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.

The List

Sam has been doing a bit better today. He actually smiled a bunch and was very playful. Whew... I almost put him out on the front stoop with a For Sale sign on his head. Yesterday Sam was out of control. I finally gave in about 5pm and gave him Tylenol. Sure enough 20 minutes later he was fine. Teething... perhaps. But should we really blame all the world's problems on teething. Who knows? I give up...

The treadmill... Ahhh the treadmill. What a metaphor for my life, how ironic. Running and running but never getting anywhere. Hugh... Anywho, I made my very amazing no one can beat it "run" mix. Oh yes I have been running and it feels wonderful. I think I may have dislocated my hip, but its all good. Who wants to see my product in the making. No no I don't mean my bottom. I'm talking about my mix. Here it is:

1.Shakedown Street - Can there really be a more uplifting song?
2. Beautiful - Moby
3.Crazy in Love - I took the Beyonce advice.
4.Elevation - I had to throw in a U2 song.
5.Armageddon It- I got the 90's hard rock vibe from Barb.
6. Uptight - Ya gotta love Stevie Wonder
7. Don't Leave me This Way - Thanks for the disco idea mom.
8. Ray of Light - Beth's rec of Madonna, thanx.
9. Pump up the Volume - Oh yes I did...
10.Native Love - The best early 80's club song that shows my age.
11. It Takes Two - Nothing like a little Rob Base to get my cheese on.
12. One Hand in My Pocket, acoustic version - Cool it down
13. In your Eyes, Jeffery Gains version
14. Heaven - Bryan Adams
15. Only Living Boy in NY...

Help me out...

Updates:
Sam has been pretty sick. We spent the last week or so running back and forth to doctors, ER, calling 911... The whole bit. Sam is on another antibiotic and he seems to be doing somewhat better. He is a little mushy today but no fever. We are just trying to keep Sam comfortable and happy and hopefully get a few therapy sessions in this week.

Scott and I were able to get away for one night last Thursday for my B-day. We shopped, got massages, ate, and best of all slept!

My class is over. The girls did pretty well. I think I scared them with their pop quiz. Almost everyone Aced the final. I really had fun teaching. I already received e-mails and phone calls from some of the girls saying how much they miss me already. I think they are just buttering me up before I figure out their final grade. I am going to teach the same class again for the March semester. It should be a bit easier this time since most of the work is done.

OK so I need a little assistance... Today is actually my birthday and I decided that for the 31st year of my life I am going to start doing more for me. This morning I got up and jumped on the treadmill. It felt really good to exercise. This was the first time in over 2 years that I am doing something good for my body and my mind. The thing is I was only able to do a speed walk for about 1/2 an hour. My usual cardio regimen was a 10 min warm-up, 30-40min run, 10 min. cool down. So I need help with a music mix that can get me empowered and motivated enough to get to my goal.

I need you all out their in cyber space to suggest songs for my work-out mix.
So for the 10 min warm up I need some up-beat happy music to get me in the mood. For the run I need some hard core, booty smacking, bring it on tunes. And for the cool down something mellow to bring me to a good place so I can continue with my day. Let's see who comes through...

Somebody shoot me....PLEASE!!!

Sam is sick again. We just put him to bed and he couldn't get comfortable because he had a temp of 101.3. What the F*&@!

The Giants won so Scott is in a good mood so that's good.

Oh and my class... No one got bonus points. I guess the girls did not do the assigned readings oops...

And me... I'm just happy, wouldn't you be.

A little of this and a little of that...

Sam has made some nice progress over the past few months despite his chronic respiratory infections. He is moving around much more and is standing leaning against furniture and toys when he's put in the position. Actually today he did this for about 5 minutes without falling or losing his balance. He is also sitting and playing with toys when placed into sitting. He is trying to transfer himself into sitting and can do so with minimal assistance. Sam is also nodding his head for yes when asked do you want "this" or "more" of something. He is smiling more socially now and is really expressing himself vocally. As long as Sam stays healthy I believe he will continue to make progress on his own time of course.

Sam also had some fun visitors this week. His cousins Sal and Nicky came to play on tues. and his cousin Juliana came to play today. Of course I did not take one picture. The kids were great with Sam it was really cute to see. And Sam was just enamoured with all of them.

Scott... Not sure if I mentioned that Scott is really kicking major butt at work. He got a promotion for the New Year and Sam and I could not be more proud. Scott gets up at 6ish every morning gets into work by 7-7:30, does not get home until at least 7pm (lately its been more like 10 or 11), then wants to bathe Sam and put him to bed. And on the weekends all he wants to do is carryover all of Sam's therapy and play with his little boy. In addition to that he is always thanking me and telling me how wonderful I am to do what I do everyday. Amazing...

Me... Class is almost over YEAH......! Two more to go and the last class is the final. The amount of work one has to put into teaching a grad class is crazy. I feel like I'm back in grad school. However, this is more fun because I get to stand up and listen to myself talk for about 3 1/2 hours. The best part is my class has to listen to me too or they get a bad grade. Oh and their final (these poor girls, tut, tut, tut) is so hard, I almost feel bad for them. The girls really ticked me off last week because none of them read the assigned readings. So when this happens instead of having discussion I'm lecturing and answering the same ridiculous questions over and over again. "This is graduate school people you have to read, we don't just give out degrees here." So I am teaching the girls a little lesson this week. I am giving them a pop quiz based on the reading for this Sunday's class, all or nothing. If anyone gets all of the questions right they get 5 bonus points on their final if they get any wrong, NUTIN'.

Resolutions

Today...


1 year ago today...

I did a lot of thinking about what New Year resolutions I wanted to make for myself or at least live by for this new year. At first I thought of the following:

1. I will not curse anymore

2. I will try and clean up after myself more

3. I will exercise

4. I will eat better

5. I will not spend money on expensive clothing items

Then I realized that I should probably make a resolution that I could keep or at least want to keep. I figured to stop cursing would be next to impossible, cleaning, there's just no way, not spend money on clothes... hmmmm....nah...

So this year my final decision of a resolution will be to enjoy life more, and that's it. So what are your resolutions...

Happy New Year everyone and thank you for being there to support us.

To You, My Sisters

To You, My Sisters
By: Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist' s offices and NICU units, in obstetrician' s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common.

One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's.

We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.

We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.