Friday, October 5, 2012

Always learning. . .

Its been a while since I have written an updated and I have been digesting the latest developments, so I felt it was a good time to share.

First, we did have our appointment last week with our ENT.  I really like his demeanor and attitude.  Instead of us going through another hearing test, he checked the tubes and informed me that the left one is probably not working well and the right one is fine.  We will just watch them this winter knowing they are going to fall out.  Once they are out we will replace them with new ones.  If he were a normal child, we would not put in new tubes so quickly and just watch the fluid levels for a couple of months.  But fluid levels is not he issue with Thomas so that is not a solution and I am so glad that the ENT and me both agree on this issue.  The ENT does not want him to experience any hearing imbalance which is what he has had since birth if the tubes are not in.  So YAY that we have a doctor who gets it, and YAY we have a solution that works at this time.

Once Thomas is a little bit bigger and a little bit older we will look further into his ears to determine the cause of his hearing imbalance.  It is common with children with low tone for their eustation tubes not to work properly and never will on their own. Its also possible that something just didn't develop properly as with many things in Thomas' little body.  Either way, if tubes are the permanent solution, we will look into placing in permanent tubes.  I never knew there was such a thing but there is.  They are a T shape instead of the standard tube so they won't come out.  What is most comforting to me about all of this is this was my first devastating blow when Thomas was first born was that he failed all his hearing test.  My baby couldn't hear me!  Both my husband and I grieved over the thought but then quickly decided it wasn't the end of the world and while we weren't happy we would make the best of it.  So many other things could be wrong and if it was just his hearing then that would be doable.  So, here we are almost two and half years later and hearing is low on our list or worries and is now in fact something that can be completely prevented with the technology we have today.  He has more than made up for the months that he couldn't hear and is thriving.

Onto our new journey. . .we had a feeding evaluation on Tuesday with a therapist.  I really wasn't sure what to expect.  I thought they would look at his mouth and the way he eats to see if the low tone was effecting his muscles in his mouth in a way that limits his eating abilities.  The speech therapist in the past have discussed cheek rubbing, gum stimulation, lip massage, working with his tongue, etc.  All things that I have paid attention too and worked with Thomas occasionally.  To my surprise, he did great with all of those things at the evaluation and that is not his issue.  He does have an issue though and that is what I love about going to a well educated, experienced therapist who knows what to look for and how we can improve.

Eating is so much more than just putting food in your mouth, chewing and swallowing.  Although, those things alone are a lot of work and takes a lot to happen that we don't just think about.  Unless, of course, you have a baby or toddler who has difficulty eating.  Thomas breastfed great and ate well as a baby.  We had no issues that I was aware of and seemed to stay on his own personal growth chart fine.  As he moved into the toddler eating/walking phase there was a dip in weight which is normal as they learn to burn more calories before they catch up with their eating.  Thomas has since then stopped gaining weight and stopped growing in height.  Why?  We don't know.  However, we do know that the dips in his weight are directly related to his caloric intake.  He is not eating enough calories during his eating sessions.  We can supplement with Pediasure and Whole milk, but that isn't the long term answer. We need to address his way of eating so that he can eat comfortably without fatigue.

Thomas' issue is that his core is quite low tone and he is unable to sit upright for long periods of time without support.  Its not extremely noticeable, unless you are looking.  We have noticed that he chooses certain positions over others and often finds way to prop or lean.  When eating, you must have good alignment from your core up to your head in order to allow food to travel properly.  Thomas will sit up for a while but then he will begin to lean over or slide down in his seat.  His body shows fatigue and he gets down.  He also seems to lift his shoulders up when he swallows.  This is why he prefers smooth easy to swallow foods because they can go down so quickly without much effort.  We are going to work towards providing his body the maximum amount of support so that all he has to work on is eating.

Four Main Points:
Stability: your baby’s body should be stable when feeding.
Alignment: the head, neck and body should be lined up / aligned.
Flexed: the body should be in a slightly flexed or ‘curled up’ position.
Comfort: being comfortable is vital

This may proove to be easier in some settings rather than others.  For snack he can walk around or sit in different positions.  The most challenging is when we have family dinner or go out somewhere else.  He currently still sits in a booster seat at home but even that does not provide him enough support that his body isn't working.  I did get her big fat stamp of approval for his feeding schedule and foods that I offer and he eats.

Once the insurance company gets the evaluation and give their stamp of approval, we will begin going to feeding therapy once a week for at least three months.  Together we will work with Thomas and find the best ways for him to eat properly and get the most out of his time at the table.  We are also going to increase his PT visits again to tackle his core and see if we can increase his strength.  We are already focusing on muscle endurance from our last appointment.  Thomas will only walk for so long and then his muscles start showing fatigue and he wants to be carried or ride etc.  As a two year old you expect there still to be some carrying and toting, but Thomas clearly shows quicker fatigue for his age.  Good thing we have a PT for that!

 I wanted to share 1 Corinthians 10:13. You know the one that says God won’t give you more than you can bear … But wait a minute, that’s not really what the Bible says. It says you won’t be tempted beyond what you can bear. In life, you will go through situations that are more than you can bear alone. It’s only in those times that we realize our full dependency on God.

It does not imply that God won’t let you be stressed beyond what you can bear.
Or challenged beyond your ability.
Or pushed beyond your threshold.In reality, God gives you more than you can bear all the time. On purpose.
It’s only when you can’t bear the load that the strength of Christ kicks in…
and He becomes everything you need and more.

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