Horse fail

One of the suggested helps for those with special needs is hippotherapy -- working with a therapist and using horses for therapy. It's something I've thought about for Buddy since he's been on a few smaller horses in the past and seemed to enjoy it.

I have the video to prove it.

Exhibit A. Riding a pony at a dairy farm we visited while in Florida over Christmas. No worries, right?

So I was understandably eager to find a nearby place that provides hippotherapy to get him started (he's still showing evidence of low muscle tone and lack of coordination in his movements--things which hippotherapy is supposed to address). I checked around and found a place not five minutes away (and believe me, there's not much that's just five minutes away from us).

A few Fridays ago, I took the boys to meet with the owner. Buddy was looking forward to "seeing some horses," but when we got there, we didn't get the chance to actually get close to the horses since it was a bit rainy. So, we made plans to go back on Monday and start. I talked about it with him over the weekend, explaining that we'd go see the horses and maybe ride one of them, trying to get him ready for what we'd be doing.

But when Monday rolled around and we rolled into the parking lot at the stables, something snapped in his brain and he decided horses weren't for him. He started crying (and I mean crying) when we got there and just wouldn't stop. He wasn't interested at all in seeing the horses or getting near them.

I really don't know what happened -- too much talking ahead of time? Anxiety is common among those with WS, so I'm wondering if somehow I made things worse by talking about it with him? I don't know. But it seems, for now, that hippotherapy will not be on the agenda for the summer.

So we'll move on to something else -- music therapy, I guess . . . .

Bike riding

While my parents were here recently, they were able to get Buddy to ride his bike on the smooth floor of our pole barn (he's been riding his trike for several months but hasn't been able to get the pedals going on the bike). But he's resisted riding it on the rougher surface of our lane.

This afternoon, he finally let me take the bike out of the barn and put it on the lane so he could ride it. Because of the loose gravel and stones, it's a bit more difficult for him, but he did a great job and really liked it. (We're working up to wearing a helmet.)

Bubble wrap as OT

Buddy's preschool teacher mentioned a few days ago that she thought the bubble wrap the kids had been doing during sensory time was helping to strengthen Buddy's fingers. That's one of the reasons I'm glad we have him in preschool--the teacher has been great about working with him in so many areas and with so many tools that I wouldn't think of on my own.

When she mentioned the bubble wrap, I immediately began trying to remember if we had bubble wrap anywhere at home that he could play with. We didn't.

Today, the mail lady brought us a package with the contents wrapped in "bubble pops" (as Buddy calls it). And he knew just what to do with it.

Is there any irony to the fact that the bubble wrap enclosed a book I'd ordered a few days ago about disabilities?

You never know what you're gonna get

This morning we went for another visit with the OT we visited last week.

The thing about therapists is that you never know what kind you'll get. Some, like the OT we had in First Steps, are great. Very proactive in working with the child, very insistent on the child doing what needs to be done, and very good about suggesting ways for us to work with him. Others, like the DT we had in First Steps, are less insistent about getting the child to work and not as good about getting the family involved.

I was concerned that our new OT would be like the latter. So I was pleasantly surprised with Cindy this morning. She was really interested in finding out how he was doing and in working with him and getting him to stay on task. And I've learned that therapy is as much about getting the child help as it is about our learning what we need to be doing to help him -- a philosophy with which she agreed. She was very adamant that therapy is much more effective when the parent is involved the rest of the week.

So, we're off to another good OT start.

EEG Day

Last month, we went to our pediatrician to get a referral to the neurology clinic at the children's hospital for an EEG because I suspect Kieran may be having absence seizures. (Wow, that sentence has a lot of prepositions.)

Today was that EEG. I've been talking to Kieran about what would happen, hoping to prepare him so that he wouldn't freak out when the technicians started putting the electrodes on his head.

"We're going to the doctor in a few days and they'll put some things in your hair. But it won't hurt. It will be fun! And you'll get to watch videos with daddy! It will be fun!"

He seemed to believe me. When we got to the hospital, he told everyone who would listen, "It doesn't hurt."

And then, when we got to the neurology area, he told the lady, "It doesn't hurt." And she said, "You're right! It doesn't hurt! We'll just put little stickers on your head." Which I thought was a great way to put it, so I started telling him, "Ooh stickers! It will be fun to have stickers on your head! Stickers don't hurt! Yay for stickers on your head!"

And then we got to the EEG room. And the lady explained what they would do. And then, as soon as they laid him on the table so they could start stickering him up, he began cry uncontrollably. Before they started touching him.

And he continued to cry throughout the stickering process. But once Seth was able to hold him and he was able to watch Elmo's Potty Time on the TV, he calmed down for the most part, with a few occasional bursts of crying just to remind us that he didn't like having to do this.

 

And we all made it through the dreaded EEG.

 

We kept him up two hours past his bedtime last night and got him up earlier this morning so that he would be tired for the EEG (I don't think it worked), so he was pretty tuckered out on the way home.

 

We'll find out the results in a few weeks.

Q-week at school

This week's letter at school was Q. What would you send with your child to show-and-tell for Q week?

It was actually a no-brainer for us. As a ramification of Williams syndrome, Buddy gets to deal with excessive ear wax (or rather, Husband, who in charge of grooming the boys, gets to deal with the ear wax). I know -- just what you wanted to read about. Ear wax. There, I said it again.

So he's well aquainted with Q-tips, which happen to begin with q. Thusly, his show-and-tell item for this week was a Q-tip.

Absence seizures

At a doctor visit, I asked the doctor about something I've noticed lately with Buddy. Every so often, sometimes several times during a day, he'll space out for a few seconds--he stares blankly and I can't get his attention. And then, after the few seconds pass, he's back to normal, as if nothing happened. So, I asked the doctor if he thought Buddy may be having absence seizures. And the doctor said the only way to tell was to have an EEG done, so he referred us to the neurology clinic at our local children's hospital.

(Funny story: While at the doctor's office, a tall, slightly rotund man with frizzy red hair and facial hair was checking in behind us. Buddy pointed to the guy and said, "Mr. Noodle!" Since my back was to the guy, I said, "What? No . . . [turning around and seeing the guy], ohhhhhhh, Mr. Noodle. Shhhhh!" And then I laughed to myself, with my back to the guy. He really did look kind of like Mr. Noodle.)

Breakthroughs

We started working with Kieran on potty training in May or June of 2011. I can't count the number of times I've said, as I'm carrying him to the bathroom while he's in the middle of going or has already gone in his diaper, "You need to tell mommy when you have to go to the potty. You need to say, '[in my best singsong voice] Mooommmy, I have to go poooootttttyyyy.'" But he just won't tell me.

My most recent incentive for him is letting him blow out a candle, something he really likes and something that also serves as speech therapy, when he goes. And, finally, the past few days, he's said (albeit quietly and in an oh-by-the-way kind of way), "I have to go potty." And I've taken him and he's gone. I'm hoping this is the breakthrough we've been waiting for on this front.

Another breakthrough that thrilled my heart today happened on his tricycle. His aunt and uncle gave him a tricycle last year for Christmas, and he's been pushing himself around on it since then. We've continually tried to get him to push the pedals with his feet to no avail.

This past Christmas, we got him a bike with training wheels, thinking maybe he would be more interested in riding on that but we weren't successful. I think part of it may be that the muscle tone in his legs is low enough that he can't move his legs as he's supposed to in pedaling. I wish now that I had kept the PT he had a year ago instead of letting her go when she thought he didn't need her.

At any rate, we've let him use the tricycle both outside and inside, so that he can keep practicing. Today was an inside day since it was a bit on the chilly side, and I was once again pushing him around the kitchen, trying to get him to pedal. And, for a few brief moments, he pedaled on his own.


And there was great rejoicing.

Snacking preference

I don't usually buy snack cakey-type snacks for Buddy. Not because I necessarily have anything against artificial and processed forms of food, but primarily because I, lacking any type of self-control, would end up eating the entire box of snack cakes myself. Most likely in one sitting.

And also because he's such a light eater and because he can't have a regular multi-vitamin due to the extra doses of vitamin D and calcium they have (those with Williams syndrome can have problems with too much calcium in their bodies), I try to make sure that every calorie counts toward his overall health and well-being. (I did find this multi-vitamin that doesn't have vitamin D in it to give him.)

So, all that to say, Buddy doesn't get these types of snacks too often.

Apparently, however, he has somehow developed a taste for Christmas snack cakes. They were the snack du jour at preschool the other day, and he liked them so much that his teachers a.) wrote about it in his daily journal, and b.) sent him out to meet me at the end of the day with an empty box and a "Tell your mom how much you like these!" (Buddy dutifully said, "Like this!")

So, in the spirit of overindulging at Christmas, I saw the Christmas snack cakes while I was at the store today and threw a box in my basket for him (and maybe, perhaps, quite possibly also for me). After I got home and showed him what I'd bought, he downed two cakes with a glass of milk. Thanks, Little Debbie, who did not in any way provide compensation for this post, for all that trans-fat-laden high-fructose-corn-syrupy goodness!

Setting Goals

Buddy turns three soon, which means he'll be leaving the First Steps program and transitioning into our area's preschool special education program.

On Thursday, we went to the first (of many) IEP (individualized education program) meetings. It went well, in my opinion--although I don't really have any other meetings under my belt by which to judge it. And since this was the first, I considered it more about me learning the ropes of these meetings. (As an interesting aside, when the service coordinator requested Buddy's medical records from the children's hospital, she received them on a CD because there were over 500 pages of records.)

The results of their testing a few weeks ago were in agreement with the results we got from Dr. Mervis's team in Louisville--he's average/low-average in most areas. We really are thrilled that he's doing so well.

I was in agreement with most of the goals for fine motor and language that they had written for him, and the one I disagreed with, they willingly changed. (They wanted him to learn his colors, which he already knows.) I also wanted them to add a few goals for gross motor skills, which they did.

The reason for writing these goals is so that his preschool teacher will know what to work on with him and so that we can work on those same things at home. When I talked with the teacher last week about enrolling him there, she and her aide both seemed to have a good background in special education and speech therapy, and she was planning on learning more about Williams syndrome so that she could be prepared.

I'm looking forward to getting him started and seeing how he does in the classroom (it's a small group with six other typically developing kids).

Doctor visits

Sometimes, in moments of human frailty, I find myself thinking, Maybe if the pediatrician hadn't noticed Buddy's heart murmur oh-so-long-ago, we wouldn't be on the path we're on now. Maybe we wouldn't have needed all the doctor visits and therapies. . . . Maybe we wouldn't be the parents of a child with special needs. As if, somehow, not finding his heart defect would have sent us down another path and would mean that he didn't have Williams syndrome and wouldn't have needed the visits to the various specialists.

But just as quickly as that thought flits through my head, I realize its irrationality and remember that it was a good thing he was diagnosed early so we can monitor his physical problems and proactively help him with therapies and interventions. And I also remember that God has given us the grace we need as we need it. And I'm thankful for where we are in life and for Buddy and Cubby.
While Cubby and I were still in the hospital, he had the newborn hearing test required by law. He failed the test in his left ear. The nurse was pretty sure he didn't pass because he screamed through entire test but we were required to schedule a follow-up appointment with an audiologist. I made the appointment . . . and then cancelled it a few days later.

At his one-week appointment, Cubby's weight was a little lower than the doctor thought it should be so he wanted us to return a few days later for a weight check. It was again low and he wanted us to return again for another check a few days after that. I never went back. (And, according to the scale we're using at home, he's gaining weight just fine.)

Somehow, I've transfered the anxiety and stress I felt when we were dealing with Buddy's issues as an infant to Cubby, and I just keep thinking, I don't want to go there again. However irrational, my thought is that if I don't start making doctor appointments for him, then maybe I won't need to keep making them and we won't end up in the same place as we are with Buddy. Am I crazy?

At any rate, my hope now is that I'm not breaking the law by not having Cubby's hearing evaluated and that the Department of Health people won't come knocking on my door and that I won't be thrown in jail when they discover I cancelled the audiology appointment. If this is the last blog post I do for awhile, you'll know where I am . . .

Normalcy

Cubby's first four weeks have gone by fast. And, to be honest, they've been a much better first-four-weeks than the first four weeks I had with Buddy.

We didn't know Buddy had Williams syndrome until he was diagnosed at 9 months. But during those 9 months, there was a nagging thought in the back of my mind, "Surely this can't be normal." His feeding difficulties, his SVAS, his sleeping difficulties, his weight-gain problems, his kidney problems, the way he didn't seem to be "getting it," the constant crying, the colic that lasted way beyond when it was supposed to end . . . .

Taken one-by-one, a mother might think, "Ah well, that's just the way he is." But when it's one thing on top of another, it's difficult not to think, "What is wrong with my child?"

I once asked Huband if he thought I was out of it during the first weeks of Kieran's life. "Weeks?" said he. "Try months." I suppose he's right. Lack of sleep does tend to mess with one's mind and personality. Kieran didn't sleep longer than 2-3 hours at a time until he was about six months. He didn't sleep through the night until he was 15 months. And he still doesn't sleep longer than 8-10 hours at night (but I'm not complaining on that point--I'm just glad he's sleeping!).

Until we got Buddy's diagnosis and I realized that what we were experiencing really wasn't normal, I had a difficult time understanding how anyone would want--or could handle--more than one child.

My prayer during the pregnancy with Cubby was, "Please, Lord, just let him sleep." I can handle life much better when I'm not sleep deprived. The Lord graciously heard my prayer and gave us Cubby. From the beginning, Cubby has given me more than just an hour of sleep at a time. And last night, he slept for five hours at one time.

Cubby is also eating well and gaining weight. And I don't have that "surely this isn't normal" thought continually running through my head.

I hope, for the sake of mothers everywhere, that this is more on the normal end of the spectrum. And I hope, for my sake, that the lengthening of nighttime sleep continues.

Kidney follow-up

Because of the looming snowstorm, we spent last night at SIL's place. They live about 8 miles (compared to our 40+ miles) from the children's hospital and Buddy had an early morning appointment there. This one was a follow-up with the urologist to check on his kidneys. By the sounds of his crying during the ultrasound, you would have thought the tech was dissecting his kidneys rather than simply taking pictures of them. Buddy kept signing "all done" throughout the 15-minute ordeal and I had to keep telling him, "No, not yet."
After it was over and the doctor had looked at the results, he happily told us that his kidneys looked fine, looked like they were growing well, and that he didn't need to see us again for a year. And there was great rejoicing.

SVAS

One of the distinguishing characteristics of Williams syndrome is SVAS -- supravalvular aortic stenosis. If you can decipher the medical terminology, you'll learn that SVAS consists of a narrowing of the aorta just above the valve that lets blood leave the heart.

Because they are missing the gene that codes for the protein elastin, which gives skin and blood vessels elasticity, most people with WS have SVAS to some degree. It can range from mild, requiring no intervention, to severe, requiring open-heart surgery to remove the narrowed portion of the aorta. And it can worsen or get better over time, which means constant monitoring by a cardiologist -- every three months, every six months, every year, depending on the situation.

SVAS is so connected to WS that it's often used to diagnose WS. When Buddy was first diagnosed with a heart murmur at two months by his pediatrician, we were sent to children's hospital for an echocardiogram. The result was that he had SVAS and the cardiologist mentioned that it may indicate he had WS. I asked if that might explain his failure-to-thrive and sleep problems, and the cardiologist replied, "It might." Because he seemed so nonchalant about it (although looking back, I can see that there was concern on his face about how we might take the news), I didn't give WS another thought . . . until Buddy was actually diagnosed with it several months later.

Although it's not the only medical condition common to those with Williams syndrome, it can be one of the more life-threatening. Buddy's has stayed in the "mild" range and, after his most recent echocardiogram, he was cleared to return in a year. Although I know that God is sovereign and gives His grace freely whenever we need it, I feel a certain apprehension in the weeks and days leading up to the visit with the cardiologist. Will the SVAS have progressed from mild to moderate to severe? Will he need surgery? And there's a sigh of relief that I breathe after each visit when he's given the "all clear until next time."

Through connecting to other families of those with WS on Facebook, I've found the same feelings are shared by other parents. When a positive results are returned on an echocardiogram, everyone feels the weight lifted and rejoices. And when a non-desirable outcome is given, everyone feels that kick in the gut and commiserates. Just today, one mom reported that her daughter -- close in age to Buddy-- had an echo that showed her SVAS had progressed to a near-moderate level. Surgery could be in their near future. And another boy -- 19 years old -- had open-heart surgery to correct his SVAS.

While we're praying for both of these friends, I'm reminded that being a parent of a child with special needs isn't something that we signed up for but that God is sovereign and always good. There are no guarantees of good health in this sin-cursed world, but He gives His grace daily, as we need it, and brings glory to Himself through the situations He brings our way.

Kidneys

Did you know that your kidneys can reflux? And that there's a scale measuring the reflux? And that having kidney reflux in the 4 or 5 range usually requires surgery? And that kidney reflux is detected by inserting a catheter in you-know-where, filling the bladder with liquid, and watching the kidneys do their thing on an X-ray?

Well, they do; there is; it does; and it is. And we found out all about it today.

You may (or may not) remember that early last year, Buddy had 2 UTIs (urinary tract infections). Standard operating procedure after a UTI is to send the child to our nearby children's hospital to have the kidneys checked out. And so there we went. His kidneys were poked and prodded and it was determined that, on the kidney reflux scale, his kidney reflux was a 3.

Today, we had a follow-up kidney ultrasound and cistogram (the thing with the cath) to find out if the reflux had progressed or abated. Two screaming fits (one during the ultrasound, one during the cistogram, oh, and one during the taking of the blood pressure . . . so make that three screaming fits) and four hours later, we were informed that his kidneys look good and his reflux appears to be in the same range as before, meaning no surgery is required at this point. We'll return for yet another visit to the urologist and his ilk in six months to again assess Buddy's kidneys. Who knew kidneys could be so exciting? And so, um, draining?