It seems as though time is not on our side

Jayden  drawing while we waited for his Drs Appt. he's so smart!

Yesterday was quite a day, to say the least. Jayden had an appointment at Children's Mercy, which recently have been more frequent than ever before. On our 2 hour drive through "lovely Kansas" I was pretty optimistic. "Jayden has been doing so good and I bet he gained at least a pound!" I kept telling myself, yet that is what I tell myself every other week on our 2 hr drive and visit after visit... nothing! Well yesterday something happened and it wasnt what I expected at all.

Jayden lost around 2 ounces and his blood work did not improve from his last visit. He is very Vitamin D  and K deficient despite the Multi Vitamin and the extra vitamin supplements he is given daily, his liver is just not able to absorb anything he needs.. fat, vitamins, nothing! He had to be given a vitamin K shot and we have to double his vitamin D dose daily. We are hoping that this will help his liver absorb at least some of the vitamin. With all of this change his PELD score changed, it went up from a 20 to a 24. Its only been two weeks and already he is climbing up the scale pretty quickly. This was NOT the news I expected or wanted to hear. It seems as though time is not on our side, the Dr thinks Jaydens Liver transplant will be anyday now and that makes me so nervous and scared. All I can do is pray and ask God to keep his healing hands over Jayden. I need to be strong and keep it together for Jayden but Im having a hard time catching my breathe and taking it all in.

This may sound horrible but I feel like I dont know how much more I can handle, i dont know if I am strong enough to get through this or to get Jayden through this... I've never been emotionally strong and sometimes wonder If I can get through another day. Jayden is always the one that keeps me going and smiling but Im having a hard time keeping it together these days.

I took a break from writing to cuddle with my lil guy and as some tears were rolling down my face he looked at me wiped my tears and layed his head on my shoulder, at 14 months old my son has the power to make my worries so small and unimportant; its moments like these that make me smile and have strength to get through whatever Life is throwing my way!

"The things which are impossible with men are possible with God." (Luke 18:27)

God is our Savior and I have faith that he will heal Jayden, He has brought him this far and I know he has special plans for my lil man, my lil angel Jayden!