One Word to Describe My Day

Today on Facebook a relative of mine posted a simple request to write one word on her status that summed up your day.  Since approximately 9:45 this morning...that would be Aspergers.  It really shouldn't have been a surprise, we've seen many of the traits displayed for over a year, but somehow hearing that what you assumed were short term corrections in your child are now long term character traits...well, I don't know how that would be easy for any mom.

Carter has had yet another thing added to his list of diagnoses...genu recurvatum, hypotonia, and now aspergers.  None of these thing define who he is nor do they change his quality of life or life expectancy.  All are relatively mild and have required little change (other than in my head).  And this diagnosis today doesn't change who Carter has always been.  There was no sudden change in his demeanor, behavior, or speech.  No light bulb suddenly went off over his (or my) head.  In fact, the day has been relatively the same as any other day.

Thinking about it can cause me to tear up or panic slightly, but then I remember that this doesn't change who Carter is.  He is NOT his diagnosis.  The only thing, in fact, that this does change is how I handle the frustrations that come up in our day to day lives.  The fits are probably never going to go away completely.  The frustration won't even out when he "grows up".  Instead of looking up "how to potty train your toddler", I'll be searching for "how to potty train your toddler with aspergers".  It will change how we handle what might otherwise be normal developmental frustrations/setbacks.  It will change how I assess his progress (even more than his hypotonia diagnosis).  But he's still the same kid.


In other news, since I'm awful at posting on here for all our wonderful family who follow me...

Carter got glasses!  His left eye was extremely far-sighted.  He looks adorable!  And his language skills have been growing by leaps and bounds since he got the glasses :)

Carter will be fitted this Friday for a shoe insert to help with his ankle/knee pain (from the genu recurvatum and hypotonia).  We're hoping this will help as he complains of his ankles/knees hurting from time to time and no one wants to see a kid in pain :(

Henry is running, tiptoeing everywhere, and LOVES wrestling with his brother...who takes it very well!

Henry is finally starting to really talk to us.  He went from saying a handful of words to trying to construct 2-3 word sentences in just a few weeks!  It's been really amazing to see how much he has to say now that he's learning how.

Henry and Carter are within one size of one another (Henry is in 2T and Carter 3T)...but both are really too skinny for the length they need in pants.  Yet another reason to love summer and shorts weather :)

They boys love popcorn, applesauce, oatmeal, shrimp, and sloppy joes.  They don't like most of the "normal" toddler fare (mac and cheese, sandwiches, grilled cheese, etc.)

Here are some pics from the last few months...enjoy!

Exciting, exciting times :)

What an exciting last few weeks we've had!  James was out of town last week and so it was just me and the boys for about 6 days.  We had fun cuddling, watching Veggie Tales, and just hanging out (one day we didn't even get out of our pj's).  While James was gone, Henry learned how to sit up on his own :)  He'd done it once or twice before, but it became a multiple-times-per-day occurrence as of last week.  And, just for reference, this is about 6 months before Carter did it.

This week, it's been nice to have James home, but we certainly haven't finished our tricks!  Henry cut his 6th tooth :).  Carter has discovered he likes to make nests around the house with towels/blankets/sheets/etc.  And Tuesday night Henry pulled up for the first time ever!  We did get it on cell phone video and I'll try to post it later this week.  Henry has also spent a bit of time on his feet, leaning against our rather large footstool.  He's ventured a few steps and is learning how to sit down (so glad my kids are patient enough to learn this before running...lol).  He and Carter LOVE standing on opposite sides of the foot stool and "talking" back and forth (Henry's becoming quite the motor mouth...though mostly unintelligible chatter) and playing the drums on the foot stool.  It's been so much fun, though they are certainly going to be troublemakers together.

Today I walked into the living room to find that Carter had pulled a carton of cherries out of the trash and Henry was eating them.  It had just happened so he didn't actually get to any pits (THANK GOD!).  Carter can be pretty sneaky and is good at giving Henry things he isn't supposed to have ;)  (Lara Bars, cherries, paper, etc.)

Henry is also eating really well!  The other day we had carrots, pears, and I'm pretty sure he "vacuumed" some of Carter's oatmeal off the floor during breakfast.  He also enjoys bananas (whole, not cut in bits), avocado, blueberries, cherries (peeled, pitted, and cut up), and grapes (also peeled and cut up).  It's been so nice to not have to worry about feeding him purees and he's really enjoyed learning to eat new foods.  We've actually had fewer (read: zero) choking issues than we did with Carter!  Both boys are growing like weeds and it's been fun to watch them grow this summer :)

I am way past due on an update on this site :)  Life has been crazy lately (but that's pretty much become our new normal).  The boys are doing great!  Henry has a total of 5 teeth now (3 on top and 2 on bottom) and is interested in eating everything he can get in his mouth...books, paper, Lara Bars (that Carter gives him or leaves within reach), fruit, etc.  He is also scooting around quite well!  It's not a crawl, more of an army/belly crawl type thing.  But man is he fast!  At his last Dr appointment (about a month ago) he was 29 inches and 20 pounds.  He's doing great and is still just the happiest baby I've ever seen...I love waking up to his smile :)

Carter is also doing great!  I think it's good influence on the part of our friends children, but he has started talking a lot more!  Unfortunately, he is also copying me a lot and I have learned a few things...for instance, I apologize all the time even when it isn't my fault that something happens (something rolls off counter, Carter drops something, someone has an boo-boo) and Carter does it too.  I think I also spend WAY too much time on my phone b/c he is constantly "making calls" into his hand (or shoe, or remote, or truck).

The diet has been going well and Carter has gone from not really growing/gaining at all (dropped from 95th percentile to 25th) to getting back up to a normal weight.  He is now in the 90th percentile!  I attribute this COMPLETELY to our dietary changes.  He is eating so much more and it is healthy stuff...especially healthy fats.  His diet mostly consists of fruits, veggies, and nuts :)

We also moved both boys into the same room a while back.  I was worried it would be a problem, but both boys have actually done much better sleeping when sharing a room.  They sleep through one another fussing, go to sleep quicker, and wake up "talking" to one another (which is a nice change from Carter waking up screaming).  There have been a few instances where I've had to put one of them down for a daytime nap in a different room, but that doesn't even happen once a week.  We are so blessed to have these two amazing little ones in our care!  I am so thankful for my "miracle" babies and so blessed by their amazing hearts and beautiful smiles!

Btw...if you are interested in reading about my struggle with getting pregnant, the first part is up on my other blog.  You can find the post here.

Carter got another hair cut.  It's amazing how much older he looks when his hair is short!

Henry, playing at Oma and Opa's house.

Henry is such a great eater!  Loves bananas, avocados, and beans and rice :)  He also despises being fed...lol.

A lot has been going on in our house and it's keeping us very busy!  But it's been tons of fun.  Yesterday we got the boys signed up for their "Diaper Dolphins" swim class for the summer and for the summer reading program at the library!  It's gonna be a great summer!

Gluten Free...one week down

Thought I would write an update on how we are doing on a gluten free diet and some other things that have been going on lately.  Here is more info on why we are going gluten free.  So far we have seen a bit of an immediate improvement in Carter's attitude and some other physical symptoms of his hypotonia.  One things is that he is falling less.  He used to fall up to 20 or so times a day on a bad day (I mean falling as he's walking not tripping over things--it was worse in shoes) and has bruises all over his knees.  Now he seems to only fall when he is starting to get tired so it's significantly less.  Hopefully this will get better.  Carter has also made huge leaps in speech...stringing two words together without prompting (something he hasn't done before) and his vocabulary seems to be expanding.  He is also actually asking for food...real food!  It used to be a struggle to get him to eat anything that wasn't a cookie (animal cracker/graham cracker) or crackers (goldfish mostly).  Now he is actually asking for things like eggs, beans and rice, and bananas.  He also seems to be overcoming some of his texture issues when eating.  He used to not like anything that was crunchy or hard to bite into and that seems to be getting better.  I can't say for sure that the diet is the reason for this, but it's still exciting!

I have also been doing better.  I think this diet has actually been hardest on me as I am so used to grabbing something quick and easy for lunch and that was usually a sandwich.  Gluten free bread (at least the kind we bought) makes me avoid sandwiches unless neccessary :(  I so very much miss bread....lol.  The good thing is that I had been having constant migraines, at least once a day in the week or two leading up to the diet.  Now that I'm going strong, the migraines are almost completely gone!  I have had migraines since I was in my early teens and so this is a great relief!  I still notice them when I eat sugar, but we have also been limiting that and it helps a lot.  It is so true when people tell you that the more bread and sugar you eat the more you crave.  I used to crave them all the time and now it isn't so bad.  I have also lost 3 pounds so far, mostly I'm sure because we are just eating better food (almost nothing overly processed) and I'm not snacking as much.

In other news, Henry is definitely mobile now!  He is rolling everywher and likes to scoot around in the walker from time to time.  He also loves to bounce in the jumper at James's parents house!  I was telling James the other day that it is almost like being a first time parent because we never went through these "normal" things with Carter.  He was so content to just lay on his back, I think he only rolled twice before he was one and Henry will roll just to reach things on the floor.  It is so fun to watch the boys together.  Carter loves kissing on Henry, as long as Henry keeps his hands to himself.  Henry watches EVERYTHING Carter does and so wants to be with him all the time.

We also moved Carter back into his crib.  He had done well for weeks in his "big boy" bed, but began getting out every 5 minutes at bed and nap times.  He would scream, throw a fit, and run out of his room every time we put him back.  He wouldn't sleep with us laying down with him or with us in the room.  We decided that maybe because of all he has been learning, he was overwhelmed with the thought of making all of these changes and the comfort of his crib might help him to sleep.  I think we were right b/c we have had hardly a problem putting him down since the switch.  Now our biggest issue is getting him to be quiet for a while during nap time as he goes through this transition from two to one nap each day.

I'm excited to see what we have in store in the coming weeks and I'll try to post more pictures soon.

Guitar Lessons

A few days ago, James gave Carter a 3/4 guitar that he used to play.  Carter LOVES it!  He plays several times a day (just picking and strumming the cords) and has started singing to himself :)

This is a video of how I found him today...I took it on my phone so the quality isn't excellent and the sound is really low (I had to crank up my speakers on the computer to hear him).

And here's one of Henry for good measure :)

Carter's Diagnosis

Not many know about the concerns that we (and Carter's doctor) were having that led to the appointment we had yesterday morning with a developmental pediatrician.  I didn't even really think there would be anything wrong.  That maybe he would tell us it was all just because he was born premature and we'd be on our way.  But that's not what happened.

When Carter was born 5 weeks premature, we knew he would always lag behind other kids his age.  He wouldn't hit developmental milestones until 1-2 months after most other kids and we were ok with that.  After all, 1-2 months isn't a huge deal, especially when he gets older.  But them something happened...well, not really one thing but a string of things.  He wasn't rolling over.  Not at 3 months or 5 months or even 7 months.  He did it once or twice and his doctor and I just figured because he was my first and I held him so often that he didn't feel the need to.  I rationalized it away as him just being comfortable on his back and not needing to roll over.  Then he didn't crawl...he never really has.  People said that was normal, some kids just skipped it.  He didn't cruise around the house holding on to things (unless my pants or fingers count), he didn't pull up on things, and he still wasn't crawling.  Around 12-14 months he really started trying to walk, though not the take two steps and fall thing that you hear about...when he walked he just did it.  I think he fell once.

So writing these out together seems like we should have known SOMETHING was up and I think in the back of my mind I always did.  I tried, in vain, not to compare him to the other kids in the church nursery who were so mobile at 9 months they were moved into the 1 year old room when my son, at one, wasn't moving at all.  I almost cried when talking to his doctor at his 1 year appointment and confessing that I had NEVER seen him sit up.  If I put him in a sitting position, he could sustain it, but he never sat up on his own.  This was when she referred me to the developmental pediatrician.  "Just to be safe", "because we think he's been behind on some other things like rolling over", and "because he was premature" were some of the comments she used when telling me to make the appointment.  Her language made me think that while something could be wrong it probably wasn't and I was just overreacting.

Somewhere around 14-15 months I decided that I would try Carter on a gluten free diet.  After two days I saw my son sit up on his own for the first time ever.  I don't know if this was a fluke or not.  Everything I've read since yesterday (which has been quite a bit) says nothing about being able to change anything about his problem with diet.  Nonetheless, sitting up is what I found and I was thrilled!  I then was sure that he was gluten intolerant and that was part of what was causing his delays.  So I worried less and less about his appointment and almost forgot about it completely.

Yesterday morning we woke up early, had breakfast, and headed to the doctors.  They did all the normal things:  height, weight, blood pressure, and head circumference.  Head circumference is a bit of a joke if you've ever seen my son.  His head circumference has always been in the 90% percentile and since he was around 12 months it's been off the chart!  We joke that it's because he's so darn smart ;)

We were ushered into a room and waited for the doctor.  The doctor came in and, while watching Carter play, asked some questions about his medical history.  At one point he threw a tennis ball for him to chase.  5 minutes after entering the room he told me that my son had a condition called Hypotonia...low muscle tone.  It's genetic (probably carried by my husband after a discussion of our childhoods) and there is nothing to really be done about it.  Carter will have this the rest of his life...and will, possibly, be affected by it that long as well.  It is a problem with the basal ganglia in the interior part of the brain.  It doesn't affect how he thinks, just how his body responds physically to external stimuli.  He walks a little funny, he is hesitant, prefers to keep to himself (lately this has meant not wanting to be touched by other kids), and can have balance issues.  This diagnosis explains EVERY SINGLE THING that we have worried about since he was born (even his inability to nurse in NICU and difficulty breast feeding).

The good thing....it isn't a death sentence by any means!  A lot of famous people supposedly (according to the specialist we saw) have has similar problems...people like Michael Phelps and, possibly, Einstein.  Carter also has a mild form of it (from what the doctor could tell) which means that we don't think he has any severe problems (this can be caused by things like muscular dystrophy, tay-sachs  disease, cerebral palsy, etc).  He won't need ongoing physical therapy or anything like that--though it was recommended to get him into a swimming class.

Driving home I had a mixture of relief and worry.  Relief because I know that my son isn't going to be physically disabled or have huge problems growing up, plus we now know what the problem is.  But worry because I don't want him to feel frustrated or be teased or not be able to be a big brother because Henry does things the same time Carter does.  Now all I can do is pray that God will give us the strength and wisdom to carry forward from here on.  To lead us in directions that will benefit Carter and steer away from things that might be frustrating or dangerous for him.  Pray that he will understand that he is just different because God had a plan for him that required this to happen, and that he won't feel like a freak.  We know there will be days in his future that are frustrating and things will come up that he won't be good at, but we also know that we can handle it.  We also know what to watch for in future children including Henry (who so far doesn't seem to show any of the same signs).  And who knows...maybe someday he'll win the Olympics :)