Jacob & Lili

Jacob & Lili

Wednesday, August 17, 2011

Looking Back or Ahead?

The kids start school next week. Where did this summer go? Jacob will start 2nd grade and Lili 5th. Next week I'll work on how to do Jacob's feeds while he is at school and with Lili, how to get her to eat.

Due to some major hurdles in what is best for Jacob's care, we are now going to take him to the EoE clinic in San Diego. Not sure what is waiting for us there but hopefully it'll be positive and Jacob can continue to get better.

Since going elemental, his personality has changed dramatically. Gone is the moody, grumpy, angry boy who tested my patience to the bitter end. Now we have our little guy who is all his dad's goofy with a splash of my sarcasm. Love hearing him giggle. And secretly love hearing him logically harass his sister. The doubts I had in the beginning of taking him off food are gone. It is obvious that he was in so much pain and his body couldn't handle the bombardment of toxins that it perceived was invading his little body.

My day is now dictated on when his next feed is and how long it will take. There's the 10 minutes of prep, 45-60 minutes of the actual feed, and then the 10 minute unhooking, cleaning, and clearing afterwards. Not an easy task. And try doing it in the car when that stupid pump keeps beeping while your driving. Trying to keep the car going in a straight line while reaching for the backpack, unzipping and looking for the reason why the pump is beeping! Talk about dangerous driving habits. But in the end, it's worth it to see him happy. Missing food but happy.

I realized today that I would more than likely would have started nursing school next month. My year off to take care of Jacob has turned into 2 faster than I can I blink. Sure, I get to play nurse with Jacob and Lili. But it's not the same when it's your own child. When I play the role of nurse but without the income or fellowship. Without the inner satisfaction of it. I'll be 35 soon and my pipe dream (as my brother called it once) of being a nurse and moving to London for a year, I've realized, is just that. A pipe dream. Was this the life I was meant to live? I'm not so sure. But it is the life I have.

I love my kids. I will do anything for them. I just wish I could do anything for myself.

Jacob will have his next scope in mid-September. Lili will be seeing new doctors for her GP. And we will move forward.

Thursday, August 4, 2011

An End to a Beginning

Jacob's elimination diet has come to an end. Although we hoped and prayed that it wouldn't happen, that he would be one of the few that would avoid this last step, it happened. Last week, he was admitted to Lucille Packard's Children's Hospital at Stanford where after much screaming and fighting, he had a NG feeding tube inserted. He is now off all foods. He has to take in a total of 1700mL daily of an elemental formula to survive. The problem is that the formula is disgusting so therefore the need for the feeding tube.

He's been on the elemental formula for a week and we've already noticed a major improvement in his behavior. He's happy and goofy. He's my crazy little boy again. In about 7 weeks we will take him to Cincinnati for his scope. If his eosinophil count is 0 we can begin food trials.

School starts in 2 weeks and I have no idea how we are going to do this. Jacob requires 4 feeds throughout the day, two of which fall during school hours. Not to mention the threat of the NG tube being pulled out. Then there's Lili and her lack of appetite. She will most likely need her ADD medication to concentrate in class but if we give it to her, what little she will eat she won't eat. I'm working on getting her in to see a group of doctors in Belmont who are not only MD's but also take a more holistic approach. Hopefully, they might be able to help her.

My great ambition to raise money for medical research has blossomed. Jacob's Walk for CURED will be held on September 10th. I've already received a number of donations for the raffle. I just need to know how many are walking? It's all very scary. I've never done anything like this on my own. I'm just hoping for a successful event so we can truly tell Jacob that their are people out there who care and who are trying to help him and his friends.

The Maupin's

The Maupin's