Thursday, October 7, 2010

When Life Gets in the Way of Life....

I think I may win an award for the absolute laziest, worst, out-of-date, archaic blogger. Would you vote for me?

Well, since April- way too much has happened, so I'll keep it short and sweet (if possible- I've been known to ramble...)

Gavin is almost 9 months now!?! Where has the time gone? He's pulling to a stand all over the house, trying to walk and keep up with his big sister, who just started pulling to a stand a few months ago. Seriously- I have 2 WAY too mobile kids! Gavin has some medical issues, we've discovered over time, but we're taking it 1 day at a time, and getting things resolved. Gav had like 18 ear infections over the last 9 months, so we finally got tubes in last week- what a difference! He's babbling, saying "dadadadadadada"- of course, daddy is thrilled. I won't burst his bubble and let him know that most kids say that word first because it's easier than mama. We'll let him think he's all that and a bag of chips ;).... Gav also had a modified barium swallow in August. I fully expected normal results- we just were sick of the reflux. Sadly, he failed miserable. Penetration to all levels up to honey thickness. What a shock! So, we began simply thick and it was TERRIBLE! He had such terrible gas and stools, I actually had to go to Bath & Body Works and get portable sprays for my car, otherwise I would gag and vomit. He was drinking like 80 oz per day too, just going right through him. So, now we thicken with oatmeal... It's been going fairly well. Today we had Gav's GI scope. Again, expected everything to be normal, maybe some signs of reflux... I was wrong, AGAIN! I don't think I will go into any other procedure with expectations- I'm clearly doing this wrong!! Gav has abnormal esophagus bumps, nodules, and folds. Apparently, they did 3 biopsies, and we'll know more next week, but it looks like long-term allergic reaction. Unfortunately, we're already on the most hypo-allergenic formula on the market (and the most expensive!), Elecare. Our GI explained we will probably have to do a complete allergen workup to figure out what specifically is causing this, and then if it is in his neccesary daily food, find a medication to eliminate it, if possible. Good times!

Grace is HUGE! She's so tall!! Sadly, she's only 19 lbs (Gav is 17.8), but we're working on weight gain. She's eating by mouth, but we can't seem to get her to take in enough calories. She gets her night drip for 12 hours, at 30 calories, 2 ounces per hour. She had a cath last week. Conduit looks GREAT. Wide open. Still leaky, but they typically only replace if there is narrowing. Her pulmonary artery pressures were getting higher, and the viagra wasn't making much of a difference. The cath was to check pressures and intervene as neccesary, or possible. They tried ballooning her left side, unsuccesfully. They stented the left pulmonary arteries- success! They ballooned the right, and it helped a tiny bit, but the arteries are so close on that side, that if they were to stent, they'd lose an entire artery (collapse). They may take the route at a later date, but for now, they left it at that. The cath was supposed to take about an hour- 6 hours later, with unexplained bleeding in the surgery, she was in recovery. Grace is nothing but normal when it comes to cardiac procedures, so frightening! The next day, true Grace style, she was up and scooting, as if nothing had happened. Crazy resilient girl! Pre surgery her pressures were at 60, now they estimate them to be at 35- improvement! By Christmas, fingers crossed, we should be off all medications (viagra & aspirin).

Grace's continual "side-effects" of surgery, ie. complications, have us worried, frustrated and concerned. After talking with other heart mamas, we decided to look at other hospitals. Right now, Dr. Handley @ Stanford (Lucille Packard Children's Hospital) is looking at her records and putting together an operative plan. He's AMAZING and if there are extreme complications, Stanford is where she'll need to be. (I refuse to mention the "T" word...)

We moved into a bigger home- thank God! Our other home is still on the market, but we've got an approved short-sale, so only time will tell. Hopefully this whole thing will work in our favor, and we'll be able to buy again soon.

I considered going back to school, but with the kids and their appointments, therapies, etc. there is no time left. Which is fine, I'm okay with being home with them for a while longer. We'll see what time brings..

There is a TON I'm leaving out, I'm sure, but we'll catch up over time. Here are some recent pics of the kiddos- so big!!

My computer is being crazy stupid, so I'll post another blog with them... UGH!

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