Missing Home..

Today was Jason's 32nd birthday and I could not be missing him more! Lately he has been carrying around the weight of the world on his shoulders.. trying to be both father and step-in mother to the girls once again. He does so well at both. They were all here this weekend but he and I hardly saw each other between taking turns watching over Sam and the girls. I was so thankful for a spot at the Ron McD house for those couple days because we did share a few meals and the girls got to see us all together except for Samuel.

Samuel pulled his ND tube out once again today shortly after we moved over to the floor from the PICU. This is always an ordeal and x rays have to be done to make sure it is in the right place. This time it was not so they had to do it twice. This child could light up a dark room with all the radiation he has had in his little life.

I was blessed with a few sweet visitors praying for our little man today. I know they probably think I look like I was run over earlier in the day but getting no sleep can do a number on you in here. They were a huge pick-up for my mood and if they are reading I hope they know how thankful I am for their friendship and prayers.

I really am trying hard to stay upbeat and not get bent out of joint over the steps back we seem to be taking. I need to keep rekindling my hope and not get so wrapped up in the future prognosis of things. Sam is doing really well on many levels today and those are the celebrations I have to keep lifting up. He has been very sweet today and was almost laughing as I rolled him in his baby barrito style swaddling (intended to stop the grabbing of the tubes). He had been mad because they put splints on his arms and wrapped him so tight to avoid another tube pulling incident. He found it funny when I added in the whooshing and buzzing sound effects as we rolled and worked on some PT moves.. I think he is just tired of laying in bed with nothing to do. So the restlessness is a good change from the little boy I brought in here gasping for every breath and struggling with GI pain. Dare I hope that after the GJ is placed we might get to leave?

But I am left scared of what taking him home will mean this time as it is no little deal taking him home with the picc line..he is a baby and will eventually get those grabby hands around this line..and with his history of not clotting well I fear him pulling it out and bleeding out or some scarey scenerio. They said we might be able to come back for the mediport to be placed outpatient but I don't know when I want to put him through yet another procedure. I keep thinking about how now the GJ tube will require continuous feeds most all the time instead of the part time or bolus gtube feeds that he gets currently. The intestines can't handle full feeds in short periods. But what I am left wondering is if our tummy was so slow digesting the food , will the intestines be any faster? I am not 100% sure this is going to be a quick fix..for now I have to pray this just buys us more options.

The last part of the day I had an opportunity to speak with the mother of a child with a rare disease known as canavans. It was wonderful to speak with her about how she approached her son's complex medical issues and concerns of insurance and coverage for home nursing. It seems like she had to battle the insurance companies before she finally got the help she needed for him. Her son has defied the odds and is doing well in his twenties when they never thought he would live past the toddler years. She seemed to hold onto to her faith and hope and that is what I fully intend to do for Samuel.

Here is a pic of sofia driving her sister wild..she is always working hard to drive her big sister nuts.

Lastly..my mom had her birthday this weekend and she has been away for about a month visiting my sister and her 4 munchkins (while hubby is still deployed) down in Tampa. They had a great Christmas and New Years. I miss her very much. It is difficult since other than the serious fall out of loosing portions of her face to the cancer and then one eye, our biggest hurdle is communication as she is now deaf. She handles this quite well but I hate not being able to call her and and just chat. I am adding some Christmas pics of the girls and home below as I am missing them and home so much..