Saturday, January 31, 2009

Another Post About Down Syndrome Lists

I made a comment the other day in a post with a list. I said, "Raising a child with Down Syndrome is not without it's check lists." I want to qualify this statement a little bit.

Thursday afternoon Ray came home from work early, so I took the opportunity to leave Calvin with him and take Charlie to the hospital for his blood test and neck x-ray. Both of these tests are simply routine things you do when your child has Down Syndrome. They are on the health list.

It was a beautiful afternoon. The sun was out and cut through the afternoon air, casting sharp shadows on the pavement. We live near the hospital, so ditched the car and enjoyed the walk. I waved to a friend who drove by. Charlie chatted to himself in the stroller in front of me.

When I first became a mother it never occurred to me that one day I would very casually take a walk to the hospital on a lovely afternoon with my son. I would have thought it unlike me to calmly guide my toddler through the motions of a blood draw to check his thyroid, and an x-ray to make sure his neck vertebrae are sturdy and stable as every three year old's bones should be. Yet, there I was. Casual and calm. This is just what we do, Charlie and me.

In that moment, as we neared the hospital, I was struck with just how normal our lists have become... But, not always so.

I can remember when we first received the lists. It was in the three weeks between first hearing the doctors suspicions that Charlie had Down Syndrome and when we finally got that call to confirm what we had come to accept. In those first days, the lists seemed overwhelming. They seemed endless. I could certainly love our little boy, Down Syndrome and all, but could I hack the lists?

Well, the answer is Yes. I hacked it. I hack it. I more than hack it. I keep the lists close to my heart. I memorize them. They are just part of what we do for our Charlie. To keep him healthy. To give him the best education. To help guide him in his development.

These lists, they are our normal.

So, please understand, when I say something like "raising a child with Down Syndrome is not without it's check lists," know that I say it with a half smile and a twinkle in my eye.

I love this boy so much. He is my heart. Lists and all.

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Thursday, January 29, 2009

The Appointment

Charlie had his appointment this morning, and could not have been more charming. The nurses refer to him as "The King," because he shares a birthday with Elvis (and other obvious reasons). Today, he really rolled into that office in Kingly style. Even got an extra sticker for all his efforts.

First, when we walked in the door to the area with the exam rooms, Charlie went straight over to the scale and stepped up on it. He is 31 pounds exactly (75% percentile on the Down Syndrome growth chart). Then it was time for measuring his height. He stood very still and very straight as the nurse marked his height. He is now 33 1/2 inches tall (about 50% on the DS growth chart).

Then, he walked right into the exam room and asked me to help him onto the table. He sat on the table for a moment with a smile, then he lay down and closed his eyes. That boy is so stinking cute.

For most of the appointment he was running around the exam room, showing off to the doctor and the med student. I think he made a great impression.

So on to out tests, concerns and predictions.


We came away with RX's for:

Blood Test: CBC, TSH, T4

Neck X-ray's to rule out AAI

Prescription for a different type of Acid Reflux medicine (Prevacid)


We decided to hold off on:

Celiac blood test. The doctor and I talked about it, and we both agreed Charlie does not "look" like a 'Celiac Kid' as the doc put it. We will do a screen for it if he ever presents with symptoms.

We also decided to hold off on a sleep study for now. While Charlie has some indicators that he might have OSA, his quality of life seems just fine (he's not hyperactive, does not fall asleep during the day, he has good focus, and is happy). If we did a Sleep Study and found out that there is some level of OSA, the recommendation would be to remove his tonsils and adenoids. At this point we would decline the surgery. The risks as of now are not balanced out by any benefits.


Lets see, what else.

Oh, the diarrhea. We took stool samples on Monday, and got them back today during the appointment. The samples were all clear. The official diagnosis is "Diarrhea of Toddlerhood." An official way of saying, "Your son has diarrhea, and we don't know why, but it will eventually go away. Have fun." So, it will apparently just take some time to clear up. Hopefully sooner than later.

I forgot to bring up the dry skin and brittle toenails. I also forgot to ask about vitamins to supplement his poor diet.

All in all, the doctor agreed with me that Charlie is doing so, so well. He really is doing a fantastic job in his development, and we are blessed for his excellent health. This kid has never even had an antibiotic!

I'll update when we get out lab results and x-ray's read.

Wednesday, January 28, 2009

The List

It was my hope to post something more interesting. Something with some fun pics of our new house, our beautiful boys. Alas, I can't find the camera cord to upload pics to the computer. It is somewhere in the mess of boxes I have yet to unpack.

In the mean time, I thought I would share with you the check list for Charlie's Physical Exam tomorrow. Raising a child with Down Syndrome is not without it's check lists!

Tests we need:

1. CBC, TSH, T4
(In english: Complete Blood Count, and two thyroid tests.)

2. Celiac Screening

3. AAI x-rays
(Atlantoaxial Instability)

4. Sleep Study to screen for OSA
(Obstructive Sleep Apnea)

Concerns I have:
1. Acid reflux not being controlled well.

2. Ongoing Diarreah

3. Low body temp (thyroid?)

4. Very dry, bumpy skin and brittle toe nails

5. Not getting a wide variety in his diet due to refusing to eat most things.

My Predictions:
1. I think his thyroid may have taken a dive this year.

2. I think the AAI screening will come back just fine.

3. I think the Celiac screen will come back fine.

4. I think the Sleep Study will show he does have OSA.

5. I think if we end up doing diagnostic testing for acid reflux it will show he has it. At the very least, I think the doctor will agree with me we need to increase his medication.

Okay, that's our list for tomorrows appointment. I will update you as to what we find out, when we find it out!

Friday, January 23, 2009

And We're Back

We survived six days without Daddy. And a computer.

Ray had an amazing time at Estes Park. As hard as it is to let him go for a week, it is an essential time of refreshing for him. He gives and gives and gives, and gets no pay in return for all his work as a worship leader.

Raymond is an amazing husband and daddy. He gives at home by letting me sleep in (for a few minutes anyway) while he gets the kids going with breakfast. Then he goes to work for the day. After that he works either at home or at the coffee house to set up bands, coordinate schedules, worship practice, running sound for bands int he coffee shop, setting up art shows, leading worship. He does all this work from his heart. He truly cares for each person he works with and each person he helps along the way. But, he needs a break now and then to recoup. Estes Park is his break

I had a tooth pulled last week (I may have mentioned that a couple times!), and the healing was not going so well. Add to that we just moved. Add to that Ray being gone.

Well, I was BLESSED with a lot of help. First, Ray's folks practically camped out at my house last weekend to help with the boys. (Thank you Rod and Kathe!) Then on Monday my folks came into town for the week.

I was really dreading being alone all week with the boys, this awful tooth ache, and no one to help. Well, silly me for worrying. God had me covered. My family is amazing. My in-laws are amazing. This is what family and community is for. To help each other out when we have need. I definitely had a need, and what do you know, my amazing family pulled through for me. (Did I mention they are AMAZING!)

Anyway, just a quick update after the complaining in the last post.

More to come on the house and our brand new (to us) mommy-mobile later.

Saturday, January 17, 2009

We're Up To

What are we up to?

Well, we moved. Again. Boxes everywhere. No where baby-proof for the kids to play.

I had my tooth pulled. Oh ya, I already told you about that. Well, it still hurts. A lot.

Still need to clean the old house, but pretty much everything is out of there.

I have to do the cleaning alone. No, not alone. I'll have the KIDS with me. Raymond is leaving town for a week in just a few hours.

He is going to Colorado to Estes Park for the National Vineyard Churches Worship Leader Retreat.

I get to stay here with the boxes, my tooth ache, the cleaning, the kids. Oy.

Tuesday, January 13, 2009

Chilly Chalmers

I had a tooth extracted yesterday. Fun times. It was a baby tooth. A molar that did not have an adult replacement. It has served me well for the past 28 years (or 27 as I would guess I got it sometime after I turned one year old). Well, the tooth finally had had it. It was literally breaking apart. Time to have it out.

The roots of the tooth, although small, had become a part of my jaw bone. I had to go to an oral surgeon to have it extracted. Okay, Okay, I'll spare you details (whew!). This story is really in honor of my Grandpa Paul. AKA "Chilly Chalmers."

***

When Grandpa was in college he was part of a fraternity. I can't remember the name of the fraternity, but if I recall correctly it involved all young men who were studying engineering. Somehow Grandpa became in charge of the bookkeeping for the fraternity house. Well, to help save money Grandpa's remedy was to keep the furnace very, very low. No small thing when you live in Minnesota! If a member of the household came home to find it freezing cold, you could be sure they would find Paul Chalmers all bundled up, his books before him, content as can be. This is how Grandpa became known to his fraternity friends as "Chilly Chalmers."

This collegiate streak of thrift extended through his whole life. In fact, I believe it to be genetic.

***

Fast forward to my tooth extraction. It was not a simple operation, and I was offered sedation. I considered it. I weighed the pros and cons: Lets see... I am deathly afraid of the dentist. Having my wisdom teeth out was possibly one of the most traumatic medical experiences I've ever had. On the other hand, the thought of being totally unconscious freaks me out, too.

Well, when you have Chalmers heritage, the next obvious question is: What is the price? Turns out the procedure would cost $300 with no sedation, or $800 with. Alright, that settles it! I figured, I've had two babies without any kind of pain medication,and I survived the wisdom teeth operation even if it was awful; I think I can endure being awake to have one measly tooth pulled! (Especially if it's cheaper.)

So, I thought of Grandpa fondly today as I forked over the cash for the operation. I was nervous (a total wreck, actually), but no matter. A little pain has served those in the Chalmers family well when it comes to being wise (or just plain cheap) with managing what God gives us.

Monday, January 12, 2009

Gramps

My Grandpa Paul passed away on Friday. It was not unexpected, yet we are sad as we will miss him very much. Grandma misses Grandpa especially. He is at home with Jesus.

Grandpa was 91 years old, and spent his life in service to the Lord and his family. There are so many stories I want to share with you about his life. How full a life he lived, even up to the very end.

A favorite recent memory is of Grandpa and Grandma's devotional prayer time. As Grandpa grew older, his speech grew slower, his eye sight was very poor, as was his hearing. Yet it was evident from his prayers that God was just as alive in his heart and mind as ever. I remember him praying for Ray and I, for our children, for our country. He prayed for his children. He prayed for his dear friends.

Our senses dim, our bodies grow old, but the word of the Lord and faith in His promises remain strong in those who Love Him and seek after Him. Grandpa Loved Jesus. It was evident in his life, in his prayers. I feel so blessed to have been a recipient of so many of his prayers over my 28 years.

Here is a picture of Grandpa on his 90th birthday.
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Friday, January 9, 2009

Gramps

He's always been there
like a tree whose roots
run old and deep

Gramps
who claps his hands
on his knees;
who takes video
of the rose bushes in bloom

Gramps
whose tummy-clock
keeps a dependable rhythm;
who always has
the right tool for the moment

He roams the house
ever humming
ever looking for some device
in need of repair

He shows his love
in racking leaves
in fetching the mail
in a smile and a chuckle

Gramps
whose stories and life are a
slow and steady presence in mine

His testimony is undiminished
even as his candle burns and flickers
at it's end.

Thursday, January 8, 2009

Happy 3rd Birthday, Charlie!

Dear Charlie,

I can hardly believe my sweet baby is 3 years old.

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I was just thinking today about how incredible it is to have you in our lives. You've surprised and delighted us from the beginning...

I was finishing up my final week of college when I found out I was pregnant with you. It was an unexpected and sweet gift. I thought about you and prayed for you every day as you grew in my belly. Your daddy and I were so excited to meet you. We could hardly wait.

You surprised us by being born a couple weeks before your due date. You decided to be born on the day of our baby shower. We didn't make it to the party, but everyone came together anyway to pray for you as you made your anticipated arrival.

Baby Charlie, 1 Day Old
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You were healthy as healthy can be when you were born. And SO CUTE! You had a round little head, sweet chubby cheeks, and the cutest button nose. All the nurses were stopping in to see the "cute baby" down the hall. The doctor came in after you were born and gave you a thorough exam. He said you were "vigorous" and that you "looked great." We thought so too!

We spent one night in the hospital, and were able to cuddle up together in a special double bed. You nursed, and slept. Daddy changed all your diapers so mommy could rest. We took so much enjoyment in meeting you and learning how to care for you. We were in love.

We took you home the next day with orders to bring you to the audiologist for an appointment. You see, when the nurse gave you the newborn hearing exam, your little ears did not pass. No biggie, though. It's not uncommon.

A few weeks later the results from your hearing test were in. You had hearing loss and would need to have hearing aids. We felt really bad for you. It was not something we expected at all. I cried as I wondered if you had heard my soft singing as I rocked you to sleep. Could you hear your daddy's heart beat as he cuddled you on his chest? We didn't know. It would be 3 and 1/2 more months until your hearing aids would be ready. We felt impatient, and our love and protection grew and grew and grew.

6 Weeks Old
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Then the biggest surprise of all. The one that just blows me away whenever I think of it:

You and I were at Dr. Humphrey's office for a check-up. You were 2 months old. What a healthy little boy you were! So cute and chubby. Your eyes were so expressive. Your appetite so good.

I was telling Dr. Humphrey about your hearing loss. It was called a Bi-lateral Moderate Sensori-neural Hearing Loss. Fancy terms for both ears having some hearing, but not the full amount. He seemed interested in learning this information as he looked you over. He sat you up. He looked at your sweet little toes. He looked in the palms of your hands. Checked your sweet eyes. He asked me many questions about you, like if you ate well (YES!), did you sleep a lot (I don't know, I've never been a mom before), were you content (yes), had you smiled yet... (No, not yet).

Then he said something I'll never forget. He said, "Charlie has many of the signs of a baby who has Down Syndrome."

I'll tell ya, Charlie, at the time that statement really knocked the wind out of me. I was kind of scared. I just had no idea that, in reality, the doctor was letting me in on an amazing gift God had given us.

You are a gift.

As we all know, it turns out that you do have Down Syndrome. You have an extra chromosome. Designer Genes.

International Dress Like a Pirate Day, September 2006
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In these last three years you have been a busy guy! Most children go through stages as they learn each new skill, like sitting, crawling, babbling, walking. These things are not mere stages for you, but major accomplishments. Every time you learn something new, I hope you know that your daddy and I are incredibly proud of your hard work.

You've also been blessed with a miracle. You gained full hearing! We took your hearing aids off for good when you were 15 months old. With all the words you say and understand, a person could never guess that for the first 5 months of your life you could not fully hear the people around you speak.

17 Months Old
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Charlie, you've brought so much wonder and good into our lives. In just three short years we have become experts on all things Down Syndrome. We have met amazing new friends. We have learned how to be advocates. We have learned how to love people who are different in meaningful new ways.

Charlie 27 Months, Calvin 1 Month
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You have opened up the world so wide to your dad and me, and we only hope we can give that world to you and so much more.

Charlie, we are so very proud of you!

Happy 3rd Birthday Little Bug!

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With all my heart,

Mommy

Tuesday, January 6, 2009

Christmas 2008

Christmas started with a humble little tree placed high atop the TV cabinet, out of reach of little hands.
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The week before Christmas we had a visit from Nana and Papa,
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then a sick mama, and then a sick Charlie.
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Nana and Papa left to go back to Great Grandma and Grandpa's house in Auburn.

On the 22nd, we celebrated Christmas with Grandpa Rod and Grandma Kathe, Uncle Russ and Aunt Renee, Uncle Ryan and Kassie.
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Most the time Charlie felt like this:
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And during presents he did this:
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Calvin, on the other hand, was feeling great! He enjoyed his first experience with wrapping paper.
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On Christmas Eve day we left in the morning to drive six hours to Great Grandpa and Grandma's house in Auburn. We met back up with Mommy's side of the family there.

Great Grandpa Paul had to spend Christmas in the Skilled Nursing Facility this year. We missed him dearly, but let him have a 'free pass' for his absence. He is 93 years old, after all!

Charlie was happy to re-unite with his old friend, Kona, the kitty cat.
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Christmas day was made special with our many family traditions. We had our traditional pizza-sized cinnamon role for breakfast. We sang carols lead by my 'new' Uncle Tim. We gathered around the tree to share gifts with one another.
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Charlie's favorite was a little Grover doll Auntie Kelly got for Calvin. Calvin was good to share it.
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Great Grandma Phyllis shared a sweet gift of a letter she had written to Grandpa on his birthday many, many years ago. We had a special prayer time for my Grandpa. What a testimony his life is even now. A legacy for our family.

After all the excitement and wonderful celebration, Charlie was ready for a nap. But not this guy!
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A couple days after Christmas, Daddy, Mommy, Charlie and Calvin made a special trip to the Bay Area to visit Great Grandma Alice.
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Then back to Auburn to stay with Great Grandma Phyllis, who had by this time come down with the tummy bug that was going around. Despite all the sickness going around this Christmas, it was a blessing to spend time with Mommy's family.
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The End

Friday, January 2, 2009

A New Year's Miracle!

This just in...

CALVIN DAVID SLEPT ALL NIGHT LONG!

Now back to your otherwise boring lives.

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