Specialists

Shortly after Wil's diagnosis of Down syndrome we were handed a list of other medical problems to which his extra chromosome predisposed him.
The list included, but was not limited to, the following:
Heart defects (check - three of those, all repaired)
Thyroid problems (check - he was diagnosed with hypothryroidism at one year)
Eye problems (check - at two he received his first pair of glasses for farsightedness)
Hearing problems (so far so good)
Intestinal abnormalities (nothing major though has regular GI "issues")
Siezure disorders (no problems here)
Leukemia (again, so far so good)
Obesity (he does have a buddha belly but I think we're alright for now :o)
Increase susceptibility to infection (yup)
Atlanto-axial instability (check)
A daunting list, no? It certainly was for us when Wil, still in NICU, was diagnosed with Ds, which in itself was enough to absorb. We couldn't wrap our mind around all of the other potential medical concerns. We just wanted to get him home. But before we would leave the hospital a month later we had our first specialist. A heart specialist, who would monitor Wil's three defects and eventually send us to a surgeon for open heart surgery. It wasn't much later that we would add an Endocrinologist, Opthamologist, Audiologist, Orthopedist, and Gastrointerologist.
If I had been told that day in NICU that Wil would indeed have a number of the medical problems on the list I think I would have been too overwhelmed to take the next step.
I certainly get overwhelmed - all the time, just ask James - but when I look over the last three years I can see just how gentle God has been with me, with us. We have been given one diagnosis at a time - only after we have developed some understanding and become accustomed to the routine or meds required for the last one.
Because of that list from the NICU we have known for some time now that when Wil turned three he would be x-rayed for Atlanto-axial instability. This is an instability in one of the joints in the neck (the atlanto-axial joint). It is the highest joint in the spinal column lying just at the base of the skull. Basically Wil has too much range (forward and back) of motion between C1 and C2 and this can cause pinching of his spinal cord. Not good.
So, we are adding a new specialist to our list. Neurosurgeon. Today we were told that at one time C1 and C2 were always fused when the range of motion was over 4 mm. That is not the case anymore. Some are not getting fused until they are at 10 mm. Wil is at 7mm. However, the determining factor will have more to do with the degree of spinal cord pinching than with his "number." This will be determined by a sedated MRI sometime in the next several weeks. And then we will be told one of two things: 1. keep following the AAI or 2. stabilize the joint by fusing C1 and C2 together.
Please pray with us that our little guy will not have to have neurosurgery. After we handed him over to the heart surgeon two years ago I said I could handle anything that came our way, it was that hard. And I know, with the Lord's grace and mercy that I can. However the thought of surgery around his spinal column leaves me a tad uneasy.

Wil enjoying his favorite activity. Being pulled in his wagon by Nonnie. And yes, I attempted to cut his bangs - we will be visiting a professional this weekend. :)

Our home needs a. . .

Mudroom!
Our backyard is a mess right now. We have removed - thanks to the hard work of my dad and James - all the trees downed from the tornado and had the fence repaired. We also had the stumps ground. So what we have is a little boys dream behind our grass line. Mud, and lots of it!

So now our backyard is getting a face lift. We are laying more sod, cutting beds for perennial gardens and planting shrubs.

I really enjoy being in the yard and I hope the boys will develop an appreciation for gardening. For the beauty of a well maintained yard and colorful flowers, for the care involved in nurturing plants, for the patience involved in waiting for spring perennials to pop through the soil. And just being outdoors, using your hands to dig and plant and care for something.

But let's face it, my two little ones? They are all about destruction.

Who am I kidding? Will I really be able to instill an appreciation of beauty into this bruiser?

And this one? Well, he is all about making as big a mess as possible. And I suspect my perennial garden will be a tempting grab bag of color for these destructive little hands and less a thing of beauty to him.

Ahhh, boys.

Strawberry Fields Forever

Mmmmm, fresh strawberries. There is something really satisfying about picking your own food. It almost makes me want to grow my own. Almost. For now I will stick with picking and buying from local growers.
Today, after dropping Wil off at school we - Luke, Timothy, Nonnie, and I - went to a local strawberry patch and filled up three buckets of plump, red, juicy strawberries. Yum.




Luke, who can go through a pint of strawberries in 60 seconds flat, was in strawberry heaven, exclaiming over every berry he picked and eating them up along the way.




And Timothy enjoyed the muddy corridors while occasionally grabbing at the irresisitable berries.

Tuesday night is "company night" around here. I think we'll have strawberry shortcake for dessert!

Tagged

If you frequent the blogosphere then you are familiar with the meme. If you don't then I will give a brief explaination. The whole idea behind being "tagged" for a meme is to share your ideas, thoughts, experiences, or just answer a set of questions, whatever the meme requires, and then tag others to do the same. Here is a more formal definition of an internet meme. I suppose some would say one has not been truly indoctrinated into the blogosphere until tagged for a meme.

Now I am normally not one to jump on board with these things. Not because I am a party pooper but because I don't feel like I have much of interest to share. But this time I will play because the fun and cool Tina tagged me and well, I wouldn't want to let her down. :) And Tina, by the way, makes and sells very cute and whimsical note cards. You should check them out.

Okay, the meme. Here are the rules:
1. Link back to the person who tagged you. done
2. Post these rules on your blog. done
3. Share six unimportant things about yourself. coming up
4. Tag six random people at the end of your entry. yeah, I don't think I am going to play by this rule. Chain letters always ended with me too. Maybe I am a bit of a party pooper.

Six unimportant things about myself:

1. I like my cheeseburgers plain. Yep, my husband still doesn't get this about me. No lettuce, tomato or onion. And certainly no banana peppers, jalapeno peppers or any other peppers. I do take a smidgeon of mustard, mayo, and ketchup, don't want it dripping though. For me it is all about the meat and I don't want anything interfering with it!

2. I don't like going to the beach. I appreciate the ocean with all it's vastness and beauty. I appreciate the sounds of the waves crashing against the sand and the birds chirping over head. But that's about as far as it goes, appreciation. I don't like sitting on the beach, swimming in the ocean, making sand castles or scouring for shells. The reason? I cannot stand to have sand against my skin and I don't like feeling sticky, both of which are inescapable at the beach. Those things combined with the heat and well, that is the making of a pretty miserable experience for me. I'm a mountain girl all the way.

3. I love listening to my boys giggle with their dad. Sometimes I like to hide out in my bedroom upstairs and listen to James with the boys as they climb all over him, giggling and playing and asking for more. It is such a sweet sound.

4. I'm a wannabe singer. Now, I can't sing worth a hoot and am only as good as the person sitting next to me. So, in other words, if they can't carry a tune then I am out of luck because I can't find the note myself. But I have always had this wild dream of sitting on a small stage playing acoustic guitar (also something I cannot do) and singing for my fans, in a Nanci Griffith sort of way. Talk about a pipe dream!!

5. I have never been to Washington, D.C. I know, what a shame, huh? Maybe I will chaperone a field trip for the boys one day because I don't see traveling in my near future.

6. I don't know what I am doing with my boys most days. I just muddle through and hope I am teaching them something worthwhile and that I am not screwing them up too badly. Good enough mothering, I am all over that!

Thanks for the tag Tina, it was fun!

It's 3 am, do you know where your child is sleeping?

I knew something was brewing in the house. Timothy was increasingly cranky. Wil was entering one of his "bad diaper" cycles. And it had been a few weeks since the last illness. Luke woke with one of those asthmatic sounding coughs, but he doesn't have asthma so I assumed allergies, gave him a dose of Claritin and sent him back to bed. There is lot's of stuff blooming afterall.

And then fever set in for Timothy along with an all over body rash. Wil kept James busy running baths to soak his sore bottom. And Luke, on Friday night woke every two hours in a panic over his cough and inability to take a deep breath. So at 1 am we started steam showers. Poor guy. "Does this mean I am getting sick?" he cried in his most pitiful voice as he gasped for air forcing himself to hyperventilate. He sat on the toilet as the bathroom filled with steam and his airway opened. And just like that he was back to himself. "Mom, can you bring me a pillow and blanket? I am getting tired of sitting on the toilet but I really like it in here so I think I will just lay down and get comfortable." I convinced him he should go back to bed and set him up in the guest room with a humidifier. An hour and a half later he woke in another panic. By the time I got downstairs he was starting the shower. So I found a place on the sofa while he sat in the bathroom. When I went in to get him I found this. . .

I thought seriously about leaving him there with the shower running. I would be sure to get some sleep that way. But. . . somehow that felt wrong, letting my kid sleep on the bathroom floor. So, I got him up and back in bed. We went through it one more time before getting up for good and making a trip to the doctor.

After two days on oral steroids for croup he is feeling good again. Although he just walked through the den and shared the following with me, "Mom, it feels like I have to go stinky but then when I try nothing comes out. It is very confusing."

Never a dull moment around here.

Today I am wondering. . .

how it is possible for my car to have a 1/4 tank of gas when I get out and be "in the red" when I return. Hmmmm. . .

Melissa Riggio

Melissa Riggio, the daughter of the Barnes and Noble CEO Steve Riggio, was a talented young woman with a bright future. She loved to read, write and listen to music and was an inspiration to many. Melissa contributed an article to National Geographic Kids about living with Down syndrome and her desire to be known, ". . .I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about."

Melissa was diagnosed with Leukemia last summer and lost that battle this week. Her family are strong advocates for Down syndrome and it has been a joy to hear Melissa advocate for herself as well as others who carry the extra 21st chromosome. She will be missed by the Down syndrome community.

Everyday Elliot

Mary from Everyday Elliot will be receiving a copy of Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome. Check her out. Today she writes about an important bill that is now before senate that will help get accurate information to women who receive a prenatal diagnosis.

Connecting. . . and a give-away

When Wil surprised us with his early arrival three years ago, and then his extra chromosome and heart defects we hardly knew where to turn. We didn't know anyone with Down syndrome. Our images were those of adults in group homes being led around the mall or a festival by their caregivers. And those were just images, we had no facts. So, after talking with the very unhelpful social worker that came to my bedside and Wil's after his diagnosis, we turned to the internet. We found a lot of outdated information and the occasional encouraging essay or paper. What we quickly learned is that the most helpful information came from other parents of children with Down syndrome. Parents who were a few steps ahead of us and could give us a truer picture of what life might look like for our son and our family. Message boards like downsyn.com became a lifeline and parent blogs a huge source of encouragement.

Of course no two experiences are the same but we sure did find understanding, hope, medical knowledge of ds and the related issues that rivaled the average pediatrician's knowledge, and most importantly to me pride and privilege. I felt this sense of privilege from early on, there was just something about Wil that stirred it in me, but it was challenged by the grim outlook many medical professionals offered. As I read the blogs of other parents and began to dialogue with them and as I began to experience Wil myself my sense of privilege was cemented.

One of the mom's that I read regularly is Jennifer Graf Groneberg. She is vulnerable, honest, insightful, and loves her boys deeply which oozes from her writing. One of her twin boys, Avery, has Down syndrome and she writes about this in Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome which was published this month. My copy arrived yesterday morning and I am already well into it. I have found myself nodding in agreement and understanding as well as filling up with tears as her account throws me back to our own early days of confusion. If only I knew then what I know now I wouldn't have been so scared. While we all have to take our own journey hopefully, with Jennifer's book now available, new parents getting this diagnosis will feel a little more ready for the ride of their lives.

I purchased two copies of Road Map to Holland. One for myself and one to give. And this book, by the way, will speak to every mom and mom-to-be, not just those parenting kids with special needs. So if you would like your own copy of Jennifer's book then just leave your name in the comment section. I will be randomly selecting the recipient on Monday evening. Thanks for playing and have a great weekend. I am going to be reading.

The most recent request from my eldest. . .

LR: Mom, I think I need some vagisil.

Me: Uh, wha. . . you need what honey?

LR: Some vagisil, I need some vagisil cream.

Me: And what do you need that for?

LR: Because my arms are itchy.

Me: Okay, and you think vagisil will help you?

LR: Yes. That's what the commercial said. It helps with itching and burning and it smells good too. That's what I need for my arms.

Mr. Helpful

Throughout the day Timothy brings me things. Sometimes it is from the laundry pile, sometimes it is from the garbage, sometimes it is from the bookshelves or bathroom drawers or under the sofa. Basically whatever he can get into and grab a hold of he carries to me. He always releases it with a grunt, his version of "here you are, and you're welcome." Now, sometimes he is being helpful. Like when I am folding laundry he hands me the next piece of clothing before I can manage to complete and stack the one that is in my hand. Oh how I long for the day when he will do all the folding himself! When it comes to folding clothes I am a-okay with child labor. When I am unloading the dishwasher he hands me a spoon to put away, again very helpful.
Then there are the times when I round the corner to find him digging around under my sink. At which point he stands up and hands me a tube of hair gel as if he were getting it for me all along. Or when I find him digging in the trash can and he looks up to realize I am standing there and hands me a paper towel covered in coffee grounds as if it is just the thing I need. This, I am learning, is how he is defuses the situation to avoid the possibility of getting a stern "hands off, Timothy." Ahhh, they learn to manipulate at such a young age.
Most of the time Timothy hands me the random object and moves on but occasionally he changes his mind and wants it back. Usually I am able to oblige and return his object of desire but occasionally, for his safety (because, you know, one year old kids shouldn't be playing with razors and I answered "yes" to the "Is your house baby proofed?" question at his last well visit so I wouldn't know how to explain the cuts), I do not return the coveted item. That's when I get his angry yell.

This kid, he gives it all he has! Isn't the third child supposed to be laid back?

But it doesn't take much to make his world right again. . .

A lollipop from Nonnie does the trick.

Wil's Big Day, Part II

After six weeks of transition meetings and evaluations the day I had been mildly uneasy about arrived. Wil's first day of school. Oh noooo, the only time we leave the house this early is for a doctor's appointment.

Okay, I'll wave goodbye but I am not happy about it.

Hey, this doesn't look like the hospital. Cool!

After we take care of some business in the office we make our way to Wil's class. He was so fascinated with all the children making their way in, excited to be back after spring break. There was a definite energy in the hallways and Wil seemed drawn to it. When we got to his class he nearly dove out of my arms as he scanned the brightly colored room. And then he was off. Exploring the resource room, the kitchen, the activity center and finally finding a ball wedged between a bookshelf and the wall. When I left him he was signing "ball" and "help." He was going to be just fine. And I left with only a slight knot in my throat.


They aren't seen in this photo but Wil has discovered the books. He loves to flip the pages and sign away! I have a feeling he will be spending his free time in this little room.

Making his way around the chairs set up for 'circle time.' His teacher said that after circle today he actually stood and walked a few steps to her for his sticker! Yay Wil.
So this is where he will spend M-F mornings for the next two years, with the exception of a few weeks in the summer. I have a feeling he is going to be a different boy when he graduates. This transition may have been tough (on me) but it became very clear to me as I watched him respond to this new world that it is exactly where he needs to be.

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