My Thoughts About Today

This morning I made a post on my other blog about the "R" word. As I'm sure most of the bloggers within the Down syndrome community know today is the day the Special Olympics have set aside to raise awareness about that word.

To me the use of the word is more than just semantics or popular culture. It's an attitude our society has about people with cognitive and other disabilities. It's a reality that parents and individuals effected by a loved on with special needs have to face on a daily basis: Our children and loved one's are marginalized and laughed at by the society we live in.

This fact hurts me beyond all else when I look at my son. When I think of his extra chromosome, the one that resides in every cell in his body, the one that gives him his almond shaped wide set eyes and his short little legs propped up with the cutest little feet, society is what hurts me. Not that chromosome. It's the judgement and exclusion from this society that my child was born into.

Frankly, I don't know if we'll ever see attitudes change, at least in my or my son's lifetime. I guess all I can do is strive to change the attitudes of the people around me, the few souls that I collide with in my own little microcosm. I can only strive to give my child the best, expect great things from him, demand respect and inclusion from the people around him, try to change hearts one at a time.

That's the least I can do for you Yusef. I know you will do the same.

Worried

We just got back from a little getaway up to Kansas City. The hubs works so much and runs two of his own businesses so it's extremely rare that he can get away for any meaningful vacation time. Actually, it's a point of contention between us, but I won't get into that here.

Anyway, we all had a great time and the kids thought the motel room which was really just a really crummy, run down Super 8 was the greatest thing ever. Yes, we really need to get them out more.

I also got a new digital camera because I was wondering why my pics always come out so blurry and then I realized the old one literally only has 3 mega pixels so I decided it was high time for an upgrade. I bought one with 10 mega pixels in excellent used condition and got quite a deal. It also has a decent amount of zoom power on it which I really wanted so I can catch the kids in the act without them realizing I have the camera out because then they usually get shy or try to pose for the camera and I want to catch them in their natural cuteness. The only thing is it didn't come with the USB cable and come to find out it is a 2.o cable which is different than the ones I have. I actually had no idea there was differend types of USB's. So now I have to buy that. And then, I promise, promise, promise I will post some pics.

So anyway, the last 3 weeks have been stressful to say the least. First we were all sick. Then Yusef was in the hospital overnight with RSV. He's doing great now but then I got sick and wanted felt like I was going to die and turned out to be strep throat which hubby promptly got. Now see, this is why husband and wives shouldn't be kissing! Anyway, a course of antibiotics and prednisone later, I actually feel human again. Thankfully, the kids somehow managed not to get it.

In the midst of all this, Zainah had also been sick and had this nasty cough that just would not go away. You may or may not know Zainah is a cancer survivor and is in remission so to speak from a tumor that was found on her kidney. She had the entire kidney removed and went through chemo. So anyway, she had one of her routine CT scans and the next day the oncologist called me and said something funny showed up on one of her lungs and the radiologist felt it was either a mass or a pneumonia. I didn't think to ask why the hell couldn't the radiologist tell the difference. This was at the exact time hubby had her at the doctor's office for the cough. So now she's on antibiotics for what we presume is a pneumonia but the seeds of fear and panic have sprouted.

Cancer is the devil. It is like a dark shadow that follows you even to your dreams and never goes away. It's the bogeyman that can pop up at any time. I hate it. Leukemia is one of my worst fears for Yusef. We all know that in life there are no guarantees and horrible things can happen. We put it out of our minds so we can function and stay sane. But when the fear rubs up against you, into your pores, clinging, it's hard. Real hard.

People sometimes tell me I'm so strong, they just don't know how I do it and I always chuckle; Because really, does a Mom have any other choice. I'd do anything for my children. Anything. For now I just hold them tight, soak in their smell, revel in the sounds of their laughter, bask in the warmth of their little bodies...feel. Just feel them. And love them.

Back to ourselves

Just a quick note and update. We've had our follow up EEG and it is still showing some seizure activity, but it looks "a hundred times better". We've not been able to actually see any of the seizures since the ACTH. While things still aren't perfect (whatever that is), I'm thrilled that I've got my little man back. He seems to have awoken from a daze and is interacting with all of us. We're having so much fun!

Back to the neurologist in 2 months for a follow up.

I'll post some more pictures in the near future, I promise. I've been a horribly lazy blogger lately.

Finishing up the ACTH

We're winding down on the ACTH treatments now. I'm giving the injections every other day this week and Thursday is his last shot!

For much of the course, we've seen really no improvement. In fact, for much of the last 6 weeks, Yusef's seizures and symptoms have actually been worse.

However, this week he's suddenly come out of his fog again and is smiling, cooiing and laughing! Yes, for the first time in his life I've heard his laugh! I can't tell you how happy that makes me; How my heart soars with pride, my own face reflecting his joy.

Right now, I'm cautiously optimistic...

Starting ACTH

It's been a while since I've updated this blog and alot has happened.

The meds that Yusef was on for the infantile spasms just simply aren't working. His last two EEG's continued to show frequent seizure activity. Developmentally we are at a total standstill which is the most frustrating thing that has gone on. I'd say my 10 month old is still at a 3 month level, even regressing since this all began 6 months ago.

So two and a half weeks ago, we started the ACTH treatments. ACTH or adrenocorticotropic hormone is a treatment which is sometimes effectivce with IS for reasons not understood by medical science. The cost of the six week treatment is well over 100,000 dollars. No that is not a typo. It's craaazy. Apparently, Questor is the only drug company that manufactures it, and since it used to treat a rare condition, they can charge whatever they want! Well yay, for them, and thank God, thank God, we have decent prescription coverage.

These two vials costs $93,000, and there's more to come

It's quite stressfull to even have these vials in my house. I'm deathly afraid there's going to be a fire or something. Of course, even more stressfull is jabbing my sweet boy in the leg with a needle every morning.

The treatment is a six week course. We started at the highest dose 3 weeks ago, and are tapering down each week. The first week Yusef did great. He immediately became more alert and began cooing and gooing like never before. He had a light in his eye. He looked us in the face and truly studied us for what seemed like the first time. Then last week the insidious seizures started again, and he again became like a zombie, spaced out, seemingly oblivious to the world. Since then, the seizures have come and gone. One day, I'll see seizures, and the next he'll be back again, alert. He still hasn't smiled for what has seems like months. He's still never laughed.

ACTH is still considered the gold standard in treating IS, but there are still some treatment options that I'm quite interested in, namely the ketogenic diet which has shown to be as effective in some studies. There is also a drug called vigabatrin. I'm also seriously thinking about taking him to Children's Mercy in KC to get a second opinion as I fell like this Dr. has been dragging his feet with this. This has gone on now for 5 months! Why did we drag our feet so long before starting the ACTH and why did he never mention this ketogenic diet? I'm still learning about this, but I know that it will be the next step if this treatment doesn't work. I feel in my heart, it's not going to. And now I feel trapped since we're right in the middle of the ACTH and I feel guilty because I should have taken him for another opinion sooner when we weren't seeing results earlier in this journey. Then again, this could all be the angry rantings of a desperate mother.

This has been a heartwrenching experience and it isn't over yet. In some ways it feels like getting the diagnosis all over again, the same fears and grief, and in between glimmers of hope.

Make a Little Boy's Last Christmas Special

This message came from a fellow blogger Salma whose blog can be found here.
Please take the time to make a little boy's day!

I just learned about a 5 year old boy named Noah Biorkman who is in the last stages of a 2 year battle with Neuroblastoma Cancer. His family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards.

Please let's make this little warrior's wish come true.

Send cards to:

Noah Biorkman

1141 Fountain View Circle

South Lyon, Mi 48178

Lets see how many cards
we can get together for this brave little boy.

Thank You and God Bless.

Please also consider posting this very urgent message to your blogs.

I just wanted to share this site A Little Extra by Connie Wenk. She takes the most extraordinary pictures of children with DS. It's such a gift to have these children in our lives and she says it so beautifully in her pictures.

Here's one: