GI Appointment

So it has been a while since I have posted. We have gone to the urgent care again with Seth last Monday and he got a new steroid and an inhaler with a chamber. He does okay with it but he really hates it. He has been hitting his head a lot lately and only on one side and the tantrums that he has been throwing are CRAZY so we have an appointment with his neurologist on May 6th so maybe we will get a few things answered. 

Last Wednesday we had an appointment with our GI doctor and they decided that my precious little muffin needs a g-tube. When we got there they weighed him and he gained 2 POUNDS in 3 months!!! That is HUGE and awesome...but it did not solve the g-tube issue because he still has trouble with the whole swallowing/aspirating. The doctor thinking that the pneumonia eventually will take him and would rather get the g-tube and use that as a safety net.  We have an appointment with the surgeon on May 11th and we also need to do another barium swallow study. It will tell us what he is able to handle and what we will have to put in the g-tube. We know for sure all his meds will have to go into the g-tube but we are not sure about his bottles. I would LOVE to still be able to feed him and only use the g-tube for meds and if he gets sicks just some extra fluids. So if you think of it you could pray that we would still be able to feed him his pediasure through the bottle and not a g-tube. 

This whole g-tube has been really hard on me. I really do not want him to have to go through this and another surgery. Seth does not deserve this...he deserves way better than this. Watching him in feeding therapy and how much he really does not enjoy eating food and just how hard it is for him to just even figure it out and swallow the food and breathe at the same time. I hate what CMV did it him. I know that I should not think this way but sometimes my thoughts just go there. I wish I could take away all that he has to go through. I would get a g-tube and never swallow food again so that my little boy could. 

Seth has been really cranky lately and normally he is such a happy boy. I hate seeing him not happy and that something is bothering him. We have an appointment with his neurologist May 6th so praying that we might get some answers as to what is going on.

We had a great Easter and I need to get the pictures off my camera and onto my computer so the next post will be Easter and family fun. I hope that everyone had an amazing Easter!


Not a word was heard at the tomb that day.
Just shuffling of soldiers feet as they guarded the grave.
One day, two days, three days had past.
Could it be that Jesus breathed his last?

Could it be that his Father had forsaken him?
Turned his back on his son, dispising our sin.
Oh hell seemed to whisper, "Just forget it, He's dead."
Then the Father looked down to his son and he said..

Arise, My love.
Arise, My love.
The grave no longer has a hold on you
No more death sting
No more suffering love.

The Earth trembled and the tomb began to shake, and like lightening from Heaven
The stone was rolled away. 
And this dead man the guards they all stood there in fright
As the power of love displayed its might
And suddenly a melody filled the air
Riding wings of wind, it was everywhere
The words of creation had been longing to hear.
The sweet sound of victory, so loud and clear.

Arise, my love. 
Arise, my love.
The grave no longer has a hold on you.
No more death sting no more suffering

Sin, where are your shackles?
Death, where is your sting?
Hell; has been defeated. The grave will not hold, the king.

Arise, my love.
Arise, my love.