Monday, March 30, 2009

Prednisone Grouchies!

Ei yi yi (or something like that)! Charlie has spent all of today and most of yesterday a moaning, kicking, crying, rolling mess of a toddler on the floor. Poor guy.

It's the Prednisone. It is making him really grouchy! I feel bad for him, he barely has a handle on himself, and he's feelin' it.

We stopped the prednisone yesterday morning as soon as we felt he was past the awful wheezing he was having along with his croupy cough. Prednisone is one of those drugs that you love and hate. You love it as a last ditch effort to help a child breath, but hate all those side effects.

Meanwhile, our little Calvey is staggering all around the house with a crusty nose and a big smile. Gotta love that cheerie little face. Life's all peaches and cream for our Calvin.

Friday, March 27, 2009

Meds, Cuddles, and Peaceful Sleeping Babes

Took Charlie to the doctor. I tried to get Calvin in as well, but they were already double booked. Calvin doesn't seem to be having any respiratory stuff going on, so we're just letting him ride out the weekend.

Charlie definitely has croup. We are to continue with nebulizer treatments as we have been doing. We also came away with an RX for steroids to help with inflamation as he is having quite a lot of wheezing in his chest. He also has a double ear infection. His first ear infection ever. So, we have anti's as well.

We had a cozy evening, had a few nibbles of dinner, lots of fluids, meds all around. The kids were off to bed before eight, and are sleeping peacefully. Waiting for the croup to kick in tonight for Charlie. Every now and then I hear that distinctive cough coming from the bedroom. We have the nebulizer at the ready, though. It's not all bad to have to snuggle with your boy in the middle of the night.

Oh, there he is now. Better go.

A Couple of Sick Fella's

Charlie sounds like a barking seal, that classic croupy wheezing complete with a case of 'cuddle-me-all-day-long' and a 102 fever.

Calvin is seal-bark-free, but has a matching fever of 102. He also has a case of 'don't-you-dare-set-me-down-or-leave-the-room'.

As a friend from the UK says "Poor sausages."

We have a doctors appointment this afternoon just to have them looked over, make sure it is nothing serious. I'm sure it's not. In fact, it seems most the times we go to the doctor, the boys are magically cured by the waiting room toys. We get into the exam room, and I forget why I even brought them. How does that work?

We are so blessed in this house to have two hearty, healthy boys. Both Charlie and Calvin seem to weather every little virus that comes their way with ease. In fact, I've begun to look at illness as immune system building opportunities, but maybe that is just the Pollyanna side of me adding a positive spin to an annoying situation.

So far today, we've watched every movie that we always watch when sickness sets in; we've had one short lived dance party (I think it was the children's Tylenol talking there); we cuddled and rocked in the "big chair"--all three of us--several times; I finally had a chance to use the bathroom and half-way change out of my jammies.

A short Charlie story. We were cuddling in the chair. Calvin was crying and crying, he was so tired. Charlie, who was wheezing and whimpering himself, began to stroke Calvin's head. The most tender, calming touch. Calvin began to fall asleep, and Charlie sat up to look at him. He kissed his cheek and held his hand until he was totally out. He let me get up to carry Calvin to his crib even though he himself needed to be held and comforted. I can't say I do a better job of putting other before myself. Charlie has such a tender heart.

Monday, March 23, 2009

New Concept

We've been working with Charlie on the concept of "ouch" and "hurt" for quite a long time (okay, a really long time). He knows when he has been injured, and he certainly lets us know is no uncertain terms when he is not feeling well; but, when it comes to things like asking him 'where' it hurts or 'if something hurts' (as opposed to him crying for a different reason) or 'be careful so you don't get hurt' he has lacked understanding.

This evening Charlie gave indication that he is catching on. He was dancing around naked after his bath (don't you miss those days?), and was getting a little to close to the wall heater. I stopped him and said "No touch, Hot! I don't want you to get an owie." Charlie looked at me, then at the heater, he then touched the heater (stinker) with his finger and said "Hot! Owie." Then he signed and said the word, "Hurt" and pointed to his finger (which, by the way was just fine).

So, Yeah! He's gettin' it! It was as if in that instant several pieces of the puzzle came together for him. We'll have to wait and see if he starts talking more about his owies this week.

I love it when Charlie catches on to something. It is so amazing to watch right before my eyes when 1 and 1 add up for him. We work and work and work, and then all of a sudden who-knows-what will help him connect the dots, and he gets it. He's an amazing boy, that Charlie.

Thursday, March 19, 2009

Off to Sac Town, and a few B-day Pics

Ray and I are so excited to be leaving the county tomorrow. We are quite remote up here in Humboldt county. A strange little redwood island within California. It is nice to, once and a while, leave the woods for the city. We are going to a conference in Sacramento for a couple days, and taking the kids with us.

Before we skip town, I thought a certain set of Grandparents would want to see these pictures of Calvin's Birthday party.

Here you go Nana and Papa! We miss you!

I'm naked and everyone is staring at me.
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Oooo!
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Let me fix this...
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I like it, mom!
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Presents too? Awesome!
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This day is turning out to be ALRIGHT! :)
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Wednesday, March 18, 2009

Just had to share

I think as a parent of a child with Down Syndrome, a condition where over 90% of prenatally diagnosed cases are terminated, there is this sense that to say anything negative about our parenting experience could literally be putting lives at risk. Is it worth sharing the not so great parts?

There are a few reasons I keep this blog. One reason is to keep family and friends updated on the boys, another is to meet other parents who have children with Down Syndrome (we are quite the on-line community, wouldn't you say?). I keep it because it is a great way to preserve memories for the Charlie and Calvin. And last, I keep it because I hope that in some way it can help new parents of children with Down Syndrome.

My desire is to honestly share my experiences as a mother of two boys, one genetically different than most. I want people to see that we are just a regular family. That we do normal things. That our lives are not negatively impacted by Down Syndrome.

Our lives are richer for that tiny little chromosome. That extra 21.

But, today I will say it. I will confess that there are times that I wonder. I wonder what life would be like with two 'regular' kids.

I had this idea of motherhood before Charlie. I had visions of warm home-made bread, of clothes drying on the line. Cloth diapers and long walks in the forest. I had ideas of a tidier home, and a hot meal every night. Ideas of going to the park and watching the kids play on the jungle gym.

I don't mourn Charlie having Down Syndrome anymore. Down Syndrome is simply a part of Charlie I would never want to give up. But here and there, I will admit, I mourn the loss of a more regular life.

With a child with a disability there is so much emphasis on therapy, learning, development, health issues... Charlie is 3 years old now. He is in preschool! Where did the time go? Where is the laundry that was supposed to be hanging to dry? Where's the homemade bread and yogurt? What happened to mornings spent outside in the garden, dark soil squishing between baby toes? Where is that simple life?

Truth is, it was washed away in hours of therapy. It was burnt up driving to appointments. It was avoided for the sake of a child who cannot, even and age three, safely play on a jungle gym alone, or be trusted not to run into the street when spending time in the garden. It was set aside when the cloth diapers proved too bulky for him to learn to roll, crawl, or walk in.

I miss that ideal life sometimes. More so now that Charlie is in preschool 4 days a week, and Calvin and I have more time to ourselves. I see Calvin doing all these things at the tender age of 1. All these amazing baby things and I think how easy it is to simply guide a child's development as it unfolds rather than coax, prod, will it to come forth.

He's catching him, you know. Calvin is catching up to Charlie.

Sigh...

It is a different life we have. It is not what I had envisioned.

We've adapted. We've created something small and beautiful and wholly ours. It was a wise woman who once told me "There is more than one way to have a good life." She's right, you know.

It's just sometimes... sometimes those old ideas, those coveted ideals, they crop up and nip at the edges of your heart. They threaten to plague you with guilt for not having it all.

I'll be okay tomorrow. Tonight I just had to share.

Friday, March 13, 2009

Happy Birthday, Calvin!

My dear sweet baby Calvin,

Today you turn One! Yay for you! What a big boy you have become in one years time.

Calvin, you are truly amazing. I will share a secret with you. A secret you will understand one day, far in the future, when you become a good daddy of one and then two children:

When you were still growing inside me I worried that I would not have enough love to share with two children. I love your brother so fiercely, so fully, that I wondered how would I be able to love a new baby with all the love he would deserve.

Well, Calvin, my sweet little boy, my worry was unfounded. It seems love is not measured in measurable amounts. Love is not a warm pie given out slice by slice until it is gone.

My love for you is boundless. When I look at you, into your hazel-eyes-just-like-mine, my world opens wide and I breath deeply fresh air it seems for the first time. The way you crinkle your nose makes me crinkle mine back in delight. The way you raise your small hands up to me, well, what else can I do but gather you in my arms and kiss your soft neck over and over.

Calvin, you are a miracle to your dad and me. You are so special. Created to be loved. It is so easy to love you.

My prayer for you, Calvin, is that we continue to walk this path, learning and living, laughing and, of course, growing in love. You and me, daddy and Charlie, too. You are a gift to our family. So glad you decided to join us (on the outside) one year ago at 4:01AM. My Calvin David.

Love,
Mommy

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Sunday, March 8, 2009

Calvin

Just a few pics of the early days

Day One, just a couple hours after making his big debut.
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Curious from the start. One month old.
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First picnic at the Farmers Market.
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It's a big job.
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It's amazing to think he was ever this small.
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Brothers.
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Saturday, March 7, 2009

25 Things About Calvin

(Okay, that last post was just about the longest post EVER! Here is a short simple post about the birthday boy.)

1. Calvin crinkles his nose up when he greets us in the morning.

2. Calvin refuses to eat anything pureed like baby food or yogurt.

3. At any given time there might be a Cheerio or two stuck to Calvin's bum.

4. Calvin wears size 18 month clothes.

5. Calvin started crawling at 7 months and taking steps at 11 months. We expect he will be a full fledged walker by the end of the month.

6. People line up at church to hold Calvin or make him smile. He is a popular guy in the community.

7. For breakfast Calvin usually has dry cereal and half a banana.

8. Calvin knows some sign language. He can sign dog, more, bird, elephant, all done, air plane, and baby.

9. Calvin also has a couple words. He can say mama, dada, and hat.

10. Calvin loves books!

11. Besides his words, Calvin has several sound effects. He makes engine noises when playing with vehicles. He squeaks to make the sound of a bird. He says "uff uff" to make the sound of a dog, and he sort of gargles to make the roar of a tiger.

12. Calvin has eight teeth, which he likes to have brushed every evening before bed.

13. Calvin has a couple nick-names: Calvee, Calvinator, Cal

14. Calvin worries that if he naps too long he will miss something fantastic.

15. Calvin has learned some pretty sweet dance moves from his brother.

16. Ever since he learned to walk, Calvin thinks he must be at least 2 or 3 years old.

17. Calvin often holds Charlie's hand when riding in his car seat.

18. Calvin's name means "little bald one." Who comes up with these things!

19. Calvin's middle name, David, was very nearly his first name.

20. Calvin is named after the cartoon strip character Calvin and Hobbes.

21. Calvin would rather not play by himself unless he feels like getting into mischief. In that case he usually acts alone.

22. Where's Calvin? Probably trying to climb into the bath tub! He loves taking a bath.

23. Calvin is a very light sleeper. If you so much as step on the creeky board in the floor, he will wake up.

24. Despite his 'little bald head,' Calvin refuses to wear a hat or hood, even on the coldest day.

25. Whatever Charlie's doing, Calvin wants to do also.

Friday, March 6, 2009

A Birth Story, Revisited

One week from today my sweet baby Calvin will turn One.

Oh Calvin! What a year it has been.

Over the next week I would like to revisit the memories of Calvin's first year. It seems only proper to start at birth.

Calvin's birth was a planned home birth. He was supposed to slip easily into this world in the peace of our bedroom. After the straightforward, simple birth of Charlie, we had every reason to believe Calvin would be born without struggle.

Well, we never get what we are supposed to get in life, do we? Ray and I, of all people, should know that.

Below is the not-so-straight-forward, very-difficult-indeed home birth story of our incredible little Calvin. I wrote this story and posted in this blog a short time after Calvin was born. In it I mention feeling, well, a bit traumatized by the whole thing. I will say, twelve months later, that when I think of the possibility of giving birth again, I do feel a bit of that trauma tighten in my stomach. But really, I am grateful, so very grateful, to have had our Calvin in our home. Calvin gave us a run for our money during birth. It was by far the toughest physical feat I've ever accomplished. This coming from a woman who has run 27 miles straight over mountain terrain in the Sierra for fun. I truly believe that by having Calvin at home we avoided more physical and psychological trauma had we attempted to birth him in the hospital. Just my personal belief about this one specific birth...

Anyway, here it is.

The Birth of Calvin David

Calvin David’s Home Birth
March 13, 2008 @ 4:01am
8lbs8oz, 20 ½ inches long

When pregnant with my oldest son, Charlie, I was enthralled by it. I thought about and prayed for our developing baby so often it felt as if my own will was causing him to grow and thrive. Charlie has Down Syndrome, and as he grows our prayers and hard work are still invested in his development and health. Charlie has taught us much about laughter, perseverance, and how to struggle in life with grace and a smile.

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This, my second pregnancy was different. Calvin’s pregnancy became a lesson in surrender. Surrender to the process of creation happening within me. I did not feel the same urgency for prayer, but a call to allow God to work without hindrance. Even Calvin’s birth required, and perhaps demanded, this theme of surrender. My will had to take a back seat to allow Calvin to come into the world. This is how it went:

Labor began at 7am on March 12th as I nursed Charlie in the morning. Contractions were mild, and I continued to have them about every 7 to 10 minutes. Not knowing what would become of them, I went about the day not mentioning them to anyone. I went to a parent/teacher meeting at 8, and went on a walk with friends at 9. At 10:30 I came back home to be alone while Charlie was at preschool. I soon had some bloody show. Hooray! A concrete sign that I was in labor! I was excited and affirmed that indeed these contractions were doing something. This could be ‘it.’
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By 11:30 I was sure I was in labor. I called Ray to come home from work and take Charlie to Grandma's house. I called our midwives to let them know things were happening. We all expected this birth would be fairly short considering the ease of Charlie’s birth.

Throughout the last 6 weeks of pregnancy this baby had his head cocked toward my left hip instead of straight down. I was concerned he was still oriented this way, so I asked our midwives to come around 5pm to assess his position. Baby was still headed the wrong direction when the midwives arrived. I was still in early labor, and after some tears of frustration about the baby’s stubborn position, Ray and I decided to lie down to try to rest for a while. It was becoming clear that this was not going to be a simple 12-hour affair.

Of course laying down kicked things into a higher gear. As soon as we settled into our bed, contractions started coming on harder and faster. After ten minutes I told Ray I couldn’t just lie around. So we went to the shower. I found it helpful to sing while in the shower, and it was amazing to have my husband harmonizing with me as we labored to bring our second child into the world. I labored a lot with one foot up on the side of the shower. I lunged and squatted. I talked to the baby between contractions telling him today was the day to come out, and to tuck his head into mommy’s pelvis. I told him I promised to do everything I could to take care of him, and that there was nothing to fear.

After getting out of the shower the midwives assessed the baby’s position again. He was still headed toward my left hip. We decided to do an internal exam to assess how labor was progressing and to get an even better idea of how the baby was positioned. I was at 4 cm and the baby was high. We decided to start filling the birthing tub (a Rubbermaid water trough) at that point, and as we waited for it to fill I labored in many different positions, hands and knees being my favorite.

A second internal exam revealed I was at 6cm. Contractions were fairly hard, and I headed for the tub. The water felt good. It was not as relieving as I’d hoped, but it was a nice distraction from the intense active labor. I spent quite some time in the tub before I felt the need to get out to stretch my legs and have a change of scenery. Baby was still high and headed left of center. Labor was very intense. I was emotional and worried. We did lots of standing, dancing, and squatting. I spent many contractions flat on my back as our wonderful midwives attempted to find out what our baby was up to.
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As midnight approached, I began to loss hope and patience. I hit an emotional low after the fourth internal revealed I had stalled at 8cm, and baby was still acynclitic and high up. I headed back to the tub and roared through contractions that were stronger than I’d ever experienced. I was so low. I felt like every contraction was pointless, meaningless pain. I felt defeated. In truth, I wanted to go to the hospital, but dreaded the thought of labor in the car. I really think it was at this point that I let go of my own will and fear, and simply allowed the experience to overtake me. There was no way around the pain, and no technique that could distract me from my reality. I was beyond the point of having any control over my body and experience. I could only go through it and yell, cry, and feel every sensation.

Our midwives are amazing. It was now well past midnight, and they had been supporting, encouraging, and comforting me for hours of an emotionally and physically difficult labor. Now they sat at the kitchen table, textbooks out, working on a game plan to help our baby get into position since it appeared that he wasn’t going to do it himself.

Around 2am I got out of the tub and gingerly walked back to the bedroom. The plan was to manually attempt to tuck the baby’s chin to his chest, and help him settle into the birth canal. During the internal it was found that I as now 9cm, almost 10, with a bulging bag of waters (the best news I’d heard in a while!). The baby was still high, but not as high as he had been in previous exams. I labored through several contractions while one of the midwives tucked our baby’s chin to his chest. More importantly we were able to feel that the cord was well out of the way. With this new information we all agreed it was time to break my water and bring this baby down.

We broke the water around 3am, and I felt instant relief. It felt like an immense amount of pressure being instantly released. I also felt the baby move down. Within a few more contractions I was ready to push. I found lying down on my back was the best position for me to push, mostly because I was so tired. I pushed as hard as I could on my back and on my side. I could feel the baby slowly move down. I was able to reach down and feel the wet, wrinkled tip of his head emerge from my body. It was intense, but it felt so wonderful compared to the hellish contractions of active labor and transition. 15 minutes after I began pushing, our amazing and stubborn baby boy was born. He was placed on my chest, all purple and covered by a thin layer of vernix. His head was extremely molded. He looked like he had two different foreheads, and you could tell how he had his little head cocked funny during labor. We were amazed at our new little son. He was grunting a little, and needed a few puffs of air to help open up his lungs. Other than the grunting he was looking and doing great. The placenta came within 20 minutes of birth, and we kept “David” (he looked more like a David than a Calvin at that point) connected to his placenta for a while after that. We had a wonderful time resting in bed together while the midwives got busy cleaning up the house. I actually felt really great (thanks to a HUGE endorphin rush). I had not torn at all, and recovery was a lot easier than it had been with my first birth.
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A birth educator I know has said that women don’t always get the birth they want, but the birth they need. For the first few days after the birth I felt traumatized by the whole event. It seemed the only redeeming factor of the experience was that it had indeed occurred in our home and that we had a wonderful bonding time and recovery as a result. As the days continue to pass since the birth, I realize what a gift it was to be able to experience such a difficult labor in my home. At a hospital I may have requested drugs or interventions or other treatments that I would later regret (our personal desire is to avoid meds, but believe me I COMPLETELY understand why women choose to have pain relief during labor!). Birthing in my home, while very (very, very) difficult, left me with nothing to regret or rationalize. I also felt humbled. The intensity and difficulty of labor broke down emotional, physical, and spiritual walls in ways I hadn't experienced before. I feel this process of intense surrender has prepared me to mother Calvin—to let go and let Calvin unfold and go forward. Development can be a monumental struggle with Charlie. In contrast, these last six weeks we’ve watched our newest little guy learn all about his world with little help from us. He learned to communicate his needs, to identify each family member, to nurse, burp, poop, and to smile all with naturalness and ease. My role as a mother is not diminished by Calvin’s ability to learn and grow with more efficiency than Charlie; but, it is different. I am learning each day what this means as I surrender my will and ask for God to help me parent each of my boys in His gentle way.
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Tuesday, March 3, 2009

Preschool Day Two

Yesterday was Charlie's second day at Special Ed Preschool. He did fantastic, of course!

A first: Charlie rode the bus to and from school yesterday! He was a little unsure about getting on in the morning, but the driver was able to get him all strapped in with very little fuss. My plan was to put him on the bus in the morning, then drive to the school to get him off and walk him to his classroom. I was worried he might be confused or frightened by riding on a school bus for the very first time, only to end up at school he had only been to once before. Well, it was a whole lot of worry about nothing! I got there too late to get him off the bus. He was already in his class, and when I poked my nose in to check on him, he was having a grand time reading Dr. Seuss books with one of the teachers and his new little friend L. I think he was quite happy to take a bus ride and end up at school. He loves it there.

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It was 'wear your pajamas to school' day yesterday. All our jammies are old and raggedy it seems, so we opted for a one piece jumper instead. It was cute to see the kids walking into the classroom yesterday looking down at their attire, feeling a little bewildered. Charlie is in a class of non-talkers, but if we could see what they were thinking I think it would have been: "I think my mom forgot something this morning... I'm still in my jammies!"

My drive to the school served a double purpose. I got to meet the speech therapist and talk to her about Charlie. She was glad to hear that he is going to a typical preschool class as well (actually, it is a day care, but he will be in the preschool class next semester). Charlie is doing so well with his language development. His vocabulary is broadening every day, he is beginning to speak in 2 word sentences. He imitates, labels, and even expresses his wants (when it comes to food!). Ray and I, and the ST all seem to wonder if the non-verbal class is the right place for him since he seems primed in the area of verbal communication right now. The biggest issue right now is intelligibility, meaning understandability. He is very difficult to understand!

The school had a special Green Eggs and Ham Dr Seuss breakfast yesterday. All the classes and grade levels met up in the multipurpose room for a big banquet. Before I left the school, I stopped in to see what Charlie thought of the event. I found him smiling and laughing and banging his hands on the table. He is having a ball! It makes me so happy to see he is enjoying this new school.

Charlie came home with some fun art work in his back-pack yesterday (is back-pack hyphenated?), including this Dr. Seuss hat.

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