Hello everyone! I am once again coming to you asking for your help. I am not however coming on Samuel's behalf this time or at least this week. Let me share a little with you first.
I have met through an internet group for Moms with special needs children, a great friend. Her name is Susan and she has an adorable little girl named Reiley, this family lives in AZ. Reiley is like Sam in the fact that she has a lot of the same health problems, feeding, swallowing, developmental delays etc... and she is undiagnosed at this time. Reiley's biggest challenge is eating. She also has a feeding tube that gives her 90-100% of her nutrition. Reiley's doctors want to send her to VA and/or Ohio soon. There is a great feeding clinic and some doctors that may be able to FINALLY get her a diagnosis. For these kids having a diagnosis is crucial, you can not properly treat or even get the correct therapy if you do not know what you are fighting. Susan and I have made a great connection and have become great friends.
So why am I telling you about lil Miss Reiley?? Because as so many of you are aware of through our journey this can get costly and scary. Insurance does pay for the medical aspect but it does not help with gas, lodging, and food. Remember I said they live in AZ and are traveling to VA and OH. There is a medical fund set up for Reiley if you are able to help. There is also a couple of nice people that are donating a portion of sales from there business. These businesses are Tupperware and Brown Bag(adult items). I have links to these 2 pages if you are interested in buying something. I am adding a link at the end of this to Reiley's page so you can read more about this sweet little girl.
Please know that I am not one to ask my family and friends to make monetary donations for just anyone or anything, but I have made a strong connection with this family. If you are unable to donate then I am asking you to PLEASE pray for this family. Pray for wisdom to the doctors and for God to guide the specialists. Pray for strength as this is the hardest thing to go through as a parent. Thank you everyone for taking the time to read about Reiley.
http://reileylakemedicalfund.weebly.com/
www.brownbagparty.com/u/Terri/website/register.jsp
http://my2.tupperware.com/jshotwell
Love to all,
Carrie
Thursday, February 28, 2008
Wednesday, February 27, 2008
In the Waiting Room...
We took Sam for his pre-op appointment this morning. Usually when I have to take Sam anywhere I become overwhelmed with anxiety. Lately, I have been trying to practice something new. I say a mantra over and over in my head that goes something like this: "Sam is brave, Sam is strong, I am brave, I am strong, everything will be OK, its going to be a great day."
Now I knew today's appointment wasn't going to be fun as they needed to take blood from my little man, and he did cry and scream for quite some time. To be honest though, it really wasn't that bad. We went through the motions one breath at a time and before I knew it Sam fell asleep and we came home. All the while I continued to focus on the positives and tried to reflect positive energy on whoever I needed to make contact with. It worked pretty nicely as they took us in immediately, gave us an extra hand and did not keep us longer than necessary. It takes a lot of work and energy for me to be so positive especially in these types of stressful situations so to be honest I wasn't 100% light and fluffy.
After we came out of the pre-op room we had to wait to talk to anesthesia all the while Sam was screaming and choking with his feeding tube dangling and suction machine going... Anyway, almost everyone in the waiting room was so BLATANTLY staring at us. I don't normally care when people stare at us, I'm use to it, I know they are looking at how unbelievably beautiful I am ;) . But at that moment I had my bitch hat on and I sure enough let it loose. I turned and stared back, but this one particular family continued to stare, so I said really loud "Are you enjoying the show?" I mean, come on... How rude and inappropriate can some people be? I just couldn't help myself. What can I say, I am a work in progress. So what would any of you have done if you were in my situation?
Now I knew today's appointment wasn't going to be fun as they needed to take blood from my little man, and he did cry and scream for quite some time. To be honest though, it really wasn't that bad. We went through the motions one breath at a time and before I knew it Sam fell asleep and we came home. All the while I continued to focus on the positives and tried to reflect positive energy on whoever I needed to make contact with. It worked pretty nicely as they took us in immediately, gave us an extra hand and did not keep us longer than necessary. It takes a lot of work and energy for me to be so positive especially in these types of stressful situations so to be honest I wasn't 100% light and fluffy.
After we came out of the pre-op room we had to wait to talk to anesthesia all the while Sam was screaming and choking with his feeding tube dangling and suction machine going... Anyway, almost everyone in the waiting room was so BLATANTLY staring at us. I don't normally care when people stare at us, I'm use to it, I know they are looking at how unbelievably beautiful I am ;) . But at that moment I had my bitch hat on and I sure enough let it loose. I turned and stared back, but this one particular family continued to stare, so I said really loud "Are you enjoying the show?" I mean, come on... How rude and inappropriate can some people be? I just couldn't help myself. What can I say, I am a work in progress. So what would any of you have done if you were in my situation?
Friday, February 22, 2008
Surgery Postponed
Sam's surgery has been postponed for March 4th because he has a nasty gasto-intestinal bacteria infection. He probably will be fine by Tuesday, but all docs agree why take a chance and risk Sam getting sepsis or something. Just a small hiccup in our plan, not a big deal. So if everyone can just hold their prayers for March 4th that would be great. Remember, we want Sam to heal fast, 2 day hospital stay, and a private room.
Oh by the way did I tell everyone that we are going to win the lottery tonight. Yeah, well that's the plan... Mega Millions. $270,000,000... What would you do with all of that money????
Oh by the way did I tell everyone that we are going to win the lottery tonight. Yeah, well that's the plan... Mega Millions. $270,000,000... What would you do with all of that money????
Tuesday, February 19, 2008
Blood is Thicker than Water
Anyone out there ever donate blood???? Today I went to NYU Hospital to donate blood for Sam's surgery. Chances are he won't need it but if he does he will have mine. I mean can you imagine your child needing a transfusion and getting some complete wack-a-doo's blood.
I am ashamed to admit that I never donated blood before. But I have to say its a bigger deal than what I once thought. First of all I had to go through this long arduous process of filling out a very detailed and personal questionnaire. How many sex partners have you had? Have you traveled to Europe in the last 3 years? Have you had sex in Europe in the last 3 years? Have you had sex with a man that has had sex with a man? Whoa, TMI...
So after this long application you go into a sound proof room with a blood lab tech who then asks the same exact questions that were on the questionaire again, along with a very painful finger prick and a collection of vitals. After the screening you go into another room and lay on a pseudo lounge chair with random strangers around you going through the same thing. But of course I have to be directly across from this really bizarre women who would not stop talking to me. She starts off by telling me how bad this is going to hurt, then she tells me they are going to stick me with a gigantic elephant needle and my arm is going to really sting, burn and throb.
Now, I NEVER cared about getting needles or going for blood work. The process just never phased me as a big deal. So I was like whatever to this person. But then I saw the needle... It was HUGE! And yes it really hurt going in and was very uncomfortable for the 20 minutes I had to lie there and deal with my blood being sucked out of me. So while I am laying like a pin cushion whack-a-doodle accross the way decides to tell me her entire life story and continues to ask me personal questions about why I was there, all the while yelling at the nurses to get her more fig newtons and juice.
So I try and position myself out of direct eye contact and shut my eyes to relax as I only had about 2 1/2 hrs of sleep the night before. As I shut my eyes the nurse runs over and starts shaking me asking me if I'm OK. So I said yeah I'm just trying to rest. So she says well you can't do that here we need to monitor you and make sure you do not pass out so keep your eyes open. I tried to assure her that I was just fine and that if I pass out I'd let her know. Of course this did not go over well so I had to deal with the blood donar commentator from accross the way. And guess what, no one gave me a cookie or juice. I could have walked out of there and passed out in the parking garage and no one would have known what was wrong.
Anyway, I was fine but for sure know what you are getting yourself into when you donate blood. Of course its the right thing to do, but mentally prepare yourself first.
I am ashamed to admit that I never donated blood before. But I have to say its a bigger deal than what I once thought. First of all I had to go through this long arduous process of filling out a very detailed and personal questionnaire. How many sex partners have you had? Have you traveled to Europe in the last 3 years? Have you had sex in Europe in the last 3 years? Have you had sex with a man that has had sex with a man? Whoa, TMI...
So after this long application you go into a sound proof room with a blood lab tech who then asks the same exact questions that were on the questionaire again, along with a very painful finger prick and a collection of vitals. After the screening you go into another room and lay on a pseudo lounge chair with random strangers around you going through the same thing. But of course I have to be directly across from this really bizarre women who would not stop talking to me. She starts off by telling me how bad this is going to hurt, then she tells me they are going to stick me with a gigantic elephant needle and my arm is going to really sting, burn and throb.
Now, I NEVER cared about getting needles or going for blood work. The process just never phased me as a big deal. So I was like whatever to this person. But then I saw the needle... It was HUGE! And yes it really hurt going in and was very uncomfortable for the 20 minutes I had to lie there and deal with my blood being sucked out of me. So while I am laying like a pin cushion whack-a-doodle accross the way decides to tell me her entire life story and continues to ask me personal questions about why I was there, all the while yelling at the nurses to get her more fig newtons and juice.
So I try and position myself out of direct eye contact and shut my eyes to relax as I only had about 2 1/2 hrs of sleep the night before. As I shut my eyes the nurse runs over and starts shaking me asking me if I'm OK. So I said yeah I'm just trying to rest. So she says well you can't do that here we need to monitor you and make sure you do not pass out so keep your eyes open. I tried to assure her that I was just fine and that if I pass out I'd let her know. Of course this did not go over well so I had to deal with the blood donar commentator from accross the way. And guess what, no one gave me a cookie or juice. I could have walked out of there and passed out in the parking garage and no one would have known what was wrong.
Anyway, I was fine but for sure know what you are getting yourself into when you donate blood. Of course its the right thing to do, but mentally prepare yourself first.
Friday, February 15, 2008
Surgery
Sam is scheduled for surgery on the 26th of February. He is getting his ear tubes replaced and a fundoplication, which is when they wrap the lower esophagus to narrow the opening from the stomach to the esophagus to prevent reflux. I feel good that this is the right thing for Sam, but of course I can't help but be overwhelmingly nervous about the whole thing. I HATE knowing what I know about hospitals. To be honest its not so much the surgery that makes me nervous its the aftermath. But I am going to try my hardest not to think about all of that yet. So if everyone can pray for a safe surgery, speedy recovery, short hospital stay, and a private room, that would be great. Thanks.
Wednesday, February 6, 2008
Who Wants to See Sam???
Last week we went to United Cerebral Palsy to see if Sam would benefit from some new equipment. They have a share program in NYC and the people there are so kind and amazing. Our friend Debbie pushed us to go and take a look (thanks Deb!). Anyway, we got a piece of adaptive equipment called the Creeper Crawler that helps Sam crawl supported. He actually hates it right now. As you all can see he looks thrilled. But I'm sure in time when he understands the new freedom he will gain in the crawler he will like it.
Today during CME therapy, Yoni, one of Sam's PTs put Sam against the wall to stand. This is the first time ever Sam stood unassisted with his back against the wall. Again, Sam is not thrilled to have to work so hard, but one day he will understand.
Today during CME therapy, Yoni, one of Sam's PTs put Sam against the wall to stand. This is the first time ever Sam stood unassisted with his back against the wall. Again, Sam is not thrilled to have to work so hard, but one day he will understand.
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