance Joel, my mom and step-father came for a visit. They all spent a couple of days there with me, taking care of me and doing what they could for Samuel. When Samuel was transferred to Fletcher Allen in Vermont he had visitors at least twice a week and every weekend. Cousins, Aunts, Uncles, Grammies, Grandpas, Memeres, friends of all the family and of course us!
When Sammie had his heart cath they all came down to the hospital for the day with us and didn't leave until he was released. When he had his open-heart surgery people actually took turns sleeping on the floor of the hotel so they could be there for him and us. They continue to involve themselves in all aspects of Sammie's life and I welcome that with open arms. What more could I ask for than to have the most supportive and loving family?
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