Well, he's 22 months and we've been waiting so long at this point I was surprised at my own reaction of total disbelief. But it's true!!!

Yesterday josh and Q were home while I went to yoga. Josh gave Quinn an apple and said the word, and Quinn said, "a-poo". He said 'apple!!! And he did it again when I came home from yoga (he loves fruit so he always wants it) and I gave him an apple. I asked if he wanted an apple and he said "a-poo". I was stunned! He said 'apple'! He said 'apple'! I can hardly believe it, he finally said a REAL word besides 'momma' and 'daddy'!!!

I just HAD to share!!!

Mon, 07 Oct 2002

Quinn will be the big *2* this month, on the 21st - I am amazed and all teary-eyed all the time thinking about it. He is such a happy, brilliant, vivacious, fun little guy who NEVER ceases to amaze and delight me every day in every way - I even find his tantrums endearing, if you can believe that - "look at how he is asserting himself, boy, he really knows what he wants!" LOL I just love him SO much.

I sometimes think about Spencer and Wyatt (for those of you who don't know these were 2 beautiful little boys who lived here in St. Louis, had HLHS, and died after the Fontan), and Quinn...I think about that Fontan, looming ahead like a huge dark cloud over us, it scares the bejesus out of me, I just wish we could skip it altogether. I keep saying to Josh, "does he absolutely HAVE to have the Fontan? Does he really NEED it?" There's just so much space in between them, that you get into this "normal" life, sans surgeries, and you cannot BEAR the thought of ever having to go back there again...into the unknown...

And I just hug him tight and LOVE the time we have. I don't want anyone to think I go around brooding about this all the time or anything, just the birthdays make me SO grateful to have him and also reflect on the beauty of the angels we have now looking after our little ones, their heart buddies. I'd like to think Spencer and Wyatt are out there holding the gate closed - "no more of you allowed!" Bottom line is I am terrified of the Fontan, and glad (in a way) we get another year to wait for it.

Okay, I digress...You asked about Quinn's G-tube and eating. Well, he does still have the tube, AND right now, it seems what goes into it is more supplemental than anything, because he eats a good amount of food.  It's about 50/50 at this point, actually. We eat a mostly whole food diet, very little sugar, so what he gets is all good and healthy stuff either way. He does have his mommy's sweet tooth, though, and he LOVES his chocolate and ice cream! Good thing we don't have them very often. But he loves PB&J sandwiches on whole grain bread or even on graham crackers, raw carrots, cooked peas and broccoli, eggs, whole milk yogurt, fruit of about any type, chicken, turkey hot dogs (ew - we are trying to find a similar alternative to these, maybe tofu or veggie dogs), um...chicken nuggets, pretzels, Pirates Booty, cheese crackers...okay, you get the picture at this point. He loves food, so that's a HUGE YAY for a G-tube fed baby. I THINK we're probably going to keep the tube in until after the Fontan, just to be safe...I think, unless something changes big in the next year, which it very well could.

So all in all, he is healthy as can be, he doesn't get sick (other than his heart), no colds or flus or ear infections or anything (knock wood). He is getting stronger and stronger every day, and his stamina is improving - he will lift heavy things and carry them, huffing in his oh-so-cute way, and grunting all the while, but he is so PROUD of himself when he does this, so we totally encourage him to do it. His PT loves it, too.

He is STILL not saying any words - "apple" was a fluke of sorts, as the very next day he stopped saying "a-poo" and turned it into "gya-gya", and hasn't returned to it since. He IS becoming more and more vocal, though, and more and more intentional about what he is trying to convey with his sounds, so I can see it coming. He just, as always and with everything, has his own pace at which he does things.

We are going to do a train party for his birthday this year, as he is obsessed with all things wheeled, particularly trains. I am going to make a cake that looks like a train, and I am very excited about this - I think he will love it. We also got him a wooden train set and a table at Sams that will become a train table and has storage for stuff underneath. I can't wait to give it to him...I made Josh hide it all so I wouldn't be tempted...LOL

Sat, 02 Nov 2002

Well, Quinn had his second birthday, he is now officially 2 years old! 

How far we have come, and how much farther to go... In addition to having his birthday, we also saw his Ped. AND his PC this week. He is 35.5" tall and weighs 27 pounds, give or take (depending on which scale he is weighed on). His Ped was very pleased with his growth and said that whatever we're doing, it's working, so keep doing it! We are also very pleased with his growth and development. 

At the PC, his sats are about 77 screaming, not too bad - he is ALWAYS screaming when they take his sats, so we really have no idea what they could be normally. But we'll take 77. His heart shows no change - still enlarged, but no change since January, so we're happy with that. He wants a sat reading in about 4 months, but we don't have to go to him if our Ped can do it, which I think he can. he also mentioned we will be scheduling his cardiac catheter when he reaches about 30 pounds, and doing the surgery a couple of months after that. According to his growth chart that will be about when he is 3, and believe me, I am not hurrying it along at all. Ick. 

Other than his heart, though, Quinn is as healthy as can be - he doesn't get sick and has not ever had an ear infection or even a real cold. The most he has had were slight sniffles and runny nose for a day. So hopefully we can keep up that trend. I don't know about your kids, for the other heart parents out there, but Quinn is especially sensitive to the doctors and nurses and pretty much hates all of them unless they leave him totally alone. He cries like he is being hurt when they listen to his heart or take his BP, and I know it doesn't hurt, and it's scary to him, but its so heartbreaking to listen to. He absolutely cannot be comforted unless they go away and leave him alone, and then he is totally fine. But X-rays and EKGs, forget it. I think I hate them as much as he does, simply because its torture to him - he has to be held down and its uncomfortable and cold and he doesn't know who these people are and why they're hurting him. And don't even get me started on blood draws...(Which luckily we didn't have this time). I pray that as he gets older and can understand our explanations more, it won't seem so scary to him. 

His birthday was great, though, and he got a lot of good loot - 3 trains, which he loves and plays with incessantly, some Blues clothing, the book Hand Hand Fingers Thumb, which he loves and will have me read 3x in a row, a motorcycle, and some trucks and cars. He is all about the vehicles right now, anything with wheels, so spends his days and nights playing  with all things wheeled, and sometimes allowing us to read him some books about trains and trucks and monkeys, as well. Oh! He also got a little tent that he can go inside and hide, and the cats like it, too, which makes it even more fun for him, because he chases them out of it giggling all the while. We're entering our hibernation stage, as cold and flu season fast approaches, so we don't get to go outside as much or see as many people. Its a good thing he has all this great stuff to play with!

Mon, 03 Feb 2003

Well, now that I've prefaced it, I know I have to let you all know how it went. We are home and Quinn is sleeping off the sedation. It was a LONG visit today - not the normal 2.5 hours, but a whopping 3.5 hours today. We started off by getting a blood draw - always a great way to begin a visit - but did it that way so we would still be there when the results were back.

Looks like his hemoglobin is holding steady at 15. For almost everyone out there, that means its looking good, not too high - they will worry when it reaches 18. If you REALLY want the technical explanation, when there isn't enough O2 in the blood, the body produces more red cells to compensate. Of course, THOSE cells have no more O2 than the first ones, but the body doesn't know that bit. Thus the rise in hemoglobin levels. When it's REALLY producing more red cells, it's time to worry and get to some surgery.

We also had an echo - thus the sedation. He was doing really well considering he went WAY past nap time, but he WAS pretty irritated, so we decided to just let him sleep through the whole thing. SO he drank down (forcibly, NOT fun) some chlorohydrate, almost vomited it back up (there were several moments of gagging before he finally just kept it down and dozed off). So we were able to get a GREAT echo of his heart and since my attention was not on keeping him appeased through it, I got to REALLY watch the echo myself and grill the tech for lots of good information. It's really an amazing thing to actually be able to physically see, albeit in black and white, the inside of your own child's heart while it's pumping away. Fascinating and freaky at the same time.

So while we had him sedated, we went ahead and got the EKG, as well - might as well utilize this sedation while we can and get as much info as possible. EKGs are usually the worst. For non heart parents, they stick all of these REALLY REALLY sticky leads on their bare skin, and attach wires to them to monitor the heart. It takes no time at all, except if they move at all, it messes the whole thing up, and they have to keep trying to get a good reading while the child is screaming and thrashing about. And as if that isn't bad enough, then they have to TAKE THE LEADS OFF. Ever pull a band-aid off of skin on your chest or under your arm? Imagine over a dozen of those, one at a time. Yeah. Now you understand why we like to do it sedated. Although since it IS such a quick process, there really isn't enough reason to use sedation for it in and of itself.

So we got all that information, then waited for Dr. Balfour to read it. His tricuspid regurgitation is getting worse. It's now moderate to severe (the scale being mild-moderate-severe). This isn't something that is particularly detrimental right now, but long term would very well be. It means that physically he cannot push himself as hard and that exercise is more difficult, he will tire more easily and sleep more.

He already is exhibiting this, we have noticed a slow and steady decline in his energy over the last few months. His naps have gone from 1.5 hours to 2-2.5 hours, sometimes as much as 3.5 hours on some days. His bursts of energy tend to only be right after sleep, and only for a short time. The rest of the time he tends to be rather snuggly and prefers quiet activities.

The highest O2 sat we could get was 75 - quite low compared to his usual 80-82, but they're not entirely sure that wasn't because he was moving and fussing a lot. But that could also be a good sign, because it could well mean that he isn't making new collaterals. (For the laymen, those are like little blood vessel bridges that the body makes to compensate for lack of O2 in the blood. Basically they're rogue circuits you don't want that will have to be coiled to close them later.)

We'll be going back in 2 months for a weight check (today he was close to 30 pounds and 36" high). He needs to be at 15 kilos for surgery (35 pounds roughly), and he's currently 13.6. They expect he'll make it to 15 in two months, given his curve. Then we'll likely have his cath a month after that, then the Fontan maybe 2 months after the cath. So that's April 3rd for the next visit, May for the cath, July or thereabouts for the Fontan. Earlier than expected, but I already thought it would be earlier than expected, so in that respect, its about when I expected, I suppose.

So that's over with, and now I expect I'll spend the next two months waiting, thinking constantly about the Fontan, until we actually HAVE the Fontan, when I will make the biggest call for prayers I possibly can, then hold my breath until its done. Expect me to have a full head of gray hair after July. Although I will then dye it, so you'll never know ;-) But when you see me with purple hair, you WILL know....

Sorry this was so long winded, but you all know that about me by now, right? If you've read this long, thanks! I keep all of you in my thoughts and prayers - after all, its nice to have things to take my attention off of the looming Fontan....

Mon Feb 10, 2003

Just when we thought it was safe to back outside....

Quinn has just today come down with a stomach bug that has been around here for a month (Josh and I haven't gotten it, but many other people we know have). I think he got it from my mom, but I love her anyway. She came down with it the day after being with him, so she had no idea. He is sleeping now, and has been vomiting all morning, poor little guy. And diaharea (sp? - my spell check didn't know either) and a little temperature. SO I am watching him (I already talked to his ped. nurse) and making sure he doesn't dehydrate.

Thu Apr 3, 2003

So today Quinn had a cardiology appointment to get a weight check and to schedule his cardiac cath next month. Weight was 32lbs, height is 36 1/4".

So as not to keep you in suspense, the date is May 14th.

Quinn screamed through his WHOLE appointment. He was ballistic. We couldn't get sats or his pulse or his BP or anything. He was screaming like we were torturing and hurting him, and just with this terror...It broke my heart to hear him scream like that. I kept smiling, but on the inside I was in tears, and it was all I could do to hold it together, listening to him scream like that.

He got so mad at me after awhile he wouldn't even let me pick him up to comfort him. He just tensed up when I touched him, and that really hurt. Dr. B tried and tried, cos we NEED sats and he needed to listen to his heart, it's getting so close and I want to know are his sats lowering like they should...But no such luck. No one could get near him to do anything. So we have to try and go back another day to get his sats. We don't have to make an appt or pay a co-pay, we just have to get those sats. Sheesh. Maybe when it isn't so close to naptime, I hope.

Otherwise, the weather is beautiful and we've been hanging out at our little neighborhood park a lot on the mornings. Quinn is a happy guy most of the time, just don't take him to any hospitals! He is losing energy little by little, we can see he is ready for the Fontan soon.

He is still not "talking", but he is doing well with signs and LOVES his "Signing Time" DVD. He is making approximations of words in his way and I understand what he needs and wants, even if Daddy and I are the only ones so far. We're getting there, though. Physically he is doing well, we're down to OT and PT only once a month, for consults. I am more in love with him than I could ever possibly convey, and life is sweet.

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