Progress

Well it's pretty clear we've been negligent on this, as the following post was actually written back in August, I think, but I never got around to posting it. I'll try to writes something a little more current in the near future. For now, here is the update from a couple of months ago:

Before getting into Natey's treatment, etc. I can't help but give some of the details of what's going on with Blake and Hailey. I remember talking to a friend a couple of years ago who had a sibling who had some major health issues when they were kids. While she didn't resent her parents for it, she was aware of, and still remembers as an adult the fact that she and her brother were essentially left out of the picture for years while her sick sister needed special attention from her parents. I think we have made a conscious effort to continue to devote time to each of our kids, but even with three healthy kids, giving each of them sufficient attention would be a real challenge, and that has become even more challenging under the circumstances.

Hailey is an angel. There's no way around it, she is as sweet a child as any parent could ask for. I may be eating these words when she's a teenager, but right now we're just savoring the moment. She hangs with her brother, and helps with the baby. She started preschool this week, and last night asked me to help her with her homework. Her teacher hadn't assigned her any, but she wanted some homework, so we had to come up with something to take advantage of her ambitiousness.

Blake is a gem as well. He is daddy's shadow right now, in fact last night, he wanted to help mow the lawn, so he held my hand while I did the whole thing one handed. By the end, just from the walking back and forth over our very large back yard, he was exhausted, but he kept reminding me that he was really tough, and he can help daddy. He is all about superheroes, he loves watching the old X-Men cartoons (thanks Uncle Jeff) and only wants to wear his superman shirt, his batman shirt, or his spiderman costume. If all 3 of his favorites are dirty at the same time, he prefers to go naked than to wear something else. He also loves to have us tell him stories. He would rather that we told him the stories of Peter Pan or Aladdin then watch the movie. He has an incredible imagination, so I can only imagine that the version in his head is better than the movie anyway.

While we're not interested in boring everyone with the inane details of Nathan's growth (after all he's still not quite 3 months old), it seems important to chronicle everything that's happened and happening, for our own sake if for no other reason. It's amazing all of the little progress that we took for granted, even when we were first-time parents. I remember with Hailey and Blake noticing when they started to roll over, or sit up, or crawl, but there are a lot of little things in between that seemed such insignificant milestones at the time, that now seem monumental. A few weeks ago, Nathan received his first pamidronate treatment. Pamidronate or "pam" is a drug more commonly used in treating osteoporosis, and is also often used as part of chemotherapy. As us laypeople understand it, it basically assists in getting extra calcium into Nathan's bones. He was infused with 3 doses, over the course of 3 days. Each dose only took about 4 hours to infuse, but since it was his first treatment, we stayed overnight so they could monitor how he responded to the medicine. Thankfully, he didn't have any major adverse reactions. The most common would have been flu-like symptoms,and fever. While he was a little fussy the day or two afterward, he seemed to be mostly pretty comfortable. About 3 or 4 days after his last dose we noticed him starting to do things he really hadn't done before. While laying on his back he would put both feet up in the air above his body. He was moving both arms and legs, and turning his head with much more frequency than he had the week before. While he never seemed to be in pain before, it made us wonder how much discomfort he had been experiencing, since he was now so much more willing to move around.

He hasn't had a fracture since he was about 10 days old, and he is growing so much. He is happy, and getting longer and putting on weight very well. There are likely some hard times ahead, including surgeries on at least his legs or hips, which still don't look great, but for the next few months all we have to worry about is taking him in every 8 weeks to get his pam treatments, and keeping track of all of the tiny milestones.

Our Brave Little Boy

The first month of our Nathan's life has been... a trial to say the least! As some of you may already know Nathan was born with a genetic disorder called Osteogenesis Imperfecta (some people have heard of it as brittle bone disease). Basically, there is a genetic mutation that affects the collagen in his body. While collagen is involved in a number of places in our bodies, the most affected area are his bones, which are extremely brittle and break very easily. OI (as it is called) occurs about 1 in every 20,000 babies born and can vary greatly in severity. We still don't know what the longterm prognosis will be, but are hoping and praying for the best outcome possible. As I mentioned in the last post he was born with a broken arm but that isn't all. Along with the ulnar fracture that was splinted, he was born with a dozen other breaks, including several fractures in both femurs, broken arms, broken ribs and breaks in both clavicles. Since birth, he has had a broken leg, and a broken arm (which ironically enough was actually probably caused by the weight of the splint on the lower part of his arm).

This was of course a big shock, since there was no indication of any problems during the ultrasounds, etc. We only found out about his condition the morning after he was born when the pediatrician came in and told us she was worried that he had short legs, and one of them was actually shorter than the other. It was at that point that we wondered if he had broken his legs because we had realized that he would scream everytime he was moved or jostled.

To add insult to injury, 2 weeks later we noticed that he had swelling in his chest. Our little guy had developed some breast tissue (apparently not terribly uncommon). The doctor reassured us that it was perfectly normal and would go away with time. We thought it was pretty funny, and made a mental note to point this out to any future girlfriends, but otherwise forgot about it. As luck would have it 3 days later we noticed that it was getting bigger and very red so once again we went to the doctor to have it looked at and she said that he had gotten mastitis.Apparently if an infant is in need of antibiotics before 28 days old they prefer to administer them by IV so off to Primary childrens hospital (again) for 2 days to get antibiotics.

Inspite of it all we're doing our best to keep a positive attitude. We feel extremely blessed at the circumstances that have led us to where we are today. Nathan has been accepted to Shriners Hospital SLC. They specialize in orthopedics and are located 20 mins from our house. When we were searching for jobs 2 years ago we were struggling with the decision to come back to Utah but kept feeling that taking this job was the right thing to do, and now we know it was the right thing to do!!!

Nathan is doing great right now, all of his fractures all healed and he hasn't had one in almost 4 weeks. He's a very good baby and is now starting to smile and make cute baby sounds. I'm not sure why he is meant to have this trial but I know like all of God's mysteries, one day we'll know and it will all make sense. I'm so grateful for all the meals and help we have received this last month and I am especially grateful for all the prayers that have been said for Nathan. We know that he has been the subject of hundreds of prayers, and has been put on prayer rolls at temple all over the country. Thank you all so much!

(broken bones might be a big topic in our house right now!)

Nathan

Well here is our Nathan...I know he's a month old already but better late than never!

Here are a few of his pictures from his hospital shoot (We were very impressed by the new hospital pictures)

Nathan with his really big splint.  He was born with a broken arm so they decided to splint it which didn't last long to say the least!

Growing up...

So life has been a lot crazy around here the last few months, hopefully we can say that with all the challenges and changes that we've encountered the last 2 months we've learned a few lessons and grown a little more.




First of all Happy Birthday Blakey!!! I can't believe our little Blake is 2! Where did the time go?  He's growning up so fast (in every way but physically, he's still way underweight and we're working on that).  He knows all his colors, most of his shapes, and is in the process of potty training...we're not 100% yet, but we're getting there.  It doesn't really matter though because he looks really cute running around in his undies!



We tried to make it a great birthday for him despite cutting 2 molars, having an ear infection, and the whole family was recovering from strep.

We've also grown into a new car.  Thanks to Grandma and Grandpa Mills for lending us their van while on their mission for the next 2 years.  And the timing was impeccable because as we were driving to Colorado for their farewell we hit a patch of ice in the middle of Wyoming and wrecked the Camry...blessings come in unexpected ways sometimes.

In addition to all of that we've decided to buy a house...why not!!! We're excited and nervous about the whole process, and definitely dreading the packing (didn't we just do this?) and we're definitely excited for all the extra room we'll have.


We're hoping to be all moved in by this weekend because.... when you get a van and buy a house the next logical thing to do would be to have baby #3!

We had our ultrasound and decided to NOT find out what we're having! I guess we just wanted to save some surprises for the rest of the year... so we'll have to wait until June to find out.