I Can See!

We picked up Wesley's glasses on Friday morning, and so far they have been a huge success.  Wesley can definitely tell that his glasses are significantly improving his vision, so he rarely tries to take them off. He keeps looking around and smiling, or walking to the windows and just staring outside.  I'm sure it must be an amazing experience for him to be able to see everything around him rather than living in one big blur.

Check out my new awesome glasses!

This is so much fun!  I can see EVERYTHING!

I must admit though, my favorite part about Wesley's new glasses is that he will sit and watch TV now.  Ever since he started rolling over at two months old, Wesley hasn't stopped moving. His therapists have explained to me that he has sensory issues that seem to drive him to be in constant motion.  But now I wonder, did poor vision have anything to do with it?  He still walks around the house constantly, and it is rare to see him sit still for even a moment or two.  But twice now since getting his glasses, he has sat completely still in my lap for 25 minutes while watching the Baby Einstein "My First Signs" video!  I am amazed, since I never knew it was possible for him to get his wiggles out and sit still.  And more than that, I LOVE snuggling with my baby.  If I could, I'd watch that video several times a day just to have the opportunity to hold him close.  I love just breathing in his sweet baby smell and wrapping my arms around him and letting him rest his head against my shoulder.  And, I love that this is not the usual hug, where I realize Wesley's wanting to snuggle with me as he's already leaving, because he already got his half a second snuggle with mom that he was looking for.  Instead I get to hold him for a full 25 minutes!  Wow!  But yet, I'm still sad when the video comes to an end and he starts squirming to get down.  We'll watch the video again tomorrow, though.  And the day after that, and the day after that.  I'll make sure of it!  And, maybe he'll even learn a few signs along the way.

Happy Birthday

Dear Zach,

Happy Birthday, my firstborn son!  I can't believe you are four years old already.  I still remember praying that the Lord would give us another child after we lost your older sister Grace.  When we found out you were a boy, we named you Zachary, which means "the Lord will remember".  And, the Lord has remembered! You have been a wonderful blessing to us from the Lord.

It is so clear to us that you are the perfect older brother for Wesley.  He adores you (with good reason)!  You can get him to do things after just a few minutes that it takes Mommy and Daddy forever to get him to do.  For example, we've been working on getting him to put his lips together to say "baba" or "mama" since he was 12 months old.  Last weekend, you decided to play a game with him and started smacking your lips together.  He thought you were so funny that he started imitating you.  Within an hour you had him saying "baba" and "mama" and laughing about it so hard that he kept falling over.

We love watching you play so sweetly with Wesley.  Whenever you talk to him, you change your voice to this sweet little voice and you say things like "Wesley, would you like another goldfish? Say "more"...".  Then you wait a minute to see if he'll try it before you give him one.  You get so excited about working on his picture cards with him, showing him two cards and saying so sweetly, "Wesley, would you like your ball, or would you like the Itsy Bitsy Spider?"  You LOVE it when he picks the right picture card and you clap and say "Yay, Wesley" even louder and more jubilantly than I do.

Sometimes you help a bit too much with making sure Wesley's following the rules, but I am grateful that you are always faithful to make sure that he is NEVER licking ANYTHING!  I'm counting on you to keep a good eye on him now that he has his glasses and let me know any time he takes them off.

It is such a delight for me to watch your mind at work.  You LOVE anything to do with numbers.  When I read stories to you, you are always telling me what page number we are on and what page number comes next.  The other day you even surprised me with how well you are learning to tell time.  You came up to me and told me, "Right now it's eight fifty-seven.  Then it will be eight fifty-eight and then eight fifty-nine."  Thinking I could catch you, I asked you what time it would be after that.  You just smiled at me and stated rather matter of factly, "Nine o'clock".  You're starting to learn some math concepts too.  You regularly come up to me and say things like "Hey mom, guess what!  Three and four and three makes ten!"

We've enjoyed teaching you how to read this summer too.  I'm so glad I bought you the BOB books, since you have thoroughly loved reading.  Reading is like a puzzle to you, and your eyes light up each time you fit the letters together to make a word.  It has been fun to see how much this has opened up your world as you now try to read signs and everything else you see.  You also love to write out your own words on the bathtub and the fridge with your sponge letters and magnet letters.

You were so timid about learning to ride your tricycle at the beginning of the summer that I was surprised you were willing to try out your bicycle last month.  But with some extra coaxing from Dad, you finally tried it and were pleasantly surprised at how fun it is to ride a bike.  I am so proud of you for being brave and trying it even though you were scared of falling.  You have really grown in stepping out of your comfort zone, fighting your fear, and trying new things this year.  

Most of all Zach, it has been such a joy to teach you more about Jesus this year and watch as you have begun to understand the gospel.  Now that you realize I read the Bible before you get up each morning, you come into my room at seven and ask right away if I can read to you too.  So, you set up the pillows on Daddy's side of the bed and sit next to me while I read to you from the gospel of Mark.  As I explain to you what we read, it is such a joy to watch the connections you make in your mind.  Last week as I was explaining to you who the Pharisees were, you realized they were the same people who wanted to kill Jesus.  So, you were very excited to tell me that Jesus let those bad men kill him because he loves us so much.  Your prayers to Jesus are also so precious.  Just last night you thanked Jesus for taking the punishment that we deserve and dying on the cross for our sins because he loves us so much. I continue to pray that your knowledge of Christ's love for you will lead you to place your trust in your Savior.

I love you so much Zach!  I look forward to seeing what the Lord has in store for you in this upcoming year.

Love,

Mom

The Ring Bearer

We were thrilled to have my dad come up for a visit a week and a half ago.  With the way everything worked out, Wesley didn't get to spend much time with Grandpa,  but Zach and Grandpa had a WONDERFUL time together!

On Friday morning we went to Zach's gymnastics class, and he was excited to show off his new skills.  Grandpa used to be a gymnast in high school and college, so that made him being there extra special.  Then we went out for lunch and took Grandpa to the park.

Then on Saturday we went to my cousin Dan's wedding, where Zach was quite the handsome ring bearer.  Zach ADORES Stephanie and was overjoyed to be a part of their special day.  We usually have a difficult time getting him to smile for the camera, but he was all smiles for her.

He even smiled for a family picture! (Too bad his eyes are closed....)

After church on Sunday, Zach showed Grandpa some of the new things he learned how to do this summer.  He did his best to catch Grandpa on his bike, but Grandpa's still too fast for him!

Zach was particularly excited about reading to Grandpa.  He's started reading through the BOB books this summer and is really enjoying figuring out how to read.

Zach definitely loves his Grandpa.  We miss you Dad and look forward to seeing you soon!

partial Trisomy 4p21q

I often find myself struggling to explain Wesley's exact diagnosis, instead just stating that he has a rare chromosomal abnormality. I have found that if I use the exact medical terminology, I often get a blank stare and glazed over look in response.  But due to recent questions I have received, I thought I would take the time to explain his diagnosis in greater detail.  So, for those of you interested in the science behind the diagnosis, here it goes:

Whereas most people have 46 chromosomes, Wesley has 47. His karyotype (a picture of systematically arranged chromosomes) shows that he has an extra 21st chromosome. Usually triplication of the 21st chromosome would indicate that a person has Down syndrome, but this is not the case for Wesley.

Chromosomes are composed of 2 arms - a short arm (labeled "p") and a long arm (labeled "q"). In Wesley's extra 21st chromosome, the short arm is actually a piece of the 4th chromosome, NOT the 21st. As a result, instead of having Down syndrome, Wesley has the diagnosis of partial Trisomy 4p21q. This means that he has a partial trisomy of the 4th chromosome (4p) and a partial trisomy of the 21st chromosome (21q).

Because Wesley's chromosomal makeup is different from Trisomy 21, he does not have many of the visible attributes often associated with people with Down syndrome.  On the other hand, the fact that he has an extra piece of the 21st chromosome means that there are some similarities. Just like many children with Down syndrome, Wesley has hypotonia (low tone), particularly in his tongue and jaw. Because of that, he has many difficulties with with feeding and speech. His hypotonia also affects his walking and the strength of his ankles.

Since Wesley's chromosomal abnormality is so rare, doctors cannot give us any information as to what Wesley's long term capabilities may be. Our best guess is that they will be similar to that of a person diagnosed with Down syndrome.  But, as Psalm 139 says, the Lord knows what Wesley's future holds, and he has sovereignly and lovingly ordained all of Wesley's days.  We trust that the Lord has a wonderful plan for Wesley's life, and we look forward to seeing all that the Lord has in store for him.

Autumn

The boys and I had a wonderful time playing in the leaves last week. Wesley doesn't usually prefer playing outside, but he LOVED the leaves and the thousands of acorns in our back yard.

Zach was my big helper - raking the leaves into big piles and then jumping in them.

Wesley wasn't a big fan of sitting in the pile of leaves, but he enjoyed wandering around the yard or sitting and inspecting the acorns.

This is so much fun mom! You should let me play with acorns more often!

**Check back soon for pictures of Zach in a tuxedo!

18 months

What an exciting month we have had over here! Wesley is walking everywhere now. He loves to pick up a toy in each hand and just wander through the house, exploring everything. He's also figured out that he doesn't just have to take the two top toys out of one of his toy boxes. Instead, he can dump all the contents out of all five of them, choosing to carry around the last two toys he finds. What fun that is for Zach and I as we get to clean up the mess!

Join with us in rejoicing and praising the Lord for the new things Wesley is learning to do!

• He said and signed "ada" (all done) last week (emphatically!) for the first time in months. While he hasn't done it again since, it is a reminder to us that he CAN do it. So we keep working with him, hoping that soon he will start signing and speaking more consistently.
• He is handing me picture cards to show me what he wants. He even went to get a picture card the other week to bring it to his speech therapist so she would turn on one of her toys. Also, most of the time, if I show him two cards, he will chose the one that he wants and give it to me. These are huge cognitive milestones. Our speech therapist was telling me that most kids she works with take months to figure this out. So, she thinks it shows that while his muscles in his mouth are so weak and uncoordinated that he finds it difficult to talk, he seems to understand what it means to communicate and is learning to do it when provided with the necessary tools. The most exciting part of this new development is that he LOVES to hand us picture cards. He is SO PROUD of himself. Whenever he gives us a card to show us what he wants, he gets a huge smile on his face and laughs. It is such a joy to watch my son be so happy that he can communicate to me what he wants.
• In the past two weeks, he has squatted down three times to pick up a toy and then stood back up without falling over. Considering how often he falls over and how much he struggles with balance, this is AMAZING! We are continuing to work with him, but are so excited as we see improvement in this area.
• He is now drinking thickened liquid (apple sauce and pureed Gerber 2nd fruits) from an open cup with minimal spilling. He is permitting us to hold the cup for him and support his jaw, which is a big step for him, especially since for a long time he did not want our hands anywhere near his face. He has even started putting one of his hands up to help me hold the cup, and sometimes he pulls my hand back under his jaw to indicate that he wants more. His swallowing is slowly improving, so hopefully soon we'll be able to introduce juice!
• He has started clapping! This is very important because bringing hands to midline is something Wesley has always struggled with. We think this might be one of the reasons he is not interested in sign language. He still claps to one side, holding one hand out and reaching over with his other hand to pat it. But, now that he has figured it out we can start working on moving it to the middle.
• Since he's started clapping, I have seen him sign "more" for two different therapists. He still won't sign for us, but I'm happy to see him starting to understand and try it for them.
• At speech therapy last week, he said "in" multiple times when working on a puzzle with his therapist. It was a transportation puzzle, and she would repeat the same phrase over and over again: "bus goes...", "car goes...", "truck goes...". After a while, Wesley figured it out and would say "in" for her when she paused. He also said "aaay" (yay) with us each time we cheered for him as he put the puzzle pieces in.
  
• Wesley's chewing is improving. His feeding therapist this morning informed that she is very happy with the way he is chewing and moving his tongue around while eating crackers. I think this is the first time I have ever heard a feeding therapist/speech therapist tell me that Wesley is doing anything well in the area of feeding. Wesley is still having a difficult time with textures and is refusing to even try most non-cracker, non-pureed foods. But, we love our new feeding therapist and are praying that the Lord will give her much wisdom as she seeks to help him improve in this area.

Momentary Afflictions

Wesley's diagnosis can at times be a heavy weight on my heart. When I think of what it will mean for him to live his entire life with a disability, it is difficult not to grieve.

But, God's word offers a different perspective on Wesley's life. In 2 Corinthians 4:17-18, it says "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal".

When I look at Wesley's life in light of these verses, I am filled with hope. In light of all eternity, his time here on earth is so short, and his disability is only a light and momentary affliction. If he trusts in Jesus as His Savior, he will be able to look back over his life here on earth and say that God used this trial in his life to prepare him for an eternal weight of glory beyond all comparison.

To paraphrase John Piper, "God cares about Wesley's body - big time. He simply didn’t come to fix all that in this age. He cares 10 million times more about Wesley’s soul and about his everlasting life and about the resurrection from the dead on the last day, when Wesley’s body will rise and be made new and He will wipe away every tear from Wesley’s eyes and death will be no more. Neither will there be mourning nor crying nor pain any more for the former things will have passed away. Oh, God cares about crying; He cares about tears; He cares about Wesley’s chromosomal abnormality. He cares about these things."

"But, He cares 10 million times more about what becomes of Wesley forever. We just have to keep these things balanced right. Wesley’s eternity is 10 million times more important than whether or not he gets well now. What matters is that Wesley gets well eventually and that he stays well forever, satisfied not mainly by God’s gifts but by Himself. “This is eternal life, that they might know you, the only God and the One that you have sent.” Oh, He cares, but in a certain order, both in priority and in time. He will make Wesley well, oh yes He will, in due time, if Wesley trusts in Him."

Lord, I pray that you will save my precious son Wesley, and that one day his tears will be wiped away as he sees you and worships you face to face.