8 Weeks

Our boring week has ended and after tomorrow hopefully we will have another boring week that follows. But tomorrow we have a few things going on and one of them is Joaquin's xenopax infusion. There is no reason to think that tomorrow will no go smoothly. We have no PICC line to deal with and so right away the nurse will arrange for someone to come down the day hospital (where he has the infusion done) to place an IV line. We are scheduled to be there at 10 am, but we need to have blood drawn before. The good thing is that it's taking place in the morning and so hopefully it won't be a long ordeal. And thankfully it's not too early in the morning cause I'm no early bird - and neither is Joaquin

I was thinking how having a week where there were no blood draws and no doctors and no hospitals makes me anxious for a little thing like tomorrow. It's like I was so steeled from the transplant, the hospitalization, the constant blood draws and nurses that when we finally got a break my tolerance for it all went back up. It could easily change to where we are in the hospital being monitored, but hopefully it won't.

Lately at the RMH there have been a few families dealing with organ rejection and that's scary for me but not an indication of how well Joaquin will or will not do. It's a very real possibility. Lots of families deal with rejection, and some don't. We were warned that these first 100 days, the first year even, has the potential to be rocky. I think the reason that it's been on my mind is because it's all I really see at the RMH. I only meet the families who are going through rejection, so it feels like everyone is going through rejection. And I know that there are plenty of organ transplanted kids out there doing just great... I just don't meet them.

The company who supplies Joaquin's formula finally delivered it on Thursday. Along with the formula they were supposed to also deliver some protein powder to add to it, but it didn't arrive. I called the company and they overlooked that on the prescription that I faxed them, so they had to send it out separate again. Friday night into Saturday was our first try at the new formula. The way they worked it out was that he would receive 1000mL during the night and then it was up to us to give him the other 1000mL during the day by either having him drink it or bolous it - meaning put it down the ng tube. The new formula upsets his tummy a little bit because he woke up Saturday morning and threw up and was a little gassy. This morning he work up a little upset and again threw up and farted a lot. I'm hoping that he's just adjusting to the new formula. During the day I make a mixture of water and juice - yesterday it was organic apple and grape juice and today it was an Odwalla Berries Go-Mega drink. I'm thinking about doing some fresh squeezed fruit juices or getting a drink that Trader Joe's carries called "Carrots and Greens." I feel now that since Joaquin is getting to an age where he is taking in more solid foods and not just the formula the doctors prescribe, I want to get as much whole foods in him, like lots of fruits and vegetables. My hope is that by starting him out with healthy, whole foods that it will be a life pattern and may help his kidney last longer and stay stronger.

This weekend we made a much needed trip to the beach. The weather was sunny and warm - people were wearing their bathing suits and I wished that I had brought mine so that I could have jumped in the ocean. Joaquin just wanted to walk up and down the beach. He liked when Chris would wait just a second before the tide was about to reach Joaquin and then pick him up. Joaquin liked the feel of the sand on his toes and his little feet smacking against the watery sand as he walked along was so cute. He is getting better and better at walking every day.

After the beach we went to a local fish restaurant where we pigged out on fresh fish as we sat ocean-side. The day had been clear and beautiful but just as night fell the fog came in from the horizon and blanketed the whole coast. Joaquin enjoyed the clam chowder and sourdough bread. It was a beautiful day followed by good food.

We are nearing the end of October - today we have been living in Palo Alto for two months. Tomorrow we are heading into the 8th week post-transplant - and soon we will be two months post- transplant. It's amazing how fast it's gone and how much we've gone through - and I don't mean that in a bad way - just how much we've done and what we've been through and where we are at now. I was thinking today about how just a little while ago we were doing daily labs. And now we are looking forward to going home.