As you can imagine, it has been a really loooong week. Avery is still in the hospital and will be there until the end of next week. He just got out of surgery which was supposed to start at 1pm today and did not start until 5pm and got over at 9pm. He had a port (central line) placed in his chest for IV access b/c he will not lots of fluids and labs drawn and it avoids him chronically getting stuck with needles. He will hopefully be starting his j tube feedings tonight and if all goes well he will not need TPN which is IV nutrition that he has been getting all week. If he has to go back to TPN then he will go home with this which is really tough.

If he tolerates his feeds then he will be starting a very specialized diet called a ketogenic diet which is basically a really severe Atkins diet that requires hospitalization b/c it is really tough and totally opposite to how the body works. This is said to help kids with his disease. Let's just pray it does. My head has just been spinning. It is all so much. I feel like I am living in another world. My food is spoiled in the fridge, clothes need washing, house needs curtains and TLC. Since we have been moved into the new house I have been in the hospital for most of that time. I just cannot believe that this is my life sometimes.

More than anything in the world, you just want your kids to be happy and healthy and this is not the case with our family. My heart just breaks for my boys and my daughter who is always left with someone else b/c one of her brothers is in the hospital. I just wonder how I got here sometimes. This is just me venting b/c I am so exhausted and overwhelmed. We are going to be behind financially b/c I have had to take so much time out of work. I have not even really thought that out b/c I am still in hospital mode. I am sure when we are out then I will be crying about it.

On a big plus to all this madness. Avery seems sooo much happier and more playful b/c he is getting proper nutrition. So this tells me it is all worth it. I am enjoying this little baby this is just bursting before my eyes. His head control seems to be better. He is so much more alert and just a fiesty little handsome man. I just am so in love with him. I really think that good things are in store for him once we get things straighten out for him. I cannot wait to post fun and new things about our family. I feel all I post about is sadness. No more. Let's think positive and it will happen. Thanks for reading. Kinda my therapy online. May sound crazy but my thoughts are at times.