A Powerful Poem

I have been on the internet lately as we approach the countdown till Alec's MRI's. I came across this powerful poem that I am compelled to share with you, although it's speaking of a mother, it also goes for fathers:

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author Unknown

Enough said. I am confident my next post will reveal all good news. Alec has been really tired lately, but I was talking to Mark about it and we think he is just going through some brain repair. Mark was playing with him at the kitchen table and Alec told him he wanted to draw, he doesn't draw any shapes or anything we can make out clearly, but it is ART! He snapped some pictures. Alec still can't figure out if he wants to be a lefty or righty, he always seems to use both hands, see for yourself. In the photos he's holding his Poke 'mon cards as he's drawing. Such a good multitasker :-)
-Amy

Okay vision therapist worked out nicely, very impressed! He is alot better than his original therapist during the school year. Speaking of school year I can't believe how fast everything is sneaking up on us. MRI is right around the corner, kids need clothes for the fall, jackets etc.
Alec has been having his night frights again. If he would just sleep at night he wouldn't be so tired during the day. I'm gonna mention this on our next Dr.'s visit next week. We just don't know what to do. He is convinced someone is in his room to hurt him. Still working hard at trying to get him to walk. He is improving with his fine motor skills. When he draws he has smaller strokes than he used to. He has more control :) yay!! I was at a meeting last night at play fit stay fit and Mark said he sat for 2 hours drawing. The meeting or focus group they call it was good. We cried laughed and made some suggestions on how to possibly improve the program. Play Fit Stay Fit is his physical therapy he gets outside of school twice a week funded by the Lance Armstrong foundation. I suggested maybe doing a 10 min. cool down session; I know Alec really needs the one on one which is GREAT!! But he also needs to be brought into the group. There great there so it will be fun to see what they do in a few weeks, can't wait. Ray, one of the program directors donated to us a special needs stroller, it's light and convenient and unlike a wheelchair, it will fit in Marks trunk. And best of all it's light. Did I mention it's light, HAHA. My arms are so big from lifting Alec and his broken down wheelchair all the time, it will be a nice break. It's not something he could spend all day in though because it lacks the supporters he needs, but perfect for quick store run ins and stuff. Other than that just waiting for MRI's and actually to see if he is producing his cortisol yet. Okay gotta run.
-Amy

Summer school is off to a good start. His teacher is a doll, Ms. Dudah. He goes from 8:30 to 11:30. Then he comes home and get's his usual speech, OT, PT, and vision therapy. Not the same day. Some on the same day, sometimes only one service like speech, but luckily everything really fell into place. With the exception of his vision therapist, I don't know about this character. I haven't met him yet and our telephone conversations haven't given me that warm and fuzzy feeling. He planned on visiting Alec in school and Alec is suppose to receive all his services at home, as recommended at his IEP meeting AND documented in his IEP. Which leads me to believe he didn't do his homework on Alec.
The other give away, he failed to look at his paperwork is he wanted me to drop Alec off a 1/2 hour early at school once a week so he can service him. WHAT?? Okay had he actually read Alec's case he would clearly see Alec needs an aid, he can't walk, has a speech impairment. This guy doesn't know our son from a hole in the wall. Who is going to help him go to the bathroom. Not to mention what gives this guy the right to use the building before hours? Not to happy to say the least.
Yesterday we went to St. Charles for wheelchair clinic. YAY!!! Alec is going to get a wheelchair that suits his every need. The one he has now was meant to be temporary and he was 30 lbs lighter, did I mention 30 POUNDS lighter. I still believe he will walk someday, but the truth is he needs a real wheelchair. While working in school, going on trips. He needs addition lateral support, tilt. I am so excited.
We are working with Alec alot on his walking. Well mostly me, Mark is a wimp, LOL. No just kidding, he's not like me though, I push, and push Alec. The minute Alec tells Mark he's tired, Marks like okay and stops. We are going to be starting aqua aerobics soon, so excited. His PT said how great it is and I saw how well he did in the water in North Carolina. And best of all he loves it. He goes on the treadmill for about 5 min intervals. And various other things. We are still working in getting him familiar with his Dynavox, his communication device. He is getting use to it, but another thing to learn.
When I was dropping Alec off to school I noticed some construction going on outside of his elementary school. YAY, a ramp and new walkway. There use to be steps going into the school. Just a few and we did fine getting Alec up them. But the walkway I have to say was for the pits. It was weathered like anything else, but the cracked cement made Alec's wheelchair hault and he would jerk. My poor baby. But look at it now, WOW!!! Thanks Center Moriches for passing our budget to make these little things possible. And also to the staff and faculty for all they do to make our lives a little easier :0)
I don't know if I mentioned it before but they had replaced the doors in front of his school sometime in the winter wheelchair assessable. Alec's medical condition has really been a learning experience for everyone in our small little community. The best part is Alec is still with us to see how much he is loved.
I also attached some beach pictures, I love our beach :-)
Take care.
-Amy

Another beautiful day, Alec had a rough night. He's been hallucinating again. Sometimes he see's a man, sometimes tinkerbell, last night it was a bear. He got really scared and Mark couldn't convince him there was nothing there. He started crying and looked in the distance with fear in his eyes.

It's hard to know what to do; Do you talk to the vision he see's, which I've done before. I tell him okay tell tinkerbell she has to go now, and he does and then he's fine- sometimes. There is nothing there so I don't know if I'm doing the right thing by acknowledging there is something or just keep convincing him there is nothing. It almost seems having him say, you have to go now, works better than trying to convince him.

When I spoke to his PA about it, it was a tough call. He does have brain damage and we are not exactly sure what he can see; he's also at that age where you can have an imaginary friend. I actually use to hallucinate at his age, always at night also and would see animals, tigers and bears walking toward me. I remember it like it was yesterday and I was the same age. Tinkerbell we don't mind, but when he starts talking about a man is in the room and he is going to kill him, that scares us. He also gets reality and imagination crossed. When he plays with his light saber and drops it he thinks he cut himself. It doesn't happen all the time but on occasion.

We went to my cousins the other day and out of no where he started crying and asking, "Am I gonna die?" I don't know where that fear came from. We don't talk about anything in front of him. It's also not the first time he has had an episode like that. I suppose he does know that something is different with him. I asked him before if he feels different or the same and he responded the same. The good thing is that he is showing all emotions, which took a really long time after his last brain surgery. He laughs, cries, gets angry (Kevin thinks it's funny because he troughs a temper tantrum and rocks back and forth) and is a clown at times. He started doing raspberries out of know where; it's hysterical and he cracks up as he is doing it. He use to do this funny voice but he is getting bigger and it is harder for him to do it so now he does the raspberry thing. It's almost like he's rapping, LOL.

Well now to plan the day.

Take care.

-Amy

Happy 4th of July! YAY! Sunshine has finally made it's way across Long Island. We were out enjoying it yesterday, Alec was bike riding and playing basketball in his walker. He tired quickly, but enjoyed being outside. I even got on the teeter totter with him. A little nervous the swingset wouldn't hold me- but it did.

Kevin won 4th place yesterday at his track meet. This is his first year joining track and he is really enjoying it. Sean on the other hand is just enjoying exploring the great outdoors. He doesn't like to be kept inside. 24 hrs a day he says, (side, side.)

While we were enjoying our day yesterday; another brain tumor claimed an innocent life. A strong little man named Mykah earned his wings after he lost his short battle- just a 4 month battle. This was a friend of my sisters whose 9 year old nephew in Oregon was diagnosed just months ago. Surgery was unsuccessful, they were unable to remove the entire tumor and they started radiation and chemo. The tumor was unresponsive, and he lost his battle.

I can't imagine what Mykah's parents must be going through this holiday weekend; listening to all the life around them and fireworks going off, parties, laughter, and just life. They are planning a funeral for there 9 year old son at the same time keeping a chin up for his younger brother. How do you do that? My heart aches for them.

Pray for them.

-Amy

Clinic visit was quick, really quick. The longest part was the drive, it took us and hour and a half to get there when usually it's an hour to the minute. In any case visit went, ahh okay. We met with Dr. Atlas, I was bummed to see his lymphocytes only at .9 normal range is 2.5- 3.5. His over all count was higher in his last blood draw, but still down. And Quest LOST his mitogen response blood. What idiots, they do this all the time, I mean scary who is behind the scenes sometimes.
We were advised to keep him on his Acyclovir and Bactrim for this reason. Dr. Atlas wants to retest his cholesterol, lymphocytes next month. I also want to have another cr-p done. He kind of took that finding with a grain of salt, if there is inflammation anywhere his cr-p will be elevated. Our concern is there should be no inflammation. But he was probably just getting at it doesn't necessarily mean tumor. Which is good, we like that thinking but still get nervous.
Alec's MRI are scheduled for the beginning of August, we are having them done without sleepy juice a.k.a sedation. Anesthesia will be on hand in the event he needs it. There is a continued growing concern with this because with each scan he has pauses in his breathing more and more which means we are getting closer to them saying he has to be admitted and intebated, something we don't want or Alec. I pray he will do okay with this.
On an even more nerve racking note, as some of you know Marks job hit some extremely scary times, alot of lay offs. They are down to a skeleton crew. We have weathered a huge pay cut including no more commissions. Now we get word health insurance changes.
I know that his company has to do what is best for them to keep them a float but we have hit rock bottom. Our normal household bills are the same with less income and now a possible plan includes a prescription cap of only $3,000 ad I'm not sure on medical yet. Mark has been feeding me all this information to contact Dr.'s, Specialist, Surgeons, Medical supply places to see if they take this new insurance. As it turns out they do which is good; but we will have $500 deductible for each hospital/er visit, $50 copay for Dr.'s and then the prescription cap. According to our medical supply place, between his feeding pump, oxygen, ng tubes, syringes, pulse ox machine, bipap machine, suction machine just to name a few we will be maxed out in 2 months.
We'll see nothing is in place yet, Mark is still asking alot of questions. And our new Social Worker, Lauren, at the hospital is a tremendous help, once I get some paperwork on this she's gonna help us sort through it.
We've been doing some talking and it pretty much comes dow to if Mark looses his job, a move to North Carolina might be inevitable. I'm looking at a children's hospital down there, Levine. Checking out schools and where Alec would go. It's just to hard to live here on Long Island, Mark doesn't want to do the city run and I can't blame him. Plus, the commute from our house, forget about it.
Anyhow, on a brighter note we had a nice day at the beach the other day, Alec made sand castles, Kevin was catching some horseshoe crabs and finding shiny shells and giving them to Alec. Sean on the other hand is a beast, haha. He's 2 what more can I say. It's quit comical at times.
He is getting speech services, still not speaking a whole lot. I'm sure he just needs some more time. Well Alec is calling me and we have some running to do.
Take care.
-Amy