Groundhog Day


This post has nothing to do with a groundhog.  Although I am reminded a little bit of the movie with Bill Murray and Andie MacDowell.

Joseph had his 1st RSV illness when he was barely 3 months old.
See the smile on Brady's face?
That was a time in our lives when SMA was still unheard of,
when RSV was just a two-night stay in a regular Pedi floor.



RSV 2nd time around (officially at least, since Joseph tested negative for RSV
during his last PICU stay in 2010, although Brady and I were pretty sure
that he had it).  This time around, instead of a 48-hour hospital stay, how about
a 14-day illness, including a 10-day stay in PICU.

But, I may be getting ahead of myself and I surely hope that I don't jinx us.  It's just that I am so ready to sleep all stretched out on my bed instead of this:

Of course, Joseph will dictate our decision on whether to really be discharged Friday or the next day.  He sure showed signs of being almost back to his baseline: off of bipap for most of his waking hours today; no afternoon nap; O2 sat ranging from 96 to 100% without bipap; actively playing on his computer; extremely chatty; acting impatiently when his videos or games take a long time to load (Internet is not optimal in his hospital); and bargaining to keep on playing long after his Daddy has told him to turn off the computer. 



The "dragon" is back.



LOL.  Washing the hair without water.

Hair is finally clean.  No more itching.

Time for bed.  Hopefully our last night in PICU.

We'll see how tomorrow goes.

Ugh

Last week, Joseph caught me off guard again with this, "When I don't have SMA anymore, some people will teach me how to walk."  I think that this came about a couple of days after his Daddy and I were having a conversation about a little boy from our area who had been in a hospital in Houston for more than a month with no clear diagnosis, but now recuperating and starting to get back to walking again.  **sigh** Would that SMA be as simple as appendicitis: cut out the appendix, and you'd be all better.  I would even settle for SMA to be manageable/controllable just like diabetes.  Hey, you guys in SMA research, wasn't there supposed to be a cure for SMA in FIVE years when Joseph was first diagnosed with SMA at 11 months...Joseph will be 8 years old next week.  Please hurry up.

Where Have We Been?

This little guy has pretty much kept us captive this month.

Or rather, this boy who wants to play Little Big Planet 2 all day and all night if we let him.

The thing is, Joseph is unable to manipulate the game controller for the Playstation.

And so he waits for one of us to be available to play the game with/for him.

It is a major test of patience for him and for us. 

 I would say that Brady is the most patient among us. 

We are still waiting for that special switch.
I hope that it is worth the wait and the cost.
We'll see...

Waiting

for a cure for SMA,

for Mommy to take him to the living room,

for the computer to be set up,

for Club Penguin or World of Cars or YouTube to load,

for Daddy, Mommy or Austin to have time

to play Little Big Planet on PS3,

for his friends to be online so he can join them,

for that special switch to come so he can play LBP2

on his own.

Sometimes we fuss at Joseph for being impatient or abrupt to people (us) when he wants us to do something NOW.  But really and truly, he is the most patient among us. 

SMA

I had a tough time focusing at work today and felt very impatient with everybody with their "petty" concerns and "mundane" troubles.  Didn't everybody know that today a mother was keeping a vigil on his precious boy and making a very hard decision that would rip her heart out?  Didn't anybody realize how so scared I was that it would be me in the same circumstance someday?  I thought of Pranav and his Mom the whole day and wished that somehow they felt the love and many hugs that were being sent their way.  Many people cursed SMA on Facebook today.  If only words could hurt a disease.  And tonight, I count my blessings as I share another mother's broken heart.  (And on SMAspace, Agustina's father wrote about her passing yesterday.)  Oh Lord, have mercy on us.

Loved Ones

Make a photo collage

I like to think that Joseph is in good company. 

These are just some of the special and beautiful children/young ones with SMA. 

 I featured the young men that are about Joseph's age, ranging from 5 to 14 years old. 

 And theirs are the stories, whether in blogs or CB sites or Facebook, that I usually follow. 

( I follow a lot of the girls, too.)  They are all inspirations to us.  There are a lot more kids with SMA that are living happy lives.  Brady and I draw our strength and courage from their families.

And so from L->R, top->bottom row:

Kyle, Casey and Colin O., Sky, Drew

Charlie, Pranav, Ryan, Joseph

Nolan, Casey D.

Bad Start of the Year for SMA Families

I found out today about another SMA child earning her wings two days ago.  It seemed like there were so many who passed just this month.  The fact that Kaitlyn was almost 9 years old is too painful for me.  These are my honest feelings and thoughts about Joseph and SMA: I want Joseph to live a long happy life.  But when I read about the physical pain that SMA individuals have as they get older and all the medical issues that they develop, I think that I don't want that for him.  Even now, when I see the things that Joseph misses out on, and those things that he cannot do but want so much to do, my heart breaks and I pray that Joseph will be protected from feeling frustrated and depressed from knowing that SMA has robbed him of so many things and possible friendships.  Every holiday or special occasion, there is always that silent fear that what if this would be our last time together.  Our life revolves around Joseph so much that we can't bear to think of the worst.  And yet as I have these thoughts swirling in my neurotic head, I clearly remember what Joseph asked me one day last week.  Out of the blue, he asked: Who will take care of me if you and Daddy died?  As I recovered from my mild shock (God forbid that Brady and I would die from an accident and leave Joseph an orphan.  Oh, sweet Jesus, please no!) I started naming a few people.  And as we talked some more, I realized that he meant WHEN we die (of old age!) not IF we die (as in, prematurely).  And I felt comforted that Joseph sees himself growing up and growing older.  I don't know what the future holds for my son, and us for that matter, but I just have to keep this in mind:  "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

We Shall Overcome (Of course)

Joseph met his villain.

But the villain and its henchmen were quickly defeated.

If only Mommy/Daddy's villains were defeated that easily. Villains come in many forms. In our case, they are all the negative feelings of sadness, fear, and at times, anger, that assault us when we are reminded of just how horrible and cruel Spinal Muscular Atrophy is.

The villain sometimes catches us off-guard when Joseph asks us questions like:

"When I'm older and my muscles are working, can I play dodge ball?" or

"Why does my leg have to hurt?"

We don't have a straight answer to the first question, but had a pretty good idea about the second one. Expecting words like "osteoporosis" and "hip subluxation" did not make it easier to read the x-ray report re: Joseph's hips. But reading the report was a bit easier than actually looking at the x-ray films. It hurt me a lot to see just how bad Joseph's hips and bones are. It reminded me that as much as we try to put SMA to the side and try to live our "normal" lives, the ill-effects of SMA just keep on. So for a moment, I let my villains overpower me. Tears were shed. Endless moments of just staring at Joseph. And then, back to our "normal." Anyway, there are plant nurseries to go to,

plants/flowers to be planted,

and there's a little boy who needs help to play games on the computer and who dreams that he will become a rock star/pop star and get married when he is a grown-up.

Fall, Fear, Life

This was about the most fall foliage we could get down here. It was not even cold that day, and by the time I took this picture, Jojo already had two mosquito bites!

During the past week or so, Jojo's O2 sat has been dipping below 94% in the afternoon. He does not act or look sick. His lungs sound clear, nose is relatively not that noisy, no fever, normal heart rate; and yet, every afternoon at around 2PM the pulse oxymeter starts beeping. So we suction, cough, suction, breathing treatment, and usually it comes back to 96 to 98%. And yet, in the back of our minds, there is that fear that maybe SMA is robbing him some more of his strength. But as I watch and listen to him vocalize/yell after his morning cough assist sessions, my fear eases up a bit. One thing you learn from living with SMA though, you can never be totally at ease and satisfied that this horrible disease has stopped its progression. And so we watch and observe him more closely. And try to live our lives as normal as possible.

Hard Question

Jojo's HR is in the 50's to 60's as he sleeps tonight. I think he's back to his baseline. There was no out-of-town trip for him this week. He was supposed to go to a dentist 2 1/2 hours away last Tuesday but we had to cancel because he was just getting over his little illness. We did go to Nana's that evening for a little family get-together. Then, today, his Daddy and brother took him to Wal-Mart just to get him out of the house.
Jojo has been extremely chatty at night just before he goes to sleep. He thinks of games to play or contests, and asks a lot of questions. Tonight he asked me why his muscles were not working right. Not an easy question to answer. He moved on to say that the muscles in his eyes are working, and in his nose (he meant that he could smell, because he can't wiggle his nose anymore), and in his mouth (again, he meant his sense of taste is fine, because he can now hardly smile or make the sounds of p, m, v, b), but not his "walking muscles." And in my head I was saying, not only your walking muscles, neither your rolling over muscles, sitting up and standing muscles and chewing and swallowing muscles, and breathing muscles are working right.
I hate SMA.
I find that most of the time, I am inure to the "evils" of SMA. I can deal with my child's severe disability. I know what to do when he gets into a "crisis." I have accepted how our family's lifestyle is different from those of our friends' and coworkers', and I am okay with that. But when I see Jojo recognizing his limitations, it hits me hard. And when I read of yet another child losing his life to SMA just like little Ollie did, two days before his first birthday, then I am reminded of how fragile my son is. And I get scared and sad again, just as I did when Jojo was first diagnosed.
I wish that all the lawmakers would hate SMA enough that they would go on board with the SMA Treatment Acceleration Act.