Honestly, I know we aren't supposed to be given more than we can handle but a little break would be nice. Please.

Image via WikipediaOur crazy life continues to get crazier. Last week Clarence went back to hospital for another Afib situation and today he has been readmitted again. The findings were not what you'd expect...he has a blockage to his kidney and they believe some parts of the kidney have died. They've admitted him and given him a whopping pain killer. The nephrologist has been called so we will learn more about the situation then. I did a quick lookup online and see that bouts of Afib are connected with blood clot blockages to the kidneys.

I went to the dentist today after putting it off for 6 months, yes, 6 months. I had the root canals in January. Well, one of the root canals is in a cracked tooth so one has gone bad. Had the other one prepared for the crown for a piddly $890 (yes, that was after insurance paid their part.) Seriously, people, I will never pay that much for a stupid tooth again.

The other one has to be extracted now...with it's root canal, uncapped self..but, yes, you guessed it, I need an oral surgeon....sure...how much you think that will be? Honestly, I know we aren't supposed to be given more than we can handle but a little break would be nice. Please.

News: Clarence suffers another health setback

We are sending out good wishes for Clarence, the boys' father.  If you remember, he's had several health setbacks of late with his HCM and heart problems.  Tonight, he was taken by ambulance from work to the hospital. I'm happy to say they've released him but his heart had gone into atrial fibrillation again.  He now has some new additional meds:  anti-arrhythmic meds.  That's been three episodes in the past 3 months.  Will keep everyone up-to-date.

Precious Baby, Addy, 3D Sonogram

Click below to see our precious new granddaughter!!

Photo slideshow generated with Smilebox

Amazing news to report about the boys!

Image by CarbonNYC via FlickrTo all our friends and family,

We have amazing news to report from the boys' doctor appointment. Quest just called to share the "big news."

Zak- Zak's measurement has not changed! This is wonderful! His beta blockers are doing their job and there has been no increase in thickness. I am so doing the happy dance right now. Now, his HCM is still severe. The "normal" heart thickness in a 7 year-old is from 3.9 to 4.7 mm and zak is measuring 29-30 mm. That said, you can see why no growth is a huge blessing and one we are thankful for! He will see the doctor again in 6 months as long as he remains asymptomatic.

Quest - Quest's heart has improved! Yes, improved!!! The beta blockers have again done their job! Quest, in fact, does not need to see the heart doctors for one year! I cannot believe I'm able to share such amazing news with everyone. Now, he will remain on the beta blockers and his restrictions will remain the same as we can never act as if he doesn't have HCM but this would be a case of improved health! :) His genetic testing came back positive for HCM. The doctor said that there would be no defibrillator at this point for Quest.

For both boys, this is the time of life that is riskiest. The thickening process is often accelerated during their growing years. While there are exceptions, like in the case of the boys' aunt Priscilla and Grandmother Shirley, it is now that finding no growth is an event to celebrate without a doubt! One thing we know from the family history is to celebrate the good news but to remain vigilant with the disease. But for now, for this moment in time, we smile!

No Teachable Moments, No Miraculous Turn Around

Today, I had the pleasure of attending the ARD for Zak's 504 plan at his school. There was no miraculous turn around or teachable moment to make a last minute change that might help other HCM students who might follow Zak.

The most significant thing that stood out to me was that Zak's AP, the person in charge of his 504 plan, couldn't pronounce hypertrophic cardiomyopathy. I found that, well, for lack of a better word, pathetic. I think it somehow was oddly symbolic of their lack of ever understanding what the risks were/are with this child and their roles in preventing a horrible outcome.

His teacher was there, too. It was interesting as she has not spoken to Marki for two weeks now though they are neighbors in the pod where the first grade is housed. She's angry because she took Zak to P.E., clearly in contradiction of his 504 plan, and his parents had the audacity to ask her not to do that. Her response is to "punish" Marki with a cold shoulder at work. Oh, that and saying something about Marki with the kids around...yes, Zak heard it. He was sad.

Maybe the teachable moment was ours as we came to the hard realization that we just couldn't get through to them. They think they've done everything they could and that is somehow even sadder. I don't think even once they stopped to reflect how they would feel if Zak was their child and the circumstances were similar.

So, if the teachable moment was for Marki (and I suppose me, since I was there), I guess it was to reinforce that all humans are fallible and some seem a bit more "fallible" than others. Oh, and I think we have a good dose of "You can lead a horse to water but you can't make him drink" as they clearly had the information but we couldn't make them understand the reality of the consequences.

There's probably some lessons about patience and faith in God to get you through the rough times as Marki seeks out employment since they let her go due to "reduction in force" also known as RIF - Remove Inquiring Faculty. LOL

Bottom line, Zak will be homeschooled next year. We are all sad that this is our outcome. But, it looks like the only recourse, especially with Marki without a teaching position.

Take a look at our precious granddaughter...at 20 week sonogram!

Personalize your own photo album

Out of the Mouths of Babes - "He Can Not Run But He Can Be A Good Fren"

Out of the mouths of babes come the sweetest words sometimes.  Zak's first grade friend, Tavares, drew him a beautiufl picture (see below).  Everyone knows about Zak's special heart so he made sure to include a happy red heart with spiky hair like Zak's.  In case you can't read the text of the picture, it reads:

 OPEN

look oN The

Back zak is my

fren he is cool

he make. me happy.

(and it flips over to continue)

he can not

run but he.

can be a

goob fren I.

like him as

a fren. my

BESt fren is

ZAK.  his mom.

is cool!

Now, the other side contains a picture of a boy on top of a  hill on a skateboard.  He has spiky hair.  Zak explains that that is a picture of him because Tavares doesn't have any hair!

My heart is just bursting with the sweetness of this.....