William Otto

William Otto
Playing catch with Daddy!

Tuesday, March 29, 2011

Yeah for Chicken!

We got Wills biopsy results from his last biopsy on March 17th and his eosinophil levels were down! Yeah!!! So this means that we get to try a new food with him and keep giving him wheat. We chose to go with chicken this time around. As I type, I have chicken bones from the whole chicken we bought at the food co-op and Matt 8 cutted on the stove to make a broth for Will. I also have all of the fat and skin in a frying pan cooking so I can have oil to use to cook his food in as well. We have learned to be creative with how we cook for sure lately. I am thinking of trying to make some sort of 'chicken and grits' type thing with the chicken oil, chicken and wheat. So far he has the wheat made into a cereal and into 'cookies' (which are actually like wheat crackers I made with wheat and his formula) and some pieces of ground chicken. We are working on getting him to swallow the food now. He is doing better, but it is an ongoing process for sure. Since he is 20 months old and just getting to eat, he missed all of the natural times that kids learn to eat and is a bit behind on all of that. Right now he keeps most of his food in his cheek instead of swallowing it. April 26th is his next biopsy. That one will tell us if he can continue to eat chicken or not. I am praying he will. Then we will get to add another food and continue on from there. If not, we will have to discontinue chicken, wait six weeks for his system to clear so to speak and start over with something else. We have another showing on our house tomorrow morning. I am glad that I keep a pretty clean house, otherwise these short notices for house showings would drive me bonkers for sure. I just have to normal clean downstairs, put away some laundry that I am doing right now, vaccuum upstairs, and clean out one upstairs closet to give stuff to Goodwill. That I was going to do today anyway. Have a great day! We are going to the Chili Challenge at NMU for dinner tonight. So excited that I don't have to cook!!!

Monday, March 14, 2011

And we are off...

So, Will and I are headed to DeVos Childrens Hospital today. He has appointments tomorrow and Wednesday and then an endoscopy with biopsies on Thursday. Please keep your fingers and toes crossed that we can keep wheat as something he can eat and even add another food! That would be awesome! As of yet, we haven't found anything he can eat, so I would love it if things started turning around.
I am kind of excited to see the new Childrens Hospital. It just opened in January. I have heard great things about it too.
I am even more excited to be able to see my bestie Jill while we are down there. She is going to be coming with Tucker to hang out with Will and I on Wednesday. Yeah!!!!
I get the quarterly newsletter from APFED and it had some interesting information in it regarding EoE (which is the new abbreviation for EE by the way). Only 50/100,000 people have EoE. Of those 50 people, not very many of them have to have a feeding tube. So, you know what that means? Will is all kinds of extra special. Pair the rarity of him having EoE, and him having a severe case with him having congenital sub glottic stenosis (which is like less than 1% of the poplulation) and you have an exceptionally unique, super strong, wonderful boy! God, I love that kid....thank you for trusting his care to me.
So, we are off. Please pray for safe travel and for some good news for Will. Thanks everyone!

Friday, March 4, 2011

Another Day

Today is shaping up to be a pretty normal day so far. I love normal days. Sometimes it feels as if they are too far and few between.
Will and I brought Myshka to the groomers to get a much needed trim and cleaning. She gets so pampered while she is there. She always has a bow in her hair when I pick her up. So cute!
Then we went to Early On playgroup. Wills occupational and physical therapist met us there. Today Will worked on rolling from his back to his stomach so he can stand up from there. We had a scary night a few weeks ago where Will vomited while laying on his back in bed and then stopped breathing because he couldn't roll over to clear his airway. Matt flipped him over and smacked his back to get him going again.
Then we went to the bank and got the account set up for all of the fundraising I am doing. Now people can do online registration and donations through the website I set up for the 5K coming up on May 21st. The website is www.5kforeosinophillicdisorders.weebly.com Just in case anyone wants to check it out.
Will is napping now, then we are headed into town to pay the mortgage, pick up his formula that was just ordered, and hang out until we have to pick up Matt to go look at a house. We keep being told that there are a few people interested in ours, so we have started to look for a new one for us just in case. I hope this gets all sorted out soon. It is a pain to pack up Will and Myshka everytime we have a showing. Not to mention keeping the house 'showing ready'.
Yeah for a normal day!!

Tuesday, March 1, 2011


Today the Yeah! title is for more than one reason...so YEAH!! First, last night was Wills first successful night with his feeding pump running. Other times the tubing has become disconnected from his button and then the pump is just pumping formula right into his bed. No good. We found a good solution though and he is still sleeping at 8:30! So yeah!

Second, I just found out this morning that Will was accepted into this program called Inspiration Through Art. It is an awesome program that connects photographers with families dealing with children that are sick. The photgrapher that is in the program and closest to you comes and does a photography session for free. I am so excited! I love photos and now we can have some professional ones, something we haven't had the oppurtunity to have done yet.

This last week has just been amazing. It restores my faith to finally be getting good news after having only bad for so long.