Wednesday, April 27, 2011

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.

Wednesday, April 13, 2011

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).
video


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

Tuesday, April 5, 2011

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 :)

Friday, April 1, 2011

Happy Birthday to Me!

Today is my birthday...26 years old :).  Carter woke me up by showing me his new discovery of how to get himself out of bed.  Needless to say that when he started fussing this morning I was more than a little shocked to see him in his doorway instead of in bed.  He followed that up by being a complete sweetie and motioning to hold Henry.
 This was closely followed by Carter shutting himself in Henry's room (aka the playroom) and this is what I found...



He dumped the trashcan of dirty diapers into Henry's crib and put his toys in the trashcan.  Oh my goodness I love how my kids keep me on my toes!

I definitely did not think my life would be the way it is right now...but I couldn't be happier!  I'm so glad that God's plans are so much more amazing than mine.  I have an amazing husband, two wonderful kids (after being told we would have trouble ever having one), a house, a dog, and I'm a stay-at-home mom--those of you that knew me back when know what an amazing heart transformation THAT has been :).

I was reminiscing over the last 10 years of my life over at my other blog...crunchyokie.blogspot.com.  You should check it out!