Check Up with Neurosurgeon

Its always such a shock away from our normal routine when I have to shift things to allow for big appointments such as the one we had today.  Changing and moving things around to make it work for all and the nerves and stress that rise in me as my mind begins racing.  When we are going along without these appointments we seem almost 'normal'.  I use that word very loosely! I normally take things a week at a time, so since Monday my mind, body and spirit has shift to thinking about the appointment.  Praying for wisdom for the doctors and technicians, praying for my son and for myself and of course asking others for prayers as well.  I am continually fighting to ground myself in my Faith and rely on God, its all already there and with him yet the mom in me can't help but be concerned about if our near future is going to change or shift or do we have more time.  That's is basically how I think about it.  There is always the chance of a real miracle that there will never be any major issues in his life, but honestly I don't feel that is realistic given the cards we have been dealt.  Good news, I survived and so did Thomas.

Today was overall a good appointment.  The initial weight wasn't bad but then they wanted his blood pressure and that was the first thing that upset him.  So it was a little high since he was quite upset and they had to hold him.  Then I had to pin him down in an attempt to get his height.  It doesn't seem like either has changed much since our last pediatric appointment in October.  He is still wearing 18 month clothes.

They took x-rays of his neck with extensions.  I swear it is extremely painful for him, not just uncomfortable as it would be for us.  When Thomas eats, gets upset, etc. his shoulders go up.  We don't know why but they do.  He was so distraught as he was pinned down on that cold hard table that they were tight and really up.  He was screaming so hard that not a sound was coming out of his mouth.  The technician is almost yelling at me to pull harder and to get his shoulders out of the shot so that they can get his neck.  UGH!!  I wanted to scream, or cry or just yank my baby and leave.  But, nonetheless, I tried my best to pull my baby's arms and shoulders down while he screamed and fought me.  We had three sets to do like this.  I am not sure who was relieved more when they said they were good enough, him or me.

The doctor came in and did an external check of his back, I will get back to that in a minute and told me that his neck had not changed since the last time in August.  There is still good movement between the two vertebrae in his neck that aren't fused and it has not increased or began to slide.  So his spinal cord is still safe.  *sigh*  He said the fact that he is little and not growing much has helped from not putting more pressure or strain on the growth of his neck or spine.  So, we are stable and are to come back in six months to do this again.

As for his back, well, I requested that he do x-rays of his back to check up on his scoliosis and kyphosis.  The NP did an external check of his spine and the dr did as well.  He suggested we not subject him to more x-rays today that if he had scoliosis it was minor.  OK, so here is my mommy vent!!!!  He has it!  Last March it was at 27 degrees and he showed no kyphosis, now almost a year later he definitely shows kyphosis and the PT suggested another round of x-rays.  The neurosurgeon focuses on his neck and the orthopedic surgeon focuses on his back.  I don't understand why they can't do the same damn thing!!!!!  So, we are do for our follow up with the ortho in February anyway so I suppose that is when we will get the update on his back.  I am also debating on going back to the Shriner hospital for an update but I don't want to duplicate what we are already doing.  I am not sure if I should have pushed more today or not.  My resolution is that once I do have updated x-rays of his back I will send a copy to the neurosurgeon for his records.  If anything is there of concern, at least he will be aware.

My sweet, sweet Thomas.  From the day he was born he has really been special.  I love all of my boys so much and in different ways.  It is hard to explain but people are just drawn to Thomas.  When we are out, people can't help but to comment about him or talk to him or high five him.  I was laughing about it with my friend and she mentioned that he has a special purpose on this earth and he is already starting.  I believe it is true!!  Its amazing to me how someone so young can be so powerful in touching others, but he can.  With Christmas just passing, it makes me think of Mary and Jesus.  Not that I think of myself as Mary or Thomas Jesus at all, but the magnitude of what she must have felt as his mother.  I honestly want to share Thomas with all of you as much as I can.  I want you to experience his funny expressions, his little personality and even his defiance that he shows.  There is so much wrapped up in that little body of his.  I always want him to be lifted up and surrounds my love.  I want him to always be positive, think positive and have Faith in our Heavenly Father.  These I feel are the tools he was born with and the tools that he must always be reminded of through his journey with us.

Thomas was worn out on the way home today.  My sweet boy.

James 1:12

Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life, which [the Lord] has promised to those who love Him.