Its Been Ages!

Okay, it has been awhile since I have updated this. Things have been crazy though. May 21st was the 5K that I organized to raise money for research for Eosinophilic Disorders. That took a lot of time and effort. I don't have the final number in yet, I am still waiting for one more check, but it is looking like we did really well for our first fundraiser! All the money is going to APFED so they can give it to researchers. It is so important to learn as much as possible about these disorders.

I also have the ball rolling on getting Will down to Cincinnati Childrens Hospital. They are the national leaders in treating and researching Eosinophilic Disorders (EGID). I have a bunch of paperwork that I have to get in to them along with all of his medical records. Then once they have everything they need, we will schedule his appointment. They are scheduling for September right now. It is a week long appointment with many different specialists. We still really like DeVos Childrens Hospital. We just want to be sure he is getting the newest and best care possible.

On to other news, Matts Dad just came up for a visit this weekend. It is so nice for Matt to get to see him. We only get to see him once a year since he is in Colorado now. We all went golfing yesterday and walked around downtown today before he had to leave.

Oh, I almost forgot. Will was also featured in a local news story on food allergies. Here is the link if you want to check him out in all of his cuteness! http://www.uppermichiganssource.com/news/story.aspx?id=615719

Okay, I promise to start keeping this updated more often now. Talk to you all later!

Spring!!

I have to start this post out by saying how excited I am that if FINALLY feels like Spring outside! I put together Wills wagon the other day and he loves going for walks in it. I am so excited to get outside more often with him. Okay, now with that out of the way....

Things have been pretty par for the course around here lately. We are still working on getting Will to actually swallow his food. He takes bites of it and then stores it in his cheek instead of swallowing it. I am not sure on how to get him to swallow it, but we keep working on it. Any ideas?

We bought him a whole organic chicken from the food co-op. He can't have the kind from the regular grocery since it is packaged with other things like salt. Matt eight cut it and then I boiled down the bones and the neck to make a broth. I used the fat and skin to make cooking oil to use for him as well. So far we have had the best luck at getting him to eat wheat (also from the food co-op so that I know it is JUST wheat) boiled in chicken broth. He isn't so good at eating a whole piece of chicken yet. I so hope his next biopsy on April 26th shows he can keep chicken. I know the chances are lower though since kids with EoE tend to have more problems with meat protein.

Will also has another infection in his g-tube site. It is frustrating for sure. I hate seeing him on antibiotics all of the time. His granulation tissue is coming back as well, so we will have to start burning that off again soon.

Plans for the 5K are coming along nicely. I started contacting companies about sponsorship today. This is the part that I least like. I am also waiting to hear from TV 6 about them covering the event. The radio station 100.3 The Point is going to cover it and I am going to do a couple of interviews with them before hand. I also am waiting to hear from a local screen printing shop about them donating the t-shirts. I am so excited at how well it is coming along so far! If anyone would like more information about it, go to http://www.5kforeosinophillicdisorders.weebly.com/ I still need volunteers, racers, and sponsors!

Will started doing the cutest thing the other day. When you point a camera at him, he says cheese. He is so freaking cute! I love that guy so much. I always thought that I wanted a huge family. He fulfills me so completely though that I no longer feel that need. He is everything that I ever could have wanted and more. I truly feel like our family is complete. I am glad that I am finally able to be at peace with our decision.

And, to prove my point at how absolutely perfect he is, I will end with some recent pictures!

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!!!

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!

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!!

Yeah!

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.

MIA

So, obviously I have been a bit absent lately. We have so much going on recently though so I just haven't gotten to my blog much.
Well, I guess I should do a bit of an update. Thanks to some great people, we were able to get Will the backpack that he needs to house his feeding pump. It works great. He can run around and play all while his formula is being pumped into him. He also hasn't had too many vomiting episodes since having it. Yeah!!
Wills social worker through Early On told us about a month ago that we should apply for Social Security Income for Will. I didn't know anything about it at the time, but because she said to apply I did it. It took about eight hours (ugh) to fill out the online application and then Matt and I went to the interview at the social security office on Valentines Day (what a date eh?) I told the social worker then that we had applied and that we just had to wait. She said that it could take a very long time, up to a year, to hear anything and that even then we would probably be denied first and have to reapply. Well, fast forward to last Wednesday. I got a call from social security that Will had been approved and that they just needed a little more information from me and then our first check would be coming in a few days! That only took EIGHT days. We had heard stories from other parents who have had to wait up to three years. I was just blown away. So now Will gets social security income and we can use it to get all of the extra things that he needs to make his life easier that insurance won't pay for. Talk about a ton of bricks lifted off of your shoulders.
Right now I am working on organizing a 5K race for Eosinophillic Disorders. It will take place May 21st here in Negaunee. I am very excited so far at how things are coming together. All of the money raised will go to fund further research for Eosinophillic Disorders. The website I made for the race is www.5kforeosinophillicdisoreders.weebly.com if anyone wants to check it out.
Okay, I promise to try to keep this updated better. Thank you everyone for your love and support with everything that Will has been going through. Thank you thank you!