TGIF

OK, its Friday time to participate.... Let's see who knows their movie lines.... What is your favorite movie line ever? You know, that line from a movie that you repeat over and over again and if a person doesn't get it you look at them like they were born on another planet. I know its hard to just pick one and if you must write more that's fine, just don't give me a million....

I'm better than that...

Its interesting the twists and turns that life brings before us, all of us. I find myself often questioning my purpose and the purpose of others. Is life really just a compilation of lessons that we must learn from one an other and from ourselves. Is our goal here on earth to be good to others regardless of how you are treated? Is the goal to be tolerant? Is the name of the game forgiveness? Obviously no one can answer these questions but I find that when I speculate on the above it helps to bring me to a greater place within myself or does it...

Today I got a huge bitch slap right in the face. I can't elaborate on the specifics due to legal reasons but try and follow the best you can. So someone who I trusted and who I did beautiful and over the top generous things for decided to take tremendous advantage of my kindness and is really putting my entire family under a lot of stress. Knowing the heartache and burdens that I have to live with on a daily basis this person is still doing a very terrible thing to my family. How this person can live with themselves is beyond me. In my eyes it is the equivalent of drowning poor innocent puppies. Only a monster would behave like this and think of only themselves. Only a really god awful poor excuse for a human being would kick a person while they are down like this. My first reaction was certainly to call, harass, yell, scream, cry, etc... But now as I think more and more about the situation I know I am a better human being. I took a deep breath and I prayed for this person. I feel sorry for this person.

Half of me wants to never be kind again, never trust again, never be generous again. But I know that whether I am kind or not, generous or not, trusting or not, there will always be someone out there looking to take advantage or hurt or abuse. So I want to do my part for the good of humanity and not be spoiled by the sourness of this situation. I will hold my head high and continue to be kind, to be generous, to be trusting, etc... I know who I want to see when I look in the mirror everyday and I think I do a damn good job of working hard to be that person. I am not saying I am anything close to perfect but I do have integrity and I do have a heart.

With the upcoming New Year and all of our new New Year resolutions could we all maybe try to be better people (whatever that means) with the hope that it will spread on to others and we can all have a better year to come...

Priceless Grin

Home Sweet Home

Thankfully the rest of the week went as planned. Sam had his 2 additional CME sessions with Ramon and they were wonderful. I think Sam did really well. He seems much stronger to me and he is even trying to organize his movements more. Sam also seems a bit quicker in his movements as well. As a matter of fact he is so quick that when Scott had to vent his G-tube, Sam kicked the tube extension so hard and fast he actually broke it. So... I got to spend half my day today at NYU Hospital getting Sam's feeding tube replaced. I understand how this news would be upsetting to most people. I can hear it out in cyber space now, "Oh, poor girl, can't she ever get a break..." Well actually today went by like butta... No glitches in the paperwork, no extended wait times, no traffic getting in and out of the city, and best of all Sam was able to tolerate the procedure wide awake without a peep and a great big snaggle toothed smile. All he needed was a little Elmo DVD and he was all set. Bravo my little man, Bravo!

OYE!!!

OK so we made it to NJ in one piece, but it hasn't been easy. We had our first session with Ramon on Sunday and it was wonderful. Sam did really well both Sunday and Monday. Then Monday evening Sam began to have some upper airway issues. A lot of coughing and sneezing, runny nose etc... P.S. I was beyond exhausted and did not have a nurse that night. So of course Sam did not sleep not one wink. He also began to run fever, blah, blah, blah. I felt so defeated. With all of the planning we did to make this week happen so that Sam may have a chance to develop some of his gross motor skills he gets sick. I was beyond sickened by this and just felt like giving up completely. I mean what's the point when all you do is run, run, run just to have everything blow up in your face over and over again. I was ready to throw in the towel and go home. I mean with no sleep for the past 2 weeks and feeling this defeated what else would one do. I think at this point all I wanted was a shower. Once I showered and cleared my head I decided to just wait everything out. So we cancelled Tuesdays appointment and this morning Sam woke up much better. Thankfully we were able to keep our appointment for today and god willing we will for tomorrow and Friday. If I can ever figure out how to download video I will try and post it so everyone can see. Please continue to pray for Sam to stay healthy so that he can participate in the last 2 sessions. Thank you all for reading and being with us through all of our adventures. Have a happy and a healthy holiday.

Update

I know I haven't written in a little bit but life has been just a little too busy for me lately. Sam had a bronchoscopy on Wed. and he handled it like a champ. He was a bit fragile for about 24 hours post but after that he has been doing much, much better. Sam's pulmonology team is really top notch and they take amazing care of him. Since the bronchoscopy I have hardly had to suction Sam. Over the last 3 1/2 weeks or so we had to suction him non-stop. So this procedure was definitely very productive.

I am really excited to say that we did get the appointments with Ramon Cuevas for this upcoming week. So we will be in NJ tomorrow through Fri. I'm not sure if I will have computer access but if I do I will keep updates on Sam doing his Cuevas MEDEK Exercises. So far all of Sam's therapies have been helping him progress. Today he sat up several times for prolonged amounts of time and was able to play with a toy while sitting and maintaining balance. This is a tremendous feat for Sam. The task would be equivalent to you and me juggling while balancing on a high wire. Not easy to do yeah? Sam's disposition is also getting back to normal, sweet and tolerant.

Also another reason why I have not been able to write in some time is because as of Dec. 2 I will be teaching a graduate course and I have been preparing. To be honest I didn't realize what I was getting myself into but I think it will be really good for me. I love the idea of molding fresh young minds (can you see me rubbing my hands together and laughing like the wicked witch of the west hehehe...). The course I will be teaching is Early Intervention with Assistive Technology. How appropriate is that? I am really excited because I think I will be able to give the students something that many of my professors were not able to give me and that is the perspective of the parent and the clinician. Anywho I am off to pack and get ready for NJ.
Happy Thanksgiving...

TGIF

Its time to participate and let your voices be heard... This week's movie pick comes from my favorite category ever!!! Probably not that popular to most but if you know me you can probably guess. What is the best, most scariest horror movie ever made? You know the ones that really leave a lasting imprint so that you can never go into a dark closet again...

The Strong Ones

These guys are the stong ones. These are some of the people I look to for strength. These folks keep so positive and see so much light when they look at their children. These are parents that live with a sense of positive expectancy. I learn from them. This is my normal, suction machines, feeding tubes, developmental delays, doctors, doctors, and more doctors, home nursing and home therapy plans. These are the people that are part of my "normal" world...
http://amazing-amelia.blogspot.com/ This little girl is Sam's twin.
http://ilovegiuliana.blog.com/ This little girl is a newbie and is doing really well.
http://www.jasonandval.blogspot.com/ This little boy was Sam's neighbor in the NICU at NYU
http://ccfb.wordpress.com/ We share nurses with this adorable little boy.
http://johnmurphy-barbara.blogspot.com/ And this little boy we met on the internet and mom is an awesome writer that I just had to connect with.

Priorities

These last few weeks have been beyond hectic to say the least. When Sam gets sick it causes a huge snowball effect of other things getting knocked out of place. For example, appointments get cancelled, therapies go on hold, more appointments get added, etc... When we go to different doctors especially when he is sick red flags go off for them and they begin to think "what else" is going on with this child. So then of course this leads to more appointments and more testing and more and more and more and more...



So last Sunday both of our PTs called and invited myself and Sam to attend a CME conference http://www.cuevasmedek.com/ . They wanted "The" CME guy Ramon Cuevas to use Sam at the conference to present examples. This is really an amazing opportunity and one that hundreds of families wish they could do for their children. He is some what of a miracle worker when it comes to helping developmentally delayed children acquire gross motor skills. After those few hours Sam came home and sat up for 20 minutes completely unassisted!!! Now Ramon will be treating children independently after the conference is over but the waiting list is insane. We are borderline on whether Sam will be seen by him or not and we will have no idea until late next week. So my anxiety level is through the roof because if I can't get Sam to see him I feel like I have failed my son. This man has gotten children with half their brain missing to walk. And trust me money is no object with us, but that is not how this gentleman works. So in the mean time I am going to take what I can get in terms of letting who ever use Sam at the conference. But there is always a penalty... First of all there are other children there too and where there are children there are germs. Sam is just getting over a pneumonia. Every time Sam gets a lung infection it develops scar tissue once the lungs develop enough scar tissue you go into organ failure then there will be no more Sam. So they invited Sam to come back yesterday morning. Sam was one of the only children there for the first part of the morning. But as the morning progressed more children came and Sam started to become really agitated. I took this as a sign to get out of there especially since some of the kids were coughing. But after I left I couldn't help but to feel like Sam missed something. Of course Sam's health is the most important but it is really terrible that I have to make these kinds of decisions.



In the mean time Sam is scheduled for a bronchoscopy, a neurology appointment, feeding clinic, pulmonology, and I have health appointments for myself as well. In addition Sam has a very important annual meeting coming up to keep and increase services and get additional equipment. I know I am going to have to fight at this one because this state is starting to hold back money for early intervention. So if we do get in to see Ramon it will be for six sessions over a six day period. Which means cancelling and rescheduling. But I am stuck in limbo right now because I don't know when and if I have these appointments. And if I don't play everything right Sam looses.

It kills me to have to put Sam through all of this chaos to just make sure he has a chance to walk, eat, talk, live... Scott and I have to fight for every little aspect of Sam's health and development. I am so tired of everything we have to do every day. People talk about how strong I am I'm really not. I am just like everyone else. The only difference is I got dealt a really shitty hand. So how does that make me strong??? Would anyone else not do the same things that we do. Maybe most people would not know exactly what to do but you all would know how to get the help you need. You could always ask me, right? Then you would do what needs to be done. But does this all really make me strong??? I don't think I am that strong. If I were strong then I would take Sam to other kids parties or to the play ground. Other families that have children with special needs are much stronger then I am. They don't let any negativity stop them. They take their kids on the subway, go to public places, go to parties, travel long distances, etc... Sam is strong, not me. We can all learn from Sam, not me.

TGIF

Ok today we are doing an adult version of our Friday fun. So for those of you who are easily offended sign off. Who are your top 3 celebrity "to do" list? You know that agreement you've made with your significant other, the one that your allowed one freebee with your biggest celebrity crush. Like it would ever happen. Just for fun people...
Andrea and Alise if either one of you put Scott Baio I am going to get really sick LOL...