Therapy and More Therapy

The doctors appointments have slowed down a bit right now as we have checked out about everything there is to check out and gotten second opinions where needed.  The specialists all feel that in their particular area that there isn't anything more that we can do and all is being done that can be done.

Therapy is one of those things that is being done.  We are doing OT once a week now and PT is every other week.  Speech therapy has its own schedule since its with the State program.  A lot of why we are doing therapy is for two main issues, his abnormal bones and the congenital hypotonia.  The following is a diagram that I found that really shows how a floppy baby or low tone baby looks.  It is very common with many syndromes that you have probably heard of such as, Downs Syndrome, Fragile X, Prader Willi Syndrome, etc.

It has been explained to me several ways by different people because frankly I still get confused.  Is this long term?  Will he always need therapy?  Etc.  Basically, here is the way I got it.  They don't know what exactly is causing Thomas' hypotonia and until they know the exact cause, they don't know if it will ever improve or not.  So like everything else with Thomas, he was born this way and we don't know why and we don't know what the future holds.  But again, we are on the right track by getting the genetic testing done.  We will wait and see.

An update on Thomas and all of our therapy, which I can't say enough good things about our therapist and the group at Children's Healthcare of Atlanta at Mt. Zion Rehab.  Everyone knows us when we come in and especially our Thomas.  He is loved by all of the therapists and staff there.  He is up to par right now on his Gross Motor Skills.  Our PT, Monica, is thrilled with the progress and described how Thomas is such a different child now than when he first came in.  Our objective was to build up his muscles and get his trunk (core), arms and legs stronger to help compensate for the low muscle tone.  He has done this and worked very well on his body awareness.  Having strong muscles is much different than have low muscle tone and I am still learning the difference and what this means.  He still falls a lot and that is still do the hypotonia as far as we can tell.  It could also be do to lack of depth perception.  We just won't know until he is older and can tell us what he is experiencing.  The good news is he doesn't know any different, so its not a problem for him. He has become the master at catching himself and even impresses the therapists.  With our PT we are still working on stretches for his neck to build those muscles up around his fragile bones and extend his range of motion.  This too he has gotten quite good at!!  His range has increased a lot and he is looking up more and turning his head farther than before.  Thomas has also developed a bulge of muscle in his lower back that has been created from compensating for his scoliosis.  We are working on deep massages to help ease the tension and tightness that this may be causing in his back.  He seems to like it as when you start rubbing, he will lean back into it.  You cannot use the same pressure on the muscles surrounding his neck though, his pain tolerance in that area is much less.  The PT has said that we can probably lessen the amount of sessions that we are having at this time as he is on target per gross motor skills and we have great support at home to continue the progression.  We will always need to have PT for him and will need to check in with her on a regular basis.  The bottom line, we will never be cleared.  There will be times when he might compensate wrong, stop using certain muscles and they weaken or once he gets into school there may be things that he cannot do or do as well as the others that we will need to address.  But overall, the investment we have made into PT is paying off right now and we have an active two year old who is quite capable.

OT is really another chapter on its own and is very much related to speech therapy in its focus and direction.  I will blog again more about his OT, but I did want to mention that he is doing well.  We still have a lot of work ahead of us in his fine motor skills.  I did learn today that Thomas is very much a muscle seeking sensory child.  I may be saying that wrong, but that is what I got from it today.  All children seek sensory, some more, some less.  Thomas is on the high end of this which causes him to be extremely active and constantly climbing up on things and doing things above and beyond.  As a mother of three boys and wanting Thomas to be a normal toddler, I embraced his activeness and love to watch him climb, learn and explore.  Today though, the therapist explained to me what he is actually trying to get out of it all and how I can help him.  It was really amazing!!  She explained how if I can hold him in certain ways and really get into his muscles to activate the nerves in that area. This may actually give him what he needs and be a bit less of a daredevil and be more content on a normal level of activity for a two year old.  Deep pressure therapy is really a topic all on its own as well.  I have lots of different techniques I was researching tonight that I can try with him.  I will update you when we start seeing what we can do. 

I am willing to try it as we are already doing massages on his neck and back and was doing the deep pressure hold for his temper fits.  On a side note, his temper fits or head beatings have reduce which has been a huge relief for this mama.

So, there we are.  I will write another blog on his OT and ST.  But I just wanted to explain in more detail where we were with Thomas.  We are averaging about three appointments a week still and most of that is focused on therapy.  I don't mind it now as it has become normal routine.  Its a little different now being part of our summer, but we will make it work.

On the days we aren't running up town, we are trying to relax in our pool!!

Natalie Grant: "Your Great Name"

This has been my song these last couple of days.  What a powerful song to sing at the top of your lungs in your kitchen or your mini van?!?  To think that the enemy must leave just at the mention of your name, "Jesus".  Yes, he must leave for he is not wanted here.  My God is with me and he is more powerful and stronger than you.  Listen and absorb how mighty and powerful our God is and how much he loves you my sweet friend.  Life is hard, its complicated, people are mean for no reason, they will lie to you, they will hurt you and they will make you feel worthless and abandoned.  Friend, while you are down and on your knees remember to look up.  Your Father has his arms open to you and wants to hold you. . . . . .let him.

 Verse 1: Lost are saved; find their way; at the sound of your great name  
All condemned; feel no shame, at the sound of your great name  
Every fear; has no place; at the sound of your great name  
The enemy; he has to leave; at the sound of your great name
 
Chorus: Jesus, Worthy is the Lamb that was slain for us, Son of God and Man You are high and lifted up; that all the world will praise your great name
 
Verse 2: All the weak; find their strength; at the sound of your great name  
Hungry souls; receive grace; at the sound of your great name 
The fatherless; they find their rest; at the sound of your great name  
Sick are healed; and the dead are raised; at the sound of your great name
 
Chorus: Jesus, Worthy is the Lamb that was slain for us, Son of God and Man You are high and lifted up; that all the world will praise your great name
 
Bridge: Redeemer, My Healer, Almighty My savior, Defender, You are My King