Eli John Frost

Never mind the fact that we had a scheduled c-section set for a week before Kim's due date, the baby decided to come two days early. On Tuesday, Kim texted me at work (no reception for a call from the bowels of the hospital) with, "Call me now," followed up with, "they might see meconium and might deliver today they are calling the dr." I scrambled like crazy to find a ride to the hospital, arranged for babysitting for the kids, and headed off to a whirlwind birth.

Here's a picture for all of you who say you haven't seen Kim pregnant. This is as pregnant as she gets.


We went in for Kim's third c-section, which gets a little more nerve wracking each time, considering the fact that THEY'RE CUTTING A GIANT HOLE IN HER STOMACH. You can see how nervous she was.


The pulled out our baby, and he had a ton of dark hair. The fluid looked ok, thankfully no meconium.


He was tiny, in between Megan and Henry's sizes.


Eli John Frost, 6 lbs 8 oz, 19 and 3/4 cm.


Eli is ridiculously cute. Not only do all c-section babies get to avoid having cone heads and smashed faces, but our babies in particular tend to each be the cutest baby ever born.




Since we got to avoid the NICU this time, the kids were actually able to come visit and meet their new brother.


Megan immediately reversed her stance on being disappointed about a brother.


She told me, "Dad, I can't keep my hands off of him." Later, when I took her to school she said, "I'm going to keep Eli in my memory all day." When we walked into her class a little late, the teacher said, "So, what's the news?" and Megan responded, "The baby is ok!" and the whole group of kindergartners started cheering and clapping. It was great.


Henry has been a little more cautious about the new little brother, but he's really helpful and looks for the binky every time Eli cries. He likes to touch his hair. Speaking of hair, look at the three different colors on our kids.


They got Eli a little jaguar at the gift shop to watch over him.


We were lucky to have Suzanne get here the day after Eli was born, and be able to stay for 10 whole days. We need the help.


It was a bit of a hectic beginning, but I suppose these things always are. We're glad to be out the hospital now, and glad to be able to bring this little boy home with us.

Motivation

Last night, Henry decided for the first time that he actually was able to stand for an extended period of time -- as long as there were marbleworks involved...

He ended up standing for about 5-7 minutes, which blew his old record out of the water.

Halloween just keeps Coming

You know you have had a good Halloween when you tell your two year old a week after Halloween that you are going to a party, and he insists on wearing his skeleton costume, the top just won't do, he needed the full outfit.

This Halloween Megan started off as a cheetah, and then decided she was just a cat...

(This is Megan at her elementary Halloween parade. I thought I would go support her and walk with her, but she was too cool for her mom, and didn't need me. I wasn't quite ready for that in kindergarten. Junior high, yes, but kindergarten? Not to worry, I walked any way.)

In the end, she transformed into a Cat Witch (whatever that is...)

Lucky for Megan, Milan was a Cat Witch too. Who would have guessed.

Mike had to lug Henry around, and every once in a while Henry would stop to say, "This is fun!"

Halloween is Henry's holiday -- CANDY, CANDY, CANDY. Megan eats about half a piece of candy and is done, but Henry loves candy.

Treat or Treating with our good friends on Veitch Street.

The Results

So after much waiting, we have the results for Henry's muscle biopsy. Drum roll please....There are NO results. Yes, you heard it right, no results. They didn't get any muscle, all they got was "end-stage tissue." How do you not get any muscle, and what does that mean "end-stage tissue" -- it doesn't really sound too good. And when you look at Henry you think he must have muscle, he is moving around and slowing getting stronger and making improvements. The neurologist was also quite surprised by the results, but said sometimes this happens, and you don't get muscle, and he has seen it before. I still don't like the words "end-stage tissue."

So now they want to do an MRI to look at Henry's muscles to see if anything is going on with his muscles, and to map out where the best muscle is to be re-biopsied. Swell, Henry is going to love that.

So the question is, how far do we go to get a diagnosis? We started out down this path because the potential outcomes of PVL, his original diagnosis, are not really fitting together with how Henry is developing. A few months back we went to a new neurologist who thought maybe Henry could possibly have an underlying neuromuscular condition. So, of course, following that first appointment I looked online to see just what neuromuscular conditions there are, which, by the way, is a bad idea because the internet highlights a lot of horrible and degenerative neuromuscular diseases (e.g. muscular dystrophy.)

I then cried, and worried, Mike had to talk me down until the next appointment, and in the meantime, Henry continued to be the same sweet little boy he always was and is. And then we started the diagnosis process: first a thorough history and physical, which showed obvious gross motor delay and chicken arms and legs. Then basic blood work, CK, TSH: all normal. Then EMG: normalish, and ruled out muscular dystrophy. Then muscle biopsy: inconclusive. Finally, genetic testing: pending muscle biopsy.

So we are almost to the end. We have decided that we do want to finish this path to a possible diagnosis to say we have done everything we can for Henry and to get him the best possible treatment if this is in fact a neuromuscular issue.

But we have also come to the conclusion that in end the "diagnosis" doesn't really matter -- you end up just loving your children for who they are. Henry is Henry, and we love and accept Henry for who he is, and we don't think about his issues everyday. Yes, there are days that it hits you in the face, or something small reminds you that your kid is different. Like the fact that much younger kids are starting to walk, and it is so easy for them to move and get up and down, and aren't afraid to fall because their bodies will quickly react and catch them. Some days that is hard. But I have learned that Henry is here on this Earth for his own trial, and I am just his Mom to maybe help him along the way a little bit, and that is the same for Megan and this new little baby -- they are their own special beings with their own trials. We have also have learned from Henry's trial that there is power in prayer, and pristhood blessings, and that submitting to Heavenly Father will brings peace, and Heavenly Father is watching over us and knows each one of us individually.

So, whatever -- diagnosis or no diagnosis, we are going to be okay.

There it is, probably more than you wanted. I feel so blessed with how well Henry is doing, and we so grateful that Henry is in our family.

The Carving

We found the pumpkins, and now it was time to carve them. Megan and Henry dressed for the event. We had our traditional cheese soup dinner with mummy dogs, eyeballs (grapes), skeleton smiles (apple wedges), goblin guts (carmel dip), and vampire teeth to eat the spooky meal.

Megan did a great job gutting the pumpkin and contracting out a witch pumpkin with high heels. Mike really out did himself free-sketching the witch. Once Megan approved the witch, she carved a little pumpkin all by her self with a traditional face, something she was much less frustrated with.

Henry liked the idea of carving pumpkins, but once he pulled the top off and saw the sticky messy inside, he was done. However, he did request a Thunder Cat pumpkin. Once again Mike did a great job making that.

And the award for best pumpkin goes to: DAD (for the first time in our marriage):

for creative genius, and selflessness. And by the way folks no stencils were used here.

Wegmeyer Farm-The Great Pumpkin Hunt

We went to Hamilton, Virginia to visit our friends in the "country". Hamilton is 50 miles outside of D.C. and I guess that makes a real difference, because as we entered Hamilton Henry would see a yard with a wooden fence and call it a farm, and Mike was in heaven ready to move and live off the fat of the land (I did remind him we may not be ready yet after our last garden experience).

Our friends took us to Wegmeyer Farm, to go pumpkin picking. This was a great little homegrown farm, where you could pick your own pumpkins, take a hayride and go in a little corn maze. The kids loved it.