Miles’ first day of school and more…

I have been a bad blogger. But, I just started a new job, Miles was very sick and life just gets in the way!

Here are some photos of Miles’ first day. We only got a few because he had a major meltdown soon after these were taken.- Not your typical “Mommy, don’t go! Don’t leave me with these scary strangers” meltdown, but more of a “I don’t want to stand here and wait at the wall. I want to go play, NOW” meltdown.  Nothing about our little guy has ever been typical 🙂

In his classroom-

We only got a few good shots of him that day. It was rough. When I picked him up from school that day, he was all sweaty and his voice was hoarse.  I could tell it was a rough day. I worried that it would take weeks for him to get the hang of the routine.  After just a few more days, he was waiting in line at the wall just like all the other kids!

See him there in his yellow submarine shirt? 🙂

Today was parent/teacher conferences.  Guess what? He’s doing great! He has already met almost every goal on his IEP. They are going to have to rewrite it! Very exciting!!  He is also getting close to being dismissed from physical therapy, as well. We just need to work on going up and down stairs a little more and he will be discharged!

He is really thriving and it is so exciting to see him do things that we didn’t know he could do.  I got a chance to sit in on his classroom today. He was doing a great job eating his pancakes with a fork. Then he carried his plate and put it away, washed off his place mat, put his place mat away, brushed his teeth and went to the bathroom to wash his hands! Such a big boy 🙂

I will leave you with a small excerpt from the notes from his conference. Something about this particular line made me tear up.  This one sentence just describes who he is and where he is at right now perfectly.

“Outside, before we play, we run up and down the courtyard 2 times. He does that with a smile on his face. His run may not be as fast as the rest, but it is faster than a walk.”

We are SO proud of our little guy!

 

a night at the movies.

This weekend Greta got to go stay at Mimi and Papa’s! (THANK YOU!!) She is at that stage where she never stops talking. Never.  Kindergarten will be interesting 🙂 It was very nice to have a few days of a much quieter house. This allowed us to really be able to focus on our little man. We don’t get much time with Miles alone (or Greta for that matter) so, we made sure to spoil him a little. I made his favorite lunch. I let him have cookies instead of fruit for snack. And the big deal- Joe and I took him to a movie! The last movie we took either of the kids to was Toy Story 3, so you can see we don’t get to go to movies often. Miles was so excited! We all had a great time, even though Miles only lasted about 3/4 of the movie before he got antsy and wanted to “go up the stairs”.  Next time we will make sure to select an animated film!

As you can see, Miles was much more interested in eating his candy and watching the previews than in bothering with a photo op!

finding the blessing.

Another fever spike means another seizure. I hate these days.

Every time he has one it is so disappointing. I know what’s in store. Since his seizures last so long, we have been instructed to call 911.  Every. Time.

A trip to the ER means blood draws.  Yet another hospital visit to perpetuate his doctor anxiety.

He seems to catch any bug that other kids wouldn’t even be bothered by.  He seems to get high fevers easily.  His “anti-seizure” medication doesn’t seem to be doing it’s job.  We have to wonder if letting him get sick, essentially letting him have seizures will help build his immune system. Or should we just wrap him in saran wrap and lock him in the house?

But, there is blessing in these days.  We are grateful that he only has seizures as often as he does and not more frequently.  We feel God’s favor when the really good phlebotomist just happens to be working again.  And I cherish those 30 minutes after we had been dismissed from the ER where I got to sit with my 45 lb. sleeping baby all cuddled up on my lap. This is something he would normally never do.  On the drive home, he woke up just long enough to sing a few rounds of  “Oh, my darlin’ Clementine” before dozing off again.  With that simple song, everything is OK.

first half of summer.

It appears as though I am taking the summer off from blogging! Oh, not so! I just have been preoccupied. I spent about 3 weeks in horrible pain due to a tooth that desperately needed a root canal. Feels SO much better now! Then Miles got the flu. And I got the flu…then Greta, and finally Joe.

So, forgive me- here are a few snapshots of our summer so far.

Recital Day.

Ice cream after the recital.

Joe and his Dad (Dennis) rockin’ out on stage.

Greta’s new obsession with wearing Miles’ pajamas 🙂

Playin’ with sticks.

Greta attacking me with a water balloon.

Working in the garden.

Splashing with Nana!

Growing up.

bumpy.

Sunday night after bath time, I was brushing Miles’ hair and discovered a large fluid filled spot.  Immediately, I called the Neurosurgeon’s office. The Dr. on call said it was most likely just the result of his surgery 2 years ago, but that I should call and talk to our Dr. on Monday morning.

Monday morning, I called the office and explained that it felt like he had a squishy apricot on the back of his head. They said as long as he was acting normal (which he was) that it was non-emergent. They still wanted to see him on Thursday just to rule out shunt malfunction.

Today we saw the Neurosurgeon. He ordered a CT scan and shunt series (set of x-rays of the shunt and tubing) to rule out malfunction and checked the shunt pressure. Poor Miles. I’m not sure how many CT scans he has had 8?9? As he has gotten older, these have gotten more and more difficult. He doesn’t understand why they are strapping him down and taping his head into place while Mommy is saying, “It’s OK” over and over.  Whenever we have a blood draw or CT scan done, I kindly tell the medical personnel that Miles is very strong and we will probably need at least 2 extra people. Sometimes they believe me, sometimes they don’t. In the end, Mommy is always right. Those radiologists (along with Miles and myself) really worked up a sweat getting the CT and X-ray done.  Yes, it took 4 of us to get the tests done.

We saw the Dr. immediately afterward. The CT and X-rays were clear! He explained to us that if your scalp has never been peeled back, your scalp is basically glued to your skull. Since Miles has had his scalp peeled back twice, a simple bump can cause fluid to collect between his skull and scalp.  A kiddo with a normal head would have gotten a goose egg, but Miles got a squishy apricot. So, this is something that should just go away on its own and something that could happen again.

We are so thankful for your prayers and for the fact that Miles’s shunt is still working well. We are grateful that God has protected Miles from another surgery.

Oh, how I love that bumpy, squishy head!

a crowded bed.

By now, you are all probably familiar with “puppy”. But, what I haven’t told you about is Elephant, Horse, Donkey, and Monkey. Seem like a lot of friends to cuddle up with? Well, let me tell you- they are not just randomly selected! If you put Miles to bed and one of them is missing, he will immediately ask, “where’s donkey?”.  If you try to sneak an extra friend in, say a sheep or penguin, they will be immediately expelled from the bed! I adore this little guy 🙂

Mother’s Day.

Mother’s Day 2011 started out a little rough. Miles had not slept well the night before and has a nasty cold. I knew that bringing him to the church nursery was a recipe for disaster, so instead of going to church on Mother’s Day, the kids and I stayed home. Daddy had to play guitar for both services, so while Greta and I spent some quality time together, Miles took a nice long nap. Then Miles really woke up on the wrong side of the bed, but we continued with our plans to visit my parents after church. At about 3pm, Miles must have started feeling better. He was back to his cuddly, happy,  but boogery self!

The kids playing with one of my favorite childhood toys.

My Dad making the Lamb.

It was a beautiful day!

My gorgeous Mother and her “baby”.

Our little sunshine 🙂

Do you see them? Mimi, Papa and their Grandkids

And finished with a fabulous dessert!

A fine end to what turned out to be a lovely day.

Happy Mother’s Day!

in protest.

Last night, we put the baby gate up on Miles’ door so that when he woke up at 5:00, he would *hopefully* play quietly in his room.

Here’s what he did- he woke up at 5:45 (woohoo!) and promptly began staging a protest.

He started throwing everything he could get his hands on out of his room; puppy, blankets, Mr. Elephant, puzzles, and the bigger, the better!

sleeping woes.

Miles has pretty much always been a good sleeper. While he doesn’t require as much sleep as even his big sister, he does a great job sleeping through the night (unless we are staying away from home, of course).

Lately, Mr. Miles has decided that 5:00 a.m. is the perfect time to rise.

Nope.

Not good.

I must admit, it is incredibly sweet to be awakened by a soft voice saying, “Good morning, Mama!” or his soft little fingers touching my face.  But, this Mama is used to waking up around 7:30 a.m..  I’m sure I don’t have to tell you, but there is a HUGE difference between 5:00 and 7:30!!!

I’m pretty sure he is just exerting the new-found freedoms of sleeping in a big boy bed, but sheesh!

Really, really hoping this is just a phase!!

He is Risen!

What a great Easter weekend we had!

Our dyed eggs.

Greta and Tegan 🙂

Egg Hunt #1.

(no, I did not give her the idea for this pose)

The cuties together.

An Easter first.

Egg Hunt #2

(Check out my tan!)

Happy Easter! We are so very grateful to be able to celebrate this day!