Thursday, December 5, 2013

10 Things You Might Not Know About Ian

Ian is a kid with quirks. If you're meeting him for the first time, some will be quick to appear (he will find your cell phone and take it from you - doesn't matter if he just met you - your cell phone will become his cell phone), and others take being around him for an extended period to stumble upon. 

Whether you know him in real life, or only through this blog, here are a few things you may, or may not know, about Ian:

1. He's very affectionate. Ian has a bit of a reputation for being prickly, especially when people enter his personal bubble, but once you're in his inner circle (which now includes teachers and therapists that have been with him for years), he becomes very affectionate. He's not the best at puckering his lips for kisses, or squeezing tight for hugs - no - Ian's affection currency is forehead touching. He reaches out his arms, grabs your face, and brings it in to his face until you're forehead is pressed to his. Then you must stay like that, indefinitely. If you pull away before the allotted forehead touching time is up, he pulls your face back in. This is how he shows love.
Me, on the receiving end of a forehead touch.

2. His feet are super-tiny. Like, really. His bare foot is a baby size 4. With his AFO braces on, he fits into a whopping toddler size 8. When I filled out the application for his Peach's Neet Feet, the artist painting his shoes actually emailed me to verify his shoe size - he thought an 8T shoe for a 5 year old had to be some kind of mistake. Nope. That's his shoe size. It's my understanding that his feet aren't really growing much because he's not walking on them - his body is not being given a signal to grow them. 

3. He's got good rhythm. Ian started bobbing his head along to the beat of music before he was a year old. We'd always know when he liked a song because he'd be bobbing his head to the beat - he could feel the rhythm. Today, he has a very eclectic taste in music which includes Beck and Gorilliaz. He just started piano lessons about a month ago, and that is going well so far, I'm happy to say. 
Music lover from the start!

4. His hearing is too good. When Ian reached his second birthday and still hadn't said a single word, the doctor scheduled a fancy in-depth hearing test for him. We came out of it with the knowledge that Ian could hear well - too well. His hearing is so acute that loud noises are unbearable for him. Crowd noise, fireworks, raucous laughing - he hates it all. Above all, he hates the sound of his little sister's cry. She's two and a half, so we're in the midst of prime temper tantrum season around here. When it's too loud for Ian, his reaction is to plug his ears and then scream over the noise that is too loud - makes sense, I know. We have noise-cancelling headphones stashed in our house, car, and grandparents houses to help quiet the sometimes too-loud world for Ian. 
Our choir of angels. She cries, he screams.

5. He HATES gum. Ian has never chewed gum, and I have my doubts that he ever will. He cannot stand the sight of another person chewing gum. The first time he ever saw someone chewing gum (Justin), he gagged and then threw up. To this day, he makes a face when he sees someone chewing gum near him, and then he fixates on it until it makes him gag. Gum is not his thing.

6. He's a master "staller". Whether it's going to bed or having to finish playing a game, no one can stall the inevitable like Ian. He starts with holding his hands out and saying "wait", but then it escalates to asking 20 questions to hopefully distract you from doing whatever he doesn't want you to do. His most effective method is asking what each of his family members "did" that day - every family member he can think of.

7. He sleeps with his face covered. That's right, covered. Even in summer, that face must be beneath a blanket shroud. He has a muslin blanket that he's had since he was a baby, and that must be on his face if he's going to sleep. Every night I go in his room before I go to bed and try to carefully peel back the blanket from his face. Nine times out of ten, he wakes up, whines a complaint at me, and covers his face back up. Don't mess with his blankie.

8. He'll beat you at video games. Ian has a knack for video games. We started letting him play a little Nintendo DS when he was around three - a Cookie Monster game that helped him learn numbers, shapes, and colors, and improved his finger strength and coordination - and a love affair began. He can now play games on the iPad and Wii, as well as his own DS. He can get farther in the "Despicable Me" Minion game than I can!

9. He has eagle eyes. If spotting and picking lint off people were an Olympic event, Ian would take the gold. He can see the tiniest fleck of string or lint, and will risk tipping himself over to get it. If the lint happens to be on your shirt, he will pull you over in order to get it off you. He preforms this service free of charge. You're welcome.

10. He wants to talk to you. Though conversation isn't his forte, I can see how much Ian yearns to communicate with other people. When we walk home from school, Ian gives a wave and says "hi" to every single kid we pass on the side walk. Every. Single. One. When he's in a casual setting with other people, he will say "hi" to everyone that crosses his path. If the person says "hi" back, he's usually satisfied. If they don't, and ignore him and keep walking, he will wheel after them, holding out his had and saying "hi" repeatedly, hoping they'll acknowledge him. I try as much as possible to let kids know that it's perfectly fine to talk to Ian, even though he sounds a little different when speaking. The fact that he's trying makes me so proud of him.


So there's a few things about Ian you may not have known. Thanks for getting to know him - to know him is to love him!



Thursday, November 14, 2013

Enigma

Ian got to play hooky from school yesterday, but it wasn't really to have fun. We took him to the hospital to have a contrast test done on his shunt. 

His shunt is a tube that drains fluid from his brain into his abdominal cavity. It's controlled by a valve under his skin on the side of his head. He's had a shunt since he was a week old, and it was revised when he was three months old because one side of his brain wasn't draining fluid. The shunt was extended into the left side of his brain so that it would also be draining the fluid from that side. The surgery was successful, and it's been smooth sailing - shunt wise - the past five years.

Last month at spina bifida clinic, we described some behaviors to the neurology PA that made her suggest Ian have a quick MRI, just to check his shunt and ventricles. The MRI showed that his ventricles were the same as they were when he was three months old - the left side was full and large, and the right side was small and deflated. Suspecting that the left side wasn't being drained by the shunt, we scheduled a contrast test. Ian would be sedated, and they would inject contrast into his shunt valve, then put him in a CT scanner to see if the contrast showed itself on the left side. If it did, that would mean that the shunt was indeed draining the left ventricle.

In the radiology waiting room wearing his Finn hat and magic PNF shoes

Once we got settled in the prep room, Ian was ready to break out the iPad. We ended up waiting almost an hour for the anesthesiologist, so we all got some snuggling and iPad time in before it was time for Ian to go to sleep.


They let us stay with Ian until he fell asleep, which was very difficult. I don't know that I'd do it again if I was given the chance. Seeing him go limp in Justin's arms was just too much for me - I started crying and we were ushered back to our little prep room to wait out the test, assured that he would be fine.

When they brought him back to us, he was awake, but quiet. As soon as he saw me, he started crying. I felt horrible for him - he was groggy, confused, and scared. He was angry about the IV in his hand. We tried to calm him down by turning off the lights and giving him his snuggle blanket from home. 

A bit P.O.'d after waking up from anesthesia 
After a little while, we could see glimmers of our Ian boy coming back. He said, "I want to play Wii." Luckily, the Child Life Department at the hospital had already put one in the room.

Ian and Justin playing Wii in recovery
After an hour in recovery, we got him to drink a little water (using our old stand-by, reverse psychology), and we were free to go. We headed upstairs to see Ian's neurosurgeon. 

Back to his old self, waiting to see the neurosurgeon
Ian's neurosurgeon came in and told us good news - the contrast did show up in Ian's left ventricle, so the shunt was working and it was in the correct place, so Ian wouldn't need a shunt revision surgery. We were still confused why his ventricles would differ so much in size if his shunt was working properly, and that is what the neurosurgeon didn't have an answer for. He said Ian's brain seems to be choosing to be this way - to not equalize the ventricles. He had never seen another case like Ian's. Ian's brain...is an enigma. 

There isn't really anything more we can do. Ian has a shunt, and it works. His ventricles are very unequal, but they're not under pressure at the moment. All we can do is let his enigma brain do its thing, and see what happens.

Today, Ian was happy to return to school and see his friends. I continue to be amazed at how resilient this little boy can be!



Tuesday, October 15, 2013

A Peachy Day

Waiting is hard. So hard. It's hard for me, and it's especially hard for Ian. That is why I did not tell him that his custom painted shoes from Peach's Neet Feet were coming UPS this week. I was tracking them semi-obsessively. 

Peach's Neet Feet is a great non-profit organization that creates custom painted shoes for kids with chronic illnesses or conditions. Wonderfully talented artists donate their time - and wonderfully generous people donate the money for the shoes - so that kids can have their name and their favorite things on shoes that are just for them! It's such a simple way to bring happiness to a child.

When I filled out the application for Ian's shoes, I asked that they please make him "Adventure Time" shoes. In case you don't know, "Adventure Time" is a cartoon about a boy and his magical dog that go on adventures and defeat evil. Ian really loves it - and Justin and I don't mind watching it either. It has themes about doing the right thing, helping people, and being a loyal friend woven into the episodes - that's why I thought it would be perfect to have on Ian's shoes.

The shoes arrived yesterday while Ian was at school. I couldn't resist opening the package and taking a look! Ruben, the artist who painted Ian's shoes, did not disappoint!


This morning before school, we had Ian open his shoes.



He was amazed! He said "Whoa!" when he saw Finn and Jake on the first shoe, and he was even more excited to see his name on the other shoe! He pointed right to it and said "I-A-N! Ian!" 

He didn't really even want to put them on because he wanted to just hold and look at them. We finally convinced him that if he put them on, he could wear them to school and show his friends in kindergarten.


Thank you, Madison Steiner of Peach's Neet Feet, for doing this awesome thing for kids. Thank you, Ruben Gomez, for taking the time to paint Ian's awesome shoes. Thank you, Trace Brewer, for sponsoring Ian's shoes. Your kindness has put a smile on a little boy's face today, and that little boy's smile puts a smile on his mommy's face, as well as happiness in her heart. Thank you so much!


Tuesday, October 1, 2013

That Look

Today was a beautiful fall day in Wisconsin. It was sunny, warm, and wonderful. Ian went off to school as usual, and Lydia and I headed to the Milwaukee County Zoo for a morning with the animals. About an hour into being there, we came across a large group of special needs kids with their caregivers, obviously on a group outing to the zoo. Most of the group were in wheelchairs, and my best guess is that they had cerebral palsy. Lydia, not at all shy, ran around among them, happily chattering about the lions and the tigers. The parents that were with the group were watching her with smiles, but there was something else there too. I thought to myself "I know that look. I've had that look!"

That look was the what if? look. 

What if my kid could run around the zoo like that little girl? 

What if my kid could talk to me about what what they're seeing and thinking right now? 

Since Ian wasn't with us at the zoo, these parents had no clue that I also belonged to their what if? club. They couldn't know that I've spent many an outing with Ian, watching the other kids with a little envy and thinking what if? 

While I definitely love and accept Ian just the way he is, it is impossible for me to shut out all those little what ifs? - especially when we're someplace where we're surrounded by typical kids doing things, well, typically. 

I can't help but think what if Ian could run and jump like the other boys on the playground? Or what if Ian could run up to me and tell me about his day or something he's thinking? And on and on.

I've had to learn not to let the what ifs? consume me, because that does nothing to help my life or Ian's. I have to concentrate on helping Ian become the best Ian he can be. I don't want Ian to dwell on the what ifs?, so I shouldn't do it either.  

As for today, it was a chance to enjoy a nice day with Lydia. As the younger child, she doesn't usually get the kind of one-on-one attention and alone time with her parents that Ian enjoyed for almost three years. She really had a great time. :)



Sunday, September 29, 2013

Stuff Avalanche!

Well, I have been mostly M.I.A. all summer, but now it is officially fall, and I am officially back.  Here's a run-down of what Ian's been up to:

Horseback Riding - Ian completed six weeks of therapeutic horseback riding over the summer. He was switched to a smaller house, Aero, who he really liked. He's looking forward to seeing Aero again, and taking more lessons, next summer.

Outings - Ian did a lot of traveling this summer! We had a family wedding in Minnesota one weekend, and went to a waterpark in Iowa the next weekend. We spent a day by Lake Michigan in July, and visited the Wisconsin State Fair in August. Ian took it all in stride, and enjoyed all the new experiences. The last week in August, we went to the zoo to celebrate Ian's last week of freedom before starting school!
Checking out Lake Michigan from Daddy's shoulders
Visiting the chicks at Wisconsin State Fair

Riding the train at the zoo
Minor Trauma - Fortunately, there were no major doctor run-ins this summer. Ian saw the pediatrician once because he got a bug bite on his ear that got infected and he needed to get on antibiotics quickly so the infection didn't spread to his shunt. Luckily, the infection didn't spread beyond his ear, which returned to its normal size again in a few days. The week after that cleared up, I noticed a bump above the tooth that he injured on the playground at school last year, and - long story short - he had an infection there too and ended up having the tooth pulled. I won't be anything short of honest - it was horrible, horrible, to watch him scream and cry while they pulled his tooth out, and to sit and hold him, crying and bleeding, for half an hour afterward, but once he settled down he seemed to kind of like his new, holey smile.

And finally...Back to School - September finally came, and with it, the start of kindergarten for Ian. Even though this is his third year in the school district, he started at a new school this year. All of his teachers and most of his therapists are new to him, but it has been really great getting to know them all, and everyone is doing really well with getting to know Ian and his needs.

Ian also started his second season of TOPSoccer in September, and so far, seems pretty happy to be back at it. The rest of our family loves sitting on the bleachers watching him score goals and pump his fist in the air triumphantly. It's a small thing, but it's a really big thing, too.

I've really loved all the time our family has spent together the last few months. It was a lot of traveling, a lot of coordinating and packing, and sometimes a lot of stress, but we were all in it together, figuring it out as we went along. Ian and Lydia are finally both at ages where they can interact with each other more, and even play nicely once in awhile. There is nothing more heart-warming than overhearing the little conversations they have with each other. One of the best things to come out of this summer was that their relationship grew closer. 

Case and point:
Ian's feet are the smaller, bare ones, just FYI :)













Friday, July 26, 2013

Ride 'Em, Ian!

Goodness! The summer is flying by much faster than I thought it would! It seems like just yesterday it was Ian's fifth birthday and the end of his 4K school year. Now he's a week away from being done with six weeks of summer school, and two lessons away from completing his eight week Aqua Pals swim class. Our whole family has been keeping plenty busy!

This week, we finally found time to start horseback riding therapy with Ian. We went to Helping Hands Healing Hooves to see what it was about and have Ian try riding a horse. Everyone there was really nice, and eager to get to know Ian and what we wanted out of riding therapy. Ian has very low tone throughout his body, and also very little core strength, so we hope that riding will improve his balance and help build those core muscles that he is lacking. Since he has scoliosis and a dislocated hip, I had to OK his riding therapy with his orthopedic doctor, as well as his pediatrician. 

Once Ian was introduced to all the humans that would be helping us, they brought out the horse that he would be riding - Whisper. They said she was their most laid back horse - perfect for first timers. They encourage all the kids to help with the horses, so they told Ian they would like him to brush Whisper before putting the saddle on her. He refused at first, and for a second I was worried that he was going to shut this all down before it even started, but once he saw the brush and what they wanted him to do, he was willing to give it a try.

He brushed Whispers belly and her front legs.



Then, he got fitted for a helmet, and went up a ramp to a raised platform where he was lifted onto Whisper. They put a little bar under the saddle for him to hold on to, and someone stood on either side of him to hold him and keep him steady on the horse. We walked out of the barn and onto a dirt course where they had Ian practice telling Whisper "go". They walked him all around the course - over little rails and through cones.


One of his favorite parts was putting rings onto a pole, which really required him to work at keeping his balance, since he had to let go of the handle to hold the rings.


Afterward, he was all smiles. 


Safely back in his wheelchair, he got to feed Whisper treats and pet her nose before saying goodbye. He said that he liked riding and, yes, wanted to do it again. I was so proud of him for being brave and trying something new. 








Tuesday, June 11, 2013

High Five!

Today is Ian's 5th birthday, and I haven't seen him in about five hours. Today also happens to be his second to last day of school, so instead of going off and doing something fun with me, his dad, and sister, he's at school and I am at home, doing normal things like grocery shopping and hanging out laundry. This is the first birthday that I haven't spent with him, and it's a little hard for me. I know he's having fun though - getting to be the birthday boy at school is just the kind of thing he loves. 

Last year around his 4th birthday, I wrote a post about what I was looking forward to for him in the next year. Looking back at it now, I'm quite happy that many of the things I was hoping for - continence, more speech, a bit of weight gain - have come to fruition. It's been a good year, and I'm hopeful that 5 will be even better!

Happy Birthday, Ian!









Monday, June 3, 2013

A Break in the Clouds

It's been a while, I know. 

Honestly, I haven't been in a great place the past month or so. A lot of discouraging things have been happening, and I was letting those things take over my mind and get me down. I gave myself over to my anger, sadness, and disappointment, which made day to day living a bit challenging, much less writing about it. 

But enough about what hasn't been going our way. 

I'm writing today because something awesome happened. It came at the perfect time to lift my spirits and turn my feelings of disappointment into happiness and excitement. Finally, something I wanted to share.

A few months ago, we got a letter from the county saying our family was on the list to receive a grant through the Family Support Program this year. We'd been on the waiting list for a few years, and our number had finally come up. In mid-April we had a home visit with our case manager to discuss Ian's needs, as well as what the grant could cover. Justin and I had narrowed our list down to a ramp for our front door, specialty therapy (such as music or hydro therapy), or a new, bigger dynamic mobile stander - all of which are not covered by our private insurance or Ian's state medicaid. We decided that night that the mobile stander would be the most useful to Ian, and would give us the most bang for the buck - we'd had the previous stander on loan for three and a half years before Ian grew out of it.

Ian's first standing experience at 15 months old.

At the beginning of May, I submitted the paperwork requesting the Rifton Dynamic Stander we wanted, as well as the documentation from Ian's physical therapist outlining why this particular equipment was beneficial to him. I figured that the approval process would take most of the summer, if not all of it, but by the last week of May our Family Support Program case manager called and said our request had been approved and the stander could be ordered! It was almost too good to be true! 

Today, when the kids and I arrived home from Ian's OT appointment, there was a huge box sitting on our front step. I'm not sure how, but somehow I dragged it into the house.


I opened the box, expecting to see a pile of parts that would need to be put together.

Nope! It was fully assembled!

Ian had picked the color - green, of course - so I excitedly told him his new, green stander was here. I took it out of the box and asked him if he wanted to try it out. 

"No" he said.

So, we ate lunch and got ready for PM 4K. After that, I couldn't wait any longer. I had to see him in that new stander!

I strapped him into it, and on the lowest setting he just fit - exactly like when we'd gotten the first stander. His chin was resting right on the top of the chest pad.


Strapped in from the back.
Once he was in it, he took right to it, and started wheeling around the living room. We were almost late to school because he didn't want to get out! 

Now we can finally return the too small stander to Katy's Kloset, which has been loaning it to us for over three and a half years. It makes me happy to think that another little kid will be able to use and benefit from it the way Ian did. The dynamic stander gave him his first taste of mobility - it changed his life. When Ian outgrows this new dynamic stander - hopefully many, many years from now - we will be happily donating it to Katy's Kloset.

Today was a good day when I needed one.

Wednesday, April 17, 2013

A Good Mother

I was planning to save this post for the week of Mother's Day, but recent events have caused me to rethink that plan, and change the post a bit. 

It's always nice to have others tell you that you're a good mother. My own mother tells me all the time - though she may be a little biased. Doctors tell me when we sit through constant and endless appointments. Therapists tell me when we show up for appointments week after week, year after year - even if I'm sick, even if Lydia is sick, sometimes even if Ian is sick. Even if we barley slept the night before, even if it's snowing, we show up. 

If I'm being honest, these things usually do make me feel like a good mother - "Well, I didn't get Ian to eat any fruit or vegetables today, and he smacked his sister in the face for thinking about looking at his iPad, but I drove through a snow storm on three hours of sleep to get him to his therapy appointment, so at least I've got that going for me." Being super-on-top of everything concerning Ian makes me feel a little bit better about the things I can't control - like his low weight or some of his behaviors. It makes me feel like at least I'm doing something

Last week, I watched in shock and disbelief as another special needs mom blogger that I follow unexpectedly lost her son, Gavin. They were in the midst of their daily life - at an appointment for Gavin - and he had a seizure, followed by cardiac arrest. He went into cardiac arrest twice more while in the hospital, and by Friday the doctors declared him brain dead. In the midst of all this, his mom Kate was writing eloquent and heartbreaking updates on her blog and thanking everyone for their thoughts and prayers. She posted tons of pictures of Gavin's last days in the hospital, and wrote about how happy she and her husband were that some of Gavin's organs would be going on to save lives. She made requests that we all do something kind for someone else in honor of Gavin, and that donations be made to their hospital's Child Life department in lieu of flowers. I was - and still am - in awe of her strength.

I can't read her posts or look at the pictures of Gavin without crying, and I don't even know them personally. Their story hits home on many levels for me, and I know I couldn't be that strong if I were in her shoes. 

I've hugged both my kids closer - but especially Ian - this last week. I've welled up and had to push away thoughts of him in that hospital bed. I got scared when I thought he might have a fever when he woke up crying during the night this week. I felt guilty when I got exasperated with him when he wouldn't stop saying "I want iPad" over and over and over after I'd already told him no. 

Most of all, I've reflected on how important it is to take time and appreciate my family. It's easy to get busy and overwhelmed with all of the scheduling and appointments - some days the kids go to bed and I don't even feel like I spent any time with them, even though I was with them all day. There's no way to know when our last day together might be, so it really is important to make every single one count.

Yesterday after school, we came home and had nothing important to do until dinner time. I held Ian in my arms and said a line from Adventure Time that he really likes: "How 'bout I swaddle you up like a sweet baby!" in a funny voice. He'd laugh and yell "No!" but then sign "more" for me to do it again. Lydia caught on to our fun and came over, saying "Sweet baby too!", and I snuggled them both on my lap. I felt like a good mother.

Next time we go to the store we will purchase toys and comfort items to send to the Child Life department in celebration of Gavin - a true superhero.



Wednesday, April 3, 2013

Second Opinion

This week, our family traveled to Chicago to take Ian to see another scoliosis specialist to get a second opinion on his case. We drove down Monday afternoon and checked into a hotel a few miles from the hospital. Our appointment was on Tuesday afternoon, but Tuesday also happened to be Lydia's second birthday, so we wanted to spend the part of the day that we weren't at the hospital doing something fun for her. 

Both kids enjoyed spending Tuesday morning swimming in the hotel pool. We brought along an inflatable basketball hoop, and my cousin who lives in Chicago and his son - who is only a week older than Ian - came by the hotel and swam with us. Ian loved being lifted up to dunk the ball into the hoop, and Lydia couldn't get enough of jumping off the side of the pool into our arms. It was a really great morning.

After lunch, we had a little bit of time before we had to go to the hospital, and we happened upon a little candy store. We took the kids in and Lydia had quite the time looking at all the different candies. She wanted Jaw Breakers, but I found some "baby" gummy bears that were perfect for her. She watched excitedly as I scooped some into a bag and we had it weighed. She carried the bag around for hours after that, telling us all over and over "my candy". She didn't actually eat any of them until four hours later, when we were on our way home.

Lydia with her beloved baby gummy bears.

We arrived at the hospital a little before the appointment. Inside the entrance was a piano that was playing by itself. The keys were even moving while it played, and Ian was totally enthralled by this. We had to promise he could watch the piano on the way out to get him away from it and get to his appointment!

Ian and the "magic" piano.
At the appointment, we waited forever and answered a million questions about Ian that I had already spent hours answering on the hospital forms before the appointment. We were all getting restless, besides being eager to get home, but an hour and a half after our appointment time, we finally saw the doctor. He had reviewed Ian's medical records and the x-rays I had brought with us from our usual hospital, and was of the opinion that we should not be considering surgery to correct Ian's scoliosis yet. He said Ian's curve was doing well with bracing, and we should continue along that path until Ian is between 12 and 15 years old, and then do a spinal fusion surgery to correct the scoliosis. This is a more conservative approach than we received from Ian's orthopedic surgeon back home, who recommended starting Ian on VEPTR surgeries as early as this year.  

I left the appointment a little disappointed that this doctor didn't offer us some great, new, third option that we didn't already know about. Both paths to correcting Ian's scoliosis have pros and cons. Waiting and doing spinal fusion means Ian will have to wear a plastic brace on his torso for another eight to ten years, but it is a one surgery procedure. VEPTR eliminates the need for the brace, but after the initial placement surgery Ian would need to have day surgery every 6 to 8 months to lengthen the rod. This would need to be continued until he is done with puberty, so depending on when he starts it, it could be eight to ten years of surgery for him before it is over. Wearing a plastic torso brace can be uncomfortable, inconvenient, and limiting - especially for an older child - but constant surgeries are, well, constant surgery. Neither option is a cake walk.

Bottom line, I'm glad we took the time to see this doctor and get a second opinion for Ian. We still don't know what path we will take, but now at least we can take what this doctor said back to Ian's usual ortho and discuss it with him. We want to do what's best for Ian - to get him the best outcome and give him the best quality of life possible. 

Wednesday, March 27, 2013

Tidbits III


*Cough* We've had a terrible time with sickness lately in our house, which is why I've been slacking with my blogging. Justin had a virus, I have strep throat, and Lydia has pink eye and strep throat. It's been a constant stream of doctor appointments and trips to the pharmacy to get prescriptions filled recently. Ian is the only one who has not been sick at all, and I'm hoping it stays that way because next week is his spring break and I'd hate for him to spend it sick!

Here are a few things that have been going on while we've been under the weather:

The other week, there was an assembly at Ian's school that featured a wheelchair basketball team. I was so excited for Ian to go, and his teachers told me he had a great time! He always gets excited when he sees another wheelchair - he points to it and then points to his own. He got to go out on the court during the presentation and show off his wheelchair along with the wheelchair players. I think it's so cool that the school (the physical education department specifically) chose to have an assembly that featured a non-mainstream sport team. Not only did it show Ian that playing on a basketball team is possible in a wheelchair, but it shows the rest of the kids in the school that it's possible, and awesome!

Ian with some of the wheelchair basketball players and the coach.

Ian's EC teacher Ms. Niki, who has been with him the last two school years, is leaving after this week to have a baby. She will be on maternity leave the rest of the school year. I've tried explaining this to Ian to prepare him for her absence, but I'm worried that he will take her not being there very hard. He likes her a lot - so much that he even asks for her in the middle of the night when he wakes up. She is great with him and has taught him so much over the last two years. I'm expecting that he might have a rough week or two after he returns from spring break to find her gone.

Ian and Ms. Niki on Twin Day in the SpongeBob shirts they made.


One more school thing: Ian got a sheet sent home this week detailing the academic progress he's made in 4K so far this year. Justin and I were very pleased to see how well he is doing on his numbers, letters, and shapes!



Ok, now an awesome product that I discovered a few weeks ago. It's called a Reflo cup, and it helped us finally transition Ian off of a sippy cup at home. 

Reflo cup with valve inserted.
Ian's low strength and dexterity in his fingers and hands has made it hard for him to lift an open cup and tip it so only a little liquid comes out. The Reflo cup has a plastic valve that gets pushed down into the cup and only lets a small amount of liquid out at a time. Ian can concentrate on lifting the cup and bringing it to his mouth, and doesn't have to worry about the liquid sloshing out all over his face. He was hesitant to try the cup at first, but now he seems to like it.

Ian drinking from his Reflo cup.
Ian still using sippy cups has been something that has been bothering me for a while now. Ian is on the cusp of being five, and that is just too old to be drinking from a sippy cup. I'm so glad I found the Reflo cup - I will definitely be ordering more for both kids to use!

Hopefully our illnesses end quickly because we have a very busy spring break week coming up! Happy Easter, everyone! 






Thursday, March 7, 2013

School iPad

Ian got another reason to love school this week. The school board approved an Assisted Technology Request for Ian to have his own personal iPad at school, and it was delivered this week.



He also got a flexible arm that holds the iPad for him and clamps to his wheelchair. It's really great, and he's very proud of it. Now, instead of sharing the teacher's iPad with the rest of the class, Ian has his own just for him that can be programmed for his specific needs. Ian's teachers and therapists are spending a lot of time setting his iPad up for him - downloading all the necessary apps, setting up controls for him, and programming his Proloquo2go speech app so it has everything he needs to be able to say in it. They even put the names and pictures of all of his classmates in it so he can say all of their names!

This iPad will follow Ian from grade to grade as he goes through school. He will be able to use it in school to make writing activities easier, and some day for homework assignments as well. It's a great tool for Ian and I'm so grateful that Ian's teachers suggested this for him, and that the school board approved the funding.





Thursday, February 21, 2013

The Power of Play-Doh

It's always a great day when I can write a post about Ian making progress in some area. The past few weeks have been very busy for us - Ian had a long day at Spina Bifida Clinic last week, and his IEP at school this week. It feels like a lot of balls are in the air right now, which has a tendency to cause me a lot of anxiety, but the good work he's done this week is a real bright spot.

I've really been trying to put an emphasis on building Ian's finger strength and dexterity lately. Both are important for writing, as well as other skills I would want him to learn some day - namely cathing himself. Ian has been in occupational therapy since he was around a year old, and now he gets OT both at school and at another outpatient facility that I bring him to each week. He's always had an aversion to touching things that look "weird" to him - he would never touch any of the koosh balls or putty that the therapists would want him to squeeze to build hand and finger strength. 

This week, Ian really allowed himself to venture out of his comfort zone and worked with some play-doh for both me and his OT at school. One of his teachers at school had just given him a little tub of play-doh for Valentine's Day - even in his favorite color, white - and I convinced him to squeeze it in his hand before he played with his iPad. He started out with one squeeze per hand, but every time he wanted to play a different game on the iPad, I would make him squeeze one more time per hand, and he got up to six squeezes per hand by the end of the night. He wasn't putting up a lot of resistance to it, and it was getting easier and easier each time he did it. I told him I was proud of him for trying it and working hard, and he was proud of himself too.

Squeezing with lefty...

and righty.
I triumphantly e-mailed Ian's school OT and told her how Ian had squeezed the play-doh at home, and she gave me other play-doh activities to try with him to get those fingers moving and strong. Later that day, it was her turn to e-mail me and excitedly tell me about the awesome job Ian was doing with her theraputty! And, of course, there are pictures for proof:

Pulling it apart to find small, hidden objects.

Pulling to make a smile. :)

Rolling it into a snake.
Before this week, Ian would only tentatively poke play-doh or putty with one finger. This is big progress for him, even though it seems like a very small thing. Think of all the things you do in a day that you need to individually move your fingers to accomplish - all the things you grasp between your first finger and your thumb. Ian knows what his fingers need to do, he just has trouble making them do it. We're all hoping this breakthrough with play-doh is a sign he's turning a corner. 




Thursday, January 31, 2013

Three Little Words Reprise

A little over a year ago, I wrote a post about Ian's slow speech progress. At the time, he said only 3 words. Now, a year later, he has more words than I can keep track of! He's come so far over the past twelve months, thanks mostly to a combination of school, speech therapy, and a little sister entering the picture. I was thinking about all the different things he can say now that he couldn't just last year, and what motivators were in place to make him say a particular word or phrase.

1. The Love - I believe these words were motivated by Ian's love for particular people. He saw how happy it made Justin and I that he could say "mom" and "dad" to us, and he worked hard to make others in his life happy by saying their names too. He now says Dia (his sister, Lydia), Bapa (grandpa), Gaga (grandma), Noah (his best friend in 4K), Niki (his EC teacher), Em and Al (aunts Emily and Alyssa). There's still plenty of family and friends to learn - hopefully by next year he will be able to say many more!

2. The Want - There's no better motivator than just plain wanting something. Though whining, pointing, and signing had been working for the most part, Ian has learned to say the words that can express what he really wants. I believe the first one was "Bobby", which is shorthand for SpongeBob. After that he said "iPad" and "DS" (as in Nintendo DS) - his two most-requested objects. Next, we started working on asking for things with a full sentence, and last week he mastered saying "I want _______" and then signing "please". That was a big break-though.

3. The Mimic - Ian is both lucky and unlucky that his sister is a little jabber-jaw. She started talking early, and once she started, she never stopped. She overtook him in the speech department easily, but the upside is that he is now copying some words she says. If Justin or I leave the room, Lydia usually follows us, yelling "Wait! Mommy! Wait! Daddy!" After a few weeks of her doing this, Ian suddenly said "wait" one night as I was walking out of his room at bedtime. Now he tells me to "wait" almost daily. His words for his grandparents (bapa and gaga) were actually coined by Lydia, and he copied her in saying them.
A brief moment of brother/sister love
4. The Academic - This category is probably the most important - words/sounds Ian is trying really hard to say for school. He can say almost all the letters, (C, L, Q, W, and Z still allude him) and almost all the letter sounds. He can say the numbers one, two, eight, nine, and ten, (the others he still shows on his fingers) and the color white. He still uses Proloquo2go a lot at school, but he's got a lot of these basic speech concepts down, and I just know more will follow.

The best part of all is that Ian is becoming more conversational with his speech. He says "What?" when you say his name, and "I do" or "I do not" when you ask him something. My hands-down favorite though, is "you too". When I drop him off at school in the morning I say "Have a good day" and he says "You too". I say "I love you" and he says "You too. Bye Mommy." It's not the full "I love you" that I've been waiting to hear for almost 5 years, but for now it's close enough, and I cherish it every time he says it.

Here is a little video of him showing off his words:

video