Bad couple of days

The past couple of days have been kinda rough for Zach. He hasn't been sleeping well, really fussy and clingy during most of the day and still has this horrible nasal congestion. The congestion is chronic but it has been horribly worse over the past week. He is on clariton 2 tablets a day for that but I can tell no difference.

I am wondering if he is fussy due to his legs cramping. He does have a low ferritin level, which is stored iron and he is supposed to be getting a 3 month iron treatment but we can't find a way to get the iron. The oral kinds have sucrose in them so they are a no. The Neuro doc is checking on other ways to get iron for him.

We are grateful

There are no words to express our genuinely thankful we are to everyone that has made donations to help with Zachary. We are so in love with this little boy and couldn't imagine our lives without him. He is so sweet and precious and as soon as you meet him you realize how incredibly special he is. God truly works miracles, we never imagined people would care this much or help us in this manner. We are humbled by everyone's generousity.

Thank you!!

Not enough calories

Zach is needing around 400 more calories a day than what his body will tolerate him getting, so he is literally starving himself. His stomach will not digest the formula like it is supposed to so we can't add anymore to his feeds. We have tried to add in some different things to up his calories but his body would not tolerate them either. We are at a standstill, he wants to eat, he is so hungry but he can't. He just can't eat.

He goes back to the surgeon and GI on February 7, and right now the plan is probably going to be to replace his g-tube with a g/j tube to see if that will help. In that route his stomach is bypassed with the tube and his formula goes directly into his small intestines.

Today...

Today I found an amazing church, I have been wanting to start going to church for a while. The last time I attended church was with my great grandmother when I was probably 10 years old. I have always been a religious person but several events in my life have tested my faith and so I slowly drifted away. Now with so many things going wrong with my baby boy, I am finding I need some clarity in my life. I have prayed more in the last year than I think I have ever prayed.
So today I attended Daystar Christian Fellowship and it was wonderful. My oldest son, Lucas also went and loved his classroom. Everyone was extremely friendly and so willing to show me around. I believe I have found a wonderful place to help me find meaning in this crazy place in my life. http://www.daystagso.org/

Tubey Koozies

The official launch of Tubeykoozies.com

Handmade by me, tube covers...any tube, g/j/peg/tpn...they are cute, very useful and washable. Check it out!!

Sick again!

Zach is sick again today with a 103 fever and throwing up everything. He isn't drinking his bottles so we are slowly pumping him pedialyte and hoping that stays down. He just went to the hospital a couple of weeks ago for dehydration and vomiting so hopefully this doesn't end up the same.

Steroid! More Steroids!

So we started swallowed pulmicort a couple of days before Christmas and it didn't take long to find out it wasn't a good match for Zach. He went "crazy" and started acting very unlike himself. We have always been so lucky to have a happy baby that no matter what was going on.
I checked with the allergist  after about a week and half of a very unhappy baby and he changed the medicine to swallowed flovent. So far, so good on that....we have only been on it for a couple of days so we will see....

Hello New Year!

Well, this is the beginning of a new year and hopefully the beginning of new hope and new findings for Zachary. This marks the end to the hardest year in our lives so far. Zachary got sick a year ago and everyone thought by now, he would be better or at least getting better. But the truth is, we are no where closer to him being better than we were a year ago when everything started. Zach has been through three surgeries, five hospital stays and too many tests to count. He only weighs two pounds more than he did a year ago...he is not able to eat any foods without having adverse reactions and has to have the most of his nutrition through a feeding tube in his stomach. It has been a whirlwind of emotions and ups and downs this year. We found out he has two very rare disorders that the Doctors know very little about. I have spent everyday of this past year worrying about what tomorrow brings for my baby boy, and what the future holds for our family. I am hoping this next year will bring a lot answers to our questions and more understanding of the disorders that Zachary has. So goodbye 2010 and hello to a New Year full of hope and wonder!!