Thursday, July 30, 2009

Kireta and I just got back from the cardiologist today. We remained optimistic on Logan's oxygen levels because his coloring looks so good. Unfortunately, the echo cardiogram did not reflect this. Logan's oxygen levels fell to the high seventies, about a 10 point drop in three weeks. Also, the echo confirmed what we had been fearing; that his pulmonary artery has stayed the same size, failing to grow and holding in steady at 6mm. His pressure-gradient has now risen to 76% due to the muscle beneath the pulmonary artery growing.

What this means for us is that Logan's surgery will be much sooner than expected. We were hoping Logan could make it to the 6-8 month mark, but now it looks like it'll be before he reaches 4 months of age. Dr Carrie Villavincencio (our cardiologist who is wonderful by the way) would like to see Logan in two weeks, and we'll determine when he'll need surgery. Currently this could be as early as late August, or as late as late September. We would like to see him go to at least 4 months of age, however, Dr Carrie doesn't want to risk flu season. If you've been reading the blog earlier on, you'll know that he had a 50/50 chance at having a valve-sparring technique done, as opposed to the transannualr patch. At this point, however, since he is still very young and small, his odds have decreased to about a 20% chance of having the valve-sparring technique. (This requiring only one surgery and the transannular of having at least one more between the ages of 3-14). Today we also learned that Logan's valve ABOVE the pulmonary artery (called the supra valve) is also narrow. This means that he has narrowing in all three places (the muscle beneath the pulmonary artery, the pulmonary valve itself, and the supra valve above). We're told this is also common, but nonetheless contributing to his high pressure-gradient. Now for a bit of good news. Logan is up to 9 lbs, 10 oz, and is 21 3/4 inches long. He's growing like a weed, and is doing great with his "tummy time" and other physical therapies. We've decided to go with Dr. Max Mitchell as Logan's surgeon. He's very bright, and has been practicing for 22 years. He's a bit younger than the other chief surgeon at Children's, but we hope this will aid Logan's chances for the valve-sparring technique. Also, by doing the surgery earlier than expected, Logan will not yet be rolling over, which will certainly aid in his six week recovery. We can expect Logan to be in the hospital for one week after surgery prior to coming home. Another great piece of news is that he will not require any life-long drugs, only a bit of Lasik for a few weeks following surgery (which will aid in removing any fluid from his lungs.) Also, if Logan does require the transannular patch, we're hoping that he'll be able to hold out long enough for his second surgery until the technology comes to the USA to do the procedure through his leg (as opposed to another open-heart surgery). Currently in Europe they are doing this procedure through the leg in adults.
Again, your thoughts and prayers are most appreciated!!! Remember, the success rate for this surgery is extremely high, and we know Logan will get through this with God's Grace. Thanks again to all who read this! We'll keep you updated...

Thursday, July 23, 2009

Ok, finally a new update on Logan! Sorry for the delay in news, it's just that we've really just enjoyed Logan being a baby! He is so good for us! Aside from having a little temper, his temperament is excellent! He is growing like a weed, but since we haven't taken him back to the doctor's office since 7/5 we don't have a new weight yet (last time it was 8 lbs 5 oz). His coloring is still great, and aside from losing hair (he's still cute though:), he's never looked better. He's definitely more "solid."
Yesterday, early intervention came out to the house to evaluate Logan. Although Logan automatically qualifies for state services given Trisomy 21, the initial eval must still take place. Three women came out, including Laura, his service coordinator, Jenn, his occupational therapist, and Amy, a nurse. Jenn and Amy won't be coming back, but Laura will be our coordinator for 3 years, helping us evaluate Logan's needs.
Up until the age of 3, Logan gets free therapy from the state. From everything that we've read and everybody we've talked to, early intervention is absolutely critical to advancing Logan's development, and helping him advance as much as practical. Again, Logan will more than likely learn things at 1/2 to 1/3 the rate that Noah will learn things. Things such as sitting up, crawling, walking, talking, etc. We were really happy with the initial visit, and can't wait to help Logan as best we can.
Jenn was extremely impressed with Logan's muscle tone (that's my boy!). She said that not only is it fantastic, but that he's actually above normal children. This is remarkable given that both down syndrome babies and congenital heart defect babies have low muscle tone. He was able to hold his neck up on his stomach for quite some time. She was extremely impressed with his leg strength, and we remain optimistic that this will help him develop gross motor skills at a good rate. Jenn would like his short term goals to be able to prop himself up on his elbows while on his stomach, and to be able to roll over in 3 more months. (This actually puts him very close to a normal baby).Jenn also tested his vision and awareness. Again, Logan excelled. He is very aware of his surroundings, and turns his head to where he hears sounds. He also was able to focus on objects in front of him. I was a little worried about his vision previously, because I thought he might have Nystgmus, because his eyes seemed to jerk a little, but they don't believe he has this at this time. Jenn also commented at how mild Logan's down syndrome's features were. In particular, she was keenly aware of his tongue. His tongue does not protrude (unless of course he wants to push it out, which he does alot like most babies). This hopefully will help his speech development in the future, and again we remain optimistic.
At this point, since he is so young, Laura will set up bi-monthly visits with a physical therapist until approximately 3-4 months of age. At that point, we can re-evaluate his needs. Laura explained to us that we can have more or less treatment depending on our needs. Personally, Kireta and I would like to get the maximum amount of help available to help Logan, which will eventually be a speech, occupational, and physical therapist once per week, each for 1 hour.

I was originally very worried about early intervention billing our insurance. It used to be optional to use your insurance to pay for EI, but that recently changed in the last two months. It is now mandatory that developmental pathways (EI in Colorado) must TRY to bill the insurance companies. I had Laura do some research, and she found that Cigna (our insurance) was one of seven that had a large trust fund set up. They will indeed cover the cost, however, it will NOT affect Logan's lifetime maximum! (Currently 1 million) I was concerned because Logan will need a minimum of one open-heart surgery, as well as ALOT of therapy. He could quickly reach this maximum if the state billed him for these services. However, the way Cigna has it set up, this treatment will not affect his yearly maximum, and at that rate will not even cost us a copay!

Here's a great shot of the boys with Grandpa!
Also, Gruncle Rand and Graunt Bette came out to visit us from Cour de Lane Idaho! It was a pleasure to have them out for a few days! We also got to see our Cuzn Katie and her husband Randy P!

Logan's next cardiologist appointment is on 7/30. At that point we'll be taking another echo cardiogram, so please pray specifically that his pulmonary artery is growing!

As always, thanks for your interest and your prayers! We'll give you another update after the 30th!

Friday, July 10, 2009

Logan with Grandpa and Grandma
Hanging out with Grammie and Auntie Ash

Yesterday we took Logan to the Cardiologist. He is up to 8 lbs, 5 ozs!!! What a little eater! Kireta is doing a great job at feeding him every 3 hours, although we now allow a 5 hour window for him to sleep at during the night. His oxygen continued to remain high, at 88. (Remember, if it gets to the 60-70s range, we'll need to do the surgery early). They performed another echo-cardiogram and found his pressure gradiant in the pulmonary artery to be 64%. This is also a good sign, as he was born at 60% (The higher this number goes, the lower his oxygen will go, so they pretty much go hand-in-hand.) The only troubling sign was that his pulmonary artery did not grow as Logan has grown. In fact, it has remained the same at 6mm. Please pray that this grows as it will determine whether or not they are able to do the valve sparring technique during surgery, thus (hopefully) requiring only one surgery. (If not, the transannular patch will be used and he'll need 2-3 surgeries). That being said, Dr Carrie doesn't need to see him for another month, so that's an encouraging sign:) For now, however, we're thankful that his oxygen remains high, he's a healthy weight, his coloring looks great, and that he's yet to have a "tet" spell. Also, his muscle tone is great! He is so strong! This will help him with his motor-skill development.

This week we made contact with a number of down-syndrome groups. We are in the process of setting up early-intervention, which is a free state program to help Logan develop early on. Depending on his needs, he can get a Speech, Physical, and/or Occupational therapist on hour per week, free of charge. They will come directly to our home, which will be a huge benefit! We'll know what Logan needs in the next few weeks, and we'll keep everyone posted!

This week we also contacted one of Lisa's good friends, Michelle Kry. Michelle had two beautiful twin boys, now 14, who both have down syndrome. She will be visiting this Saturday with her husband, Kelly. Michelle has also put us in touch with the Mile High Down Syndrome League (of which her husband was president a few years ago). In the next few weeks we'll be in touch with support groups, etc, that will really help Kireta and I understand as much as possible about DS, as well as the best ways to educate and raise Logan.

I'd like to share a poem that we first saw in the doctor's office, and then later in many books. It's called "Welcome to Holland" by Emily Kingsley

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"HOLLAND?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guide books. And you must meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Thanks again to all who care enough to read about our Little Logan! Your thoughts and prayers do work, please keep it up! That's all for now, we'll keep you posted!