Thursday, July 27, 2006
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!
Tuesday, July 25, 2006
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**
Saturday, July 22, 2006
The Creed of Babies with Down Syndrome
My face may be different
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!
Monday, July 17, 2006
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!!!!!!!!!!
Friday, July 14, 2006
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!
Saturday, July 08, 2006
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!
Friday, July 07, 2006
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!
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!!!!!!