Tears for Seth...

Okay so I have not updated this blog in a long time. I apologize dear Millers! In thinking why I have not posted I have come to understand why. It's because I am frustrated. I am so frustrated that he is not home yet. That every time the Millers post things on Facebook saying that things are going well a day or two later something horrible happens again. Why has there seemed to be no improvement? Why hasn't Heavenly Father healed this little guy yet? How long must he and his family suffer? Why can't he be whole yet? Why can't at least things be progressing steadily in some way even if just a little way?! I know Heavenly Father has His own timing and that His will may be different that ours but yet I still find myself just so frustrated. Can you imagine being Jamie and Andrew? Jamie goes to the hospital every single day with little Grace in tow. That is until now. Grace is no longer allowed in the hospital at all due to flu season! Poor Grace and Joseph will no longer be able to see their brother except through pictures! And now Jamie and Andrew will have to figure out what to do with their other 2 children when they want to go see little Seth. I just feel so helpless. I want to help them so badly! I want to somehow ease their pain and suffering! I have no idea how though. Unfortunately we don't have the money to give much in that way. I know money doesn't fix anything really but it can help ease the burden of the gas they have to use every single day to make their long journeys to the hospital. So if any readers have any more to give maybe together we can try to at least lighten that burden together? And of course we will all continue to pray and pray some more for these amazing people who are going through such a struggle right now.

I talked to Jamie this last week. She was raving at how strong and brave little Seth is. How he truly is a little warrior. There are things that he goes through that any of us would cry and cry through and yet he is so strong and still. She talked about how he is her little social butterfly. He really craves people's attention and hates to be alone. I just cry thinking about how he has to be alone at all. If he were able to be home he would never be alone. But in hospitals he cannot have complete attention all day long due to there being other patients around.

As many of you know Seth was transferred to a different hospital this past week as well. Jamie and Andrew just felt that the doctors where he was were just no longer able to offer any help to Seth. He needed a fresh new perspective from new doctors. Which it sounds like he has received. They have hope as new treatments and ideas are coming about with his new care.

Below are Jamie Miller's thoughts for today. When I talked to her this week she was feeling overwhelmed and frustrated for sure. With the eosinophilic gastroenteritis he will not be able to eat what other people eat probably ever in his life. So trick or treating is out...Thanksgiving turkey and pies is out...cookies out. How do you have 1 kid that is this way and allow the other kids to be kids? So once Seth is home the journey will have only begun for this little Warrior and his ever so patient and loving family.

So today they found that Seth pretty much has no immunoglobulin G. Basically he has no immune system. So that's under autoimmune disorder, but so is the eosinophilic gastroenteritis. Don't know if they're related or not.. I don't know. But that's why he can't get rid of this enterobacter--because he doesn't have the stuff to get rid of it. It's amazing he hasn't been sick--that's why they never thought he had an immune problem. They actually gave him the pneumoccocol immunization like, 2 or 3 weeks ago, and that's pretty much one of the worst things you can give them with this disorder. So it's a MIRACLE he did not get pneumonia from it! So yesterday they needed all this blood to do testing. I don't know how many times they stuck him.. at least 3. They finally had to get blood from an artery because all of his veins are shot. Afterwards I just held him and cried. Today I didn't go to the hospital because the kids aren't allowed there anymore. We're at a different hospital (you knew we transferred, right?), and kids can't go anymore since flu season is starting. So they needed to start an IV to put the immunoglobulin G in his system, but every time they'd get it in, his vein would blow. So they tried 3 times, then Andrew told them to hydrate him some more. So they pumped him full of fluids, then on the second time after that they got it in. And I'm so glad I wasn't there, because it breaks my heart watching them do that to him. So, I'm SOOO glad that these doctors are getting to the bottom of things, and they are SO proactive. But this is going on so long. We'll be lucky to get him home before Christmas, at this point. Yesterday he was nauseous for some reason, so he kept dry heaving, but there's nothing in his stomach.. once he was able to actually vomit stomach acid. All the rest of the times he couldn't actually get anything out. The nurse kept pulling a bunch of acid out of his stomach through his feeding tube. He was so miserable, and then I thought they'd leave him alone for a while, but then today they took more blood, and then needed to get that IV in. Ugh, I just hate this.