Sunday, April 19, 2009

Skiing With the Boys

We took the boys up to Alta Saturday for their first day on the slopes. They offer a deal on half day ski rentals and then one of their lifts is free starting at 3 so it seemed like a great way to start. Thanks to my college roommate Meri Ann who watched the babies we spent a half day up there. It was great fun and the boys loved it! There was definitely some fear getting on the ski lift for the first time. Derek was in tears with his Dad and I was with Blake. When we got started I asked him what he thought and he said "don't talk". Then a minute later he said "I'm not sure about this" and when I asked him which part he meant - the lift or skiing back down - he said both! But by the end of the lift ride he was enjoying it a bit more and said "mom, it is really peaceful up here." So cute. They were both telling us how much they loved skiing the whole way down. Derek really liked the backpack harness even though he only needed it at first and Blake was his typical comacazie self - he just went for it with all he had! There were not injuries and we all had a blast. Here are some pics from my cell phone:

Thursday, April 16, 2009

Easter and more

We shouldn't have this much snow in April

Decorating eegs

Dressed up Easter morning

Hugging a bunny

Hunting for eegs

The boys at gymnastics. Blake is in red and Derek is in blue.

We went to the children's museum

The boys playing games in Park City

Playing on the luggage cart

Playing at home

Sunday, April 5, 2009

There's small and then there's small!

Its hard to understand how small Brandon and Katelyn really are, even for us because we are so used to seeing them and they are normal to us. A few weeks ago we went to see an Endocrinologist who did not hesitate for a second to tell me they need growth hormones. Their growth hormones had been checked in some lab work a few months ago and had been normal so in our minds we were past that. One more bullet dodged, I thought. I was so surprised at the Endocrinologists' suggestion of growth hormones I really couldn't even articulate any questions at the time. So in the last couple of weeks we've done some research and we've learned a lot about our situation and about growth hormones.

We have had a couple of doctors explain to us in so many words, there is small (like I am) and then there is small (like where they are headed). They are approaching their 2nd birthday this summer and although they are maintaining their own growth curve, they are not making any progress in catching up, which most preemies do by this age. So some of the scenarios we have been presented with is "you're small and may have difficulty doing certain things, but you can function. They might not be able to drive, you may not be able to ever take your family to Disneyland and potty training will be very difficult at a normal age with them being so small." So both Brandon and Katelyn will already have some things that make them "different", but this is something we can help them with.

Growth hormones will mean a shot each day for a long time. Now it is a pin device, not a big needle or anything, but still. This will need to continue until they reach a specific bone age - 13 for Katelyn and 16 for Brandon. A really long time! Although there are some possible side effects, they are all things that can be watched for and will go away when the drug is stopped. So there is no real concern about side effects.

Both babies qualify for a couple of reasons - they were IUGR (intrauterine growth restricted) and were SGA (small for gestational age). So even though they have a normal store of growth hormones they don't have enough to make up for the deficit they started life with. In spite of this medically sound argument, our insurance will not cover growth hormones under any circumstances because it is an exception to our policy. So we are in the process of applying to the Pfizer Patient Access Network. They help people whose insurance won't help or who don' t have insurance but who need the human growth hormone they make. We'll see if that works out. If not we'll have to continue to look for sources for financial help. The endo nurse told us based on their current size the drug will cost $795 per child each month. This will increase based on their size. This is so insurmountable a cost that we have no choice but to leave it in the Lord's hands. We will of course do all that we can to see that it happens, but the outcome will be in His hands - not ours!

Friday, April 3, 2009

Spike the Cat

Here is Spike the cat. He has been living in our backyard for over a month now. He is our pet from heaven, kind of. We were talking one day about what kind of pet we could get for the boys. We don't want any cats or dogs around the babies yet, so we were talking about maybe a bunny. Then the cat shows up. He is super friendly and hasn't left our backyard since we started feeding it. Everyone loves him. But because of him we have learned that Blake has a lot of allergies and we let his asthma get so out of control that he had to be on steroids for over a week. He had a skin test last week and looked like a giant mosquito bit him 25 times! But he stays away from it and seems to be fine now. So we took the cat yesterday to be spayed or neutered (we didn't know which!) and get its shots. They said while he was under they would work on the mats which COVERED his poor body! It was sad!

This is how he came back to us. He is still very traumatized. But Blake says he's cute and looks like a poodle. So we have named him Spike now that we know it is a he. We hope he will forgive us for this cruelty.

Blake's back after the skin test.

Most of the cat stuff is in the shadows on the left.