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!

 

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.

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!

you’ve come a long way, baby.

I was just looking at some old videos. Miles figuring out how to walk is truly incredible!  His determination is nothing short of amazing. Yes, it has taken him a long time. He is 3 years and 3 months old now.  But, it has been a long road full of progress, set backs and lots and lots of hard work. Here are some videos to give you an idea of just how hard he has had to work.

Miles at 8 months old working on lifting his head from the floor

Miles at 1 year learning to army crawl

Miles at 17 months crawling

It is absolutely surreal for me to see Miles walk. There was a time today when I walked into a room and there he was- standing up and walking to his sister. Being the Mother of this little boy has taught me so many things. But, one of my favorite lessons has been to not take anything for granted and to appreciate every little thing you are given. And for the record, I still get giddy every time he says, “Mommy?”. 🙂

WALKING.

Here is our first ever video of……

MILES WALKING!!!

Christmas 2010.

I actually wrote a long post detailing our Christmas weekend. Then, I deleted it.

The important thing to know is- Miles had a fever all weekend. He had a bad seizure. We had 2 ER trips. He’s still not quite himself, but fever free and doing much better.

While the hospital trips were neither fun nor a part of the Christmas we wanted to have, the time spent with our families between the drama was wonderful.

We are truly blessed with great families! Not sure which family members will read this, but- thank you to my Daddy who tenderly stood by us at the ER.  I love you SO much! Thank you to my brother, Eric- for taking good care of us and giving a hug at just the right time. Thank you to Mom, Jill, Christian and Uncle Greggy for making Greta’s Christmas special and fun. Thank you to Co-K and Papa K, for giving us a lovely Christmas Day. Thank you to Dennis and Becky for always opening your home to us. And for bringing us dinner in the ER! Finally, thank you to my wonderful husband who knew just what to do with his grumpy, sobbing wife in the ER (2nd trip). I love you.

Hopefully, Miles is on his way to being completely back to normal. The important thing is…

“…a Savior has been born to you; he is Christ the Lord.” -Luke 2:11

no school.

We got Miles’ big evaluation results today. It didn’t tell us anything we didn’t already know. He strengths are expressive language and his social skills. His weaknesses are in following directions and his gross motor skills…obviously. Over all, he was a little below average. The “typical” child on this test (the Bayley) scores anywhere from 90-109.  Miles’ average was 80. What does this mean for him?

We had planned to send him to a special needs preschool overflow classroom in January. Well, basically- he is not delayed enough for that particular classroom. So, he won’t be going to preschool until Fall. He is too delayed for community preschool (not walking, not potty trained), but not delayed enough for the overflow classroom.  I was kind of excited for him to go off an have his own little preschool adventures, but I’m definitely ok with keeping him home with me a little longer 🙂

**No idea what this photo has to do with this post, just felt like posting it!

November 16, 2010.

November 16, 2010: The day Miles took his first steps!

Miles took his first steps in Physical Therapy today! He would only take 2 at a time, but he did it over and over. We are over the moon!  Now we will have to get him to do it on video to share with everyone. When I saw him do it, I was so overcome with emotion that I literally almost fainted. It was pretty funny!

He was pretty proud of himself. Mommy showered him with cookies and let him watch The Sound of Music to celebrate!

Way to go, Buddy! We are SO proud of you!

em-brace-able you.

I know, I just can’t quit with the puns!

Miles got his new ankle braces on Monday. So far we love them! His posture has improved, he seems to be pulling to stand easily and more often and has spent a lot less time on his knees. Miles loves his “big shoes”.

To start, he has to wear them 2 hours on, 1 hour off all day. We will gradually increase the time he has them on until he is up to 6-8 hours at a time.

Miles really seems to enjoy his new braces. He actually holds still while I put his braces and shoes on now!

We have had a lot of appointments lately. The Neurosurgeon doesn’t want to see him for a year. The Neurologist doesn’t need to see him for 6 months. He had an evaluation with a psychologist to determine what services he will need once he enters preschool. We are hoping he will be able to start preschool in January! Lots of exciting things around here. Miles is doing just awesome in his new walker and we are actually able to use it in public without having him secured. In case you were wondering, he’s still as sweet and snuggly as ever!

through the storm.

I remember it well and it has fundamentally changed who I am.

I remember my heart breaking the day that we found out that there was something seriously wrong with our son. There was a chance he wouldn’t live once he was born. If he did survive, there were no guarantees as to what quality of life he would have. Would he ever walk? Talk? We wouldn’t know. We had to wait.

Those months were hard. They were very hard. The uncertainty surrounding our son’s birth, financial difficulty, and my husbands’ chronic nerve pain were all weighing heavily on our little family. I remember it was around that time we starting singing this song at church:

You Never Let Go

Even though I walk through the valley of the shadow of death

Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know you are near 

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

I am a singer. It is a huge part of who I am. But, when we would sing this song at church, I just couldn’t. I would just cry and look up to God. It was all I could do. I was terrified, scared to death. Would we survive this? Would I ever care about things like paint colors, and performing, and going to the movies again? I couldn’t see it. I honestly couldn’t even imagine it. Life was so incredibly hard. And I was in so much pain. But, I knew what the Bible said:

“I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire you will not be burned; the flames will not set you ablaze.”-Isaiah 43:2

I knew that God was walking right with me. I knew He was still worthy of being praised, even if I was hurt and angry. So, I chose to praise Him. I chose to hold his hand. I was weak. He was strong for me (2 Corinthians 12:10). Time passed slowly and then, our son was born.

So many beautiful, wonderful people rallied around our family when Miles was came.  People did things that we will never forget.  People did the kind of things that restore your faith in humanity; our friends, family, church family, even strangers.  I think a lot of people really didn’t understand the seriousness of his condition until they saw him. It was obvious. It was serious. It was a lot to deal with. But once Miles was here, life was so much easier. Sure there were the Doctor’s appointments, surgeries, and therapies, but we had Miles.

Let me say that again…we had Miles.

We prayed and prayed that our baby would be normal. He is not. Miles is extraordinary. It is a huge privilege to be his mother. Having him here on this earth with us seems too good to be true. I would gladly take any amount of pain, suffering, uncertainty, financial loss to spend just one day with those sweet blue eyes. It has been a hard journey, one that is far from over, but I would do it all again in a heart beat.

I am proud to say that we are through the storm. We are on the other side. It feels so good. I know we will have storms in the future. Next time around, we will be better equipped and we will know first hand that with God all things are possible (Matthew 19:26). My hope is that someone who is going through a storm right now might read this. Someone who can not even see through the clouds to the other side. Stretch that weak hand up to God and hold on. He will never let go.

*Song lyrics by Matt Redman