What is normal?

As a parent, it is exciting to watch your child develop from the moment they are born.  We look forward to when they can hold their own head up.  When they can rollover.  When they can sit up by themselves.  When they go from crawling to cruising to walking.  These are commonly referred to as milestones and every child hits these milestones at their own pace.   My oldest daughter was ahead of the curve and hit her milestones early.  Rachel hit her milestones at an average rate. Then came Levi.  Having gone through this with 2 other children, we had created expectations on when Levi would hit his milestones.  So as time started to pass and we didn’t see the development that we expected, naturally we began to be concerned.  At about 6 months, the pediatrician told us not to worry.  All kids develop at their own pace and that Levi was just a late bloomer. At 8 months, he still was unable to fully hold his head up, roll over or sit up.  At the next doctor visit the pediatrician described his muscle tone as “floppy”.  I believe the technical term is hypotonia. We were sent to see a neurologist.  After an MRI, it was confirmed that Levi had a neurological disorder.

Over the course of the next year, my wife and I spent a lot of time trying to determine the cause of Levi’s issue.  What we knew was that the myelin in his brain wasn’t filling in correctly.  We didn’t know why.  We spent hours upon hours researching his issue trying to come up with a diagnosis as if we had spent years in medical school.  By the way, the internet can be a very scary place when researching medical issues. After numerous test and multiple MRI’s, the doctors couldn’t come up with a cause.  We have come to accept this and in the end it doesn’t really change the way Levi would be treated anyway.

During this same period, I spent a lot of time in a state of either anger or sadness about Levi’s condition.  Everywhere I would go I would compare him to other children his age and wondered if Levi would ever be a “normal” child.  This was a natural feeling, right? It was then when I turned my focus from the cause of Levi’s issue to how to cope.  In my internet travels, I came across a lot of great information and blogs from parents who have already experienced the same challenges I was now facing.  One blog in particular really changed my outlook on things when she asked one simple question.  What is normal? I didn’t have to read any further for things to click. Who defines what normal is? I took a moment to reflect on this.  Levi is a very happy child with a great personality.  He loves to laugh and be tickled.  He loves to play, especially outside.  He has favorite foods and favorite toys.  He likes to harass his sisters.  He likes to knock things down, especially if it was built by his sisters.  He loves to swim.  In fact he swims better than both of his sisters.  I don’t know about you, but that all sounds pretty “normal” to me. 

That moment was a life altering experience for me. Sure Levi has some physical challenges but he is a very “normal” little boy.  We know that eventually he will get to where he is meant to be.  Our job as parents is to try to make that journey easier.  The milestones will come in time.  The important thing is to not focus on what he can or can’t do but just enjoy the precious moments that enrich our life. In the end they just want to be loved and treated “normal”. Lesson learned.

The week in review

 

Levi had a fantastic week.  It started off with an OT evaluation that confirms he is making excellent progress.  He was evaluated at a 23 month year old skill set.  He can now stack up to 5 blocks which is up from when I last participated in his OT session a few months ago.  He is also able to draw but doesn’t yet imitate straight lines or circles.  This is great progress.  Sometime I feel like I under estimate his abilities which I think is natural.  The other day at therapy he was asked to sort colors.  The task was to take these colored bears and place them in the same color bucket.  Before anyone could show him what to do, he was doing it!  If anybody would have asked me if he could sort colors I would have said no.  I just had never seen him do it. I think from now on I will just assume he CAN do these things.

Also this week Levi had a chance to hang out for a few minutes in Rachel’s VPK class.  When he arrived they were all sitting in a circle.  Levi immediately went to join them.  He even tried to sit like them with his legs straight out.  This is really difficult for him as he doesn’t have the balance and it is tough for him to keep himself up with his arms.  That didn’t stop him from trying though. When we see him do these little things we just know he is going to do very well in school. The social aspect which he desperately needs and the opportunity to mimic the other children will do wonders for him.

Levi finished his week at his swim lesson.  While he was waiting, he wanted me to hold him by his hands so he could walk around.  I noticed for the first time that his feet were straight and not turning in as they normally do.  I don’t know if this is from the new braces, if his legs are getting stronger or both.  Either way this is fantastic progress.  Like I have said before, this is the year Levi will walk!  What a great way to end the week.

New Braces!

On Tuesday, Levi received a new pair of braces. They were recommended by the physical therapist as a way to keep him from walking on his toes.  This is a pretty common occurrence once the child’s legs become stronger.  His old braces just went above his ankle.  As you can see from the photo above, these braces will go about half way up his leg.

Day one with the new braces wasn’t without its challenges.  First of all, they are difficult to get on.  In order for them to be effective, his heel has to be completely flat.  He makes this difficult because he tends to fight us a little bit when we try and put them on.

Secondly, he keeps taking the right one off.  It is obvious that he doesn’t like them and they are probably a little uncomfortable.  Hopefully he will get use to them quickly.

Lastly, we figured out that we can no longer easily get him in or out of a restaurant high chair.  Since the braces come up much higher than the other ones, his legs don’t flex enough to get him into the right position.  So we need to either take the braces off or we are going to have to start putting him in a booster chair.  Sitting in a chair isn’t a problem for him.  It’s sitting in a chair for the entire restaurant experience.  If anyone has any suggestions, I am all ears.

Needless to say, Tuesday was a very frustrating day. Wednesday was more of the same. We were hoping to get some advice from the physical therapist but of course, she is out of town this week.

Caroline decided to speak with the occupational therapist at UCP during his Thursday appointment.  She said we were in luck because a representative from West Coast Brace (where we purchased the braces) was on site.  This gentleman, who has worked for WCB for quite some time, was happy to take a look at Levi. 

He made some great suggestions.  First, he will be sending us a couple of pairs of these specially made knit socks. They will come up higher on his legs and act as a second skin.  He said WCB doesn’t usually push these as they are expensive. He is going to send us a couple of pairs for free.  He also recommended that we have an ankle strap added to the brace as his ankle pulls out when he walks. Finally, the top of Levi’s foot gets red from wearing the braces.  He told us to check and see if the redness goes away after 15 minutes once the braces are removed.  If it does, then he is fine.  If the redness doesn’t go away, it is creating a pressure point and we will need to look at other alternatives.  We felt very luck and blessed that the representative from WCB was on site today.  We really want these new braces to work out.

 In all the drama surrounding the braces, Levi also received his first pair of Benix Shorts. These neoprene shorts are designed to keep his hips turned outward.  They really have the same purpose as the Thera Togs he was currently using.  One main difference is that these go on the outside of the diaper.  (You know where I am going with this.)  Also they seem a little easier to take on and off.  My only concern is that they are hotter and bulkier.  Hopefully he will get comfortable with these quickly as well.

I’m sure this isn’t the last time we will change things up.  Hopefully this process will become easier with each new experience.

School Days

In a few short weeks Levi will be turning 3.  How the time has flown by!  What that means for him is that he will be leaving the Early Steps program and entering the school system.

Levi will be attending a special class at Shady Hills Elementary with 13 other children who have special needs.  We are told that Levi will be the only one in the class with a physical disability.

On Friday we went down to visit the school and meet with everyone involved.  Represented were the physical, occupational, and speech therapist, the classroom teacher, somebody from audio, the special needs coordinator and finally a physical therapy intern.  He qualifies for a lot.

Everybody took a turn explaining their role in the process. The physical therapist explained the possibility of bringing in a gait trainer so he can walk freely around the classroom while keeping his hands free.  In the end, we are not sure if this will be counter productive to what he is doing now so we will need to keep an eye on him. She was also putting a list of equipment they are going to need for him in the classroom.  This will include a wheelchair in case there is an emergency and they have to wheel him out.  I am glad that they are thinking about those types of things.

The occupational therapist explained that her focus is going to be on the things that will aid him in the educational process.  Feeding himself, dressing himself and continuing to work on developing the use of his hands.

We didn’t get to spend much time with the speech therapist  but we briefly discussed how we would like to work on his communication either through signs or verbalization.  We will continue to work through his eating issues at UCP.

Finally it was time to hear from the classroom teacher.  She thought it best for us to experience the classroom first hand. So Levi grabbed his walker and followed us in.  There were 7 boys in class today.  I was excited to see that.  I so desperately want him to interact with other boys.  Once in the classroom, Levi made himself right at home.  He immediately made his way to the circle where the boys were sitting and pulled a book off the shelf.  Caroline and I instantly knew that he was going to do well in this environment. 

Although I am sure the first day of school is going to make us a little nervous, we know this is a great opportunity for Levi.  We have told ourselves many times that he needs a more socially interactive environment.  The one thing that Levi does well is adapt so we know he is going to do great.  Next up, the dreaded IEP process.  I am hopping this isn’t as bad as everyone says it is.  Wish us luck.

A busy week.

This week began with a trip to the zoo on New Years day.  We thought it would be nice to do something fun with the kids before jumping back into the regular routine.  The kids love going to the zoo.  The girls enjoy the rides and Levi loves the animals.  It was fun trying to watch him get to the very large boa constrictor through the glass. He is fearless!  Here are some pics from the day at the zoo.

Thursday was back to the grind.  Levi had speech, physical and occupational therapy.  It’s a pretty tough day for him but he did very well.

Friday was swimming.  He started off a little slow but it turned out to be a great lesson.  Today Levi was able to turn over on his back to take a breath.  His instructor was so excited for him that she almost cried.  Turning over on his back is really hard for him but now we know he can do it.  We look forward to seeing him do this again at his next lesson.

After swimming we drove down to Winter Park to see Nana and visit the Orlando Science Center.  It was a great afternoon and everyone enjoyed themselves.  Here are some pics from the Science Center.

Levi wasn't as excited as I was about the Star Wars Exhibit.  One day I will share my knowledge of the force with him. What a great way to end the week.

 

Happy New Year!

Happy New Year everyone!  I hope everyone enjoyed the blog for 2012.  I know I just got started but I really do enjoy writing it.

As we enter a new year, I think it is always good to reflect on the previous year.  For Caroline and I it was an emotional roller coaster, which was to be expected. It was also a very busy year for Levi with doctor appointments, therapies and the like.  Overall it was a great year for him.  He accomplished so much and we learned so much more about him. I can probably write pages of everything we learned and everything he accomplished but I thought I would share the highlights.

We learned that Levi’s Myelin issues are not degenerative.  It isn’t getting better but it isn’t getting worse.  That was wonderful news.

He is growing!  I know that this might seem like an odd statement but it was something that we had to monitor throughout 2012.  He was small at birth and at every doctor’s appointment for his height, weight and head size he had measured below the curve.  He wasn’t even on the chart.  One doctor wanted us to consider a feeding tube.  I am happy to say that Levi is now on the chart for all 3 categories.  He is at the bottom, but he is on there!

He is getting stronger.  Levi gets around pretty well with his walker these days. He is able to pull himself up and cruise around the furniture. Levi still has some strength issues in his trunk and neck.  He has learned to compensate for this but it slows his progress.  This is something we will continue to work on in 2013.

We learned a lot more about his eating issues.  His speech therapist continues to work with him and we have seen significant improvement throughout the year.

Levi has an aptitude for swimming.  It’s one of his favorite things to do.  I am glad we found something that he enjoys so much and that is good for him as well.

We learned that his cognitive schools are improving. He has also mastered the iPad.  I know this will become an important piece of technology for him going forward.

Overall, I would have to say Levi had a very good year. Here are some of things we are looking forward to and hopeful for this year.

We are hopeful that Levi will walk on his own.  He has a lot of work to do but I feel like this is the year. In the meantime, I look forward to letting him loose in Target with his walker.  If you see him coming, I would suggest you get out of the way.

Levi will start attending school in February.  The Early Steps program that he has been in ends on his 3^rd birthday. At which point, he enters the school system. Caroline and I have mixed feelings about this. On one hand, we worry about him being there all day and working with the new therapist.  On the other, we think the social interaction will be great for him.  I see a lot of blogging on this topic in the future.

We look forward to seeing Levi continue with his swimming.  He is doing so well and he is so very close to being able to turn over on his back.  Once he can do that, the instructor believes he will be able to swim the full length of the pool. I can’t wait!

We are looking forward to getting Levi off the bottle.  With his eating issues, Levi is still getting a portion of his nutrition through the bottle.  As he continues to work on his eating we are hopeful that we can get him off the bottle entirely this year.

We look forward to Levi communicating more with us this year through signs and verbalization.  We are hoping this is the year he makes a major stride. 

We had a lot to be thankful for in 2012 and so many things to look forward to in 2013.  We know we have to take it one step at a time and celebrate the little things along the way. I want to say thank you to all our family, friends, doctors and therapist for all the support and work that went into making 2012 a great year for Levi.  We couldn’t have done it without you. Happy New Year everyone.  Make it a good one!