Saturday, December 29, 2007

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.

Thursday, December 27, 2007

"It's a Wonderful Life"

Well... We were all ready to watch. Sam was sleeping, we set up a nice spot on the living room floor with a great bottle of wine and some really good snacks... As soon as the movie started Scott said "What the hell are we watching, a black and white movie???" So I said "Come on honey I heard it is a great movie, just give it a chance, pleaseeee." So we got into about an hour of it and I have to say it was really painful, LOL... It must be me, I must be totally corrupted by modern cinematography. All I heard was wah wah wah wah wah... I couldn't stand it. Maybe if the movie was redone starring Brad Pitt and Julia Roberts or something it would be easier to get into. I couldn't understand a word they were saying. The actors spoke so quickly, scenes were jumping all over the place. Scott and I couldn't really follow it at all. I know its what most would expect of me, I am known to be a little slow on the uptake at times. But Scott is actually quite brilliant and even he had a hard time following. Well, we ended up changing the channel and watching my most favorite Christmas movie, "A Christmas Story." I am going to give "It's a Wonderful Life" another try and rent it so we don't have to deal with the commercials. But thanks anyway for the recommendations...

Thursday, December 20, 2007

Christmas Cheer!

Yeah I know, I know... but I was brought up celebrating Christmas what can I say. Christmas for me was never about Jesus anyway, its always been about spending time with family, baking great cookies, eating, and watching lots and lots of movies in our living room by the fireplace. I miss having a fire place, and I miss being able to lay down all day watching movies. So in the spirit of the season what is your favorite Christmas movie ever. I am sure my favorite movie may be mostly everyone elses too. Let's see...

Tuesday, December 18, 2007

I Feel Your Pain... HA!!!!!!!

I almost feel like I should apologize because I haven't written in a while. To be honest I have been putting most of my left over energy in preparing for the class I am teaching. I have also been a bit under the weather, and so was Scott and Sam. So the very little energy I had left went to resting a bit.

I thought it would be interesting in this post to share a little of what I am teaching in my Early Intervention class. One of the lectures I gave focused on the seven stages of grieving. These stages are only partially sequential and I say that because any little blip in a person's universe can knock them right back down to a depressed state or an angry state or even to the very beginning stages of shock. So here are the stages...

Shock –shock is a numb, distancing feeling that engulfs the parent when bad news is being delivered. Parents often report that they didn’t hear a word the doctor said or that they didn’t understand what the diagnosis meant.

Disbelief – During this stage, parents do not believe the diagnosis given for their child.

Denial – Parents may refuse to even consider that their child has a disability. During this stage, they may “doctor shop” for another professional who will recant the original diagnosis. Professionals become frustrated during this stage. Often “students” of EI spec. ed programs want to know how to hurry the parent along through this stage. The only approach that works best is to listen to the parent, accept their emotions, validate them, and be available for support when the parents conclude that their child does indeed have a disability.

Anger – As denial breaks down and the child’s condition becomes more real and apparent, parents begin to experience angry feelings. It is helpful for the parents to recognize anger as a potentially positive sign that the parents have begun to accept the child’s condition.

Bargaining – The parent makes a mental wager with a higher power and/or decides that dedication to a task or work will somehow alleviate their child’s condition or negate it altogether. The parent becomes very busy during this stage and this time leaves little interactions with personnel.

Depression – Parents will make statements like what’s the use? Why even bother to come to the center anymore – nothing is going to change. Part of what causes the depression is that the parents have moved through some parts of the previous stages and are now confronted with the child’ s disability for the rest of their lives, and they may be worried about what will happen to their child after they die.

Acceptance – The stage of acceptance is often misunderstood by professionals and parents alike. Acceptance means that the parent can look past the disability and accept the child as the child is. It does not mean that the parent would not change the situation if it were possible but rather that the parents can envision a life for themselves and their child, in spite of the disability.

These are not pretty things to experience at all. But at some point in every one's life you do have to deal with the unfortunate instance of losing a loved one or going through some awful tragedy and in some way shape or form you experience these stages of grief. Some more intense then others. Certainly it is no one's place to be as presumptuous as to tell you that they know what you are going through.

What's interesting is that some people are naive enough to tell me that they feel my pain or know what I am going through. To be honest even other parents of special needs kids may have a little more of a clue but every one's family is different and every one's circumstances are different. So when people tell me that they are going through my agony with me that they feel my pain, "maybe not to my extent but close enough," I have two words for ya... FUCK YOU!!!!
Oh yes I did...
When such a stupid comment is thrown my way it completely invalidates every piece of my being. How could someone possibly even come close, even feel a thumb nail of what I am going through. HOW, HOW, HOW.... Tell me I would like to know???? No one and I mean NO ONE can possibly feel or even come close to feeling what I feel. That includes, friends, grandparents, siblings, therapists, doctors, nurses, etc... Yeah sure, hurt maybe, sad maybe, helpless maybe... But not what I'm feeling no way. I am even going to go as far as to say that Scott doesn't go through what I go through every single day. He definitely comes to a close second, but its not the same. Only now can I say that because I now know what it feels like to leave the house for half a day. Only now do I know because I am working on Sundays.

Did you know that EVERY single time I hear my child take a breath I constantly feel like I am being stabbed in the chest because he sounds like he's gargling and breathing through a straw?
Did you know that every time that stupid suction machine goes off (at least 4-5 times an hour) my son gets so scared and upset that it just completely makes my heart bleed still? The guilt is overwhelming.
Did you know that every time I have to pick up the phone at least twice a month to call Sam's medical equipment company I pray and compromise my limbs, sight, and hearing to make sure that they don't tell me that the warehouse is out of feeding bags or his very special kind of formula so god forbid I can't feed my son.
Did you know that every time I see a child running, playing or eating on TV or in the present it takes my breath away in absolute horror because my son may never be able to enjoy any of those things?
Did you know that every time I take a bite of food or a sip of water I feel so overwhelmingly guilty that my son can't endure the same benefits from oral nutrition that I often thought I should get a feeding tube and stop eating all together because if he can't eat then why should I?
Did you know that every time a therapist has to cancel on us my heart completely breaks in half because its just one less chance that Sam has to function normally?
Did you know that when Sam is having trouble sleeping I stand over his crib to make sure he is not going into respiratory distress and pray that we don't have to go to the hospital?
Did you know that every time I have to change, bathe, and dress Sam I pray that his tube doesn't pop out and we have to go to the hospital?
Did you know that almost on a daily basis I have to fight with either my nursing agency, nurses, therapists, insurance company, doctors etc... to ensure that Sam gets all of his needs met?
Did you know when I went to the mall to go holiday shopping I cried the entire time I was there because all I saw were moms running after their kids in the mall waiting on line to take pictures with Santa Claus?
Did you know that I never have a minute of privacy in my own home because we always have nurses, a housekeeper, visitors, therapists, etc..?
Did you know that my husband and I can't even have sex without someone else knowing what we are doing because there are always people in my house and the walls are very thin?
Did you know that my husband and I can't even have a fight like normal couples without the rest of the world knowing because there are always people in my house?
Did you know that when I am in a pissy mood I have to have 50 people ask me what's wrong or get mad at me because I am not filled with shits and giggles 24/7?
Did you know that every time I see a therapist, doctor, or nurse my stomach is in knots because at some point during their visit they say at least one negative thing about my son? Not in a bad way, most of the time they don't even realize but it bites me in the ass every single time!
Did you know that at the beginning and at the end of the day instead of loving and enjoying my baby I have to have a full on wrestling match with him to make sure he gets 3 nebulizer treatments so that he doesn't die?

These are just a few small things that I go through on a daily basis. So the next time you decide to tell me you are going through what I am going through or you feel my pain or you have it tough too, try stabbing yourself in the chest about a thousand times pour acid all over the wound and then maybe, just maybe can I accept that you understand a little more then a hang nail of what I am going through.

Monday, December 10, 2007

Saturday, December 8, 2007

Sam and Ramon

During Sam's sessions with Ramon Cuevas our pediatrician Dr. Koplow came to visit and video tape some of the session. This all took place on Thanksgiving morning. If you click the link below you can see a small portion of what CME consists of. Sam has been doing very well since his sessions with Ramon. Also a special thanks to Sam's PT Yoni, who really put a lot of effort into making sure Sam got in to see Ramon. Sam really enjoyed his CME sessions. Ramon was incredibly gentle, kind and engaging. Sam just loved it!




http://www.vidtest.com/view_video.php?viewkey=cf995530ea53652ddf8f&page=1&viewtype=&category=mr

Friday, November 30, 2007

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....

Thursday, November 29, 2007

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...

Wednesday, November 28, 2007

Saturday, November 24, 2007

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!

Wednesday, November 21, 2007

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.

Friday, November 16, 2007

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...

Friday, November 9, 2007

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...

Wednesday, November 7, 2007

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.

Thursday, November 1, 2007

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...

Wednesday, October 31, 2007

Happy Halloween

Sam is on the mend thank g-d... Everything has been quiet for the most part this week. Sam is back on his usual therapy regimen. He is more playful and much happier. Thanks for your thoughts and prayers they work.

Tuesday, October 23, 2007

Daddy's Week Off And Other Things...


OK, so Scott was supposed to write all about his fabulous week at home with Sam and I. But as I am sure you all know there is never a dull moment here so he has not had a second to write. We had a really great week last week being all together. We brought Sam to the zoo and the aquarium, we had music therapy, played and had a lot of fun. It really was so nice having Scott home with us. I know how difficult it is for him to leave us every morning. Scott so badly wants to be a part of Sam's daily activities so it was nice for him to have the opportunity last week.

But now its this week and all hell broke loose. Just when you think you are in the clear and Sam is no longer in any danger of mega crisis you get slapped in the face hard with some very close calls. It all started Tuesday night at about 9:30pm. Sam was sleeping and literally woke up crying a cry I have never heard before. It was this awful raspy breathless cry that makes you want to gasp for air yourself. And his chest... His chest was totally convulsing. So we immediately gave him a double nebulizer treatment and he began breathing close to normal. But four hours later the same thing happened. Then the intervals between nebulizer treatments became smaller and smaller. We obviously took Sam straight to his pulmonologist the next morning. The doctor was on the fence about admitting us to the hospital but we decided to play the wait and see game with precautions of mega medication and breathing treatments. Well, pretty much as soon as we got home things started to spiral down hill fast. We thought that if we gave Sam a breathing treatment we would be able to take him to the ER ourselves. I contemplated calling 911 because if they saw Sam in enough distress they would have taken us to a really yucky hospital instead of the one his doctors are at. So after his breathing treatment he seemed OK enough to make it to our hospital. BIG, BIG, BIG MISTAKE!!! If you get anything out of this blog please get this. If your child is having some sort of respiratory distress call 911. DO NOT take your baby to the hospital yourself. It is just not safe. Once we got to the hospital Sam was in a really bad place. We pulled up in front of the ER I grabbed Sam and ran straight into the ER screaming my baby is in respiratory distress. I basically threw Sam at the attending and collapsed crying. This is the first time I really lost control. The ER staff worked so quickly and calmly Sam was fine within seconds. But we were not out of the woods. He continued to have these crazy distressing episodes for a few more hours. After his meds kicked in he started doing much better. We are home now but Sam is still pretty sick. Stable but sick and miserable. Scott and I basically have not slept since Tuesday night. Sam has some serious lung issues that need to be addressed within the next few weeks after his illness clears up. We will keep everyone posted when we know more. But for now if anyone comes to our home we need to be on super OCD mode about cleanliness and illness. So our rules are the following. Shoes off the second you come into my house, hands washed, if you even think you have a cold stay home, if you think you were near someone with a cold stay home. We do not want your germs here. All therapists leave your toys in the car. Only use our toys and books, gloves, equipment etc... Sam's lungs cannot handle any kind of irritation so no perfume either. We need to be as careful as possible. Thanks for all of your support.

Friday, October 19, 2007

TGIF

I know its a little late for this but the day has been busy. So movie buffs get ready... Its time to find out who the real saps are. What is the best tear jerker movie ever made and why???

Tuesday, October 16, 2007

Thank You !

This entry is long over due. I am dedicating this entry to all of our friends and family. Scott and I feel truly blessed to have such supportive family and friends. We certainly could not do what we do everyday if it wasn't for all of you. Just knowing that we are in every one's thoughts and prayers helps us to lift our chins and get through another day. So many of you have demonstrated such tremendous acts of kindness and we are humbled by all of them. We definitely feel loved by all of you.
We appreciate that no one has ever given up on us. When Sam was first born I was in a very dark place. I wanted to take my child and hide in a closet some where. I didn't want to see anyone and certainly did not want to talk to anyone. And those of you that I did reach out to came running to me. And those of you I didn't stood back and waited patiently for the word. Sometimes just standing back and being patient takes more effort than actually doing something. I acknowledged that.
Some days I am just so positive and some days I am so negative and some days I am in between. On the very negative days I pray that god gives me the strength to get through those moments. And then a tremendous gesture from one of you let's us know that we are not alone. Sunday I was having a little bit of a down day. Scott's parents came over and brought lunch from my favorite place. I worked at this restaurant through high school and College. When David (the owner) found out that the food was for us he insisted that he treat because he knew how hard it would be for Scott and I to go there. This act of kindness touched us so deeply. It let's us know we are not alone. It reminds us that no matter how hard our struggles are you all are holding our hands through each and every day. The love that you all have for us is so incredible it helps carry us through each moment with hope and with out fear. So on behalf of Scott, Sam and myself we say thank you all so very much!!!

Friday, October 12, 2007

TGIF

If you were stuck on a deserted island and you could only have 5 CDs with you (pretend there's no such thing as iPods) which albums would they be? Remember these are those timeless albums that you can listen to over and over again...

Tuesday, October 9, 2007

Help Sam!

Please take 10 minutes out of your day to help my son Sam and other children like Sam. This is very important. Most children with special needs do not get the services they need because of a lack of funding. I am not asking for money. I am just asking you all to write letters. The directions are below. Its very easy. Please help Sam!

Here is a sample letter for you to pass along.

Email: contact@livingwithcerebralpalsyproject.org
Please send letters to:Living with Cerebral Palsy Project
c/o Alicia Khlass (please include my name on the envelope)
6093 Sunset BLVD #132
Hollywood, CA 90028
Please contact Alicia at (323) 962-7405.Please address the letters to the following:
US Senate ~ US Committee on Health ~ Senator Edward Kennedy, Chairman
ABC ~ 2020 & Good Morning America with Diane Sawyer
Oprah ~ Oprah Winfrey
NBC ~ Dateline NBC & The Today Show with Ann Curry
CNN ~ Dr. Sanjay Gupta & Larry King
Dr. Phil
Montel Williams
Maury Povich
Media Organization

Form Letter Here:
Dear (type in each name listed above 9 letters.)I'm writing on behalf of ( name of the child or all children), who (has/have) Cerebral Palsy. I support the Living with Cerebral Palsy Project! Please tell her story and the stories of the other children and their families living with Cerebral Palsy everyday!I support increased CP funding from Congress for the CDC CP surveillance system, research for Cerebral Palsy, education for the public, continuing education for doctors and medical professionals, more therapy equipment, prenatal care & education and early intervention services for Cerebral Palsy.(Please add your personal sentences here, I got involved because..............) (Write anything additional that you would like here..) Did you know that more than 800,000 American children & adults have Cerebral Palsy right now? Cerebral Palsy not only affects the infant/child/adult, but it affects their family, friends, and our entire community. There is no cure for Cerebral Palsy and it symptoms are different in every child. Did you know that there are many children out there with symptoms, but they may go undiagnosed for years? They may not receive Early Intervention services that are crucial which can help to minimize their disability. Early intervention is the key to success. It is the most effective way for a child to overcome developmental disabilities and/or for them to learn new ways to adapt and succeed with everyday tasks. Please let their voices let their voices be heard!!
Sincerely,Your name
Your Address & phone number

You can find all the information about our project by clicking on this link:http://www.cafemom.com/group/7064/boards/read.php?post_id=1057011

Friday, October 5, 2007

TGIF

Any movie critics out there??? What is your favorite war flick and why??? Bring it on!

Wednesday, October 3, 2007

Scott's Pen

It took Bush six years to veto his first bill, when he blocked expanded federal research using embryonic stem cells last summer. In May, he vetoed a spending bill that would have required troop withdrawals from Iraq. In June, he vetoed another bill to ease restraints on federally funded stem cell research. Odds are that Hillary and Rudy will be running against each other. I know that everyone votes for what is important to them and I will be doing the same. I am a liberal republican which is why I like Rudy. With that said, he has been pandering to the conservative right of which stem cell research is a non-starter. I had a colleague at my former employer mention that had the US been funding embryonic stem cell research he may have been able to walk by now. With that said, when going to the polls, keep in mind what you want but also know what you will never get. In my opinion while we have conservative evangelical mvmnt controlling the republican party, you may get lower taxes, better defense etc but your friend's son and others that you know or may come in contact with may never walk, eat sit up etc. while you may have a few extra bucks in your pocket.Scott

Tuesday, October 2, 2007

Music Time




Sam LOVES music. So last Friday I arranged for Sam's favorite musician to come and do some music therapy with him. He was so intrigued with the guitar. He literally sat for about 45 minutes examining how Kathy's fingers moved up and down the strings. It was really a very special session because Kathy was one of the musicians at Sam's birthday party and she also sang to Sam while he was in the hospital as an infant. We had a lot of fun and we can't wait to do it again.


Friday, September 28, 2007

TGIF

Ok, I am really not as miserable as I may sound this is really my only outlet so it all compounds here. Here is a little bit of a more up beat participatory entry. My good friend and supporter "Joe The Minister" has an awesome blog. I can't help but to copy a little of it. Every friday he started a little trend where he asks his friends a question. Here is mine...
What is the best 1/2 hour sit com ever made and why do you think so???

Thursday, September 27, 2007

Update

I haven't really been able to write much in a while. Things are always quite hectic around here. Sometimes just trying to balance my own needs, Scott's needs, our home, and of course Sam, can get a bit crazy. So when I have to prioritize, the Blog doesn't really take a front seat. I apologize if I just start writing about how frustrated I am without letting everyone know what positives are going on as well. But as my late Grandma Nettie use to say "If you don't like it, don't eat it."

Sam is an amazing baby. He is deeply intuitive and incredibly strong. Sam is also very intelligent. He is playing ball rolling it back and forth, in the best way that he can. He says "go" better and better everyday given a "ready... set..." cue. He is socially smiling now very easily and he rolls to me for comfort when he doesn't want to be annoyed by someone else (Grandpa Dave). My cousin Oren is visiting with us from Israel and we took Sam to the Aquarium yesterday. Sam was completely enamoured with the sharks and the fish in the tanks. But he really showed a special interest in the sharks. In my professional opinion this is a clear sign of cognitive ability. Unfortunately Sam's physical ability is really delayed and it impedes on what he needs to learn and explore cognitively. Which means that I have to assist him with everything. I know, I know... he will get there. Well no one really knows that for sure. But what I do know is that if people keep telling me "oh don't worry Sam will surprise you," or " he will be fine," I am going to go postal. It is so unbelievably presumptuous for anyone to tell me that. Besides if I listened to all of the know it alls then what am I supposed to do sit around with my thumb up my rear and wait for it to happen. No! We have to keep doing what we are doing.
I will post more pictures soon. My camera has been kind of out of commission but now its working again so pictures will be coming around soon.

Tuesday, September 25, 2007

Roller Coaster

My life is such a roller coaster ride I feel bipolar. How much can I bare. Sam's care is so incredibly high maintenance. We went back to the feeding and swallowing clinic today. The visit wasn't bad but it wasn't that encouraging either. Nothing is that encouraging really. There is just too much. Sam is swallowing yes, but not often. Half the time he doesn't even realize there is something in his mouth that needs to be swallowed. But let's say he starts swallowing more, then there is chewing, and speaking, and language, and sitting, crawling, walking, potty training, etc... Things that most parents take for granted. My child is probably going to need a computer to speak for him and god only knows what other kind of assistive devices to cope with daily living. When people have babies you wonder is my child going to be a doctor, a lawyer, the next president... Who wonders if their child is ever going to speak, walk, swallow??? There is just too much to deal with. I know, I know, god only gives us what we can handle. Well if this was true this means that I must be better then the rest of the world and everyone else is incapable and incompetent. So I win, I get the prize, I am the strongest most capable person in existence. But I think I'd rather be stupid and happy then brilliant and miserable. Oh and the line god only gives us what we can handle is one of the absolute worst things anyone can say to a parent with a child with special needs.

Monday, September 10, 2007

Modified Barium Swallow Study


Today we took Sam up to St. Joseph's Hospital for a test to see if he is swallowing, how he is swallowing and if he is doing it safely. The days leading up to this have been full of tremendous anxiety. I didn't even want to talk about it with anyone because the thought of what the test might reveal made me sick. All of us that have been working with Sam have suspected that he was swallowing but just for definite confirmation we really had to do this study. This study also gave us an idea of how we should proceed as far as treatment goes. So the results revealed Sam is DEFINITELY without question swallowing, but he is aspirating and he is having a tough time using his tongue to bring material towards the back of his mouth to swallow. So in other words we still have a very long road ahead of us before we can even think about taking Sam off of his feeding tube. However, these results also make it more promising that he will eventually get off of it some day. When Sam was first born he did not display any evidence of swallowing at all, he didn't even have the reflex. But we now know that he does, so we were pleased with the results.


This whole process was very scary for me. Thank god I had a lot of support with me today. Sam's speech pathologist that has been working soooooo hard with Sam joined us and so did Sam's nurse. It helped a great deal to have both of them there. What also helped a great deal was the staff at St. Jo's. I have to say I was so incredibly impressed with how helpful the entire staff at that facility was. Everyone from the valet parkers to the speech pathologists that conducted the study. Everyone was beyond kind.


So now with the new knowledge that we learned today I have more energy to keep trucking and doing what we have to do to give Sam the best shot he has.
P.S. Thanks for the great picture Mary!


Wednesday, August 29, 2007

Welcome To Holland

In grad school our professors bombarded us with all kinds of readings, not just on theories and treatment plans, but with essays to try and help us understand the impact of what having a child with special needs means or at least empathize with the families that we would one day be working with. "Welcome To Holland" was one of those essays. Since I had Sam I have come into contact with many other families who have children with special needs and this same essay continues to cross my path. I have been reluctant to read it again because the certainty of it scares me. To be honest it scared me when we were first presented with it in grad school and the thought of having my own children wasn't even in my mind yet. But now as I read it again I am not so scared. The essay came across my path one more time just recently and was sent to me by a very special mom.

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, August 22, 2007

Forgery

Believe it or not sometimes I just get a little sick of writing about how hard my life is and how angry I am so here is something a little bit different. If you all really love me then thrill me and reply. I was just reading my friend Joe's Blog and it was such a fun post that I just had to copy it. So here it goes, if you could choose one song to perform karaoke style what would it be?

Mine is and probably will always be Cracklin' Rosie. Why? I have no idea. Maybe because I have no voice and you can't do that much damage to a Neil Diamond song. Or maybe because it is just a lot of fun to sing about a guy and his inflatable love doll. Who knows??? So what would you sing???

Monday, August 20, 2007

Happy Anniversary



Scott and I celebrated our 4th wedding anniversary. It was actually on Thursday the 16th but we went out to dinner on the 17th. We went to the River View Cafe in DUMBO. For those of you that live in the city I highly recommend crossing to the dark side over the Brooklyn bridge and experiencing this really amazing and beautiful restaurant. The wait staff was friendly, attentive and unpretentious. The food was fabulous and so was the wine selection. There is a dress code, but it made the evening that much more special. Scott and I have not felt comfortable enough to leave Sam to go anywhere and enjoy ourselves. So this was a first in a year. Our last anniversary we spent in the hospital. Its crazy to look back and see the difference a year can make. The evening was a lot of fun, much needed and well deserved. Happy Anniversary Scooter, I love you!!!

Tuesday, August 14, 2007

Welcome To My World...










The phrase once you have children its not about you anymore has taken on a very different meaning in this household. For the last week and a half Sam has not been himself at all. He has been crying non stop and has refused to do any kind of interactive or therapeutic activity. To say the least it has been really tough emotionally and physically for the both of us. Sam needs a lot more stimulation and motivation then most other children for everyday activities. Life is just too difficult for him. It would be much easier for Sam if I allowed him to just lay around and do nothing. I try very hard not to do that, but sometimes if he is really out of sorts you kind of just have to let him be. Kids can get burnt out just like adults. It is scary though to see your baby regressing a little.


Today he did much better thank god. He was much more interactive. He sat up without support for the first time in the last week. It is so frustrating when you work so hard everyday with your baby and then you see regression. Its like finding out there is something wrong with him for the first time all over again. OK so its obvious that Scott and I do a lot with Sam. A lot of credit has to go to his therapists, nurses and grandparents too. There are a ton of demands placed on Sam and in turn there are a TON of demands placed on me as well.


In previous postings I wrote about Sam's intensive therapy plan, but what I didn't write about was the management plan that I am expected to carry over every single day. It is ridiculous. So in between dealing with nursing, insurance, ordering medical supplies, managing his appointments, running to the hospital for emergencies (we were just there again yesterday), taking Sam to weekly doctor appointments all over the tri state area, washing him, changing him, taking care of his feedings, venting his stomach tube, suctioning his mouth so he can breath, giving medications, and doing breathing treatments, his therapists would also like me to do the following: for swallowing I have to stimulate a swallow with a cold spoon 20 trails 3 times a day, do oral motor exercises and encourage Sam to put oral friendly objects into his mouth, for special instruction I have to make Sam an experience book using pictures of all the people in his life, have him interact and experience going through kitchen cabinets and drawers, work on simple concepts like waving hi and bye, open and close, and up and down, read stories, etc... for occupational therapy and physical therapy I have to put Sam in his stander 3 times a day for 30 minute intervals, have him reach while supporting him in a quadruped position, do sit ups, pull objects in and out of containers, do exercises on his therapy ball, and have him experience sitting unsupported as much as possible.


Yeah OK I'm getting right on it. I'm sorry would you like fries with that too? And then some of the people that come into my home say, "Wow, you look really tired" or "You look way too skinny." Well no fooling Freddy would you be able to eat and rest if you had to do this much in a day. The one thing to remember is that its not about me, its all about Sam. As long as he is able to tolerate everything that he has to do in a day then it gets done. God bless all of Sam's therapists, nurses, doctors, friends and family. Sam is benefiting so much from all of this. I however look and feel like I aged 20 years, but who cares. Giving Sam the best chance he has in life is worth anything and everything.



Wednesday, August 8, 2007

Tuesday, August 7, 2007

Brooklyn Top Ten




"Just when you think your out it pulls you back in." Quote from Grandma Lorraine. Its crazy where life takes you and how it takes you. Scott and I thought for sure that at this point in our lives we would be living in a nice house in Livingston, NJ probably with my own practice, blah, blah, blah... Then of course plans changed and we had no choice but to move to Brooklyn. Now, there are certain parts of Brooklyn that are really cool, but we are not in one of those parts. We live in Bensonhurst, which is a culture of its own. We did learn how to enjoy our time here and make the best out of it. So here is our top 10 reasons of why we love living in Bensonhurst.

10. Our scenic view is of our neighbor's bloomers hanging on the clothes line.

9. We learned that the f--- word can be used as a noun, verb, adjective, and a preposition.

8. I can see all of my neighbors on the entire block in their yards at the same time by just looking out my bedroom window.

7. There are real life mafia dramas going on in the back of my house. Goodbye Sopranos hello Cropsey Ave.

6. Fat male butt crack is in style in my neighborhood.

5. Nathan's (the real Nathan's) is 5 minutes from my house, and you know we go there for breakfast, lunch, and dinner.

4. Everyone's car is sparkling clean. If not you'd probably get shot.

3. You have the best of China, Italy, and Russia without having to leave your block.

2. No one speaks English yet everyone gets along.

1. Scott can go outside to throw the garbabge out in nothing but his tighty whities and a t-shirt, spark up a conversation with our neighbor in front of all Cropsey Ave. and not think twice about it and this is totally acceptable.

Tuesday, July 31, 2007

That Was Then, This Is Now...

7-31-06

7-31-07
It is so hard to believe that our baby is already a whole year older. So much has happened in the past year that its hard to believe it has only been one year. There is a huge difference between then and now. We can only pray that Sam continues to make gains on a daily basis so that he can enjoy this life just as much as everyone else. I think the key to help make this next year of Sam's life a happy one is just accepting everything the way it is now. Of course we will continue to fight to give Sam the best chance he has in life. But as Sam gets older and smarter he is going to see that he is different from other children. It is important to me that I accept what his differences are (and I do) whole heartedly and that if he sees that I am OK with is differences then he will be OK too. I mean what is happiness anyway??? In my opinion happiness is accepting ourselves for what we are and who we are no matter what our limitations are. Our goal for the next year is to let Sam know that he is a super hero no matter what challenges he has in store. If Sam can eventually swallow, talk, walk, dance, sing that would be great, but if he can't do those things then that will be fine too. As long as our baby is happy, healthy, and smiling then everything is perfect and so is he. Happy Birthday to the most beautiful and perfect baby boy!!!

Monday, July 30, 2007

Who Had More Fun?

For those of you that think you know Scott, I bet you didn't know this. Did you know that Scott's favorite two things in the world besides chicken parm and Sam are hippie folk singers and Elmo? Scott had so much fun at the party that he did not stop singing Elmo's world for the next 24 hours. If I didn't appreciate the love my husband has for our baby then I might have thrown him out the window already. Scott is truly the best Daddy in the world and if it wasn't for him then I might not have had the strength to throw such a big party for Sam. People often ask me how I keep going everyday and do what I do with a smile on my face. My answer is always because I have Scott and Sam.

Sam's Birthday!!!




We had Sam's birthday party this past Saturday. Thank god Sam did really well. He truly enjoyed himself and it did not rain!!! We had all sorts of fun things going on for him at his party. Sam got to see all of his friends and family. We also had some old visitors come to sing to Sam. While Sam was in the hospital these two wonderful women use to come and do music therapy with Sam. This is how I realized that Sam might not be deaf after all. We were told initially that Sam was completely deaf in his left ear and had a moderate to severe hearing loss in his right ear. But when these women sang to him he lit up like a Fourth of July Sky. So I hunted these ladies down and got them to sing for Sam's birthday. He loved it. We also had Elmo come to play as well. If you haven't noticed Sam loves Elmo. Scott and I wanted to thank all of the grandparents for helping to make such a beautiful party for Sam and we also wanted to thank all of our friends and family for coming to celebrate with us as well.

Wednesday, July 18, 2007

Coma

Last night I had a major anxiety attack and basically didn't sleep all night. Why? That story for another entry. Anyway at around 2 am I was watching an HBO documentary called "Coma." It brought a lot of very deep dark feelings back of when we were in the NICU with Sam. If you haven't seen the program (and I call it program and not show because watching the fate of 4 individuals struggle with rehab after severe traumatic brain injury shouldn't be considered entertainment) its intense to say the least and very, very sad. What hit me the hardest was how the parents of the individuals were told about the fate of their kids. Now the people that were injured seemed to be 20-30 something. Their whole lives pretty much would never be the same and all of their loved ones around them had to suffer the trauma of basically losing the person they loved and excepting someone else in their place. Certainly someone that they love no different but a completely different person. These young adults would never talk the same, walk the same, some lost their hearing, some lost their ability to eat, some lost their eyesight, and some lost all of the above. There were several points in the program where the families would sit in a conference room with a team of health professionals who were basically telling the families the fate of their loved one. What pissed me off was the overall expression of "oh well." And I got that sense by the body language and the actions of the doctors and therapists in the meeting. One total waste of a person sat there playing with an empty water bottle, others were eating and drinking coffee, and someone else was chewing gum. Now until you walked in my shoes or the shoes of anyone who sat in a meeting with a team of doctors telling you some awful news, you know how incredibly disgusting that is. This struck such a cord because I remember all too well at Columbia the very same situation. Most of the people in my meeting (and we had many) had coffee or they were trying to sneak pieces of food in their mouths, while the neurologist told me that my little gorgeous precious Sammy probably had Leigh's Disease. If you don't know what that is, its a very rare degenerative metabolic disease where children don't usually live past four. And the years leading up to four are dreadful. Back then I was weak and naive. I accepted what ever behavior the doctors and residents gave along with their pseudo diagnoses. Now things are very different. I hit a tremendous wall of tolerance months ago and I refuse to take bologna from anyone including a physician. But I do have to say Sam's team of doctors presently working with us are nothing but respectful and just lovely. They all really go out of their way to assist in any way they can. And if they didn't then they wouldn't be on our team, would they. My point in this entry of reflection is if you are a health professional think twice before being so casual when sitting in a meeting with a family when bad news or any new is presented. And if you happen to be on the unfortunate situation of being on the receiving end of one of these meetings and someone is drinking their Starbucks say this "Unless you want me to order a pizza and a keg of beer on your death bed get rid of the coffee and show some respect."

Friday, July 13, 2007

Cuevas MEDEK Exercises

Sam in his stander

Sam doing CME

Sam just started receiving a new therapy called Cuevas MEDEK Exercises (CME). He is doing really well with it so far. There are a lot of parents and therapists that swear by this technique for even the most severe cases of movement disorders. These are some informative sites for CME the testimonials are very encouraging. Sam also started with is stander today. He did fairly well with it considering it was his first time in it. I've added some pictures so you all can see.


Thursday, July 12, 2007

Appointments, Appointments, Appointments...


Wednesday we had an appointment with Sam's ENT. During the examination Sam repeatedly grabbed the tongue depressor and the pen light and refused to let our doctor do what he had to do. My son was so incredibly quick with his hands and tight with his grasp he reminded me of Bruce Lee. This might not sound that exciting to most people, but you have to understand, my child cannot hold objects tightly at all especially sitting up right. Sam also sat up for a good amount of time with very little redirection for balance 3 different times during the day. Thursday we took him all the way to the Bronx for OMT clinic for movement treatment, where he did not cry at all. Then when we got back home Sam had 5 therapy sessions in which he did wonderful with and barely complained at all. One of the sessions was with our new therapist who does a new technique called M.E.D.E.K. This can be a very scary thing for parents to watch because the therapists do a bit of a more invasive technique versus conventional physical therapists. Sam loved it! Even with such a busy day Sam was still able to smile at the end of it.



Saturday, July 7, 2007

What is normal?



What is normal anyway??? According to any standard dictionary the word normal means
conforming to the standard or the common type; usual; not abnormal; regular; natural.
Serving to establish a standard. I think getting to the level of acceptance when you are faced with issues such as ours is establishing your own set of norms. Many people in our lives including my husband and I often say phrases such as "Well, if this was normal..." or "If Sam was a normal child...." This is our normal. We don't know any different and neither does Sam. Normal to us is Sam's feeding tube, suctioning machine, floppy body, crooked smile, open mouth posture... Sam's milestones and successes may be different from other children's, but its 100% normal for us. We relish in the fact that Sam is reaching and sitting even if its for very small amount of time. Every tiny bit of progress is a miracle in our eyes. Yesterday Sam sat unassisted while I sang the entire song of "Down on Grandpa's Farm" using four different animals. Today while Sam was in the exersaucer he started to get fussy so I said "Tell mama out" and sure enough he said "ou" while reaching up.

Thursday, July 5, 2007

Yesterday





Yesterday Sam stood with very little support with one of his therapists. He was always able to bare weight on his legs but never for this long and certainly not with this little support. Sam also was never able to hold his upper body up like you see in the picture. We had another small miracle last night as well. Sam said "more" perfectly while we were playing peek-a-boo. He has always voiced a pseudo more but was not able to say the "m" sound. But he did last night, YEAH!

Wednesday, July 4, 2007

Slide Show

Sam's very fabulous pediatrician created a beautiful slide show of Sam on his web site. Click the link below if you are interested in seeing it. Happy Fourth of July.


http://www.drmdk.com/html/lesh.html

Tuesday, July 3, 2007

Luck

I haven't posted in a while because Sam, Scott and I were all sick for the last few days. We are all fine now, just a cold virusy thing that lasted for only a few days. Anyway, a lot of people have been giving us credit for working so hard to find Sam the best team of health care professionals. We honestly cannot take much of the credit. Believe it or not through prayer and a bit of luck most of Sam's health care providers literally fell into our laps. While Sam was still in the hospital and Scott and I were contemplating moving to Brooklyn, my mother was in the midst of selling her house in NJ. My mother's real estate agent is the wife of a great pediatrician, Dr. Koplow, in Brooklyn. She insisted my mom call him and talk to him about Sam. To make a long story short we moved to Brooklyn and Dr. Koplow is Sam's pediatrician. He referred us to some of Sam's specialists who are also fantastic. On a side note there are a lot of friends and visitors out there that ask me a lot of developmental questions about their children. I would be happy to help in anyway I could but to be honest I get a lot of information from Dr. Koplow's website. Our pediatrician has an amazing informative website with links that could guide a parent to a wealth of information from breastfeeding to vaccinations to autism to bone marrow transplants. The website has a lot of video commentary from some of the leading researchers working on the hottest topics in children's health and development.
www.drmdk.com

Sam's Therapy Plan

A lot of people have been asking me what we do with Sam and why. Some people even have said that all that we are doing with Sam may be "too much." Kind of like we are groping at straws. Well maybe at the beginning we were. We actually had a healer come and work on Sam. Don't ask, it was what we thought was appropriate at the time. You can't really blame a parent for putting faith into something that they think would help there child. Wouldn't you do anything you could to help your child no matter what the issues are? But now after months of collaboration with doctors, therapists, other families, my former professors, etc... I am pretty sure we have a great therapy plan with good rationales to back up what we are doing. Based on recent studies it was found that with an enormous amount of therapy/ intervention a person's brain (child and adult) can rewire itself to compensate for certain deficits caused by brain damage. Some of the studies even specified that 70-100 hours of intervention to the specific area affected can rehabilitate the issue at hand to almost 100% functionality. Of course there are certain variables to this but never the less the point is that intervention is key. The earlier one receives intervention the greater the chance of recovery. So what do we do with Sam? Sam receives, through early intervention, 4 times a week each of feeding/ swallow therapy, occupational therapy, physical therapy, and special instruction for 30 minutes a session. That is a total of 16 sessions a week. In addition, we privately pay a cranio-saccral therapists for a session with Sam once a week. We also take Sam to the osteopathic movement treatment center at St. Barnabas Children's Hospital once a week all the way up in the Bronx which is covered by medicaid. Furthermore, we take Sam to St. Joseph's feeding and swallowing clinic up in Patterson NJ where he is seen by a group of professionals that work with only feeding and swallow disorders. I know it seems like a lot and it is but its what has to be done. I look at it like a full time job. But the rewards are much bigger then any pay check I have ever received. I still have time to play with Sam and engage with him. But at the same time I try and carry over a lot of the activities that need to be done with him while we have mommy baby time. I remember when I was working as a therapist I would expect a lot out of the parents I worked with. Now I know how daunting it is to try and be your child's parent and a therapist on so many different levels. But you have to do what you can when you can. You can't just drop your child off with the therapist and say OK fix my child I'll be back in an hour. It doesn't work like that. Rehabilitation of any kind is a 24/7 job that everyone needs to participate in.

Thursday, June 28, 2007

St. Joseph's Feeding Clinic

Yesterday we took Sam to his 3rd visit to the feeding clinic. The doctor's and specialists were very pleased with Sam's progress. The neuro-developmental pediatrician felt that Sam required so much less suctioning which is a great sign. They also noted that Sam is much more vocal with the intent to communicate and he is moving a lot more as well. During trials where we had to help Sam facilitate a swallow he did well. He actually swallowed several times with stimulation. We still have a very, very, very, long way to go before we can even think about trying to give him food or liquids, but it is a good sign that he can be stimulated to swallow.

About St. Jo's...
St. Jo's is an excellent feeding and swallowing center for any child with feeding issues from texture sensitivity to situations as severe as Sam's. In my experience with feeding and swallowing disorders I have had a lot of families that went to St. Jo's and some loved it and some hated it. They are very set in their philosophy which I can understand may be a little scary for some parents that do not have a medical background. To my understanding they do not give up easily on even the most difficult situations. I think they are very knowledgeable and unpretentious. Anytime I have called with a question or concern my call has been returned that same day. I will add a link if anyone is interested in the program.
http://www.feedingcenter.org/

Tuesday, June 26, 2007

Words Speak Louder Then Actions


When I find that I'm in a funk I feel that it helps to look back on the past year and see all that we have accomplished, all that we have been through, all that we have suffered, and that we have SURVIVED! I try and look back and think what have we learned. What knowledge can we take with us to help with our next obstacle? Or, what can I use to help other families when I eventually start up my career again. It's funny, I look back and remember verbatim so many things that the doctors, nurses and therapists said to us while we were still in the hospital with Sam. For the most part, I have to say, I was and still am very impressed with the carefully thought out words that were used to explain to us that basically we were/ are in deep shit. But I remember when I was first going into labor the senior resident that was checking me out while I was in triage said, "You do know there is a good chance that something is going to be wrong with your baby?" At that time I did know that but no one was sure. But who says something like that to a women in labor. I felt like saying, "And what would you like me to do about that now jackass." It should be a requirment to have some course on bedside manner while these doctors are in medical school. What some medical professionals do not realize is that there words can impact an outcome just as much as there treatment. When I was working, families had told me stories where doctors and therapists basically said that there was no hope for their children. And many times this resulted in a kind of give up attitude on the parents part. Luckily in our case no one ever said NEVER. Even now when I ask Sam's specialists will he ever get off of his feeding tube. They look at me like I have three heads and say of course there's a great chance of that happening but it will take hard work. It is so grueling to wake up at 6am and begin the day doing therapy and only therapy with your child. Sometimes you just want to be the parent and have fun with your kid, but when professionals are telling you that all of this therapy is going to give Sam the best shot that he has in life, how can you do anything else. I know I need a lot of encouragment to do what I do everyday. It absolutely helps to have all of Sam's healthcare providers believe that he is going to do great things. Don't get me wrong, I don't care if they said he was doomed, I wold never give up on my child. But it certainly gives me an extra pop knowing that I am not the only one who believes in him.

Monday, June 25, 2007

Sam at The Pool


Its one thing to have a child with special needs, but it is quite another to have a child with special needs that has health compromises as well. Aside from the obvious heartache, the everyday enjoyment of life gets thrown out the window as well because you are basically stuck in the house all day long waiting for therapists, going to doctors.... I can't just throw Sam in the car seat and go because he chokes all the time on his own saliva. I need someone with me if I want to do anything out of the house with my child. This totally sucks because in my past life I was always out and about. I never considered myself a home body. I always had places to go and people to see. I was a mover and a shaker. Now I'm a sitter and a squatter. So Sunday morning I woke up with a ton of energy, kicked my husband out of bed and said, "We're going to N.J." We took Sam to see his girlfriend. Sam went swimming for the first time and loved it!!! His girlfriend loved Scott and was all over him. Sam does not like sharing his Daddy with anyone. Completely appropriate for an 11 month old Sam got jealous and kept hitting and pushing her away from his Daddy. I was very impressed. But most importantly Sam did not end up in the hospital or sick from this visit. We only ventured out with Sam for pleasure two other times. Both those experiences ended up with Sam being extremely ill, but not this time. Thank god for small miracles.

Saturday, June 23, 2007

Grandpa Band's Request



My father indirectly pushed me to start a blog more to help other parents of children with special needs rather then to inform friends and family of Sam's progress. I feel both are important. And certainly if our stories can help or inspire anyone else then the time and efforts put into all of this will be worth it. My dad thought it was necessary to post Sam's history, so for those of you who already know this sorry for the monotony.

Sam was born at 37 wks gestation at St. Lukes Roosevelt hospital via vaginal delivery weighing 6lbs 13 oz. Prior to his birth I was diagnosed with polyhydromnios at approx 35 wks gestation (too much amniotic fluid). I was in labor for 2 ½ days when I spiked a fever and the Drs induced me to speed up the process just in case there was an infection in the uterus. When Samuel was born he received an apgar score of 9.9 by a totally incompetent pediatrician. My Gyn noticed Sam had a floppy neck. Once they put Sam on me I noticed that only the right side of his face was moving. I stimulated him for a root but got nothing. I also noticed the he was very gurgly, had a cat like cry and was bubbling from his mouth and had no suck, no cough and no gag. I obviously freaked out but they told me I was being paranoid and sent me to the maternity unit with my baby. Where I continued to tell everyone he was presenting like a stroke patient as he had limited movement on the left side of his body as well. Finally they took him to the NICU. He was seen that evening by Steven Wolf (Ped Neuro). MRI done the next day showed nothing too significant. NICU tried to feed Sam by mouth which I told them would be a HUGE mistake because he wasn’t managing his secretions so of course they did it anyway and developed an Aspiration pnuemonia needed C-pap and antibiotic. Sam was fed via OG for the 2 weeks we remained at St. Lukes. We left St. Lukes because the Surgeon wanted to do a G-tube with a fundo. I wanted to discuss further, he didn’t have time to discuss so I told them no thank you and went to Columbia P for the 1 million dollar work up and second opinions for feeding tube placement. At Col he was fed via NGT. To sum up Sam has multi cranial nerve involvement CN 7-12. It seems to be left sided only??? So deaf in L ear, some hearing loss in R ear, paralyzed L Vocal Cord, L facial paralysis (improving). Sam has been seen by genetics, 4 ENTs, 3 neurologists, 3 opthamologists, 2 pulmonologists, 1 GI, 1 Surgeon, and 2 physiatrists. At Columbia Sam had another MRI which showed 3 bi-lateral lesions between the Pons, Medulla, basal ganglia (brainstem). So basically where CN 7-10 originate. Genetic work-ups came back normal including extra molecular studies that were done to closely look at malformations in the DNA. The neurologists all seem to agree that some ischemic event took place during pregnancy that caused a lack of O2 flow which disrupted the formation of deep nuclei in the brainstem. All of our Drs. Were guardedly optimistic that Sam would regain most function back since the brain is so plastic and we already began to see some slow but steady progress. Our GI (Joseph Levy) did not want Sam to get the fundo so he suggested do a G-J tube. The Sx would not do a G-J tube at Columbia so we had to transfer Sam to NYU were he had one placed by Dr. Nadler. Before we left Col they did an esophagram which showed severe reflux. He also asp the barium do to yet another incompetent Dr. who refused to heed my warning and Sam ended up with another Asp PNA and we had to stay at col for an extra 10 days where he was treated with more antiobiotic and Cpap. At Col Sam received PT, OT, and feeding tx. Use of non-nutritive items only. We eventually were able to elicit a suck with prompting (stroking tongue and palate). Since Sam has had his Sx he regressed a little do to the anesthesia and contracting RSV. Sam still has difficulty managing his secretions. During waking hrs he needs to be suctioned frequently. He is on continuous feeds of 33ccs per hr via the G-J tube. Sam has made some gains. The facial paralysis seems to be improving, can produce a suck when prompted, moves left side better, has a strong voice, & has increased neck strength.

I actually wrote this right after Sam came home from the hospital in October. My pediatrician thought it would be a good idea for me to type up a history and hand it to any new Dr. Sam might see so that I would not have to relive our experience over and over again. God bless that man!

Things are very different for Sam now then they were 7 months ago. We know that Sam's hearing is normal, he does not need as much suctioning, his vocal cord paresis probably resolved as he has very strong vocal quality, his face is more symetrical, and his movements are much stronger. We still have a huge road ahead of us. There is so much we still do not know. But what we can tell you is that Sam has the BEST team ever!!! We are very lucky that all of his care givers are so dedicated and competent this of course includes all of his therapists, nurses and doctors. So we are just going to keep on keeping on and do the best we can.