Things are picking up a bit

I am so thankful and so happy in this moment.  Thomas has brought such joy to my life.  It is a pleasure to take him with me places and see other people be drawn to him with a smile.  As my friend has said, there is just something about him.  He is so stinking cute and has such a personality about him, yet he is very content and low maintenance from a child standpoint.  He has no idea he is different any way and no one treats him so.  I love all of my boys so deeply, each one of them holding a special place in my heart and sharing such rich qualities.  The bonds we are building are those for a lifetime.

James 1:17 "Every good gift and every perfect gift is from above"

  

It was a nice break but the therapist want to work on Thomas in an effort to help him function better in regards to his core.  His core is quite weak and it shows mostly when its time to sit and eat.  His body is working so hard to compensate for its weakness that he fatigues quickly and leaves meal time.  He also finds alternate ways to play and is usually leaning or propping against something for support.  We had our PT appointment today as suggested by our ST/Feeding therapist.  We focused a lot on his core which includes his stomach and back.  She showed me lots of alternate ways for me to work with him on strengthening those muscles. He had a tough workout today and was so tired when we were done.  A lot of the exercises I should be doing as well. So, we will focus on that for a while.  We will be going to PT every week until he begins to show some real improvement.  We should also start with the feeding therapist soon as well, still waiting on insurance to say 'go ahead'.  Fun!!

We have our 2.5 year check up next week with our pediatrician.  We have a few minor things I know we need to discuss but other than that I think we are doing good.

Thank you always, for your continued love, prayers and support.  I would not be as content as I am today with our past, present and possible future if it weren't for you.

We all thank  you.

Enjoying the Moment.

Right now, this moment.  It's nice.  Our therapy has been cut back since he is doing so well in OT and PT and we are waiting on insurance to begin the feeding therapy.  We are all caught up with our appointments until the end of this month when Thomas will have his two and half year check up.  So, right now I am breathing.  I am able to give my attention to the other boys just a little bit more and let Thomas run and play and just be.  We do all we can to keep things 'normal' around here.  It is much easier to do when our schedule is less hectic.  I also must mention that Tyler is doing well also.  We have changed his medicine, had him in occupational therapy and behavior therapy and together its working.  He is more peaceful and happy
and doing great!

Thomas is doing phenomenal and wins the hearts of all who meet him!  I am so proud of him and all that he has already overcome.  My continual prayer is that this will always be the case!  

Refocus.  I am planning on focusing in me a little bit during this lull.  Get myself back together per se because who knows how long this moment will last.  I am reworking some Bible Studies that I felt needed to speak to me a little more.  Reviewing our finances and updating our budget.  Refinancing the house.  Refocusing. 

Let Go.  I am giving myself a break and letting go of some things that I have found not to be as important.  Some things I have let go were big and were hard and made me very sad.  Some things are small and don't seem like much but add up quickly.  Through this I am finding that even through that sadness it has been the right choice for me.  I want to live and enjoy my boys and my life not just survive.  Through these things God is teaching me if I am willing to listen.

Pick myself back up.  My writing isn't as good as it use to be because I am not reading like I once was.  I am not working out like I once was.  Luckily, I just had a complete physical and everything came back great.  I am lucky that I still healthy and doing well right now.  Seems like most of the time I am barely hanging on.  But I want to do better. . better for me and better for my family.  Back to reading, back to eating healthy, back to working out and back to a little me time.


The only thing left on my to do list that I continue to put off is getting a courtesy draw for Robert and I for Baylor University and Madison, WI.  I know this NEEDS to get done but everyone keeps telling me 'no'.  So, I have to stop and take a break and then go at it again.

Kind of random tonight, but I feel at peace and enjoyed watching all three boys tonight play outside at the soccer fields.  We have come a long way in the past months and I am so happy and so proud of my family.

“From the fullness of his grace we have all received one blessing after another.” John 1:16 (NIV)

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.