Cardio Appointment Update

Jack is doing well. The cardio didn't hear any fluid on his lungs and his heart sounds pretty good. In 6 weeks time we are scheduled to go back in and have another echocardiogram and EKG, and at that time we'll determine when the surgery will be. Hopefully sooner rather than later...in the meantime, check this new pic of him out. We are working on building up his back and ab muscles by having him sit with a Boppy Pillow around his waist then trying to push up off of it. He is trying so hard but is a little more comfy on the right side. He keeps toppling over to the right once he props himself up! So here he is practicing sitting up with the Boppy. I wonder where he gets those big brown eyes? hmmmmm...Both of my kids have enormous brown eyes!

Out of the fog and into the light…

(A little background…John worked in a union before we started our company, and in doing so, he received full benefits for our family. When he quit his job, we began paying COBRA to continue our coverage until we made other arrangements.)

Fast forward to June 1, 2006…I received a certified letter from John’s union stating that there was evidence he was working non-union and so our benefits(which was actually COBRA that WE were paying for) were being pulled as of yesterday and they were sending our June check back to us. So there we were, for the first time EVER in our lives without insurance. Even on a normal day, the idea of no insurance freaks me out, but my son is due to have open heart surgery in a couple of months and in all reality, he could go into heart failure on any given day and have to have the surgery sooner. He also has a condition which has the potential to have major health issues and although none have shown up, you never know what the future holds. So there we were…immediate PANIC!

I immediately went online looking for a plan, and I cannot even begin to tell you how many plans are out there…in the zillions I think! So I went the route of an insurance agent who informed me that although John, Bella and I could get whatever we wanted, Jack will never qualify for any kind of Private Insurance because he has two pre-existing conditions – his DS and his heart defect. GRRRRREEEEEAAATTTT!!! Before I began falling to pieces, my agent reassured me that there is a state program out there for kids that doesn’t look at pre-existing conditions and it’s only $9.00 a month. Because we have a new business, we would qualify financially…Whew…or so I thought. Getting Jack qualified for this insurance has been my worst nightmare. First off, my “lovely” insurance agent did our profit and loss sheet incorrectly so that Bella was approved but because of her error, she qualified Jack to be referred to Medi Cal…First of all, there is no way in the world we qualify for Medi Cal, and secondly, even if we did, I want to choose Jack’s surgeon, not have it chosen for me. And it is impossible to even find a pediatrician who takes it. So I began the appeal process…I am surprised I didn’t have a heart attack after all of the stress these state workers put me through. Everything they asked me to do, I did it immediately because I needed insurance YESTERDAY! Every person I talked to gave me contradictory information which delayed the process each time. An example is they asked for proof of Child Support in the form of a letter from Keeley’s mom or the court order. I called Angie who faxed me the letter that day and I sent it to the insurance company. I then called them and restated what I had done and asked if it was sufficient. YEP…10 days later, NOPE! Sorry the letter isn’t valid. You need the court order and then it will take, yes, you guessed it, 10 MORE days to process. They made the mistake of getting on the phone with John when that happened and he flipped out on these people. They did an urgent request to expedite the decision…then they found something else we needed to do, then again and again and again…and every time it was 10 more days. I, in good faith did everything these people asked me to do and there was no reason Jack should not have received the same coverage as Bella. It’s so ironic that the person I needed to be insured the most was the only one I couldn’t get covered!

So I have been basically harassing these people, calling a few times a day to check the status and make sure I have everything in that I need to. A supervisor has NEVER been available when I call. I actually think they red-flagged us after John talked to them! I didn’t know the impact this has had on me until today…I woke up emotionally drained. I spent all day with a headache and just wanting to lay down and sleep it all away. I was exhausted! I was frantically worried about Jack. I had to pay cash for his well-check and I was willing to pay for his Cardiologist appt, but I have an awesome cardio who didn’t make me pay because he knows what hell this has been for us. I feel like this has been my job for over 2 months. Sometimes I have spent over two hours on the phone trying to get the right information and I’d run into dead-ends constantly.

So this afternoon I did my usual call to the insurance company and I was all riled up, ready to fight with them…but to my surprise, THEY FINALLY APPROVED HIM!!!!!!!! Halleluiah! I bugged them so much, they finally got him insured…It only took 2 ½ months! But OH MY GOODNESS!!! I am ecstatic! My baby is going to be taken care of and we don’t need to worry. Finally, a light at the end of the tunnel. I can’t tell you how happy we are! John said to me today to just forget about them and let’s find a different route and I told him that there was NO WAY I would let them take advantage of me and I would fight for what is rightfully ours. My son deserves to be insured and woooooo hooooooo, all this craziness was worth it!

San Clemente?

My darling little stepdaughter Keeley is starting KINDERGARTEN this September!!!!! I can't believe how fast time flies by! She is just growing up so fast. Well, being that her "school life" is starting, John and I have been talking at length about possibly moving down there so that we can easily be involved in as much as possible. I mean let's face it, Huntington Beach and San Clemente are NOT close by one another. We also want all of the kids to go to school together if possible, and our little 1278 square foot house is seeming mighty small since Jack was born. So what's the remedy for that? Well, we are kicking around the idea of selling our house and buying a house in the Talega area of San Clemente. If we do make the move, it will be the house that we will raise our kids in. After that, no more moving until John and I buy our retirement home! We went down to San Diego on Friday and on the way, we checked out a bunch of model homes in Talega. All of the houses are over 2,000 square feet which would be a perfect size for us, and the best part, they are NEW houses! John won't have to do any work on the house. His weekends will be free! What will he do with himself?!?!!? The neighborhoods are also AMAZING! They are quiet, clean, and ideal for the kids. There are about 5 parks, 3 swimming pools, and a bunch of hiking/walking trails. The more we think about it, the better it sounds. We found a housing plan we really like, and the next set of homes will be released for sale in November and ready to move into in February or March. That works well for us because we need to finish the house before we put it up for sale. I think John is SUPER motivated because after months of just sitting there halfway done, John has managed to almost finish our master bathroom. I actually think I will be able to sit in my clawfoot tub by the weekend!!!!

So there it is, to move or not to move?????? I know we have loosely thrown around the idea of moving before, but we are pretty serious about making this happen. It will definitely be a sacrifice because living there is not cheap(I don't think there is anyplace in CA that is cheap anymore!!! :-() We will just go back to no cable TV and probably have to sell our trailer until we can afford it again!! I will have to work a little bit more to keep us afloat, but with all of the pluses in this scenario, I think it's soooo worth the sacrifice! I'll update as I know more...

AIR CONDITIONING HAS ARRIVED IN THE CLARK HOME!!!!

YEAHHHHHHHHHHH!!!! No more sweaty kids and CONSTANT dust build-up from all of the windows that are open 24 hours a day! I'm doing a little dance right now!

JACK RYAN - Four Months Old

Jack turned four months old yesterday...my how time flies! John was saying to me last night that it seems like he's older than that because of all of the drama that surrounded the time of his birth. All of that seems like a distant memory now...almost like it never happened, but it really wasn't that long ago at all. Life is just going on, happening all around us. Jack is now holding his head up for over a minute on his tummy, he's eating cereal (well, he's trying! It seems to end up all over his face!), he grabs at his feet, and over the past few days, he's been starting to really laugh at things that excite him...mainly ME. I am pretty funny to look at, I guess!

The past couple months, John and I have gone to the Down Syndrome Association of Orange County 0-3 Support Group. It meets on the first Thursday of the month and it has been a great source of information. We have met some great parents and their kids. I like the idea of going because it's like a network. We get information, but at the same time, we are meeting parents who have kids around Jack's age. I envision Jack (and John and I) making some lifelong friends. That makes me smile.

We go to the cardiologist on Thursday morning. I think we will get some info. on where his surgery will be, when it will be, who might do it, etc... I have to say I'm anxious to get it done. I know that sounds funny, but I'm going crazy waiting around for the inevitable. Jack is up to weight, so there is no reason why they can't just do it so that my baby can move on from this (not to mention I can stop worrying about it so much!). I am going to talk to the doctor about how soon we can have it done. I'll update as I get info.

OK, LOOK AT MY KID'S EYELASHES...THEY ARE CRAZY!!!!

A BETTER DAY
A little update on Jack...I apologize for my last post. Really I didn't ever want to be negative on here but I guess it's just a part of the journey, and I'll tell you, it made me feel a lot better!

So Monday we went to have Jack's 2 month well check (now that he's almost due for his 4 month well check!). But I have been stressing out over our insurance situation, so I just decided to take him in and pay cash for the visit (to ease my mind at least). This is a new pediatrician, and I was a little nervous, but WOW!!!! I am thrilled with this man. What a difference. I have been so used to my previous doctor trying to zoom through the doctor visit that I was shocked when he sat with me for 1 hour(no exaggeration!!!) getting to know my son. He even involved Bella in the visit and let her hear Jack's heartbeat and look in his ears. I was also able to hear his heartbeat and it's really interesting. Because of the defect, you hear a regular beat, along with a whoosh, kinda like a wave. That is the blood going in and out of the holes. I hadn't heard it as of that day, so it was good for me to hear how different his heart sounds than mine. As the doc said, "He definitely has something going on in there." But the good news is, it hasn't affected him yet, and for that I am grateful! Still the same energetic, alert baby that he's been since day one. Another great sign is that Jack is growing consistently. He gained 3/4 pound in three weeks and weighs 11 1/2 pounds. The amazing thing is his length. He grew 2 inches in 3 weeks to 24 1/2 inches long...I predict he's got his daddy's body! YEAH! YEAH! YEAH!!! My boy is doing so well!

As far as his therapy, his PT came out today and the boy surprised her with all that he has progressed this past week. Jack can hold his head up from his tummy for 20 seconds...last week he couldn't even do 5 seconds! He is also talking a lot! "ahhh goo," "duh," "gaah," rasberry sounds, and gurgling... The best thing is his rolling...he can already roll from his tummy to his back, but he is sooooo close to going the other way. He gets all the way on his side! The best part is that he is progressing each week and that makes for one happy mama!

OK don't know what is going on with the font size in the last post...I keep trying to fix it but to no avail...sorry! :-)

RIDICULOUS PEOPLE
I wanted to make this blog a totally positive place to share with family and friends the ins and outs of our family, with an emphasis on Jack right now up until he is home from surgery...but today, with this post, I may get a little negative and just, well, VENT! Let me explain...
Some of you may or may not have noticed that I posted the e-mail I sent out to family and friends IMMEDIATELY after leaving the geneticists office, which was IMMEDIATELY after getting Jack's DX. I did my best to retell everything that the GENETICIST said to us in order to give everyone kind of an idea where we were at at THAT time. I only posted it a few weeks ago so that I had kind of a record of our journey, no other reason. I recently re-read the e-mail, and most of it still rings true, with the exception of Jack's heart obviously, but so far life is pretty typical. I say so far because I am going DAY to DAY. Hopefully he will stay healthy, but who knows...I'm certainly not burying my head in the sand like an ostrich telling myself Jack will be perfect (as I don't with my other children either by the way!) and nothing will go wrong!!! I am hopeful though, and I do have expectations that ALL my children will be supported in every way possible so that they may rise up and meet their potential. That is where I am VERY clear.

OK...onto my venting...Why did I even bring it up? I came on a couple of days ago and noticed an anonymous comment about that e-mail...It went something like this (I'm paraphrasing just a little bit because I erased it), "He either has Down syndrome or he doesn't. There is no such thing as a mild case. I know you are new to the world of Down Syndrome, but don't start your journey in a state of denial." Yep, it really did say that...I may have been off on 2 words...maybe! OK, let's analyze that...

***"he either has Down Syndrome or he doesn't" - NO KIDDING!!!!!!

***"there is no such thing as a mild case" - Okay, I will bite my tongue here and not put in my 2 cents...So just for kicks, I decided to ask my pediatrician (whose background is genetics and development BY THE WAY!) what his take on the whole thing was. He basically said yes, you either have DS or you don't. You either have that extra 21st chromosome or you don't, at least with regular T21). There is no in between (once again, NO KIDDING!)...BUT there is a HUGE range in individuals that start at MILD (yes he said MILD!) to severe. And I mean mild to severe healthwise, cognitively, developmentally, appearance, etc... i.e.-just b/c one may have mild physical features doesn't mean the cognitive delays will be mild also...but it could. Once again, this was not NEW news to me. Can we predict how Jack will be...no! but at the time of the geneticist's visit, Jack APPEARED to have mild features. He APPEARED to have mild health issues (which wasn't the case!), and the GENETICIST(not me!) told me that because Jack was breastfeeding right away, it COULD be an indicator of his cognition. Will his mental delays be MILD...we don't know, just as we don't know if our girls will have delays...we CAN however look at certain indicators...there is NOTHING wrong with that! So to answer the question of whether or not there IS such thing as a MILD case, the answer is unequivically, Yes! and once again, this isn't coming from ME, it's coming from MY research, a pediatrician, and a geneticist! Hmmmmmmmm...I guess they don't know what they're talking about!

***and finally, my favorite, "don't begin your journey in a state of denial" - YEAH, OK!!!! I'll work on that! Do you hear the sarcasm DRIPPING off my tongue?! and anyways, if my way of grieving was to be in denial for awhile, who has the right to tell me not to...

To my wonderful family and friends...the e-mail is no longer posted. I deleted it off of this site so that I could delete that pathetic comment by someone who OBVIOUSLY doesn't know me and I won't take the time or energy to explain exactly what type of person I am...John and I are ready to take on whatever comes our way. We can only live day to day...but I will not let some ignorant person tell me not to have hope for my son's future...not to believe that he may live a somewhat "normal" life (whatever that is these days). To be honest, I worry more about my daughters' futures, not my son's.

Can you tell that I am annoyed? I sat in bed reading that comment the other night, and I kept saying over and over again, "HOW DARE YOU TRY AND DISCOURAGE ME...YOU, WHO DOESN'T EVEN KNOW ME!" Whoever wrote it might have thought they were helping, but honestly, I don't need that kind of help in my life! Maybe I'm overreacting, maybe I'm taking it the wrong way, but whatever it was, those words hit me the WRONG way. Oh well, I don't know who it was or if they'll ever look at my blog again, but even if they don't, I got to vent and I feel better! **sigh**

I got this off another site and LOVED it...Sooooo, in honor of my baby,

The Creed of Babies with Down Syndrome
My face may be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As God in the heavens

Looks down from above

To Him I'm no different

His love knows no bounds

It's those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I've chosen

Will help me get started

For I'm one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I'll do it as you do

But at my own pace

love you baby...

SCORCHING HOT!!!!!!!!!!!!!
What is it about this summer!?!? I am sitting in my house in HB and it is...91 DEGREES in here and 93 DEGREES outside!!! I can't take it anymore! My poor babies are drenched. We have the air conditioning parts in the garage, but John is soooo busy because everyone else can't take it anymore either, we'll have to wait until next weekend. Until then, it's pools, air-conditioned malls(sorry John, you cannot hold me responsible for spending money during this trying time!! :-)), the beach...I'm about ready to move into our air-conditioned trailer!!! UGGGGHHHH...I LOVE summer but living at the beach, I'm not used to living in this heat ALL the time!

My little fish...
my little bella is at such a great age right now...her personality is definitely becoming known by all - strong-willed, independent, daring, a total ham, outgoing...so much fun YET so much work at the same time. we do not go a day without a timeout because we are trying to teach bella that the word NO is not something we scream at mommy, so the second it comes out of her mouth, she goes to timeout! let me say, 6 months ago, she loved timeout, but now, she HATES it! and it is definitely working. we went from about 5 a day to one a day. she knows why she gets in trouble and she always gets up after her 2 minutes are up on the timer, comes and gives me a hug, and says, "I all better now mommy." so bella has definitely "found" herself, but it's so worth it if you look at the big picture because this little one is sooooooo smart, i just know she is going to do amazing things with her life.

so we were at her friend marley's birthday party yesterday and everyone was swimming...now bella has been in swimming lessons for the past month, but she had been pretty hesitant though making progress at the same time...very slow and steady. well, i don't know what came over her, but yesterday at the party, everything clicked all at once. bella finally understood that floaties make you float...novel concept! she was on fire...swimming BY HERSELF and JUMPING OFF THE EDGE INTO THE POOL! i was beside myself! i have been waiting for this day, and now that she feels comfortable, i think she'll be swimming and surfing with her daddy before we know it! love it!!!!!!!!!!

Finally...we have our immunizations...
i don't know if it's because jack got his shots yesterday OR the excruciating heat in our non-air conditioned house(i know...what does my husband do for a living??? he's working on it!), but my little guy has been sleeping ALL day, no exaggeration. he's going on a 5 hour stretch right now, and it's so cute, he has had his thumb in his mouth for the past hour! anyways, we have been having an insurance crisis as most everyone knows, but we weren't able to get jack's shots through our pediatrician. (sidebar: is it me or are doctors offices more and more concerned with money and less and less concerned with patients?)...SO off i went to the orange county public health clinic which was an experience in itself. but the end result was that after waiting over an hour,my son had his shots and bella had entertained everyone in the lobby with her somersaulting and dance capabilities. i can finally feel comfortable taking him out of the house!

we also just got off the waiting list and into a great therapy program down in laguna every wednesday...it consists of 2 hours of therapy (OT, PT, ST, and cognition) and 1 hour of support group for us parents. where is my babe during the last hour you ask? the assistance league of laguna volunteers come and watch the babies! it's fabulous! we also continue to have physical therapy at the house every thursday for an hour (though jack is worn out and falls asleep after 30 minutes!). his PT is so happy with his progress...she thinks he is going to roll from his back very soon...we just need to work on that head control. i will be so happy when jack can keep his head up for an extended period of time!

TEMPTATIONS...
since the DX of jack, i have had many thoughts swirling around in my head...one of these being temptations. let me explain...when bella becomes a teenager, she will have many temptations. the world is telling teenagers these days that it's OK to drink underage, have sex, starve yourself to be skinny, hurt others to get ahead, cheat, lie, etc...obviously my hopes are that the upbringing john and i provide will be enough to overcome these temptations, but when the teenage years hit, those raging hormones take over and with my little miss independent and strong-willed child, who knows? it's enough to make a mother stay up at night worrying about the future...

but jack...my sweet jack will never have that. he won't be tarnished by the pressures of the world. granted i wiil be up at night worrying about many other things that might happen to my boy, but not that...and that is a blessing!

TOO LOUD!!!!!!!!!!!!
LOOK AT THE PRETTY LIGHTS!
I'LL WATCH DORA, THANK YOU!
4th of July 2006
John went over the thirties hump today...yes my dear husband turned 36 on his way down to 40...he celebrated by what else, surfing! In the afternoon, we took the kids over to Brian and Tracy's for swimming, great bbq and illegal fireworks :-). Keeley is at an age where she loved the sparklers and watching all the lights...though she DID NOT like the loud bang! Bella, on the other hand, was NOT having the fireworks this year :-(...she camped out on the couch and watched Dora the Explorer until it was quiet! Now Jack was the most classic. This little munchkin was such a trooper. His eyes were like big round saucers every time a firework went off. His faces will be forever imprinted on my brain!

JACK RYAN CLARK
my boy is 3 months old today!!!! i can hardly believe it. i could sit and stare at his sweet face for days on end, peaceful and fulfilled. my heart is filled with joy with every breath he takes. he is a precious gift that i will never take for granted.

my darling jack ryan was born with something extra special...that third 21st chromosome which is also known as Down Syndrome. i have to be honest...i never had one ounce of information on this condition and when we were given the news that OUR son had DS, my heart sank...for no other reason than the "unknown," that dark abyss of "what nexts," "what ifs, " and "is he going to be allright?" my mind focused on his future...will he ever get married? will he have kids? will he ever live on his own? can he go to college? how delayed will he be? how will he be treated? what type of school will he go to? can he learn to read? will he be healthy? aaaaaaaahhhhhhhhhhhhhh!

tisk tisk! how silly...because no one can predict the future...even with our "typical" children. i don't know for certain how bella or keeley's life will turn out. all i can do is teach them, nurture them, provide a consistent strong family model, expose them to many experiences, LOVE them and have expectations that they will thrive...then let them go on to live the life they choose knowing that i (and john of course!..don't mean to leave him out!) set the foundation for them. well duuuuuhhhhhhhh!!!!!! it's the same with jack. he's our sweet little jack and he will have the same opportunities our daughters will have..he'll just go at his pace. he's a unique special little boy that has his own purpose in life, just like the girls. i look back now on how emotional i was about his future and i laugh...i haven't cried one tear over jack's DS since two days after we found out because i woke up on that second day and went, "OMG!!!! I LOVE this kid! He will enrich our lives in more ways than I can imagine! So get your sorry self up and go on with your life!!!!!!!!!!!" and that's what we've been doing ever since...

so as for mr. braveheart...that little extra chromosome did a number on his heart...the DS i can handle, but the heart defect...now that's another story! jack has what is called an AVSD, which means that the center of his heart, in between the left and right chambers, formed incorrectly. basically, the top and bottom walls and the opening to the left and right valves are all screwed up...so ALL four walls! unfortunately, that means jack will need to have open heart surgery to fix the top and bottom walls and rebuild the valves (a bit trickier). we went in for a check up on monday and the cardiologist was happy that jack had gained almost 2 pounds! WOO HOO! he's 10 lbs. 9 ozs. he did put jack on lasix because his liver was a little enlarged and the lasix is a diuretic that will get the extra fluid off his lungs...and let me tell ya, IT WORKED! his first diaper soaked all the way through while he took a nap and the diaper felt like it weighed a pound! anyways, the cardiologist also told us the surgery will most likely be when jack is 6 months old, so october...it will either be done at CHOC or CHLA...at his next appointment in august, we'll talk to the doc about our options. other than that, jack is doing fabulously. he smiles, coos, rolls over from his tummy, responds to my voice and tracks a toy from left to right. his physical therapist thinks he's doing a great job! Go baby go!!!!!!