Growing Up

Finally! Luke is done with Preschool. It was made official today with a graduation ceremony. Complete with cap and gown.

Luke was happy to sit next to his buddy, P, during the ceremony. P has been his best pal all year. They share bathroom humor (unfortunately) tall tales (like werewolves visiting them at night), girlfriends (that's right they are becoming smitten with the girls), and a love of Pirates. It was very nice of the teachers to allow them to sit next to one another. Because during class? They have been "split up" for some time now. Evidently, P is just as chatty as Luke and the two of them together made the teachers head spin.


Here is Luke (on left) chatting up his friend during the ceremony. No doubt making a silly face.

And now Luke has turned to give us a smile after his teacher had to give him and P the ole' "cut it out" pat on the shoulder. Note his teacher's arm over the pew. It pretty much stayed there the whole time.

Receiving of the Diploma. We now have a kindergartner.

Luke and J. J is evidently talking marriage. Luke, however, tells me that J is "too silly to be in love with." O (no pics of her), however, is much more the marrying kind and Luke reports that he loves her. When asked what he loves about her he says, "I like the way she looks." Turns out it is the green hair ribbon she adorns that really pulls him in.

Luke is so ready for his next phase. Me? Not so much.

Seriously?

"At Home with Down Syndrome"

Please, take some time to read this essay by Caitrin Nicol published in The New Atlantis. She writes compassionately about the realities of Down syndrome, prenatal diagnosis, misconceptions, abortion, the bright future our kids have and the gift they are to those around them. She does this while weaving in stories from a number of personal accounts by parents and caregivers that have been published in recent years.

Your Questions

Thanks so much for the emails, comments, and calls about Wil. We appreciate the prayers and concern so much. I want to take this opportunity to answer a few of your questions regarding AAI/AOI.


1. What exactly is AAI and why was Wil tested for it?

AAI, Atlano-axial instability, is an instability between the first two cervical vertebrae, C1 and C2. All kids with Down syndrome have loose joints as exibited by this photo. Ouch!
This is due in part to low muscle tone and weak ligaments. However, about 10-30% of kids with Ds have increased instability in the atlanto-axial joint. Health care guidelines for kids with Ds recommend an x-ray of the neck at age three to rule out AAI.

2. Is surgery the only option?

A diagnosis of AAI does not always lead to surgery. Many kids with Ds are diagnosed with AAI but because the gap between C1 and C2 is not causing harm to their spinal cord surgery is not indicated. A typical person may have a gap at the AA joint of 2.5 mm. A kid with Ds will normally have a larger gap - if it is too large an MRI is done to see if surgery is necessary. Wil is measuring 7 mm at the AA joint. His neurosurgeon feels this leaves him at risk of spinal injury.

3. What will the surgery involve?

It is a 3-4 hour surgery in which C1 and C2 are fused together with bone taken from a bone bank or from the patient's hip (this is determined by the orthopedic surgeon who is part of the surgical team). Then some type of cord is wrapped around the fused vertebrae. The fusion will have no impact on range of motion once healed.

4. Is a halo the only option during recovery? Why not a neck brace?

We are told the halo is a must for proper healing. A brace does not stabilize the neck enough. The halo does not come off the entire recovery period. We have been told 3 months by the neurosurgeon here but have heard 6 months from another hospital that specializes in spinal fusion. We will obviously want some clarity on this.

5. What is AOI and why does the doctor think Wil has that?

AOI is Atlanto-occipital instability and is the joint between the occipital bone (base of the skull) and C1. Frankly I am not sure why Dr. Smith is preparing us for this. He admitted that the xray did not capture that joint and could not say based on xray. So, he either senses something based on his experience and his observation of Wil (the way he holds his head, his lateness in walking, his balance, his lack of reflexes) or he is just preparing us for the worst so that he doesn't have to come back later with bad news. I don't know.

What I do know is that AOI is far more involved and would add a few more hours to surgery, require metal plates be placed on each side of the spine with rods going down to C3. This would permanently change Wil's range of motion. He would have to rotate from his torso to look around rather than his neck. The recovery is the same - a halo.

6. What will the MRI and CT scan tell the doctors?

The MRI looks at soft tissue and will let them know if the spine is being compressed or pinched or has any damage. They will be able to see where it is in the vertebral column and if it is compromised. The CT scan gives a good picture of bone. It will give them a good structural look at things and reveal whether or not the gap between the occipital bone and C1 is dangerous. Also, kids with Ds can have a malformed C2. If if is not formed properly then surgery is an absolute, the CT will show this.

7. Will you have the surgery there?

Yes. We feel comfortable with the neurosurgeon and the orthopedic surgeon performing the surgery. However, we want many more voices involved in making the decision to go to surgery. We have been encouraged by another doctor to get many opinions, that is what we will do. Our current plan is to get a second opinion from Shriners Children's Hospital in PA (they specialize in spinal fusion), Shriner's in Greenville, SC (they specialize in orthopedics), UF-Shands (we know a general orthopedic surgeon there that we trust), and MUSC in Charleston, SC. When Wil receives his MRI and CT we will request copies, mail them to the appropriate physician at each of these hospitals where they will review them and phone us with their opinion.

8. When will the surgery be?

If the consensus is to move forward with surgery we will discuss the timing with those involved. While we don't want to do anything to endanger Wil by holding off on surgery we also want to make sure that we are not rushing surgery.

Wil is at a developmental stage that will make the recovery very difficult and cause him to regress in his gross motor development. Obviously we would face these challenges if putting off surgery puts him at high risk of permanent spinal injury.

9. What can we do for you?

Pray boldly.


That's what I know now. If there are any medical folks out there reading forgive my layman's explanation - hopefully I got most of it right!

We do have a date for the MRI and CT scan. Thursday, June 12. We will update you once we get some more answers.

Again, many thanks for your prayers and concern for Wil.

Accents

This afternoon I overheard Luke mumbling to himself, something about New York. After a few moments he called me over.

Luke: Mom, do you want to know some New York words?

Me: New York words?

Luke: Yes, they speak a different language. Didn't you know that?

Me: Well. . . (and before I could finish my thought. . .)

Luke: Do you want to hear one of their words?

Me: Sure.

Luke: Instead of saying New York they say New Yak (said in his best Northern accent).


Honestly, I don't know where he gets this stuff!

Challenges Ahead

Today we had Wil's appointment with the neurosurgeon. Here is what we found out.

1. The instability between c1 and c2 (atlanto-axial instability) is "impressive" and will require surgery.

2. There is further concern about atlanto-occipital instability, the space between the base of the skull and c1. X-ray is not clear on this.

3. Wil is being scheduled for a sedated MRI and CT scan which will give more detail on these joints.

4. He will have surgery for AAI (3-4 hour surgery where c1 and c2 will be fused with bone from his own hip or from the bone bank, that decision will be made by the ortho-surgeon). This surgery alone will not limit his range of motion.

5. If he has AOI, which the neurosurgeon seemed to be preparing us for, then that would lengthen the surgery time as they fuse the base of his skull to c1. Rods would also be placed on both sides of his skull to stabilize his neck. This would severely and permanently impact his range of motion. He would essentially have to rotate his torso to look from side to side or up and down.

6. He will be in a neck halo for three months post op. Here is a brief description and a sketch of the halo and vest. (I do not need to tell you how difficult this aspect of this process will be for Wil)

So, our summer plans are being adjusted. We are still a bit stunned that we are really facing this but here we go, off on another journey that will no doubt be as challenging and life changing as so many other experiences we have faced the last few years.

It's going to be hard. I don't want to do it. I don't want to see Wil so limited just as he is starting to take off with his walking. I don't want to be without his tight hugs for three months. I don't want to buy special clothes to accommodate his halo. I don't want to deal with Timothy trying to pull on it. I don't want to feel even more isolated. I don't want to go through the gymnastics that will be required for baths and shampooing. I don't want to see him restricted from the pool and outdoor play - which he loves so much. I just don't want him to go through it. But it is not up to me. And he must go through it. Our family must go through it. And we will get through it. I will take on anything for Wil. And for reasons I do not understand the Lord is having us go through this. I trust Him. He has given me countless reasons to do so..

Our prayer today is that the MRI and CT scan will NOT reveal AOI. That Wil, who loves to roll around with his brothers, climb on play sets, splash in the pool, and his generally all boy, will not be too frustrated or uncomfortable during the three months he is in the halo and that he will remain healthy during that time as well.

We will keep you updated as things get scheduled and we gather more information.

Being a Mom

It is often said that being a mom is a thankless job. There are many, many days that I would agree with that sentiment. Days when Luke argues with everything that rolls off my tongue, Wil knocks a cup of coffee onto our semi-decent, light in color, rug before climbing on the back of the sofa and pulling pictures off the wall while Timothy is in the other room removing the contents of the full trash can piece by piece. And, to be perfectly honest, most days are like that. But sprinkled in between all those moments are moments like this.
Cuddles in bed, tight hugs from Wil, Luke gardening with me, Timothy bringing me his favorite book to read to him, all of them giggling hysterically as they hit me with pillows and run the other way hoping to be chased. And countless other moments. These moments do not make my job as Luke, Wil and Timothy's mom feel thankless. They leave me unspeakably fulfilled and thankful and remind me that the mishaps and challenges in between are all a part of shaping me into the mom they need me to be.

The Public Eye


Before Wil came along we could run our errands, go to the park, do our shopping without anyone glancing our way. At least as far as I could tell. There were the times during the months after Luke was born, when I was wildly fatiqued, that I left the house with my shirt unevenly buttoned (like, really unevenly buttoned!), or with spit-up all over my shoulder and down my back, or wearing two different flip-flops. . . I am sure I must have received some looks. But those would have been intended for me.

Now, when we are in public? We get looks. All the time. I see them, I feel them, I usually ignore them. Sometimes I comment but mostly I ignore. Sometimes, though, we don't get looks only, we get comments too.
A few days ago James and I took the boys to Five Guys. First, if you haven't been there you must find one and go. In my book they have the best burgers around, hands down! It will be worth every penny you spend on gas to get there. Because when you bite into their burger a peace and calm like no other will come over you, I promise. It happens to me every time. And then, one of my kids scream and the peace is over. Anyway, we like Five Guys. One of the reasons we like them is because they (at least the franchise we frequent) are regular supporters of the Special Olympics and have some great pics of kids with Down syndrome on their wall. And the burgers. Love the burgers. The fries aren't bad either. Anyway, on our last visit a woman was eating with her teenage daughter at a table near us. I was watching her watch us. Well, watch Wil. She kept looking at him, talking to her daughter, looking at him some more, talking some more. I sensed that she was looking at him admirably but I couldn't be sure until she leaned over and said, "Can I take that one home with me?" I smiled and said no way but offered her Timothy. I'm kidding, I'm kidding! Timothy was just being particularly vocal about wanting to get down and cruise the restaurant so I was ready for someone to take him so I could concentrate on my burger. I decided I couldn't live without Timothy either so Luke took him outside for a walk. This woman went on to tell me how she works with kids with special needs, how much she adores her kids with Down syndrome, how precious Wil is and how fortunate we are.
We have had other encounters like this. In my experience it is often the case that the people who inquire about Wil or make positive comments, like the Five Guys lady, are people who know first hand the joys of having kids with Down syndrome in their lives and they just cannot resist an encounter with Wil. He rarely disappoints and gives them a smile, giggle and wave.
Then there are the people who watch Wil, watch me, and are perplexed. I can see it in their face. They either can't make out his diagnosis or they are surprised by how "normal" we seem or something. I don't really know what they are thinking most of the time. But sometimes I get a sampling. Earlier in the spring I took all three boys to our neighborhood park. I don't do this alone very often because, well, it's crazy. Luke is fine. Wil and Timothy, on the other hand, are at the age where they want to climb, climb, climb and have absolutely no fear. They also seem magnetically drawn to the street and can get there in a matter of seconds. And of course they go in opposite directions. But I took them. It was one of our first pretty spring days, we had on shorts, the park seemed the thing to do. There was another mom there with her son, probably Timothy's age. He was wanting to climb all over everything and mom was super cautious with him. There was another woman there - I wasn't sure why she was there or who she was with. And then there was a dad with his baby, they were swinging. As I expected Wil and Timothy were all over the place. I would yank them by one arm to pull them onto or off of the play set as I reached for the other. They were going head first down the slide and tumbling to the ground. I let them. Wil, who is not walking much, was doing his bear walk everywhere. And he is fast. I noticed the other adults watching. I figured they were alarmed by how rough I was with the little guys and remembered how careful I once was with Luke. And then the woman who was seemingly alone asked me Wil's age. He is three I tell her and keep playing with the boys. "And he doesn't walk?" she said with an edge of irritation in her voice. I tell her he is learning and explain the delay. She chuckles and tells me that the way he is getting around looks odd and then turns to talk with the other mom who was standing next to her. We stayed another five minutes and then packed up and left.
The difference between these two women is striking. Most of my experience, however, is somewhere in the middle - quiet looks and occasional smiles. But when I was walking the boys home from the park that day I had a knot in my gut. It was there because I know that as Wil ages we will likely be receiving more comments of that nature. It was there because I know that soon Wil is going to pick up on it. It was there because I know that Luke will soon begin to hear such comments from friends as he moves through school. It was there because none of those parents were interested in engaging with us in the way they were engaging with each other simply because they didn't understand Wil.
I have said it before. I feel sorry for people like the one at the park. One, they have no idea how hurtful their words are but more than that they are missing out on something that the lady at Five Guys gets; the unspeakable joy and the invaluable lessons that come from being in relationship with someone that has Down syndrome. Wil is not going to impact everyone that crosses his path but I know from what we have already experienced he will impact many. What a privilege it is to be his mom.

Getting Fancy

We have been going at this church planting thing for over one year now. It has been good and hard. We are figuring out our place in downtown Columbia as we juggle family, new relationships, and ministry opportunities in the city. Yesterday was the first Sunday in our new location. It was good to be there and the location feels like a good fit for us. I left my camera at home so you will have to wait until next week for a looksy. In the meantime please peruse our new website. We are really pleased with it. The music is Hannah Miller, a local folk rock musician who attends our church. She has a great sound, check her out!

about me

My photo
SC, United States

Search This Blog

green seed creations

snapshots

www.flickr.com
This is a Flickr badge showing public photos and videos from stawal. Make your own badge here.