Hope, Faith, and Belief

This blog tends to be an “all about Max” affair but Michele happened upon a story in an Italian newspaper that we want to share. While not specifically about our child it is about a child, now a young adult, who society “counted out” due to her disability. Many equate “special needs” with not so special abilities. But this young lady’s parents knew from the very beginning something that Michele and I have held near and dear these last ten years. No matter what, no matter where, no matter how, our children are capable of accomplishing everything a “typical” child (Hate, hate, hate this term. There is no such thing as an “atypical” child but that’s a story for another day) can accomplish. As long as we have hope and believe in our children, and ourselves, the sky’s the limit. Never, ever discount the sense of hope held tight by the parents of a special needs child. It is our hope that drives us to push ourselves, our children, their medical providers, and their schools to be certain that our children have every opportunity to succeed. Not only to succeed but to surpass their “typical” (there goes that odious term again) friends. This is the story of just such a child.

It’s the story of Giusi, a beautiful young lady who just so happens to have Down’s syndrome. But if you ask her she will tell you, “Io non sono Down, sono Giusi, Giusi Spagnolo”. “I am not Down’s syndrome, I am Giusi, Giusi Spagnolo.” She has never let the random name of a syndrome dictate who or what she is. Her parents made certain of this, to quote her father:

“Il segreto - spiega lui, ex presidente nazionale dell'Associazione famiglie persone Down - è non porsi ostacoli preventivi, conoscere a fondo i propri figli, cercare in loro il germe di un talento di un'opportunità, assecondarla in ogni modo. Una ricetta che credo sia valida per tutti i genitori, e non solo per quelli che hanno figli con difficoltà maggiori. In una parola, crederci”.

“The secret,” he explains, “is to not put up obstacles where they don’t exist, to know our children, to find in them the seedling of their talents, an opportunity, and to nurture it in every way. A theory that, I believe, is valid for all parents and not just parents of children with greater difficulties. In a word, believe in them.”

Recently Giusi became the first woman with Down’s syndrome to graduate from a European university. But she didn’t just graduate, she rocked it with a grade of 105 out of a possible 110 – an almost impossible feat! She hopes to go on to inspire and teach other children. But this is the story of just one child and her parents; there are many of us out there. We hold tight to our hope, our faith, and our belief that our children will have a future full of realized dreams and successes. No matter what a doctor and modern medicine may tell us we live off of hope, some days it’s all we have. The hope a cure will be found, that our children will have a chance to shine. In fact, there is another Italian family out there praying just such a prayer for their daughter. Serena is a beautiful little girl with a bright smile and dark eyes but shortly after her birth four years ago it became clear that something wasn’t quite right. And so her parent’s quest began. Although doctor after doctor has told them there is little they can do for their daughter these parents have not, will not give up. They believe in their daughter, they have hope and faith that a cure will come. After all don’t we all have hope for, belief in, and faith for our children’s future? Parents of children with special needs just have a little more than “typical” parents!

To read the whole article (in Italian :)) or at least see a picture of Giusi, go to: http://www3.lastampa.it/cronache/sezioni/articolo/lstp/394413/

We're Leaving on a Jet Plane....

We saw the doctor this morning and after a quick exam she declared Max fit for travel! While Max was happy to be doing well enough to go home his real excitement came when the doctor asked him if he had any questions. His immediate response was, "Can I play video games?" When she replied positively I don't think Max really cared where he was or where he was going, after two days all he wanted was his PSP!

So we're packed up and ready to go knowing full well that we'll be back in another eight weeks. I jokingly told Michele that I wished they had lockers here so that I wouldn't have to schlep half this stuff back and forth.

Arizona here we come!

Surgical News - All Fronts

Max, as always, sailed through surgery like the champ he is today, in fact, he surprised everyone but us! Because of his cardiac status it isn't unusual for new doctors and nurses to be extremely cautious with Max expecting him to pull some "stupid medical trick" but he always "behaves" and bounces back beautifully. The anesthesiologist was great (sometimes good things come to those who wait) and very attentive to Max. The surgeon was quite happy with the results and he expects a full recovery of the vision Max was losing. We'll see his senior fellow tomorrow and check back in with him when we're back in May.....

.....ah, yes, it's been confirmed that we'll be back as soon as school lets out. After our meeting with Dr. Vricella he presented Max at "cardiac conference" this morning where all of Hopkins' great cardiac minds convene to discuss their biggest cases (one more club Max qualifies for). This discussion confirmed that surgery couldn't wait and a brand new high tech mechanical valve that only Hopkins has been approved to use will probably be the best option for Max. Becasue Dr. Vricella leaves for Italy on June 16th we need to be in and out before then. Max will have to miss his beloved summer school but at least he'll still have a good chunk of his summer vacation left when we return to Arizona.

I'll close with a classic "Max Moment", we walked into pre-op this morning and all the nurses swung around and yelled, "Max is here!" With the thousands of kids that walk through this place I asked them how they remember all the kids. The reply? "We don't but who can forget Max?" Just one more set of "Max Fans"!

Picture Post

Captain Max at the Helm in the Inner Harbor

A Beautiful Spring Day in Baltimore

Relaxing in Some Super Cool Hospital PJs in Pre-Op

War Paint
Surgical marks ensuring they correct the rights eyes. Oh wait, they're doing both eyes!

Surgical Update

The surgery scheduler called back this afternoon to say we're a "go" for Friday morning, however, there has been a slight change of plans. They will be doing the surgery in the main hospital not in the outpatient eye clinic as they had originally planned. Obviously this is the part of the new plan we do like, we feel much better (and more familiar) with Max being on the main surgical floor. In the end maybe things do turn out for the best, who knows?

We are to report for "duty" at 6 AM and surgery will be at 7:30. Max is actually ready and seemed relieved when we told him we had a day and time. I don't really blame him, as stressful as this surgery has been for Max the uncertainty of the "when" just seemed to compound his anxiety. God bless this kid and all he deals with.

We are also thankful to Max's cardiac surgeon, when I called his office this morning to explain the situation he immediately agreed to see us after his first surgical case tomorrow. Barring any emergencies we should see Dr. Vricella at 1 o'clock to discuss the few options we have for Max's open heart surgery this summer.

We know the surgery is a reality so now we're praying that the doctors' will make the right choices regarding the best valve options for Max. Each type of valve has its own pros and cons so it's hard to figure out which option we feel most comfortable with.

The next two days will be tough, as much as I love Max's surgeon I really hate these appointments because there hasn't been much good news regarding Max's heart in a very, very long time. I'll update once we know more.

If it's Tuesday it must be.....

......dermatology, cardiology, echo-cardiogram, EKG and cardiac MRI. Tuesdays at Hopkins are notoriously long, unforgiving days because this is the day most of the pediatric clinics hold their office hours. Heaven help the medically complex child (aka Max) who has to see several of these specialists who just so happen to be spread out over a radius roughly six city blocks in all directions.

Our first appointment of the day was at 8 AM and we finally dragged ourselves out of the hospital's main doors after 5 PM and a harrowing MRI. It was an emotionally draining day. Although all the news we received was what we already knew it never gets easier hearing that your son is a conundrum. Everyone puts a positive spin on Max’s uniqueness and they’re right, he is a miracle who just so happens to be “writing his own book”. The dermatologist actually asked us if he could present Max to his class during our next trip to Baltimore, he excitedly told me how these medical students might never see another Max again. I’ve gotten to the point that my son’s “guinea pig” status no longer bothers me, I too have a new, positive spin: he’s a “pioneer” not a lab rodent! Whatever helps me get through the day right?

On the cardiac front, no surprises – the aortic valve continues to leak severely and so we have confirmed a summer in Baltimore. Michele somehow convinced himself that we’d get another reprieve but alas it’s not to be. We’ll see the cardiac surgeon on Friday and talk specifics like dates, what type of valve (mechanic, donor, or if we’re really, really lucky a repair of Max’s own valve), and likely post-operative care. We’ve known for a while that this train was coming and today we heard its whistle so now we know that it’s not too far off. Doesn’t make it easier, just makes it real.

I know all this sounds pretty crappy but the day got even worse when we got home. We were barely through the door when the eye surgeon’s scheduler called to say that the anesthesiologist on service tomorrow decided at 4 o’clock that she doesn’t feel comfortable caring for Max and so they are scrambling to figure out how and when they can operate. All we know is it definitely won’t be tomorrow. I understand the fact that on paper Max is frightening and I guess I should appreciate a physician who is willing to recognize when they’re in over their head but I’m frustrated to know that we may not be able to do anything until Friday which means two things: one, Max will not have the recovery time we wanted before we fly out on Sunday and two, now I have to figure out how to reschedule the cardiac surgeon. Sometimes I feel like I’m trying to choreograph a production of dancers who refuse to be choreographed. In my frustration tonight I’ve been mad at the world, bit my poor husband’s head off, and otherwise cranky.

And so another Tuesday at Hopkins draws to a close and for this I am thankful!

Waiting for Cardiology.....Can you tell it's still early in the day?

Chillin' in the lobby between appointments, definitely later in the day!

Are we done yet?

Hello Hopkins!

After an uneventful trip we have arrived safe and sound at our Baltimore timeshare Johns Hopkins Children's House. As we sat in the kitchen eating leftovers tonight I remarked to Michele that I sometimes feel like I never leave this place. Unfortunately this will be our home away from home for a while.

Tomorrow is a free day before the fun and games begin on Monday with pre-op appointments and blood work. Max has a million burning questions for the surgeon. The most important of which is how will he do the surgery on his eyes if he's asleep and his eyes are closed? Hopefully Max will be OK with the answer he gets because he really is perplexed about this whole procedure.

Thanking everyone for their love, support and prayers for Max and his entourage (better known as us). Stay tuned....

Not So Good to Go....

Seconds after I hit the "Post" button on my earlier entry my phone rang, it was Max's Nurse Case Manager from APIPA (his State Medicaid plan). She was calling to let me know that none of Max's care next week, the appointments, the testing, the surgery, none of it would be covered by them. Really?! Because I was promised last fall by the same folks that Max was being given a Case Manager so that we would no longer have these issues. It seems that this was just another untruth (so as not to say lie) to keep an angry mother at bay.

The nurse actually sat and read the notes to me from the doctors at Hopkins, the ones that said Max is losing an important component of his vision and yet still was being denied surgery. It's truly not her fault, she tried, it just seems that the State of Arizona has put a price tag on a child's vision and has decided it was too expensive. Rather sarcastically I asked if the Seeing Eye dog would be covered.

We aren’t asking the State to pick up the whole bill; we’re asking them to pay the “leftovers” of what our private insurance does not pay. At most we’re talking about a few thousand dollars. So I guess Max’s vision isn’t worth $2,000 dollars and I will soon be receiving phone calls from the billing department at Hopkins. The fun truly never ends…..

Tears

It seems like this has been a very emotional week for everyone, at least at our house. I am out of town for work so I missed it when Max came home from school yesterday crying inconsolably about next week's surgery. He told Michele that "he's done", I have long worried about the arrival of this day and here it is. The timing couldn't be worse as we head to Baltimore for one surgery and to schedule yet another. Michele, as only he can, talked Max down and by the time I was able to skype him he seemed to be himself, super excited to show me the almanac he had gotten at the school's book fair. I guess I should never underestimate this kid's ability to bounce back!

Today was my turn to break down. I had myself one of the best cries I have had in a very, very long time. Strangely enough it was for much the same reason as Max, I'm done! And the only thing that set me off was a few e-mails tying up some loose ends for next week, last minute appointments, etc. The next thing I knew I was bawling like a baby! Over an MRI, really? There have been dozens of MRIs over the last nine years, why was this the one that sent me over the edge? Probably because this is the one that will make open heart surgery a reality. Realistically May’s surgery is a reality but an MRI is black and white proof – there’s no denying it.

Maybe I should admit to myself that it wasn’t only the MRI that caused me to crack, I think the bigger issue for me is the creeping fear that the doctors are not finding any other male children with Max’s genetic make-up and medical issues. Don’t get me wrong, I am thrilled that there aren’t other kids facing Max’s mountain of maladies but I do fear that with a lack of research subjects Hopkins will be forced to end their study. I have to be honest, no one has ever hinted at this and it could just be the emotional imagination of an exhausted mother but I have always had a sixth sense about these things. Hopefully I’ve worked myself up over nothing, there’s a first for everything, right?

So the good news is now that we’ve all gotten it out of our systems we should be good to go for next week. Should be……