A Hunter update

As most of you reading this already know, Hunter has been diagnosed with arthrogryposis since he was about four months old. Arthrogryposis simply refers to contractures of the joints, and up until a week ago, we had no idea what was causing this in Hunter.

In June of this year, we met with a geneticist who reviewed Hunter's case, and thought something didn't quite add up. He said the fact that Hunter had lost flexion since infancy made him think there is actually an underlying neuromuscular disease, and that it could be progressive. On September 24th, Hunter underwent his third surgery this year - this time it was a biopsy. We got the results last week, and I thought this blog would be the easiest way to share with everyone.

First and foremost, as far as the medical world knows, Hunter's condition is not progressive.

Sigh of relief.

We do however, after five years, finally have an underlying diagnosis.

It is called congenital fiber type disproportion.

Congenital meaning existing at birth, and fiber type meaning the two different types of fibers our muscled consist of. We have type I and type II fibers, under normal circumstances, our muscle fiber types are congruent in size and number. In Hunter's case, as it turns out, his type I muscle fibers are smaller, and greater in number, than his type II fibers - thus the disproportion aspect.

This disproportion results in muscle weakness. The doctors are now saying that this weakness caused a lack of fetal movement, which in turn caused the contractures of the joints. (and yes, I did report lack of movement to my ob, and I was told there was nothing wrong and I was just worrying because I had nothing to compare it to - I'm not sure I'll ever be over that one)

Anyway, the prognosis is good. This condition is extremely rare, so there isn't much info on it at all. We were told that the best thing to do for Hunter is to keep him moving - this is great news as Hunter is such a sports nut! As far as medicine knows right now, the condition should either remain static or improve slightly.

This link provides a good overview:
http://www.muscular-dystrophy.org/about_muscular_dystrophy/conditions/115_fibre-type_disproportion

So that is the update on Hunter. It is a good feeling to finally have a legitimate cause for Hunter's mobility issues. We will continue to keep Hunter moving, mostly through sports, and especially with swimming.

Thank you so much for all of your thoughtful words and prayers, they mean the world to us. To see that so many people care so deeply for our son is a huge blessing, and we are grateful every day for that.

Thanks for reading this post :o)

Four Months!

Well, by now she's about 4 and a half months, but the 4 month mark came amidst the fifth birthday extravaganza :o)

Morgan is wonderful. She's 14 lbs and 24 inches (75th percentile for both). She's growing beautifully, and meeting all of her important milestones. I had sworn we wouldn't start solid food until she was six months, but I was wrong. For a few weeks, Morgan wasn't lasting very long in between bottles, but her stomach capacity is only about 5-6oz of formula. So we thought we'd try oatmeal for a little more substance, but I wasn't sure how she would do with that. From the very first bite, Morgan was bringing the food to the back of her mouth and swallowing, as if she'd been eating for years.

So, we're on to solid foods now :o) So far, she's had oatmeal, squash, and green beans - now, I can't stand pictures of kids with food on their faces so I'm just going to post this one because it's cute that Hunter is feeding her, he was so excited :o)

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Cousins from Seattle sent Morgan this adorable raspberry hat awhile back. The other day, I thought Morgan's noggin might be ready for it:

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Another fun thing that has been happening is the interaction and bonding going on between Hunter and Morgan. She loves to sit in her jumperoo and watch Hunter run back and forth. Hunter is so sweet and thoughtful towards her, it's really wonderful to see :o)

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Love this picture. Morgan is resting on my mom's shoulder - love the expression on her face!

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Hunter's Fifth Birthday - Part II

On Saturday, we kicked off the birthday celebration with breakfast at McDonald's before Hunter's soccer game

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After the soccer game, we headed up north to Santa Cruz, for a ride on the Roaring Camp Railroad. We were treated to a ride through the redwood forest on a 100 year-old steam engine

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So glad Mom and Dad were able to join us!

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Checking out the engine with Pappa

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Too hard to resist taking cheesy pictures!

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Timeout!

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Entrance to Roaring Camp

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My fourth cake creation (Hunter's third birthday cake was courtesy of Costco since we were out of town!) Hunter requested a Toy Story 3 cake, with Buzz, Woody, and Jessie "because she's pretty" :o)

It was a chocolate fudge cake with Reeses peanut butter frosting filling. The outer frosting is homemade almond butter cream. All the decorating was done with the butter cream, and the figures are from Toys R Us.

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Once I saw Hunter's first impression of the cake, I instantly forgot what a pain it was to make :o)

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Awesome alien party hats! I laugh out loud every time I see this picture. Morgan was thinking 'I hope they don't make me wear a goofy hat on MY birthday!' and Hunter was thinking 'LET'S EAT!'

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A complete set of cooking tools from Grandma and Pappa - no kiddie stuff here, this is the real deal!

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Really cool recordable birthday card from Grandma and Grandpa (Nilson) (in addition to an awesome pirate book and sea monkeys!)

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Justin is teaching Hunter Arabic (I'm trying, but dang it's hard!) so he gave Hunter a big Arabic picture dictionary, and wrote him a special birthday message on the inside-

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Justin, reading the Arabic to Hunter

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Our good friends and former neighbors, the Farmers (you'll remember them from last years camping blog!) sent Hunter a set of build-it-yourself monster trucks!

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Hunter had a great birthday, and we can't believe he's FIVE! Hunter has celebrated his five birthdays in four different homes, and as of now, we aren't sure what state we'll be celebrating in next year!

Happy Birthday little man, we love you, and we are so proud of you. You make us laugh and smile each and every day, and we can't wait to see what you're going to do next!

Hunter's Fifth Birthday, Part I

Since Hunter's birthday was on a Friday this year, we split the celebration into two parts, so that Justin could be around for all the fun stuff :o)

After Justin got home from work on Friday, we went out to the beach at Moss Landing

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I was wearing a jacket with lots of buttons, and it was too chilly to be without a jacket, so Justin stepped up and wore Morgan in the wrap for me. I love this picture :o)

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Hunter, searching for buried treasure

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The four of us - taking pictures was a little tricky due to the evening sun

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When Hunter was about Morgan's age, we took a footprint in the sand picture. Now, with another member added to the family, it was time for an update

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Five Years Old!

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Are you ready for some FOOTBALL?

The house is adorned...

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The jerseys are ready, the tattoos have been applied, the game face is on...

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The hair bow is neatly in place...

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It's FOOTBALL SEASON!

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Here are some shots of the week 2 festivities:

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I'm pretty sure this is a penalty of some sort...

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Soccer and Swimming

Sports season is upon us, and Hunter is going full strength! Soccer practice on Tuesdays and games on Saturdays, and swimming M, T, Th, and F!

Some pictures from the game yesterday:

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So glad one of the moms facilitated getting the kids' names on their jerseys!

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Hunter exemplifies team spirit, seen here as he celebrates another boy on the team scoring a goal:

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Huddle - GO GREEN HORNETS!!!! BZZZZZZ!!!

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Hunter takes swimming lessons on Tuesday and Thursday evenings, and does aquatic phsyical therapy (which amounts to private swimming lessons), on Monday and Friday Mornings. He started swimming back in May, and has come so far in terms of both comfort and confidence in the water and skill!

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Needless to say, it has not been difficult to log enough P.E. hours!

Roots

On Sunday, September 5th, we decided to get in touch with our roots, so the four of us drove up to the bay area for the Caledonian Club of San Francisco Scottish Highland Games. We spent a full seven hours at the games, the kids were amazingingly cooperative and well-tempered, the music was awesome, the food was great, and the ale was cold - what a day!

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Our first stop was the Clan MacLean tent (Justin's clan, his grandmother was a MacLean).

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My family (Arnott) doesn't have a current clan, as there is no present-day clan chief. We are however, part of the Fife District Clan, as that is where the Arnot(t) family seat has been since the early 12th century.

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After checking out the clan tents, we headed over to the grandstand to watch some of the heavy athletics competition. We watched the weight for height competition, and of course, the caber toss.

From there we headed over to the Children's grove, where they had face painting, and some cute games for kids.

Here is Hunter, channeling his inner William Wallace:

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Playin' a little golf...

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Hunter earned 12 tickets at the golf game!

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Next was the haggis toss...

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Check out the 'haggis' Hunter is about to throw-

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After Hunter played his games, we decided to grab a bite to eat and sit down to watch some pipe-band competition.

We shared a steak and mushroom meat pie, as well as a Scotch egg

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The scotch egg is a hard boiled egg, inside a massive sausage meatball, breaded and fried. Amazing.

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The pipe bands were awesome, we could have sat there and listened all day!

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I wasn't sure if the loud sound of the bagpipes would bother Morgan, I'm thinking it didn't :o)

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After hearing some pipe bands, we headed back to the grandstand for the closing ceremonies. When we got there, Marine Band San Diego was playing.

And just as we were laughing about Justin not being able to get away, we looked behind us....

The Marine staring at Justin ended up coming up to us, and thanking Justin for his uniform - turns out he's a Bear's fan :o)

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The highlight of the day was the mass bands at the closing ceremony. All of the pipe bands that competed stood together and played 'Amazing Grace' and 'Scotland the Brave' in unison (that's over 600 pipers at once!) It was so awesome, I had a hard time not tearing up!

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Marine Band San Diego, interspersed with the L.A. Scots Pipe Band, one of only three grade I pipe bands in the United States

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We had a great time at the games, and we hope that wherever we are next summer, there will be a Highland games for us to attend. (until then, the mission will be getting kilts for Justin and Hunter!)
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