Bittersweet Maturity

My apologies for letting so much time pass between posts!  Josiah is now weighing almost 13 lbs.  This is such a bittersweet milestone of maturity for us.  I am excited over the much anticipated growth, yet at the same time, the realization that my baby is getting bigger is a certain sadness any mom can relate to.  He has found his little feet and grasps at them with his chunky, dimpled little hands.  Just another action that brings a smile to my face and joy to my heart.  With swollen little gums, it is apparent that there are pearly whites ready to pop out in the near future.  Josiah has become more active and alert and engages with his surroundings.  He has already learned a defense against his predators... aka: sissy!  Pulling hair and pinching cheeks is his form of protection to force Emily to retract.  She will tell you "sometimes I love my brother so much, I have to go to time out".  The two certainly have quite the connection, he loves to look at her and "talk" to her and she loves to smother him in kisses and mother him with love.

Granulation tissue is still our biggest issue right now.  We were back at the Dr. Monday after his home care nurse (and girlfriend hehe) suggested that it may be infected.  He is on Bactrim, an antibiotic that is given twice a day.  I felt guilty that he was in pain and there was something I could have done to prevent this.  However, his Dr. assured me that there is nothing further I can administer to him in prevention.  We clean the wound once a day and change the dressing twice a day.  She said it takes a few months for the skin to "toughen up" to the foreign object and the open wound.  We are going to the Children's Hospital this afternoon, where he will have to have it cauterized again.  I am dreading this procedure, yet I know it will make such a positive difference in his healing.  This will be the 2nd time with the silver nitrate. 

a small amount of granulation tissue, around his G-tube.  It has spread out further and now bleeds.

 Friday morning when I was cleaning his site, the tube pulled straight out!  There is a balloon on the inside that hold the tube in place.  It is known to deflate or pop and come out.  There is such a short time frame in getting the piece back in, before the opening starts to close.  We have been warned on all the bad things that can happen from the tube backing out.  Such as the stomach detaching itself from the abdomen and/or the site closing quickly.  I wrapped the site and got him straight to the E.R.  Bringing along my own back up tube and supplies I was prepared for the procedure.  All I needed was a trained professional to insert it.  Once the Dr. began it became clear that the tube was not "sliding in" as expected.  They had to dilate the site to get it in.  There were a lot of tears, screams and blood.  Nothing to numb the pain, except the singing and cuddling of this mama.  After she placed the tube back in she inflated it with air.  I was concerned by this, as it was explained to me that you never inflate with air.  Air can escape and the tube will not be secured in place.  I was told that it should be inflated with water.  I am normally the quiet type and never try to tell someone how to do their job.  When its my child, I become a totally different person!  After contemplation I could not fight back the concerns so I went into the ER physicians office and expressed to her my understandings. It appeared she was almost embarrassed for her misapplication and was very apologetic.  She then ordered one of the nurses to retract the air and administer 5mls of sterile water.  He was back to eating a couple hours later.  He is the most resilient person I have ever known. NOTE: I am now trained in how to insert a new tube myself, at home.

The shot Strong Man was getting every 4 weeks is called Synagis http://www.synagis.com/    As of January 1st, we had some insurance changes like most Americans and now the very important vaccine is not covered under our provider.  To pay for the shot out of pocket, would cost over $1500 every month.  More than our mortgage!  It is not 100% affective against the virus and his Dr. said it would not be worth the cost, when there is nothing that is 100%.  Well, prayer is the only thing I know of that is 100% affective and it is paid for :-)  We will continue to pray for his health and that he remains resistant to the virus and any other bug or infection which would jeopardize his lung function.

Mr. Josiah will be 6 months old on Sunday!!  We have endured so much in the past 8 months (considering the complications during gestation.) It leaves me inspired to look back on where we have come from in such a short time frame!