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...