As we get ready for one of the most exciting road trips of our entire lives I feel myself getting overwhelmingly stressed out about what we have to bring. We have to travel very very heavy with Sam. Just to share how heavy here is a list of some of the things we have to bring...
Suction machine (which we only use maybe 2-3 times a day now if that YAY!)
suction catheters
2 basins for the suction machine
extra tubing for the suction machine
Feeding pump
feeding bags
special fromula that can only be ordered
extra g-tube extension tubing
Extra G tube just in case Sam's pops out
Surgical lube
venting tubes
medical gloves
Syringes (5ml, 10 ml, 20 ml and 60 ml)
2x2 split gauze pads
Ointment for the g-tube site
O2 (just in case)
Pulse Oximeter
Prevacid
Nebulizer
pulmocort
atrovent
xoponex
astelin
vitamin
Plus all of the regular baby stuff one would need to travel with. Hmmmm wonder if am forgetting anything. Anyone have any ideas????
OK now Sam is going to be watching a ton of movies and we (Scott, me and Jeff) are going to be listening to music. I have started organizing my ipod into different travel mixes that we all might like. Now Scott and Jeff (our brother-in-law) are dorks so they may not like anything too cool lol.... Any suggestions of travel songs. Oh by the way the reason why Jeff is coming is Scott cannot drive 5 minutes without getting lost or falling asleep behind the wheel so Jeff will be there to help me drive, bring on some moral support, positive energy, and help out with whatever else we may need. He is such a trooper to offer to come. We love you Jeff... Thanks a bunch!
Thursday, June 26, 2008
Wednesday, June 25, 2008
Check It Out!
So Sam's girlfriend Amelia made her very first TV debut yesterday on Fox News yesterday morning. They showed Amelia, Nestor and Debbie at a therapy center that does very intense physical therapy with something called a therasuit. This is one of the new waves in physical therapy and one that has been helping children with all kinds of motoric impairments make miraculous strides. They also showed Amelia and Debbie in a hyperbaric chamber. A hyperbaric chamber is the medical use of oxygen at a higher than atmospheric pressure which in theory can help children with CP because the 02 given this way is said to increase brain cell activity. Amelia has made some great gains since starting this program. She has been there for almost a month and her last day I believe is this friday. Check it out, its really cool.
OK I am having trouble pasting the link for some ridiculous reason. Go to Sam's friends on the right side of the page and click on Amelia...
OK I am having trouble pasting the link for some ridiculous reason. Go to Sam's friends on the right side of the page and click on Amelia...
Tuesday, June 24, 2008
Sam's OT Session
I have been recording a lot of Sam's therapy sessions since he started early Intervention almost 2 years ago. Now that Duke is coming up really quick (1 week from today)we have been taping more frequently to see if we can track his progress pre and post stem cell infusion. This is a video from one of Sam's occupational therapy sessions with Keith. Thank g-d Keith loves Sam because he hates dealing with me as I am one of the biggest PIAs ever. Keith happens to be an AMAZING OT and we feel very very lucky to have him working with Sam.
In this clip Keith is working on building Sam's upper body strength. Sam has a difficult time bearing weight through his arms but he tries so hard and is such a sport about participating in all of his therapy. Sometimes Sam needs a little pep talk from mama to complete a task. See for yourselves...
In this clip Keith is working on building Sam's upper body strength. Sam has a difficult time bearing weight through his arms but he tries so hard and is such a sport about participating in all of his therapy. Sometimes Sam needs a little pep talk from mama to complete a task. See for yourselves...
Friday, June 20, 2008
NICU
This is a blog that I cut and pasted off of our friends Jason and Val's blog. I have a link to their blog on my main page "Tyler." I was apalled at the comments that were written regarding this article. Some people can be so heartless and could care less about others misfortune until of course it happens to them. Feel free to check out Jason and Val's blog as they have the link to the article along with a link to the comments. http://jasonandval.blogspot.com/2008/06/million-dollar-babies.html
Million Dollar Babies
In this week's Business Week there is an interesting article on the cost of saving preemies in the US. It says that $26 billion a year are spent for NICUs to save the lives of preemies (those born less than 37 weeks), which account for about 13% of all births. Of course, this story hits home for us since we've gone through a pretty rough course with Tyler over the past 2 years--and counting.
What's interesting are the comments on the article, especially those arguing that the money can be better spent on saving less critically ill children (i.e., that it's better to spend the money to save 10 lives than to save one), or that parents should let preemies go because they are suffering and won't have "quality of life." I'd like to see if these people still think that if this situation ever happens to them. It's easy to judge from afar, but don't pass judgement unless you've walked a mile in my shoes.
Million Dollar Babies
In this week's Business Week there is an interesting article on the cost of saving preemies in the US. It says that $26 billion a year are spent for NICUs to save the lives of preemies (those born less than 37 weeks), which account for about 13% of all births. Of course, this story hits home for us since we've gone through a pretty rough course with Tyler over the past 2 years--and counting.
What's interesting are the comments on the article, especially those arguing that the money can be better spent on saving less critically ill children (i.e., that it's better to spend the money to save 10 lives than to save one), or that parents should let preemies go because they are suffering and won't have "quality of life." I'd like to see if these people still think that if this situation ever happens to them. It's easy to judge from afar, but don't pass judgement unless you've walked a mile in my shoes.
Tuesday, June 17, 2008
I Did It!!!
I just changed Scott's cell phone ring. It is freaking hysterical. Probably sooooo inappropriate for the corporate world but oh well... I changed the ring to "Push It" Salt -n- Peppa style... Oh man he is going to be so embarrassed. Maybe he will comment after his phone rings while he's at work. We shall see...
Wednesday, June 11, 2008
WE GOT THE DATE!!!!!!!!!!!!!!!!!!!!!!!
We got the date for DUKE!!!!!!!! Words cannot even express the amount of joy that I feel right now. We are going, we are really really going. The date is July 1st! Please pray that Sam stays healthy and we get down there safely. OK, so now that we have the date we are going into lock down mode. No one is allowed to come and visit until after we get back. As for the therapists... If you see a child that you even think may be sick stay away from us please. Thank you so much everyone for all of your support, thoughts and prayers. More on this later...
My Poor Husband...
In my last post I mentioned that I love to annoy people just for my own entertainment purposes, but let's be honest, other people think some of the things I do are pretty damn funny. My most favorite person to annoy is Scott. Example... Scott is a technological moron. He cannot even work the remote on our DVD player let alone change his ring tones on his cell phone. So for fun I change his ring tones behind his back. I usually put a ridiculous song on that would really embarrass him. Scott usually charges his cell phone at work and leaves it on his desk all day including when he has to leave his desk. The last song I put on his phone was "My Humps." His office still makes fun of him every time the phone rings. I want to put another song on but I am having trouble thinking of something really funny. Anyone have any thoughts on the topic?
Thursday, June 5, 2008
Balance
How does one balance all the different aspects of their lives?
I look back at the person that I once was. I look far, far back to the toddler Carrie (yes my memory is very long and precise), the child Carrie, the adolescent Carrie, the teenage Carrie (god help my parents), the young adult Carrie, and now the mommy Carrie. So have I changed? Have any of you really changed? Do we want to? Many people might say that I really haven't changed. I look at myself, and think "boy I really haven't changed!" I am still a great person, a funny person, a vain person, can still get my BITCH hat on, still have a temper, still have no patience for stupidity (including my own at times), still caring, and passionate, spiritual, emotional, strong, loud, inappropriate/annoying (just to see how others react for my own entertainment purposes only), determined, generous, incredibly thoughtful, realistic, and loyal.
I use all of these attributes god gave me and I basically... well just live. Now throw in a major life altering traumatic event and try to keep balanced. I hate that I keep talking about how hard life is for us, but it is HARD! I know life is all just how you look at it. I try and convince myself every day that it's not hard it just is what it is. And maybe Sam's care is not that "hard" anymore because you get use to it. And maybe learning to live with the fact that my baby may never do this and that is not that "hard" anymore (doesn't mean it doesn't hurt) but you get use to it and that becomes OK too. You learn to accept certain things. But... what I do find so hard is trying to balance every aspect of my life each and every day, and trust me it is a constant struggle.
Making decisions about when, why, what, and how to do things and knowing the ramifications if you are wrong kills me. Knowing when to be kind, assertive, curt, playful, etc. with all of the people I have to deal with on a daily basis just throws me into a gigantic tornado where I just want to yell STOP! Having to balance the feelings I feel, my emotions and at the same time keep my cool for my son and those around me and also being careful not to step on toes or hurt any one's feelings is just beyond exhausting...(sigh).
Example... Here comes the roller coaster again... Yesterday Sam had a follow-up eye doctor appointment. Before I even stepped into the day I knew this appointment was not going to be good. The doctor is wonderful and we didn't have to wait, not even for a minute. We were in and out of there within 1/2 hour. So within that 1/2 hour it was determined that Sam has a drift in his left eye which can lead to blindness in that eye if we don't patch his right eye two hours a day. And even that may not be enough to fix the problem. Imagine the enormous pit in my stomach at the thought of the slightest possibility that my child, on top of EVERYTHING else mind you, may lose his sight out of his left eye. Of course I was on the verge of tears but I'd never cry, at least not in front of anyone. So here I am with baby and nurse in tow my mother waiting in the car, plop Sam into the car seat, put on his eye patch, trying to keep my cool, all the while the nurse is saying we should wait until we get home for the eye patch about 10 different implicit ways, my mother asking me twice what happened in the doctor's office, me saying don't worry about it it doesn't matter, then getting a "thanks a lot Ca" because I obviously offended her. All the while I am trying to keep it in the breath and then I got one more annoying comment and finally SNAPPED! I said something nasty to my mother; she got mad at me and stayed that way for a few hours. I can't say I blame her because when the bitch comes out everyone get on their thickest armor. I can be absolutely scary or at least stick the knife in and turn it in just the right way. I don't mean to be this way. I don't want to be mean. I want to be mellow and kind. I am sick of fighting the battle of the everyday maybe you should do it this way versus that way. I wish I could just tune everyone out and not care how many times things are said that bother me.
My question is when is enough enough? How many times do I have to say, "I'd rather not talk about this now, or I am not comfortable with this, or I would prefer if we did it this way." My limit is 3 times. You get 3, everyone out there gets three. If I have to repeat myself to the same person 3 times, well run. If you ask me three times, run. If you bombard me with 3 things when I am already overwhelmed, run. My limit is 3. In this I have changed. My limit use to be 2. I would grow impatient after 2. I honestly would like there to be no number. I would LOVE it if I had the power and the mental where with all to just let it slide…
I have asked many parents in my situation what it is they do. You know, how do they react to those who have the best intentions of course but are adding a little bit too much to the plate at the time and do not get the point after the first few times that they say back off for now. Please do not get me wrong. My intention was not to single out my mom or my nurse. Both are AWESOME and only have the absolute best intentions for Sam and myself. But in my specific situation I am constantly walking on the edge of a very steep cliff. My nerves are shot. So anyone and everyone on any given day could really push me over that edge without even realizing what they are doing. I know we can't control others, only ourselves. So I am asking for advice. What would you do if you were constantly being bombarded? Is there really a nice way of saying fuck off? I dunno, anyone care to give it a whirl? How do you balance being kind, tough, assertive, etc…?
I look back at the person that I once was. I look far, far back to the toddler Carrie (yes my memory is very long and precise), the child Carrie, the adolescent Carrie, the teenage Carrie (god help my parents), the young adult Carrie, and now the mommy Carrie. So have I changed? Have any of you really changed? Do we want to? Many people might say that I really haven't changed. I look at myself, and think "boy I really haven't changed!" I am still a great person, a funny person, a vain person, can still get my BITCH hat on, still have a temper, still have no patience for stupidity (including my own at times), still caring, and passionate, spiritual, emotional, strong, loud, inappropriate/annoying (just to see how others react for my own entertainment purposes only), determined, generous, incredibly thoughtful, realistic, and loyal.
I use all of these attributes god gave me and I basically... well just live. Now throw in a major life altering traumatic event and try to keep balanced. I hate that I keep talking about how hard life is for us, but it is HARD! I know life is all just how you look at it. I try and convince myself every day that it's not hard it just is what it is. And maybe Sam's care is not that "hard" anymore because you get use to it. And maybe learning to live with the fact that my baby may never do this and that is not that "hard" anymore (doesn't mean it doesn't hurt) but you get use to it and that becomes OK too. You learn to accept certain things. But... what I do find so hard is trying to balance every aspect of my life each and every day, and trust me it is a constant struggle.
Making decisions about when, why, what, and how to do things and knowing the ramifications if you are wrong kills me. Knowing when to be kind, assertive, curt, playful, etc. with all of the people I have to deal with on a daily basis just throws me into a gigantic tornado where I just want to yell STOP! Having to balance the feelings I feel, my emotions and at the same time keep my cool for my son and those around me and also being careful not to step on toes or hurt any one's feelings is just beyond exhausting...(sigh).
Example... Here comes the roller coaster again... Yesterday Sam had a follow-up eye doctor appointment. Before I even stepped into the day I knew this appointment was not going to be good. The doctor is wonderful and we didn't have to wait, not even for a minute. We were in and out of there within 1/2 hour. So within that 1/2 hour it was determined that Sam has a drift in his left eye which can lead to blindness in that eye if we don't patch his right eye two hours a day. And even that may not be enough to fix the problem. Imagine the enormous pit in my stomach at the thought of the slightest possibility that my child, on top of EVERYTHING else mind you, may lose his sight out of his left eye. Of course I was on the verge of tears but I'd never cry, at least not in front of anyone. So here I am with baby and nurse in tow my mother waiting in the car, plop Sam into the car seat, put on his eye patch, trying to keep my cool, all the while the nurse is saying we should wait until we get home for the eye patch about 10 different implicit ways, my mother asking me twice what happened in the doctor's office, me saying don't worry about it it doesn't matter, then getting a "thanks a lot Ca" because I obviously offended her. All the while I am trying to keep it in the breath and then I got one more annoying comment and finally SNAPPED! I said something nasty to my mother; she got mad at me and stayed that way for a few hours. I can't say I blame her because when the bitch comes out everyone get on their thickest armor. I can be absolutely scary or at least stick the knife in and turn it in just the right way. I don't mean to be this way. I don't want to be mean. I want to be mellow and kind. I am sick of fighting the battle of the everyday maybe you should do it this way versus that way. I wish I could just tune everyone out and not care how many times things are said that bother me.
My question is when is enough enough? How many times do I have to say, "I'd rather not talk about this now, or I am not comfortable with this, or I would prefer if we did it this way." My limit is 3 times. You get 3, everyone out there gets three. If I have to repeat myself to the same person 3 times, well run. If you ask me three times, run. If you bombard me with 3 things when I am already overwhelmed, run. My limit is 3. In this I have changed. My limit use to be 2. I would grow impatient after 2. I honestly would like there to be no number. I would LOVE it if I had the power and the mental where with all to just let it slide…
I have asked many parents in my situation what it is they do. You know, how do they react to those who have the best intentions of course but are adding a little bit too much to the plate at the time and do not get the point after the first few times that they say back off for now. Please do not get me wrong. My intention was not to single out my mom or my nurse. Both are AWESOME and only have the absolute best intentions for Sam and myself. But in my specific situation I am constantly walking on the edge of a very steep cliff. My nerves are shot. So anyone and everyone on any given day could really push me over that edge without even realizing what they are doing. I know we can't control others, only ourselves. So I am asking for advice. What would you do if you were constantly being bombarded? Is there really a nice way of saying fuck off? I dunno, anyone care to give it a whirl? How do you balance being kind, tough, assertive, etc…?
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