Wednesday, July 23, 2008

CRAWLING!!...Oh Yeah, and Labs

Watch out!! Keegan is crawling!! It's his own unique style of crawling, but it is the real deal nonetheless! See it here. He keeps one leg under him in "traditional style", but then he brings the other leg up to use his foot. We've coined it "peg-legging". What would you call it? His best incentives for crawling are cell phones and remote controls. We found old versions of both that have officially been designated Keegan's. Still, crawling is simply a mechanism to get him to the nearest place to stand. The most hilarious thing about his penchant for standing is his determination to do it no matter the price. This often results in his feet waaayyy far away from the desired piece of furniture. Then he takes up to 10 minutes to slowly inch his way forward to success. Dare we call him stubborn? That wouldn't run in the family, would it? ;)

Ok, now for labs. Because we needed to run more tests, he had to have another full blood draw instead of just a finger-prick. Keegan now has two little bruises, one for each arm. The good thing is no more more labs until August!! Transplant coordinator Stephanie called and asked if I was ready for a good laugh. His immunosuppressant levels (prograf) were too high!! So, we inched that down a bit. The iron study was ok. He is handling iron well; he just is going to need more of it to stay there.

Keegan is still not eating well. His formula intake is down, and he has all but reached total refusal of anything at all in his mouth (except toys or pacifiers). His top center teeth still haven't completely broken the skin, but you can see they are right there ready to make their appearance. We are going to patiently wait out these teeth, and then we will reassess his food situation. I know many of you are thinking "that's just typical baby." You'll just have to grace me my neuroses on things like this. Not eating is a huge heart red flag. I know his heart is fine though (thanks to clinic last week), so I'm learning to accept that these things may be normal. Still, the doctors are cautious about his weight, as are Gray and I. He is nowhere near being on the weight charts, and we just want him to be healthy.

That's all for now. Our house is a complete disaster zone since they started ripping out the shower in our master on Tuesday. It will probably be another week or so before it's all finished. The blessing in it is that there was no mold, no studs had to be ripped out, and no sheetrock had to be replaced. Whew! There was a lot of water, but it was all in fixable ways. The workmen said that had we continued showering there for even a few more days, we wold have had a disaster on our hands. So, as always thank you so much for keeping us in your prayers. We still haven't replaced the computer, but we were finally able to get my old laptop to recognize the camera. That means more pics of the Bug!

Thank you for checking in on us and continuing to remember Keegan in your prayers. We would love to hear from you too. Take care, and we'll update again in a bit.

Thursday, July 17, 2008

Clinic Update

We had a pretty good report from clinic yesterday. Coming off of a hard weekend, it wasn't the best idea in the world to not feed the poor Bug as he woke up. He took about a half of an ounce of pedialyte before he realized it wasn't his formula and gagged. Unfortunately, he couldn't have a regular bottle due to his sedated echo. He cheered up when Mamie and Aunt Alex showed up to escort him to his appointment! We started off in the lab for a blood draw, as always. Again, we had success on the first try - yeah for the phlebotomists! One of our fellow transplants, Natalie (22mo), was also in the lab though, and I think Keegan cried a bit more because he could hear her so upset. We had a slightly better blood report than last month. We still went up on his main immunosuppressant (surprise). His white blood cell count was still down, so we will not start the other suppressant back up. It depends on who you ask, but I like the fact that his WBC is low - that means that he does not have a lot of "fighter cells" present, i.e. his body's not fighting the "foreign" heart. From a transplant perspective though, some doctors still have a hard time accepting that a body (even a baby body) would not reject a transplanted organ. Those doctors think it's more important to be on the immunosuppressant which Keegan has stopped for now. Others (like me) see it as a promising glimmer of hope that Keegan may not need as much (or any) suppression as he progresses because his immune system has adopted the new heart. Anyway, his MCV levels were still a bit high, so we will stay on the folic acid supplement. He is still indicating a bit of anemia, despite being on an iron supplement, so we will have a complete iron study done next week. This will help us determine how much iron is really in his blood and what might be causing the anemia. In better news, we stepped down his steroids in anticipation of stopping them altogether next month. YEAH!

Next, we were off to xray. Again, we had some newbies. This made Keegan quite unhappy because he was looking forward to seeing his "girlfriends". We had to repeat the xray due to his hissy-fit, but he made it through. His xray looked great according to Dr. Barnes. Then we went back up to clinic for his sedated echo. We were hoping to skip sedation this month, but due to all the fussiness and general un-Keegan-ness of late, we all felt that good, clear pictures were more important to ensure there was no heart-related problem present. Nurse Aren was a rockstar and got Keegan to take every drop of the nasty, nasty, nasty sedation medication. Keeg was out in less than 2 minutes and stayed asleep for the entire echo and EKG. His function looked great according to Dr. Barnes on both of those tests too.

On a not so great note, he had no weight gain in the last month. We went to the pediatrician Tuesday to make sure he didn't have an ear infection or anything that would have caused his recent upset and to make sure he was safe for sedation yesterday. At the pediatrician, he weighed a little less than half a pound more than last month. The clinic scale read exactly the same as last month though. The transplant team and I came up with some strategies for working on his eating, and we'll watch his weight closely. We're still hoping that he'll hit a growth spurt after he is off the steroids in a little over a month.

We saw Dr. G and Dr. Leonard yesterday, and they were both so pleased with Keegan's progress. It is always such a blessing to see them both. Not much else going on here. Keegan will have another blood draw next week to watch his immunosuppression and his iron levels. We'll post again then. I will try to get some new pictures up soon, but not having our regular computer has made picture-posting a challenge. Keep your eyes on the picture site for new ones soon, and we will be posting more info here about the fishing tournament soon. We hope you are all having a wonderful week, and we hope you have an even better weekend. Thanks for remembering Keeg!

Sunday, July 13, 2008

10 Months Old

Keegan is 10 months old!! Can you believe it?? He'll be a full year in less than two months!! OH MY!! He has certainly had a full 10 months, and we have been blessed every second of it. I apologize for the lag in posts, but we have not had the best week. Keegan is getting all four top front teeth at one time. The side ones are coming in first (have actually broken the gum), which results in names such as "Vampire Baby", "Fang", and "Snaggletooth". The latter being stolen from Rusty, who happens to only have one remaining upper incisor tooth (long story). I also think Keeg has hit a little growth spurt. The two combined have given us a rather grumpy Keegan for the last week. It all culminated last night into one of his worst bouts of fussiness ever, and we were about 10 minutes from heading to the Children's ER - what a way to spend a Saturday night. Then, he calmed down and slept decently overnight, so we were saved the trip. Today has been a little better. Hopefully, our normal, happy Keegan has returned for awhile.

This past week has been just generally bad. Gray and I are showering in the guest bath until our master shower is gutted and fixed. We have a so much water behind the tile of our shower that the carpet in our bedroom is wet. It's all due to a poorly constructed shower. Of course, our insurance only covers "mechanical problems", like pipes bursting and leaks. The leak detection company the insurance sent out said there was no leak, except around the drain - which of course is explicitly excluded in our insurance policy! AHH! Obviously, a bathroom renovation was not in our budget, but we will get through. Other fun things that happened this week: (1) possible flea infestation in our house (turned out to be springtails, innocuous little bugs but annoying nontheless), (2) a near broken nose for me when my heaviest cookbooks and their iron stand fell on my head off the top of the fridge, luckily I was wearing a ball cap and only had a bloody nose, AND drumroll please...(3) our computer is officially dead, another item not in our budget. Luckily, my old law school laptop works if constantly plugged in. It's extremely slow and loud. We have no access to our pictures and are not even sure if our camera will be recognized on this laptop. In other words, postings may be few and far between for awhile.

We will post again after clinic on Wednesday. We have an echo this month, and our first labs in three weeks. Keegan is crawling backwards, cruising everywhere, and can get himself to sitting from his tummy. He is talking constantly. He'll say "dadada" when I go to change his diaper and "mamama" when Gray goes to do it. He still keeps us laughing, even on the bad days. He's struggling with his food again, but it may be due to the teeth or growing pains. Please keep him in your prayers that his appetite returns and that he gets a good report from clinic this week. Please also keep my sister in your prayers, as she has just finished her fourth knee surgery. We are hoping for a better week ahead, and we pray for patience and strength as we face the obstacles ahead. Thank you for your continued support and love for Keegan. We could not get through without each of you. We hope you are each doing well and that you have a great week!