"Low muscle tone? But he's so STRONG!"

Before I read up on everything related to Down syndrome, I had always associated "muscle tone" with body builders and the like- exercising and lifting weights to "tone up" your muscles.  I thought of it as maximizing the size and shape of the muscle to achieve a sculpted figure.  I associated it with strength.

Here's your proof it's not about strength!

Evan at 15 months- he would pull himself up like this CONSTANTLY and hold it for several seconds at a time!

Then I had Evan and read everything I could get my hands on, including material pertaining to this low muscle tone phrase that was constantly tossed about, especially in his initial diagnosis at birth.  How on earth can you tell that my newborn baby has *low tone*?  Aren't all newborns *floppy*?  How strong is a newborn baby supposed to be??  To be honest, even after reading about low tone, I honestly couldn't tell any difference between Evan as a newborn and my other two children.  But somehow, the doctors saw it.

Ok, so muscle tone and muscle strength are two different things, but sort of go hand in hand.  I found a wonderful explanation of muscle tone here.  Basically, muscle tone refers to the resting length of a person's muscles.  Children with low tone are described as having loose ligaments and very flexible.  So while a person with low muscle tone may appear more weak than someone with *normal* tone, they can be just as strong; they just have to work harder to achieve the same results.  By building up their muscle strength, they can learn to compensate for the low tone.  Low tone is not curable.

Hypotonia is the official medical diagnosis of low muscle tone.  After reading several sources, I have deduced that in people with Down syndrome, the cause of hypotonia is neurological- pertaining to the connection from the brain to the muscles (if any of this is incorrect, by all means PLEASE let me know!).  It can affect children in different ways- some babies with Down syndrome have a lot of difficulty feeding, especially breastfeeding, since it requires more coordination and strength.  They may leak milk out the sides of their mouth while drinking from the breast or bottle... they may have trouble swallowing and need their liquids thickened so they don't aspirate, or breathe the liquid into their lungs.  Other babies and children may fight constipation since the muscles of the digestive tract are affected.  Of these issues, Evan only struggles with the swallowing.  He did have trouble breastfeeding and wasn't able to draw enough milk out, but has been extremely successful with the bottle since day one.  We thicken his liquids with a gel thickener to a nectar consistency and he does very well with that.

He is the most *regular* baby of all three of my children as far as the diapers are concerned!  I remember stocking up on Stage 1 prunes for the older two when they were on baby food, constantly battling to keep them going.  Evan has never tasted prunes in his life!  I bought them early when we were starting cereal, in anticipation knowing that kids with Ds are more prone to constipation, but Evan has been all about breaking stereotypes from the start. ;)  But like all other children with Down syndrome, he does have gross motor and speech delays.

Low tone is NOT associated with intelligence.  People often assume that just because a child can't speak well or may hold their tongue outside of their mouth- that they just aren't very smart and don't understand what is being spoken to them.  Not true.  And with the tongue protrusion we often see- it is due to the low tone that the tongue tends to fall back in the throat and can obstruct breathing.  Kids simply hold their tongue out so they can breathe easier.  Yes, they often need to *learn* how to keep their tongue inside their mouth while not interfering with breathing.  Something those of us without hypotonia take for granted from birth.

As children grow, the motor delays become more noticeable- they aren't walking until maybe 2 or 3 years old, sometimes later.... they aren't speaking well and have a limited vocabulary at a young age.  This is where Early Intervention plays such a huge role.  Evan began receiving therapies at just 8 weeks old, and it has and continues to make such a huge impact on his development.  He receives speech therapy, occupational therapy (which includes fine motor skills as well as feeding therapy), and physical therapy.

Here's a neat chart which compares milestones achieved by children with and without Down syndrome.  You will notice there is often a very wide range for those with Ds, and this often pertains to the level of low tone in that area of the body.

So, back to the neurological connection.  Kids with Ds have to work *harder* than you or I to achieve many tasks, such as coordinating their legs in order to take steps.  To put things into perspective- think about using your opposite hand of preference to perform a task like writing your name.  It's not that one hand is stronger or weaker than the other, but using your opposite hand, you have to really think about trying to control the movements in your fingers, and the print comes out sloppy.  How about trying to write with your toes?  Hey, some people can do it, but I sure as heck can't!  Someone who has lost their hands may use their toes for tasks we perform with our fingers, and they do it with ease.  Their brain has compensated and the neurological connection is much stronger than ours.  They *taught* themselves how to continue on with these tasks.

Back to Early Intervention.  Kids with Ds need to be *taught* many tasks that their 46-chromosome-carrying counterparts pick up automatically and without as much conscious thought.  Evan's biggest struggle has been in the feeding department when dealing with foods that need to be chewed.  We have slowly moved up from pureed foods to ground foods... to very finely chopped, to diced- larger pieces he is able to mash if they are soft cooked, but he still struggles with tougher meats like pork or steak, and they have to be cut smaller.  He's been making slow progress, but yes, it's been slow going.  He does better if I model for him- making exaggerated chewing motions with my mouth.  He is a great imitator. :)

Hopefully I haven't bored you to tears, and you've learned a few things about low tone.  Please feel free to ask ANY questions you may have and I will do my best to find the answer if I don't know it off the top of my head.  Otherwise, please please leave a comment if you weren't bored too terribly much and took away a thing or two. :) You would totally make my day!

Hey, is that light I see at the end of the tunnel?

Just thought I'd give a little update on all the ongoings here....

Evan's bloodwork came back fine- whew!  He was SUCH the trooper getting his blood drawn, poor thing.  The ladies at our local lab are wonderful, and I was super excited it didn't take them long to find a vein in his little arm... last time we went at 12 months, the phlebotomist had to fish around for it with the needle in his arm... UGH I hate that.  So, pretty much everything was in the "normal" range with his blood levels- a couple things were borderline low but within range or very slightly below, nothing of major concern, and hopefully can be fixed with larger/increased portions of certain foods.  Food allergies came back negative, thyroid was normal range- those were the two biggies.

We made it back to the audiologist on Monday, and after 45 minutes of holding a squirmy little boy who had no interest in keeping a little probe in his ear for any length of time- we were able to get both ears tested and he passed both with flying colors. :)  She was actually quite impressed with how high his readings were.  Yay!

Oh, and if you were wondering about kitty, she required another visit back to the vet yesterday since the new prescription diet was not agreeing with her.... so she's back on the old prescription diet and will be back on her oral meds we have given her in the past (she's been off them for over a year and had no problems until just a couple weeks ago).  Crossing fingers this does the trick!

Going to be working on a post about low muscle tone and what exactly that means.... so stay tuned! ;)

Drop a specialist, pick up a new one...

So we are still getting through the appointment madness... I feel like I'm treading water, just barely keeping my head afloat.... thinking to myself if I can just get through tomorrow I'll be fine.  Yesterday was Evan's well visit with our most wonderful pediatrician- love him to death!  Unfortunately, I left feeling a bit worried, but inside I keep reminding myself that I'm sure everything is OK.

The good news first- dropping a specialist.  Evan has been seeing a gastroenterologist since the wee early months in regards to his reflux.  He's been seeing this doc every three months to follow up, and all has been just fine in that department.  We are confident in Evan's pediatrician to take over his medicine dosage, especially now that we are starting to wean him down a bit- going from two doses a day to just one.  So far so good!  Just when I thought I had one less doctor to worry about....

In my last post I mentioned Evan's weight dipping down some on the growth curve at his 15 month appointment- it took a pretty substantial dip yesterday, too.  In fact, he actually lost a few ounces since his last well visit 3 months ago.  His height is still consistently above the 90th percentile on the growth chart, so his percentage of body fat is really dropping.  Time to revisit the whole skim milk thing- perhaps he really did need more fat after all.  Evan is such a little ball of energy- I know he burns so many calories in a day, since I feel like I do just keeping up with him! (wish my scale agreed...) ;)  So our doc recommended putting him on whole milk for the next three months and see how he does.  I was absolutely in agreement.

Should be easy enough to fatten him up a little with the milk, but my next concern- head circumference.  Evan's little head has been dipping down on the growth curve also- his 15 month measurement was exactly the same as his 12 month measurement, and his 18 month measurement was only slightly bigger- dropping him down lower on the percentage scale.  Kids with DS have a smaller head circumference to begin with, but it is a little concerning when even on the DS chart he is dipping down instead of following the curve.  Our ped. recommended we see a neurologist to get their opinion and make sure nothing is wrong.  I asked if we could go to the Down syndrome clinic at Kennedy Krieger Institute and he was happy with that idea.  Our appointment is set for June 7th.  One thing I've noticed- when we go for Evan's well visits- oftentimes our pediatrician had to re-measure Evan's head after the nurse took the first measurement- since the first measurement was often wrong.  The doc didn't re-measure yesterday (I didn't even think to ask as I was thrown off by the weight loss), so I'm curious how his head will measure at the DS clinic.  I know when we visited the nutritionist- her measurement was always bigger also.  I think the flatter shape of Evan's head makes it more difficult to measure, so we'll see how this all plays out.  Praying we get some reassurance from the clinic in a few weeks.

I have vented my concerns to my awesome DS mama friends at Babycenter, and they have been most reassuring also.  It's just so difficult not to worry when you are referred to a neurologist.  Sure I can fatten my baby up by changing his diet, but what on earth can I do to help his little head?  Is his brain development ok?  His therapists have all been pleased with his progress, so I am doing my best not to let the worry wart inside of me show it's face.

Friday, Evan goes for his blood draw- lots of tests to be run to rule out any food allergies just as precaution before starting some new foods like eggs, and checking his thyroid levels again due to the weight issues.  Praying all results come back fine.

To top it all off, the cat decides to get sick again, so I had her to the vet yesterday also- trying a new prescription diet as opposed to the one she's already been on.... hoping this works.  Gotta take her back next week.  Just when you think you're starting to see the light at the end of the tunnel... sheesh!

So please keep Evan and his little noggin in your thoughts... thanks! :)

Just hold still while I take a look...

So I totally cannot believe Evan is EIGHTEEN months old already!!!!  Where the heck does time go these days??

Now that he's hit the 18 month mark, it's time to revisit a few doctors to be sure all is A-OK.  This week and next week are all about appointments for Evan- various check ups to be sure everything is up to par.  This has been our routine twice a year in addition to all his well baby visits at the pediatrician, and these visits with specialists will slow down to once a year from here on out.  Why so many check ups?  What all needs to be checked?

Here is a link to a checklist I take to all of Evan's well visits with his pediatrician:

http://www.ds-health.com/recordsheet1.htm

Sure, it looks like a lot at first glance, but really it is only a couple extra check ups compared to a "typical" child.

A couple items on the list are done once at birth- karotype (analyzing the chromosomes through a blood test to officially diagnose Down syndrome) and an echocardiogram (ultrasound of the heart) to rule out any congenital heart defects since about half of all babies born with DS are born with a heart defect.  If a defect is found, parents will be referred to a cardiologist to discuss whether or not surgery will be required.  Fortunately, Evan's echo performed in the hospital at birth showed no heart defects.

Since children with Down syndrome are more prone to hearing and vision problems, regular check ups are recommended with an ophthalmologist and an audiologist.  Evan did have a blocked tear duct which required probing in the doctor's office and it has been fine ever since.  All his eye exams have shown that he has normal vision for his age (babies are typically far-sighted for the first couple years).  Justin also sees the eye doc regularly since he was a preemie, and preemies have a higher risk of vision problems also.

Since kids with DS have such small ear canals, this can be troublesome in diagnosing any kind of hearing problem as we have learned with Evan.  He has gone every 6 months for an OAE hearing test, which is the same hearing test performed on all newborns in the hospital before they are discharged.  He passed his test at the hospital, but then at 6 months the machine indicated he failed in one ear.  Neither the audiologist nor I were convinced he really had a hearing problem since his behavior never indicated so- in fact he has always been sensitive to loud noises.  The test could be inaccurate for a few reasons: #1- the child has to be perfectly still for 15-30 seconds for the machine to get an accurate reading.  15-30 seconds is a long time for a baby to hold still in Mommy's lap!  #2- Evan's small ear canals could be too small for the equipment to get an accurate reading.  #3- Evan gets a lot of wax build up in his ears which could also skew results.

I've also learned that the tympanogram results can be incorrect due to his small ear canals.  A tympanogram is used to detect fluid in the ear, which can cause hearing problems also.  Tubes are inserted into the ear drum to drain the fluid- this is quite common in young children regardless of the number of chromosomes they carry.  I took Evan to an ENT after his first failed hearing test for further evaluation, and he was convinced there was fluid in Evan's ears, requiring tubes to be placed.  He couldn't really see into Evan's ears very well since they are so tiny, but relied on the tympanogram results indicating there was fluid.  Since Evan was already scheduled for surgery down at University of Maryland Medical Center, I found an ENT down there who could perform the surgery at the same time so he would only go under anesthesia once.  You can read about that whole fiasco here.  If you didn't read it before, go check it out- such a crazy adventure we had!

Anyway, back to the ENT.... the doctor down at University of MD was not convinced there was fluid in Evan's ears since he couldn't even see in his ears well at all, due to the size as well as the amount of wax.  Our plan of action was for him to clean Evan's ears while under anesthesia; after they were cleaned and he could get a good look, he would determine if there really was fluid and place the tubes then and there.  After surgery, the doctor came out and told me there was no fluid so he didn't place tubes.  We went back to our local ENT for the follow up and he still thought there could be fluid since the tympanogram still indicated so, and he looked into Evan's ears using a microscope- not the typical hand-held instrument used in the doctor's office.  We agreed to first do another hearing test (OAE) and if the results were fine then there would be no plan of action at this point.  If he failed the hearing test we would discuss the tubes again.  Evan passed his test.  Whew!  That was at 12 months.

Evan just had his appointment with the ENT last Monday for his 18 month check.  I was surprised they didn't bother with the tympanogram, but I wasn't going to say anything since I never thought it was accurate on Evan to begin with.  After the doctor quickly tried to peek into Evan's ears with the standard otoscope, he had us move to the room with the big microscope.  He got a good look- Evan was such a trooper laying on the stretcher while I had to lay over him to hold his arms and legs down.  All appeared fine and the doctor didn't see any fluid.  WHEW.  He did recommend bringing Evan back in about 6-8 months to get his ears cleaned out again since he does get a good bit of build up.  Evan's OAE is scheduled for the 16th of the month with the audiologist.  Fingers crossed for a cooperative baby and good results!

Moving down the list.... Thyroid.  Kids with Down syndrome are prone to having thyroid issues, either too high or too low, most common being too low.  You can read more about that here.  This is checked by a simple blood test ordered by our pediatrician.  So far Evan's results have always fallen in the normal range.

Nutrition-  Evan was never referred to a nutritionist until he was about 13 months old while we were transitioning to solid food.  He has been bottle-fed since birth since we struggled with breastfeeding, so I always knew how much breast milk and formula he was consuming.  Growth has NEVER been an issue for Evan as he has always been at the top of the growth charts for Down syndrome.  Transitioning to solids though, is where I had a ton of questions.  Whenever other moms question how much solids vs. how much formula or milk, I ALWAYS recommend going to a nutritionist since we had such a wonderful experience.  I learned SO much and was absolutely amazed at the recommendations given to us.  First, I was assured that Evan had the most excellent diet since he eats such a wide variety of foods. :)  After journaling every single thing he ate and drank for three days, she entered all the information into the computer and gave us a print out of the complete nutritional value for everything combined- all the quantities of vitamins and minerals etc. and then a list of what he was lacking.  The list of what he was lacking was so minimal, and I was completely reassured that he's doing great.

Then came the huge surprise.  At 13 months I had been giving Evan toddler formula since he was having issues with solid foods, particularly with accepting different textures.  I wanted to be sure he was still getting all the nutrition he needed.  Our truly amazing nutritionist, Krista, assured me his quantities of solid foods were perfect and that he could move to SKIM milk.  Say what??  Don't babies always transition to whole milk first?  Don't they need the fat for brain development?  I know I've read from several sources how individuals with Down syndrome have different metabolisms, and don't need the same amount of calories you or I do.  So while the news of skim milk definitely made sense to me, it took me a little while to digest that information and wrap my brain around the whole idea.  Evan transitioned to the milk just fine and is doing great.  His weight gain has slowed a little, but his height has been skyrocketing, so he's definitely growing well.  I'm anxious to see his current stats at his visit with the pediatrician next week.

So there you have it- that's pretty much the extent of Evan's medical ongoings.  While sometimes it may seem overwhelming to schedule all these appointments, it's so reassuring to know he is indeed thriving and doing  just fine.

Batter up!!

Saturday was Justin's first T-ball game... FINALLY!!  Opening Day was supposed to be two weeks ago, but it was rained out along with several of his practices.  Justin has been soooo anxious to start playing, and more importantly- wear his uniform!  Exciting stuff. :)

This is his first season of playing T-ball, and my first experience with the sport as well.  I have to say- T-ball is THE cutest little league sport.  EVER.  Little boys in their little uniforms scrambling after a ball rolling across the field... wearing batting helmets ten sizes too big... Super cute.

Kicking dirt in the field, picking up a sparkley rock instead of paying attention to the game.... it's all good. ;)  

Rules of T-ball: there are no outs and no scores.  Each teammate gets a turn to bat each inning (there are three innings in a game)- they hit the ball and run one base at a time.  When the last batter hits, he brings everyone home and they switch sides.  The fielders still go after the ball and throw it to the first baseman before it returns to the tee.

Justin had the privilege of playing first base in practice Friday night as well as for the first inning.  At practice he became quite frustrated since he wanted to run after the ball instead of stay at the base waiting for someone to throw it to him (they didn't practice throwing it to first base until halfway through practice, so I think he was feeling left out).   By game time on Saturday, he had the routine down.

Even if the batter makes it to base long before the ball is caught, it is still sent to the first baseman for him to tag the base.

After being drilled over and over to STAY at the base and wait for someone else to get the ball, he was a little confused when he was moved to the outfield in the next inning.

In the second inning Justin was last to hit, and he got to bring everyone home. ;)

Doesn't get much cuter than that!  Now where's my peanuts and cracker jacks?