Plans are Complete, My Goals for Ben Listed!

We were up till midnight on Thursday making plans for this week. There were a few unknowns to work around, such as funeral details, but we hammered out most everything else. By Friday afternoon I was feeling calm, and ready to get packing.

I wanted to list my goals for our trip to the clinic. I have a few in mind. I know that last time we did an intensive feeding clinic, I thought Ben would come out eating pizza and regular foods. I did not know that they make the kids go back to purees, and work up from there. I did not realize that Ben's meager eating skills that he had before he was diagnosed with eosinophilic esophagitis were a use or lose set of skills. I now believe that when eating is completely unnatural to a person, they will lose those skills when there is a lengthy interruption, such as what happened when Ben had an NG tube, then G-tube. I don't begrudge the tube, it took him from being a failure to thrive child, to being on the growth charts for the first time in his life. I did celebrate when he finally reached twenty pounds at the age of 19 months. So, my goals for this stay are fairly simple, and I know not to expect him to be eating steak and potatoes when he is done.

1. Be more independent when self-feeding. (less prompts)

2. Eat a soft diet, and no more purees. (more age approriate)

3. Eat a balanced diet.

4. Be able to take in more calories naturally, and less from calorie-boosting.

That is about it. Simple. The hard part is getting him to achieve those goals. After the first couple days at the clinic, Ben will be given their plan of action. Hopefully my goals will match theirs, and they will know how to help Ben progress.

Rollercoaster Day!

Yesterday, when I woke up, I knew I would hear about our stay at the clinic. Every time the phone rang, I ran to pick it up and checked caller ID, but no dice. Still, I had a feeling. On the way home from parent-teacher conference, I stopped at the mailbox, and there it was...the letter. The letter was from the insurance company, and I quickly ripped open the envelope. It stated that they approved our 8 week stay! Woohoo! I was elated, to say the least. I would still need to talk with our contact at the clinic, but that was just what I needed.

This morning, I leaped out of bed early. I was too excited to sleep. My plan was to wait for a few hours to see if the clinic would call (because you know how I love that), and if I didn't get the call, then I would make the call. I waited for a bit, and then couldn't take it anymore. I called at about 10am, left a message, but got a return call surprisingly fast. My contact said that she had gotten confirmation from the insurance company, and was ready to set up a start date. We discussed March 1st, which is coming right up, but I figured I could pull that off, as I need to get help quickly. Then we discussed the transportation issue, and I will need a car there, so then things got complicated. Being an optimist, however, I felt I could work something out, as I am somewhat creative when I have to be.

I had just dropped off my oldest son at the orthodontist when I got a call that my grandma had passed away. I never saw that coming. I knew that she had been battling the flu, which is a mighty war to wage at the age of 92, but I would've never guessed that today she would go. I have mixed feelings about this. I am so very sad, and will miss her, but she is old, and her mind gave out quite a while ago. I am happy that she could graduate peacefully. My grandfather died in 1984, so I'm sure she had a blissful reunion with him. I am blessed with amazing friends and a wonderful home teacher who picked up my son from the ortho and brought him home for me. I went to be with my grandma for a while before the mortuary came to pick her up. It was a sweet time with her and my siblings.

So, it is a really good thing that I am creative. I have a funeral to work in before I leave for the clinic, and not a lot of time between each. We have brainstormed like crazy today, and plans have changed multiple times. So, who knows how it will all work out, but I look forward to starting on March 1st.

Really quickly, thank you in advance to all of my friends who have offered to help, and will help us during this time. 2 months is a very long time for me to leave my post as mother to 5. I am so grateful for my neighbors and my church family. This cannot be done without you.

I Love Surprises...Especially Calls!

I am one of those people who LOVE surprises. One of my favorite things is to know that I have surprised my husband, because sometimes that is difficult to do, and I will go out of my way to make sure I don't spoil things meant to be a surprise for me. A long time ago I peeked into my Christmas gifts under the tree, and I was so disillusioned when I finally got to open the gifts, that I decided to leave all future secrets just that. When I am caught unaware, I treasure the wonderment.

I waited a week and a half for the clinic to verify our benefits, and to put Ben's case together for the insurance company to review. I thought that was a long time, but I really want to get there, so I am not the most patient person right now. On Friday, my hubby suggested that I give the clinic a call to see how things were going, and to make sure Ben's file didn't get overlooked. I considered my options as I ate my breakfast, and decided that I really wanted the clinic to call me, and to just make my day. As I was dreaming of the way I wanted that call to play out, the phone rang. Startled, I grabbed the phone to check the caller ID, and was blown away to see that it was the clinic. Ben's file had just been faxed in to the insurance company. It will be followed by the point of contact for the whole process, and hopefully given the go-ahead! The clinic said it takes an average of about two weeks for the approval (thinking optimistically), and then we can go. I can't believe how quickly it is coming, and I look forward to a new adventure. That call was the amazing surprise I had hoped for.