Friday, December 14, 2012

It's That Time Again

It's coming up fast and I'm dreading it. 

No, not Christmas...surgery. Ian is having surgery next week Wednesday, and like most parents would, I'm dreading, worrying, and losing sleep over it. It's not a major surgery - he shouldn't even need to stay overnight - but it's surgery, nonetheless. It's a minor urological procedure; not urgent, but necessary. 

We've been lucky that until now, Ian hasn't needed surgery in two years. The last time we went through this, he was only two and a half. Now he is four and a half, and a lot more capable of understanding what will happen, and also being scared of it. He recognizes when we go to the hospital, and he knows we're there for him. There's more anxiety and worry on my mind this time around, knowing he'll be scared.

We're planning to talk with him about it the day before the surgery. We'll tell him that we're taking him to the hospital the next day, but that he'll go to sleep and not feel anything. After he wakes up we can go home, hunker down, and watch movies. We'll also be giving him one of his Christmas presents when he wakes up (Santa saw how brave he was and decided to drop one off early), so that will hopefully make the aftermath a little more tolerable. He'll also be getting some visitors in the days afterward, which will make him very happy as well. Hopefully everything will go smoothly and be over quickly.

This will be Ian's fifth surgery since his birth, and they never get any easier. He most likely has a lot more ahead of him, so this is really just a drop in the bucket when you think about it (but I don't really like thinking about it). I know they're never going to get any easier as he gets older, because he will always be my baby and I will never want to see him go through something scary or painful. Sometimes I feel so defeated, like I've sentenced him to this life of surgeries and pain. I try to make it up to him by making all his non-surgery days as awesome as possible. It's my most fervent wish as his mother that he will someday tell me that all the pain and hassle of living with Spina Bifida is worth it, because he has a great life.

So yes, I'm dreading next Wednesday, even though it's not a big deal in the grand scheme of things. I guess it's my job as Ian's mother to dread it. If you happen to have any extra mojo (or whatever) you're not using, I'd appreciate it if you'd send it Ian's way. :)

Ian re-cooperating after his last surgery, 12/14/10 


***Update 12/21/12***

I'm extremely happy to report that Ian's surgery went very well on Wednesday! It was quick, he woke up from anesthesia with out problems, and he recovered very quickly. 

Awake, drinking, and watching "Cars" about an hour after surgery.
After we got home, Ian spent the rest of the day relaxing, watching movies, and playing his new Nintendo DS that Santa brought while he was in surgery. He ate some dinner that night and slept VERY well.

The doctor recommended that Ian stay home from school the rest of the week, which meant that he missed the holiday parties going on at school on Friday. Some of his wonderful teachers came over to the house to visit him and tell him "hello" from all his friends at school. He was so happy and amazed to see them walk in the front door of our house!

Ian getting a visit from his awesome teachers!

The fun didn't end there - after school Ian's best friend, Noah, and his family came over to visit and eat dinner. Noah was happy to catch Ian up on the activities of their 4K class, and they had a great time playing Wii together.

Ian and Noah playing Mario Kart on the Wii.

I'm so relieved that this surgery is over - it feels like we can finally enjoy the holidays now. It seems like all the worry and dread I put into this situation was paid back tenfold by the kindness and concern that others have shown for Ian. 

Knock on wood, Ian won't be having another surgery for a few years. Until then, we'll take it one day at a time.



Wednesday, November 28, 2012

The Underwear Plunge

***This post contains poop-talk. You've been warned.***


Here they are: underwear. Ten pairs of briefs with assorted patterns and Nick Jr. characters (I had to buy the whole pack of seven just for the two SpongeBob pairs). After over three months of adjusting the Miralax and enema schedule it seems like we've finally - knock on wood - found the combination that has resulted in Ian being almost completely dry all day and all night. He's been wearing pull-ups instead of diapers for the past 8 weeks, and now we're thinking that it may be time to take the plunge and try underwear.

The biggest obstacle to Ian's continence is that his body has no control over it. We can't make him a sticker chart or have a reward system for when he doesn't have an accident - he has no ability to prevent it. Spina Bifida often causes damage to the nerves that control the bowel and bladder. Some people with Spina Bifida - including Ian - cannot feel that they have to go to the bathroom, nor can they control when or if they go. Because of this, Justin and I have to be in control of his continence. We have to figure out, and then keep Ian on, the best schedule to avoid accidents and stay dry. He takes medicine three times a day to prevent his bladder from voiding his urine. Justin, I, and his teachers at school are in charge of catheterizing his bladder to empty it four times a day. It's on us to keep him dry. Someday - hopefully in the not-too-distant future - Ian will take over this schedule, but currently he doesn't have the fine motor ability to be able to cath himself.

With the medication, we've been able to keep Ian dry of urine for over a year now. It was poop that was standing between him and big-boy underpants. The bowel can't be regulated the same way as the bladder - there is no medication to keep a person from going #2. In the past, we gave Ian Miralax daily to keep him going. He'd go in his diaper and we'd change him. Now, the trick is to use the Miralax to keep him going, but not giving him so much that he will go all the time - only when he is getting an enema. It is a delicate balance that can result in either continence or a huge mess. First, we tried Miralax daily and enemas daily. Then we tried Miralax daily and enemas every other day. When that didn't completely work, we switched to Miralax every other day and enemas daily. What finally ended up working (or seems to be after three weeks) is enemas every other day, with Miralax on the same day as the enema. Not only is he no longer having messy blow-outs, he has a completely clean pull-up about 95% of the time - a very positive thing for a school-age child.

I don't know that it can get much better than that, so the next step is underwear. While I'm excited about the cost savings that come with not having to buy diapers or pull-ups (for Ian anyway - his sister is still a long way from diaper-free), the stakes are much higher with underwear. Underwear won't contain an accident the way a pull-up will. 

It's a plunge every parent has to take though. Looks like it's finally our time.

Friday, November 16, 2012

Ian: The Movie

Recently, the song "I Wanna Be The One" by fun. inspired me to make this slideshow about Ian - birth to present day (the last picture was taken just last week at his physical therapy session). Whether you know him or not, this is a little look into his life so far.

Click the "play" button on the bottom to start the slideshow, but also be sure to click the audio icon at the top right corner of the screen to turn on the song - it is very important to the show.


Friday, October 19, 2012

Finding Ian

Recently, Finding Nemo has become one of Ian's favorite movies, so I have seen it many, many times. As Ian grows up and starts having more and more new experiences, I realized that I am starting to feel a lot like Nemo's dad.

Though Nemo has grown old enough to go to school, when Marlin looks at him, he sees this:
© 2003 Walt Disney Pictures/Pixar Animation Studios.

Though Ian has grown to this:

When I look at him, I see this:

Six hours after giving birth to him, I was able to be wheeled down to the NICU to see my baby. Like virtually all babies in the NICU, he was on oxygen, IV fluids, and hooked up to a bunch of monitors. The hole in his spine was bandaged and wrapped in plastic to help keep his spinal fluid from leaking out until the repair surgery the next day. I sat beside him and stroked his head while he slept. He couldn't be held or fed until after his surgery and after the neurosurgeon gave the OK. I felt like we were both completely helpless.

I was happy and sad at the same time. Happy that I finally had my baby, and that he had made it this far. Sad that everything wasn't 100% fine and there were going to be a lot of hard things to deal with in the future. Like Nemo's dad, all I wanted to do was hold him and promise I'd never let anything bad happen to him.

The hard things never go away - and neither does the sadness - but luckily it is tempered by so many wonderful, special, every-day moments with Ian that bring me so much happiness and joy. Those are the moments that keep me going, even through the hard stuff.

Today, Ian went on his first field trip with his 4K class to a pumpkin patch. He got to ride on a bus with a wheelchair lift, which he was very excited about. I dropped him off at the school and watched him wheel down towards the bus with his teacher, so grown up and independent. 

Nevertheless, I still saw this (and probably always will):
Ian in the hospital after his first shunt revision surgery at 3 months old.





Saturday, October 13, 2012

Birthday Bash

Today, Ian went to his first birthday party, for a boy in his 4K class. It was supposed to be at a pumpkin patch, but because of inclement weather it was moved inside. I personally was excited not to have to try and push Ian's wheelchair around a field of pumpkins, rain or no. An indoor setting would offer him more in the way of freedom - he'd be able to push himself around and go where he pleased. I had grand visions of him rolling after the other boys, keeping up with them and playing their games. Even though I knew this was too much to ask - both of 4 year old boys, and of Ian - I couldn't help but imagine it anyway.

This is what really happened: the boys ran around playing while Ian sat by me, insisted on touching my face, and said "Hi Mommy" over, and over, and over. The birthday boy is a great kid - he spent time talking with Ian and trying to make him laugh and feel included. Ian didn't seem to want any part of that - he just wanted to sit by me and watch them play. I think he really did want to talk to them, but wasn't able to say what he wanted to, so instead just said "Hi Mommy" again and again to compensate. When it was time to eat cookies and ice cream, the kids gathered at the kitchen table. Ian fled. He wheeled down the hallway to the front door and sat in front of it, jiggling the handle. Cookies and ice cream were out of the question - Ian has issues with a lot of foods, and doesn't like seeing others eat - so he removed himself from the situation. I asked him if he wanted to go home, and he said he didn't, but he also didn't want to be in the same room as ten kids who where shoveling ice cream and cookies into their mouths. He wouldn't even look at me while I sat with him by the door and ate his adorable pirate cookie for him.

The part of the party that Ian enjoyed the most was decorating a pumpkin. He chose a black marker to color his pumpkin, and would occasionally use his other hand to smear his lines, for effect. He wouldn't entertain the idea of using any other color except black, but he colored the pumpkin a long time, and it looked very Halloween-y when he was done. It's now sitting proudly on our front stoop. 

Even though Ian couldn't keep up with the other boys at the party (and didn't really show any interest in doing so either), I'm still so happy that he was invited and had to chance to experience a peer birthday celebration. I'm glad there's a kid in Ian's class that he can call a friend, and who accepts him for who he is, challenges and all. Nothing bad happened - Ian didn't scream or cry or throw up - so if another kid happens to invite Ian to their birthday party in the future, I'll have many less qualms about letting him go. 

Thursday, September 27, 2012

Happy Tears

I cried this week. I cried twice, and both times it was out of happiness. A normal week was transformed into a week of extraordinary joy as a parent with a special-needs child, and all it took was a letter and a conversation.

I knew that the decision for the appeal of Ian's toilet seat was due to come at the end of September, so I had been especially vigilant about getting the mail recently. When I saw it in with the mail the other day, I caught my breath and tore it open immediately. I flipped to the end of the document, where the decision is stated (this isn't my first Medicaid appeal!) and skimmed for the statement of whether I'd won or lost. I read the sentence, " The agency did not properly deny the Petitioner's PA request" and a huge smile spread across my face. It wasn't until I flipped back to the first page and read the whole decision that the crying started. After paraphrasing the "state expert's" statements denying Ian the toilet seat, the judge then paraphrased my testimony, and in that paraphrasing I could see that she really got my point when I was explaining to her why this toilet seat absolutely is medically necessary. Here are a few of my favorite excerpts from the judge's paraphrase of my testimony:

"There is no evidence that his cognitive skills will prevent him from independently toileting."

"The Petitioner's mother strongly disagrees with the Department's assessment that the Petitioner should be using his bed for his bowel program. She testified that it is an issue of dignity for the Petitioner, that he is almost 5 years old and it is degrading and offensive to be changed in the bed where he sleeps. She feels this is not an option for a 5 year old that is cognitively intact."

And here's my absolute favorite part:

"The evidence is clear that the Petitioner requires the use of a toilet chair with back and side supports in order to participate in a bladder and bowel toileting program at home. The Petitioner is cognitively ready and able to participate in a bladder and bowel program. While the Petitioner continues to need some physical assistance to transfer to the toilet chair and needs to learn the catheterization and enema process for a bladder and bowel program it is difficult to understand how he can learn these skills without using and practicing with the chair." (YES!)

And finally:

"Based on the evidence, the Petitioner has demonstrated that the requested toilet chair is necessary to treat the Petitioner's disability, it is cost-effective and it is the most appropriate equipment for the Petitioner."

BOOM! A wave of happiness washed over me, followed by a wave of relief. Finally, someone saw it my way, and made it possible for me to make the best decision for my son. The "state expert", who had denied Ian the seat and instead suggested that we do his toileting in his bed, had been overturned, her decision deemed the incorrect one. Finally. It was one of the most rewarding feelings I've ever felt. That is why I cried happy tears.

Then, while still on the happiness high from the appeal decision, I received more great news from Ian's teachers at school: Ian is doing great in 4K, and is even making friends! His teacher told me that he can identify all the letters - upper and lowercase - numbers, colors, and can write his name without help. I, of course, already knew all these things, but now she knew them too - she knew he was as smart as the other kids in his class, despite his communication difficulties. Can he sing the ABC song? No. But does he know all the letters? YES! That his teachers worked around his challenges to find out what he really did know sent my heart soaring!

And if all that wasn't enough, both of Ian's main teachers also gave me positive reports of his interactions with the other children in his 4K class. One of my biggest fears about Ian starting mainstream 4K was how he would be received by the other kids in his class. Would he just be "that kid in a wheelchair", or would he be completely accepted by the other children? Would kids flock to him just for the novelty of his wheelchair, or would they truly be interested in his friendship? Would they ask him mean questions, or tease him for not being able to do everything they can? I've worried about it all summer, especially after an incident at a playground where another boy about Ian's age got about an inch from his face and said, "What's wrong with you?", and then ran away before Ian could say or do anything. I envisioned the 21 other students in Ian's 4K class doing the same thing to him, and it was a very unsettling feeling. My fears were eased by Ian's teachers, who told me his classmates are completely accepting of and helpful to him. They sit with him in the classroom, include him in playtime, and help him when he can't reach something. Another huge wave of relief washed over me - it was almost too much relief for one week!

All of these burdens being removed from my mind and my heart were enough to warrant a cathartic, happy cry. Being the mother of a special-needs child can often lead to a good amount of sad, hurt, and frustrated crying, but it's those sweet, relief-filled, happy cries for your child who has cleared the hurtle, made progress, or defied odds that make it all worth it in the end. 

Saturday, September 8, 2012

GOOOOOOAAAAALLLLL!!!

Ready to play!

This morning, Ian played soccer for the first time. He played with other kids - even an actual scrimmage! He scored goals! It was a proud moment for him, and for Justin and me as well.

Ian's teachers told me about the TOPSoccer program when he was in school last year, and once he turned four over the summer he was old enough to play this fall. TOPSoccer brings the fun of soccer to children with disabilities. Besides teaching the game, the program also teaches kids teamwork, self-confidence, and the importance of physical activitiy. Luckily for us, the closest program is only a 15 minute drive from our house, in a local school's gymnasium. The kids have all different abilities - some are in wheelchairs and some are not. Each player is paired up with a volunteer buddy, and the fun begins! The wheelchair kids were allowed to use their hands, and Ian couldn't get enough of throwing the ball into the goal net. After he would make a goal, he would pump his fist in the air and yell, "Yeah!" loud enough for the whole gym to hear!


Ian with his buddy, Willy
I hope getting to participate in the TOPSoccer program will start Ian down the road to enjoying many different sports, and realizing that he can do many physical activities even though he is in a wheelchair. Staying active is just as important for Ian as it is for someone who isn't in a wheelchair - maybe even more important. Only one more year until he is old enough to join the local wheelchair basketball team!

Thursday, August 16, 2012

Horrible/Wonderful

***WARNING***
Though I'm not going to go into very specific detail - both for your sake and for Ian's - this post does contain toilet training details. If that's not your cup of tea (though who's cup of tea would it be?), you may skip this post, with my blessing.

After five months of answering endless questions, arguing, battling, and waiting, Ian's Rifton toilet seat was finally delivered. Last night, we started down the long, slow road toward continence. Instead of cathing Ian's bladder while he was lying down on the changing pad, we cathed him into the toilet while he sat on his new potty seat - a very big and exciting step for Ian, Justin, and me. Finally, Ian is getting to experience going to the bathroom like a typical four year-old...well, kinda.

Our already too-small bathroom, made even smaller by the addition of the potty seat.

Taking this step was something I'd been asking his urologist about since he was two, and which I finally demanded we take shortly before he turned four. With the help of medication, we've gotten to the point where he is dry between cathings, so it was time to move on to bowel management. Ian has been on the laxative Miralax for over a year, and so far it is the best thing we've tried for his constant constipation. Now that we've got the toilet seat, we're moving into the magical world of cone enemas. That's right. Last night Justin, Ian, and I attempted our first one, and I'm happy to say that we all lived. We achieved the desired result and Ian seemed unfazed by it all (he got to play DS the whole time, so he was happy).

The whole process made me somehow happy and sad at the same time. While I'm happy that we're moving Ian towards a more "typical" bathroom experience, I'm sad that it still is a very far cry from typical, and may always be. I'm happy he's finally able to sit on the toilet instead of lying on a diaper pad like a baby, but I'm sad that he has to sit on the toilet every night and wait for a bag of water to make him poop. I know it will become normal for all of us over time, but it will never actually be "normal". It feels very much like when he was in the NICU after he was born and the nurses had to show us how to catheterize his bladder and then watch us do it for the first time. I dreaded it and hated it at first - hated it for myself and for Ian - but now we do it four times a day like it's nothing. It's part of our daily routine and our life.

It's both wonderful and horrible to go down this road; it's something I've been wanting and dreading all at the same time. I'm so excited for the day that we get this schedule down and Ian can be dry during the day and wear underwear like the other kids his age, instead of diapers. I also can't wait to have only one kid in diapers instead of two!




Tuesday, August 7, 2012

Team Ian!

Ian plugging the Sprint for Spina Bifida

This Saturday, Ian and our family are participating in the Sprint for Spina Bifida in Milwaukee, Wisconsin. This Sprint is the 19th annual, but it is the 3rd annual for Team Ian. Someday, Ian may want to do the 5K wheelchair race, but for now we all do the 2 mile walk/wheelchair together. It's a lot of fun and it's great to feel the unity of all the other Spina Bifida families on that day. It's a day when Ian and his wheelchair are the norm, not the oddity.

Fundraising for the Sprint benefits the Spina Bifida Association of Wisconsin, which puts on programs for people with Spina Bifida and their families, as well as offers support through grants and scholarships.

Please consider making a donation to support Team Ian if you can. Any amount helps and is greatly appreciated! I also want to give a big THANK YOU to those who have already donated; it means so much to Ian, and to me, to have your support!

Go Team Ian!

Monday, July 30, 2012

Developing Interests

It's an exciting time in The World of Ian: our family just bought a new Casio keyboard. Justin and I had always planned on piano lessons for Ian, but we didn't think he'd be able to start until he was a bit older. Truth is, the keyboard was something I stumbled upon while browsing Amazon for running earbuds. The price was amazing, so I showed it to Justin and we decided to go for it. The plan was to put it away and save it for when Ian was older and starting piano lessons. Yeah right - we opened it the day after it arrived on our doorstep! Ian was very excited, and happily poked around at the keys for a while before trying to play with his elbows. He's shown a love and aptitude for music since he was a baby, so starting him out with a piano just seemed like a good first step.


Ian enjoying music at a young age :)


I myself started piano lessons when I was around eight - without much success - and it led to joining the percussion section of the school band at 10, which I did all the way though my high school years. I would love for Ian to play a musical instrument, if he wants to, so if he's already showing interest in music, I want to be sure to foster that interest from the start. I asked Ian's OT if she thought piano lessons would be good for him at this point, and she thought it would be great for developing his hand and finger strength and dexterity. I'm so excited to start him down the road of playing music, and I can't wait to see what other things he becomes interested in as he grows! 

Jamming out on the new keyboard.




Wednesday, July 18, 2012

Struggle

Lately, I've really been looking forward to Tuesdays. Tuesday is the day Ian has his out-patient physical therapy in the afternoon, and this Tuesday was his second session with his new HKAFOs (hip-knee-ankle-foot orthotics for those of you not in the know about lower body orthotics). They strap around his waist and go all the way down around his feet, and have movable joints at the hip and knee that can be locked or unlocked. When the joints are locked, Ian can stand with the support of the braces, as long as he holds himself up on something with his arms. At home, I stand him up against our coffee table or couch and sit close beside him to keep him from tipping over on either side. At PT, his therapist Jill holds on to him, and I can watch him stand and move from a little bit of a distance. I can see how wobbly and uneasy he is at first, having to stand on those two little legs that have been mostly decoration for so long. I laugh to myself about how his butt sticks out a little, even when he's standing straight up - a common feature for standing/walking people with spina bifida. He struggles to keep his upper half up on top of those two little stick legs. He sags down as he gets tired, and Jill has to keep a hand on his chest to keep him from completely dropping forward as he tries to support himself on a little walker.

Ian on the day he got his HKAFOs, experiencing standing for the first time.

As a mother who has never seen her first born child crawl, walk, or run, seeing him stand up on his own two little feet (which are the same size as his 15 month old sister's, by the way) is amazing. It's small, but it's HUGE. I know it, and I think he knows it too. He struggles and he tries, and he wants to do it. He sees his little sister walking around with ease while he struggles just to stand up in braces with a walker. He knows it's different for him, but he wants to keep trying. He gets tired, and then he gets stubborn, but the next day he's ready to try again. I don't know if he'll ever be able to actually walk with the use of braces, but I feel like we at least owe him the chance. With two weeks of HKAFO experience under his belt, Ian can see that it's not easy to even stand, much less walk, but as long as he wants to keep working at it I'll keeping sitting by him, trying to prevent him from face-planting into the floor.

Ian with two weeks of standing practice under his belt, using a walker for support.

Monday, July 9, 2012

Slowing Down: Vacation Remix!

*Sigh*...vacation is over. Back to reality. Justin goes back to work, Ian goes back to summer school, and I go back to being the shuttle that goes to and from summer school, therapy appointments, doctor visits, and so forth.

Our whole family had a nice vacation relaxing and slowing down. We stayed at a rented house on a nice lake and enjoyed the air conditioning during a Fourth of July heat wave. We were happy to find that the lake was so shallow by the pier that we could put Ian's fold-up camp chair right in and let him sit in the water! He had a great time in the water with his sister and grandpa, and also got to try kayaking and going out in a motor boat.

Ian in the kayak with his grandpa

Before we left for our trip I was lamenting a little over the fact that Ian would miss his weekly activities. Even though it was Fourth of July week he would miss two days of summer school, three therapy sessions, and a swimming lesson during the week we'd be gone. I figured he'd make up for the swimming lesson easily with the lake, but I hated to think of him missing therapy sessions, even for vacation. I briefly considered making the 4+ hour round trip drive to bring him to at least one of his sessions. Once at our destination though, the lake called and the hurriedness of everyday life was soon forgotten. Now that we're starting another busy week, I'm glad Ian - and I - got a week off of everything. We had a lot of fun and made many good memories that I wouldn't trade, even for therapy.

Friday, June 29, 2012

Slowing Down

Most people who know me probably wouldn't list "patient" as one of my personality traits. I hate to go slow - it can be downright physically uncomfortable for me. I don't walk slow or drive slow. I'm a busy person and sometimes feel a lot of pressure to get it all done, so I go fast.

I believe that Ian, unfortunately, has inherited my impatience. He's impatient, but he's not fast. He's slow, and he can't help it. He hasn't had his wheelchair a full year yet, and though he's learned a lot about steering and maneuvering in the past 10 months, he can't propel his wheelchair fast with his scrawny, little arms. He needs to build strength and endurance, something that can only be achieved with practice and - I'm afraid - patience. When we are out in public with the wheelchair I strive to overcome my need to go quickly and let Ian wheel himself. From the hallways of the doctor's office to the aisles of the mall, Ian slowly wheels himself along while I walk a bit ahead, pointing out obstacles and offering encouragement to keep him on task. When he seems worn out and I ask him if he wants me to push him, he almost always answers "nah" and keeps going, wanting to do it by himself.

While going with him at his snail's pace, I notice other people, impatient and fast-moving, around us. So far no one has ever been rude to Ian in public (probably because he's so cute!), but I worry sometimes about how he will manage in this fast-paced world that continues to pick up speed by the day. All I can do is help him adapt to the world as much as possible. It's all any parent can do for their child, special needs or not.

Ian teaches me to put the brakes on life sometimes. Not everything has to be done quickly. Not every task has to be rushed though - and more importantly - not every task has to be done right away. Ian teaches me patience, and it can sometimes be a painful lesson, but one I need nevertheless.

On that note, I'm taking next week off because we are going on a family vacation! Relaxation, here we come!

Friday, June 22, 2012

Summer Fun Begins!

It's official: summer has begun, and with it come many fun things to do that keep our family busy during the day, as well as some nights. This is a recap of the past few weeks, which while very busy, were also very fun.

Ian turned 4, and the celebration seemed to stretch on for days. He saw one side of our family for lunch and outdoor fun on the Saturday before his birthday, then saw the other side on Sunday, and had a celebration day on his actual birthday with just his nuclear family. It was a gorgeous day, and we took him to a completely handicap accessible playground called Possibility Playground. We had never been there before, mainly because it is 45 minutes from our house, but we thought what better day to try it out than Ian's birthday. It was fantastic: huge, tons to do, and most importantly, completely ramped. Ian was able to go up to the top of the playground and look down from the slide like any other child. He really liked it, and had a flock of admirers around him and his wheelchair most of the time. It will definitely be worth the drive for more trips in the future.


Ian on the top of Possibility Playground
The next week, we headed upstate three and a half hours to a rented cottage with some family friends. We had a good time hiking, going to the beach, having a bonfire, and sharing many meals together. Ian loved going through the woods in his wheelchair (he needed help pushing over the uneven terrain) and throwing rocks into the water at the beach. I wish we could have stayed longer and done more fun things, but it was a nice, relaxing trip with family and friends.

Ian and his sister, dipping their feet in at the beach

The day after we returned from our trip upstate, Ian went to his first day of summer school. With new teachers and classmates to meet, I thought he might be a little overwhelmed at the end of the day. I should have known better; Ian was energetic and excited. He enthusiastically answered "Yeah!" when I asked him if he'd had a good day, and said the same when I asked him if he wanted to go back the next day. He's done with his first week now, and continues to be happy and ready to go back. I'm glad he'll be kept in the swing of the school schedule over the summer, especially since we'll be adding some full school days to his week once fall begins. I'm not looking forward to weening him off his naps this summer!

Our busy week ended with swimming lessons for both kids. This is Ian's third year in Parent/Child lessons, but it was Lydia's first time in a big pool. Both kids did great; sitting on the side and "jumping" in to me, and going down the little slide into the pool. Everyone was ready for bed at the end of the night!

A couple fun summer weeks down, many more to go! We have more fun plans ahead of us; stay tuned!







Wednesday, June 6, 2012

Looking 4-ward

This week marks the end of Ian's first year in school. He will also be turning 4 in a few days, which he is mildly enthusiastic about. The past year has been full of changes and new experiences for Ian (and me!) - and I'm generally not much of a future-looking person - but here's what I'm looking forward to in the next year for Ian:


  • Summer outings - This will be Ian's first full summer with his wheelchair, and since his sister is no longer a newborn, I am looking forward to getting them both out more to do fun things and have new experiences. Ian will have a busy summer of therapy appointments and summer school, but we'll work around his schedule to get some fun outings in there as well. I'm especially looking forward to taking him to the zoo and letting him lead the way on his own in his chair.


  • 4K - In fall, Ian will begin half-day 4K at the school where he attends Early Childhood now. This will be a mainstream classroom with at least 15 children besides him (his current class is seven children). Ian often chooses to play alone instead of with his peers, so I'd like to see him blossom more in that department when he is in 4K next year.


  • Toilet "training" - Though we are currently still battling for approval of Ian's toilet seat, I am optimistic we will get it sometime this year and start the process of using it. We've gotten him to the point where he is dry between catheterizations, so once we can begin a bowel schedule on the toilet he will no longer need to wear diapers - yay!


  • More words, less whining - this might just be wishful thinking on my part, but I'm really hoping the next year will bring a giant breakthrough for Ian in the speech department. He's made so much great progress - expanding his vocabulary from three words to almost 20 in the past year - but still relies too much on signs and my least favorite form of communication: whining. I know he's frustrated that he can't verbally express all that he wants to, so here's hoping that he can channel that frustration into some real progress over the next year.


  • Some (or any!) weight gain - We're finally starting to see progress on this one, I think. It used to be a miracle if we got a few bites of food in his mouth during all three meals in one day. Now he consistently eats at all three meals, and most times cleans his plate. He gags and throws up less, so more food is staying in him, which will hopefully transfer to a little weight gain this year at his check up.


  • Physical gains - The addition of his wheelchair last year has really helped Ian gain a lot more upper body strength. He's no Hulk or anything, but he can wheel himself where he wants to go, no problem. He'll have to continue working hard to gain the strength and stamina to be able to wheel himself around for longer periods (he will be doing some full days at school next year), as well as learn to make transfers - to his bed or to the toilet - on his own. If he falls, he needs to be able to get himself up and back into his chair with only his arms. Though he's no Hulk now, he's going to need to become one on top to make up for what's lacking on the bottom.

Even though he's growing up so fast, I'm ready to say goodbye to the 3 year-old Ian and welcome the 4 year-old Ian in a few days. I'm so proud of the progress he's made while he's been 3, and I'm looking forward to all the wonderful things he will do and learn while he is 4!

Happy Birthday, Ian!

Ian at the lakefront in Milwaukee

Tuesday, May 29, 2012

A Great Fall

Today Ian experienced another first that I had been dreading. While at school, Ian went down a ramp on the playground with his wheelchair, caught his front wheel on a wood chip, and flipped forward face-first. Since he's strapped into his wheelchair, it followed and sat on top of him. The school called me and I rushed to the health room to get him. He had a fat lip, road rash on his face, and also a bloody nose that they'd managed to stop by that point. I felt terrible for him, as did all his teachers and therapists that were waiting with him when I got there. The lady in the health room gave me the accident report and recommended I call Ian's pediatrician to see if she'd like to see him because he suffered a head injury.

The aftermath

Once home, I called the pediatrician's office and spoke with the nurse. I told her what had happened to Ian, and at first she didn't seem too concerned by it. Just your typical playground fall. Then she pulled him up in the computer system and saw he had spina bifida and a VP shunt in his brain. Then everything was different. "Take him to the emergency room at Children's Hospital" she said.

Cut to: me and Ian sitting in the emergency room waiting area at the children's hospital where he goes to spina bifida clinic. Justin and Lydia are attempting to park the car. Ian is in okay spirits, watching TV and the other waiting area children. An hour and a half later, we see a doctor. She asks questions while checking Ian over, and determines he has no broken bones in his face, no debris in his scrapes, and isn't having symptoms consistent with a concussion. She gives me some salve to apply to his face, I sign some papers, and we're back out on the street.

By the time we get home, Ian is exhausted. We eat dinner, let him watch 20 minutes of the movie "Cars" (his current favorite), and put him to bed. Part of me wishes I hadn't taken him to the ER because he probably didn't really need to go. The other part of me is glad we went and had his shunt checked, just in case. As for Ian, he'll be better with some rest and plenty of Neosporin. It's going to be fun telling people he was in a bar fight for the next week.

Monday, May 21, 2012

D-Day (Dentist Day)

Today the kids and I survived something I'd been dreading for weeks and avoiding for years. That's right, they each had their first dentist visits today. *scream*

Since Lydia is under 18 months she only had a quick little exam in which they counted her teeth (she has seven), and brushed them quickly while she screamed. It wasn't that bad, but she was stuck to me like Velcro afterward (what else is new?).

Ian, on the other hand, was way overdue for a first dental exam. His pediatrician had asked me to schedule him for a dental exam before his two year well visit. That was two years ago. Though she continued to ask me about Ian going to the dentist, she didn't really make me feel bad about not taking him, so I just kept avoiding it. Like a lot of kids, I'm sure, Ian hates having his teeth brushed. Once we've muscled the toothbrush into his mouth, it's a fight to keep it in there. Most of the time it ends with Ian gagging, and occasionally throwing up, because of his very sensitive gag reflex. The thought of letting a stranger poke around in his mouth and try to brush his teeth with that spiny toothbrush-thing while he's choking and gagging was enough to make me "forget" to schedule the appointment for the last two years.

My other hang-up (and I don't know if this is my being selfish for me or for Ian, but it's probably both) was that Ian already has so many appointments and doctor visits that it was hard to bear adding another one. It seems like every week I am dragging him to a doctor visit, a testing appointment, a brace adjustment, an orthotic fitting, or a specialist consult. And that's on top of his schooling and out-patient therapy appointments. He has to endure a lot of things he doesn't want to do at these appointments, so to add one more to the docket just seemed cruel, to him and to me.

It had to be done though. We went to the dentist today, armed with noise-reduction headphones, his blankie, and an extra shirt in case of throw-up. We needed none of them. Ian was allowed to sit on my lap and the hygienist cleaned his teeth with minimal guff from him. She was very nice and patient with him (and me!), and tried to put him at ease before she did something. At the end he happily accepted a prize from the treat bucket (a little orange dinosaur which Lydia now loves and will not part with) and had his picture taken with the dentist. Only six more blissful months until we go back and do it again.

Ian's fourth birthday, as well as his four year well visit, is fast approaching. This year, instead of looking at the floor and mumbling when the pediatrician brings up the dentist, I can proudly say Ian went, didn't throw up, and didn't bite any one's finger off. That's the measure of a successful dentist visit, right?

Tuesday, May 8, 2012

Teacher Appreciation

I've heard conflicting reports as to whether this whole week is Teacher Appreciation Week or if today is Teacher Appreciation Day, but either way our family has a lot to be thankful for. I sent cards along with Ian to school today...seven of them. He has a main classroom teacher, two aides in his classroom, a physical therapist, an occupational therapist, a speech therapist, and an adaptive physical education teacher, all of whom needed to be thanked for the diligent and outstanding work they do with Ian each week. I'm in awe of the progress he's made over this past school year, and a large part of the credit goes to his teachers and therapists. They all possess the drive, patience, and humor that it takes to work with Ian day in and day out. As he grows I hope I will always be able to say that his teachers are as excellent as the ones he has this year.

Outside of school there are also three other important people who are helping Ian and our family. He receives outpatient therapy from physical, occupational, and speech therapists on a weekly basis in the afternoons. These three therapists have been working with Ian since he was two, and I'm so glad they are a part of our lives. Not only do they work well with Ian, but they answer my questions, give me advice, and come with me to testify at the appeal hearings when their therapy sessions with Ian get cut. Unlike Ian's school therapy, I sit in on all the outpatient sessions, so this time is really invaluable for me to learn exercises and techniques for home use. Though they aren't technically teachers, they sure do teach Ian (and me!) a whole lot, so they need to be appreciated too.

I also genuinely want to thank others in our lives that are teachers. My mother-in-law has been an elementary school teacher for over 20 years, and is always finding things from her personal teacher stash to pass on to me for Ian. She's interested in how Ian is doing in school and what kinds of new things he's learning. One of my best friends, whom I've known since kindergarten, is just starting out in the world of teaching but she's doing a great job. She's always willing to help me out with Ian, and also listens to me gripe when problems arise. I always tell people she's the kind of teacher you want your kid to have. Another family friend is an elementary school teacher and has been in my life since I was born. One summer I remember going with her to set up her classroom, and that experience made me consider becoming a teacher myself. Even our neighbor across the street is a special education teacher in our district, and I'm so thankful for the advice she gives me about Ian's schooling.

I'm so grateful for all the teachers in my life, and those that are now in Ian's life. Too often, teachers are under appreciated for the excellent, and sometimes difficult, work they do with our children. It is very important work, and not work that should be taken lightly. Having a child with special needs has made me all the more thankful for their help, knowledge, and guidance, which I value so much!

Thank you to all the teachers, aides, therapists, and daycare workers out there!

Monday, April 30, 2012

Good Help is Hard to Find

This past weekend was a first. Justin and I spent our first night away from both our kids. The total time away added up to about 19 hours, but it included the overnight, so it counts! Ian and Lydia had a great time with their grandparents, and Justin and I had a great time going out to dinner and seeing West Side Story. I also especially liked the part where we got to sleep past six in the morning.

Besides being our first night away from the kids, it was our first date night in over two years. We rarely go anywhere without the kids -- and what that really means is that we rarely go anywhere. Lydia is still very much in her stranger-danger phase, and Ian's special needs make it hard for us to leave him with anyone that isn't fully prepared. We can't just hire a high-schooler to babysit him. Besides not being able to walk or fully verbalize, he has serious gaging/choking issues with food, multiple medications that require specific dosing instructions, not to mention the catheterizing of his bladder that needs to happen every few hours. All that coupled with my anxiety over his care equals not many caretakers in his life.

This issue with his care is one I've been trying to get over (a little bit) since we've had a second child. Sending him to school for a few hours each week, and having to trust that his care needs are being met there, has gone a long way. Next year he will go to school some full days, which means he will have to eat lunch and be cathed at school, which is brand new territory for both him and me. I know it will be good for both of us, but a part of me is also dreading it, big time. For now, I will revel in the fact that I spent last weekend out having fun with my husband, and I only texted my mom five times to check on the kids. For now, that's enough.

Wednesday, April 18, 2012

Tidbits

Last week was spring break for Ian, and though the weather wasn't nice enough to do some of things I'd planned (the zoo, parks), we still had a pretty nice time playing at home and doing indoor activities. With the help of one of my friends, I took the kids to a pizza buffet/arcade-type place, which was a first for Ian. I was worried that the noise and lights of the arcade would give him sensory overload, but after he got used to it he was fine. He has a skee ball game on his iPad, so that was the game he was most excited about when we entered the arcade. The ball was too heavy for him to throw all the way up the ramp, but he had fun throwing it and having it roll back down to him. He also tried mini bowling and arcade-style Mario Kart, to name a few. He sat on my lap and I did the petals and he did the steering. He loved it until the steering wheel vibrated -- that really surprised him and he snapped his hands off the wheel and wouldn't drive anymore. At the end we had enough tickets for a little ball with SpongeBob on it, so he was really happy with that. It was a good day and I was glad to get him out of the house and trying something new. He even ate pretty well at lunch (but probably only because I was holding skee ball over his head)!

Ian and I playing Mario Kart in the arcade

In other news, the judge's decision about Ian's out-patient PT visits came over the weekend...our appeal was dismissed, so now Ian's PT visits are officially cut in half (down to twice a month) by the state. It was disappointing, of course, but now we will appeal to our private insurance to cover it, and hopefully they will. At least it is near the end of the school year; over the summer he will probably be approved for once a week therapy because he will not be getting any from the school district.

Speaking of insurance, we now have Ian's toilet seat ordered and are waiting on approval from insurance. I'm hoping to get it by the time school ends so that we can spend the summer getting used to it and into a routine. Cathing on the toilet is the first step on the road to getting Ian out of diapers and helping him to be independent in the bathroom -- it's a road I am eager to get started down!

This week, Ian is happy to be back in school and I am happy to be back into our normal routine.

Friday, April 6, 2012

Mobility Envy



I’ve noticed that lately Ian has become very aware of his little sister’s increasing mobility. She just turned one this week, and while she isn’t walking yet, she is scooting around on her butt to get what she wants as well as pulling up and standing at the coffee table in our living room. Last week she was practicing walking while holding onto my hands and Ian immediately pointed to her, then to himself, meaning he wanted to do what she was doing. Even with his AFOs on, he can’t lock his knees to bear weight on his legs, so I basically just had to hold him under the arms and let his feet drag on the floor. He was kind of satisfied by this, but I could see that he could tell it wasn’t the same as what he’d seen his sister do.

Ian has always been very unmotivated when it comes to mobility. As a baby, when he was on the floor he never wanted to roll or commando crawl with his arms. We’d bribe him with all kinds of toys, but he’d just lie there like “I don’t want it that much”. When he did finally roll over it was only to get off his tummy, which he hates to be on even to this day. Justin and I ended up just carrying him around because he’d just stay put forever otherwise. He didn’t move around our house on his own until we got him a loaner wheeled-stander at 18 months. Even now that he has his wheelchair he doesn’t really tear around the house, preferring instead to sit at a table and play. That’s just what he’s used to.

Enter baby sister. She scoots, she stands, and soon she’ll be walking. Obviously Ian sees people walk all the time. He goes to school with tons of other kids who all walk while he rolls his wheelchair. It never seemed to bother him one iota until it was his own baby sister. Somehow, seeing her walk, even though she couldn’t do it on her own, flipped a switch in him. Suddenly he thought, “if she is doing that, I should be doing that too”. It’d be great if Lydia’s development helped Ian be more motivated to move on his own. He’ll be getting HKAFOs, hopefully in the kinda-near future, so maybe one day soon it will be him walking while holding onto my hands.

Saturday, March 31, 2012

Who Can You Trust?

In the past two days I've stumbled across two stories that have made me sad and angry. The first one I saw yesterday on a spina bifida group I am part of on Facebook. It was making the rounds because, though the boy in the story has cerebral palsy, he is in a wheelchair, which is a commonality for people with spina bifida as well. It was a picture posted by his mother, showing him at a choir concert with his class. His class is up on the risers with the choir teacher in front of them, and the boy, whose name is Alex, is off to the side, not at all a part of his class. His mother explains that she expected the teacher to position her son with his class after they were up on the risers, but instead they just started singing the song while he sat off to the side. In the audience, she felt there was nothing she could do to help her son without embarrassing him while his class was up there singing. She didn't want to make it worse for Alex, so she waited until after the performance and then complained to the teacher and the school. It looks like she's getting some local press for the story, and possibly some national attention too, according to her Facebook page.

The second story I just saw today, also making the rounds on the spina bifida group page. This story, reported by ABC News, is about a fourth grade boy with cerebral palsy who was being mistreated at school. Not by fellow children, but by a teacher and an aide in his classroom. Grown adults who were supposed to be teaching and caring for this boy were putting him down and ignoring him while teaching the other children in his class. The teachers were initially suspended, but after the suspension was up they returned to the same school, but were assigned to a different class. The boy's mother, finding this unacceptable, pulled her son out of school until the teachers were again taken out of the school and put on suspension until their ultimate fate is decided by the school board.

Both of these stories infuriate me and pull at my heart, as I would expect them to for any mother, or any human, for that matter. As a mother of a special needs child in a wheelchair, they scare me. Right now Ian only goes to school half-days, but someday he will go all day. Both the mothers of these two boys said they thought their sons were being completely included and cared for while they were at school. Just when you think you can trust the teachers you leave your child at school with every day, a story like this makes you doubt who your child is spending their days with. It's difficult for any parent to entrust the care of their child to a person that isn't them, but for parents of special needs kids it can be even more difficult. Our kids have more needs and more challenges than others. As their parents, we have to take these in stride. No matter how much we love our kids, we can't force other people to love them, not even their teachers and/or caregivers.

My takeaway from these stories is that, as Ian's parent, I must be extra vigilant in monitoring who is with my son while he is at school. Over the course of this school year I have gotten to know all of Ian's teachers, aides, and therapists, and am 100% confident that they are taking good care of him and doing a great job teaching him while he is at school. He is happy to go to school in the morning and happy when I pick him up again. Many of the people who are working with him this year will be doing so again next year when he is in 4K, but there will also be new teachers and aides in his life as well. When the school holds its open house in August before the start of the term, I will be the first one there waiting to meet them and introduce them to my wonderful son. After that, all I can do is keep a close eye and step in if something doesn't seem right.

Friday, March 23, 2012

Cuts, cuts, cuts

This week we had Ian's IEP (Individual Education Plan) at school to go over what he'll be doing next school year when he is four years-old.
Some background: for three year-old kids with special needs, our school district offers the Early Childhood program. Ian goes four half days a week and it is a small group of special needs kids with a child/teacher ratio of 2:1. The next year, at four years old, the EC kids can move up to 4K, which is half days five days a week, if they are ready. In addition to 4K, which is all "typical" kids and a class of 25 kids with one teacher and one aide, the EC kids can also return to the small group EC classroom for the other half of the day to get more attention and work on particular skills with the EC teachers. This is what we assumed the plan would be for Ian next year.

So, at the IEP, we learn that the EC classroom is being cut out of the program for EC kids going into 4K next school year. The plan for Ian was to put him into the 4K classroom with about 25 other kids. The end. He would still get his therapies as usual, but all in the context of the 4K classroom only. I do want Ian to be in the mainstream 4K classroom next year, but I also want him to be able to have time in the EC classroom where there are fewer kids, more teachers, and more time to work on skills, as well.

Then, we found out that Specially Designed Physical Education is also being cut out for 3 and 4 year old EC students. SDPE is Ian's favorite part of school, and he absolutely loves his teacher. This teacher gets Ian to work like most people cannot, and we've seen so many gains in his upper body strength since he's started the program that the department developed for him. To find out Ian would miss out on this beneficial program next year in 4K was so disappointing.

After I sat with this new information for awhile, I decided that it was unacceptable to be cutting programs from these kids who need them the most. I looked up the e-mail address for the Director of Pupil Services for the district and sent her an e-mail explaining Ian's situation and my disappointment in the decision to cut these programs for him and other EC kids. She responded by asking me for my phone number and then we had a phone conversation in which she explained why she had made these changes. I disagreed with her on almost every point. She's never met Ian or any other of the kids in the EC program. She made these decisions without the input of the teachers or the parents of these children. To me, that isn't right.

The next day I talked to some of the other parents with children in Ian's EC class and asked them to contact the Pupil Services Director to let her know that they also disagreed with the cuts to the program. That afternoon, I received a call from her. She told me she had spoken to Ian's teacher and during their discussion decided that since Ian and the other EC children had been told they could have 4K plus EC classroom when they were four, they would receive that service. The same was true for SDPE. Obviously, I was happy about this news, but I was still concerned about the future kids that would be coming into the Early Childhood program. Would they be able to have 4K plus EC in the future? Of course, she wouldn't answer me and would only tell me what Ian would get, not any other children. I took that answer to mean "no", so the battle will still continue on that front, but it was definitely a win for Ian and the other EC kids going into 4K next school year.

It felt good to get a win.
Ian's first day in EC classroom

Sunday, March 18, 2012

6 Things Parents Want You to Know About Our SB Kids

One day, out of curiosity, I posted a question on a spina bifida page I'm part of asking what parents wanted others in society to know about their kids. These are the responses I received, including one I wrote myself, of course:
  1. You can let your child play/talk to my child. He won’t break and it’s okay to ask questions. Ushering your child away when they approach my child only teaches your child that kids like mine aren’t people to be friends or playmates with. Plus, it’s hurtful to my child.  – Nicole, mom to Ian
  2. People don't need to say they are sorry my child has a disability. I want them to understand that my child is amazing and perfect, and not someone to be pitied.  – Jamie Lynn Veprek, mom to Madi. www.aworthyjourney.com
  3. I wish people would understand that he is a person just like everyone else, has feelings, and is just as capable to do things. Even if he does them slightly different.  -- Kirby Winward, mom to Tanner. www.raynstarwinward.blogsp​ot.com
  4. Please don’t ask very personal questions about my child in front of them. They can hear you and they understand you.  – Jamie Lynn Veprek and Star Kirby Winward collaboration
  5. Their life is worth living. They are happy and just as valuable to society as all other people.  -- Dawn North James, mom to Elijah
  6. Perhaps one thing people need to know is to watch their toes because Trevor is rolling in!  -- Dave Conklin, dad to Trevor
So, there it is world!