18 August 2010
11 August 2010
Well, this is not going to be the most upbeat blog entry. We have some not so wonderful news to share. First off, let me preface this with Duckie, J, and I are fine and healthy. Jarvis is currently healthy and just fine, however we have discovered a name for a condition he has had since birth.
I’m not sure if any of you noticed, but from the first moment we met him in the hospital, we noticed that Jarvis had an unusually long thumb. We joked about it often, and many people noticed, but we just assumed the muscle between his thumb and first finger must not have been fully developed yet, and so his thumb just appeared long. He has been having well-baby check up every 2 months and has been progressing physically and developmentally right on time.
He took a bit longer to start using his thumb than normal (not until after 3 months), but nothing of any major concern to warrant me bringing it up to a doctor. It wasn’t until a family member (who doesn’t see Jarvis as often as J and I) did a little research on their own, that we realized that he might actually have a condition with a name.
We have identified that Jarvis has a genetic abnormality called Triphalangeal Thumbs. A normal finger has a total of 4 bones (one in your hand and 3 on the finger) and 3 joints. A normal thumb has 3 total bones (one in the hand, 2 on the finger) and just 2 joints. Jarvis’ thumb has a total of 4 bones and 3 joints, it mimics his pinky. We did a bunch more research and looked at photos and felt confident to contact a doctor at the clinic here on base. He has contacted a friend who is a geneticist since it is a chromosomal abnormality. We took x-rays today to confirm the condition and check for deformities of the bones. We had a chance to glance at them, and we can confirm that he has an extra joint and bone on each finger. As far as bone deformities go, we will be meeting with the doctor to analyze the x-rays at a later date.
One of our biggest concerns after doing research is that Triphalangeal thumbs is very often an indicator for many other serious conditions, so the geneticist has recommended that we do some further testing. It can be a standalone condition and not be related to anything else, but it is worth checking. We will be doing a blood test for a syndrome that doesn't develop until later in life, and we will be traveling to Bismarck to see a pediatric cardiologist for an ECG, EKG, and chest x-rays to check his heart for any issues.
As long as he is not diagnosed with any problems or bone deformities, we can expect him to continue to progress as normal. He will most likely need some extra help learning to write and use his thumbs for fine motor skills (pincher grasp, etc), but should have no trouble learning them eventually. His thumb will always be longer than a normal thumb, most likely anywhere from a ½ inch to 1 ½ longer and it will continue to be noticeably different. Assuming there are no bone issues, we will not pursue surgery as an option, it’s unnecessary.
We are keeping a positive attitude, as many serious syndromes can already be ruled out based on his excellent physical, mental, and emotional health. The tests are more of a precaution. We wanted to share this information with you. It is a dominant inherited trait, but can also be spontaneous. There is a 75% chance he will pass it on to his children. There is a slight chance that Duckie will have the same issue, as it is possible either J or I passed it on, but we will just have to wait and see.
I truly think it will not hamper him in the long run. We are imagining a little 8 year-old running around happily telling the world he has “mutant” thumbs! And who knows, he may be a world famous pianist or quarterback with his excellent reach!
We love you all and will keep you updated on any developments!
J, C, J, & D
08 August 2010
It's amazing how much faster these older months tick by compared to the first few!! Those sleepless nights made the days so long!
But our little boy is getting bigger everyday!! He was 7 months old yesterday... quite amazing to me! He has really grown into his personality and is a joy to be around!
- Got his first tooth a few days ago!! It's still barely visible above the gums, but, let me tell you, I can feel it! (that's how we found it!) He's been a little more fussy and been waking once at night needing a little comforting, but mostly he is still his happy self. It's the bottom right front tooth.
- Is dropping his early evening nap. This is a huge deal for us, as it opens up our evenings quite a bit. Some days he still takes a 20-45 min power nap (mostly dependent on how his earlier naps went), but others he is up from 230-7. Which means dinner and/or errands in town! He still has two 2-2.5 hours naps earlier in the day.
- Dropping a nap/moving to a four hour schedule means he has dropped a feeding as well- we are down to 4 bottles a day and lots more solids (more on that later).
- Can sit up on his own quite well. I still lay pillows or the boppy behind him, as he gets excited chewing on a toy and throws back. But he enjoys sitting and viewing toys from another angle!
- He can also stand without any weight support. He needs balance support for sure, but his little legs hold all his weight. He really enjoys this.
- He eats around 8-10 tbs of food at each meal (3 times a day) and eats pretty much whatever we put in front of him. Bananas, pears, peaches, apples, plums, yogurt, spinach, peas, broccoli, cauliflower, mashed potatoes with corn, tomatoes with cheese, sweet potatoes, carrots, butternut squash, corn, and so many more!!
- He has also started finger foods in the past week. We feed him organic puffs (which melt in his mouth), baby biscuits, carrots, and few other soft veggies. He is still learning to get them to his mouth consistently, but he tries hard!
- He now sits up in the shopping cart when we head out, instead of in his infant carrier, which means I am researching convertible car seats, and we will soon upgrade to a big boy car seat!
- He has continued to improve his talking skills and has learned all sorts of new sounds. He blows raspberries, clicks his tongue, squeals, and talks like crazy.
- One of his biggest developments is just how *CLOSE* he is to crawling. He has learned to pull up his knees and enjoys being on all fours. He rocks back and forth and attempts to go forward to reach for toys. He easily crawls/scoots backwards but forward motion is still unpredictable. It seems he will skip the “army crawl” that a lot of children do (pulling their weight forward using their arms alone, dragging their back half) since he enjoys being on his knees so much. But we will see!!
On the Duckie front, everything is going normal! Duckie is nearly 15 weeks along now and has a strong heartbeat. I have another appointment at 18 weeks, and we will mostly likely schedule an ultrasound for around 20 weeks- can’t wait to share the pictures!
All is well up here in the North. We’ve had very mild weather 70s to 80s most days, but if the clouds clear, that sun can really heat things up! We are right in the middle of some major weather though, and have had many large thunderstorms with some rotating clouds. So far it means more days off since Jace can’t fly in that weather :D
In some other big news, there is a possibility that we will be moving houses in the next couple of weeks. We are now eligible for a larger house, and we are considering taking the opportunity! The catch is that we have 7 days once we decided to vacate this house, repaint it, and move into the new one. We’ll let you know what we decide!
We love you and miss you all!! J, C, J, &D