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!

So Blessed...

Today was a difficult day. I don't feel like going into a lot of specifics, but it was hard. I battled with both of Wills insurance companies, broke down while making chocolate chip cookies because it hit me that I will never get to make those for Will, and spent a lot of time on the phone trying to work with the medical equipment supplier. All in all, it was stressful to say the least.

Then I was approached by a friend of mine who said she wanted to do a fundraiser to help cover the cost of Wills medical supplies. Then, a few minutes after that amazing news I read this verse, it is from Psalm 139.

"If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you."

"For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be."

The last part especially touched me. Thanks to a wonderful friend, and a wonderful God, I have been reminded that I need to let go and trust that it will all come together in God. I can't worry about tomorrow and what may come. I can't worry about how we are going to make it work. Worrying accomplishes nothing and takes up too much precious time I could be spending with my family.
So thank you to my amazing and generous friend. Thank you God for bringing me this reminder.
"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28

Woohoo!!

Good news finally!! Will is gaining weight again. The most he has ever weighed is 21 lbs. 10 oz. and today he was back up to 21 lbs. 5 oz. I am so happy!!!!
We are going to switch him to continuous feeds though versus the bolus ones. His reflux has gotten worse and the thought is that if he is fed over a longer period of time, meaning his food goes into his feeding tube slower, then it should help his reflux. We need to do everything we can to manage that because we want to hold off as long as possible on him having another surgery on his trachea to insert steroid shots in it to keep the edema (swelling) down.
We should be getting the pump and other equipment by Monday or Tuesday depending on if the medical supply place has it in stock or not. They are usually pretty good about getting us the things we need in a timely manner.
I am also test driving a Honda Odyssey today. They let me bring it home and we bring it back in tomorrow morning. So far I really like it. Getting Will in and out is a breeze. It has a ton of room and is loaded (leather heated seats, DVD player, automatic doors etc). Matt and I will go in on Monday to talk numbers to see if it will work out. I hope so!
We are meeting Joanne and Lindsay tomorrow in Mackinac City for lunch and to bring Joanne back up here with us for about a month. I am so excited to have her stay with us for awhile. I have the BEST mother in law in the entire world. Will is going to get spoiled rotten for sure. I have been showing pictures of Joanne (Nana) and my Mom (Oma) and trying to teach him their names. Yesterday it finally clicked and he calls the pictures Na and Ma. I hope he realizes that Na and Ma are people not just pictures lol. I am excited to see if he calls them that tomorrow.
I can't wait for our fun filled weekend!!

What a Week

Will went to his appointment today with his Pediatrician. He has lost weight again since last week again. To keep it short and sweet, I am having a rough time with this right now, he has until Wednesday to keep food down and gain some weight before we have to take him to DeVos again and have him admitted. There they will probably try to talk us into having the Nissen surgery done that I wrote about previously. I DO NOT want him to have that done though. There are a couple of other options I want to try first. One is having a G-J feeding tube instead of the G-tube he currently has. The G-J tube goes directly into the intestines instead of the stomach. The other option is to put him on a continuous feed instead of the bolus feeds he does now. That would mean he would be hooked to a pump at night that would very slowly put formula directly into him. Because it would be VERY slow, it is probable that he would keep it down. They also have these special backpacks that kids can wear that have their pumps in them so that they can be fed throughout the day as well.
I want to know that we have exhausted every other option before turning to the Nissen surgery. I have talked to other parents of children who have had it done, and most do not recommend it. It is a dangerous surgery, and even more dangerous to have it reversed if it doesn't work out. One of the things that I have learned throughout all of this with Will is to trust my instincts. Right now, my Momma instincts are telling me that this isn't the best choice for us at this time.
That is all I have for today. I am just trying to get through this latest stuff for now. It is really starting to wear me down. :::exits blog repeating, "it could always be worse, it could always be worse.":::

Tough Week

This has been a tough week so far. Will has been sick and was in the hospital Tuesday and Wednesday. The perpetual question is; was it just the flu or an EE flare up? I think he is having an EE flare up. He is throwing up constantly, but no other symptoms. He acts fine other than throwing up, no diarrhea, no fever etc. He is on Zofran right now and he is still throwing up, just not quite as much as before. He has lost a pound and he is only tolerating Pedialite right now. So frustrating. We just got him up to the 10th percentile for his weight and now he is plummeting again even with having a feeding tube.
I think the next step is going to be to do a surgery called a Nissen fundoplication. It is where the upper part of the stomach is wrapped around the lower part of the esophagas and stiched into place. It is done so that the patient no longer is able to throw up. More information can be found here http://en.wikipedia.org/wiki/Nissen_fundoplication
I am really hoping to avoid this surgery. I don't know why, but it really scares me. They talked about Will having it done back in November when he had his feeding tube put in, but Matt and I were not ready to take that drastic of a step yet.
Please pray that Will is not going to need this done. I feel like I am reaching my wits end this week with all of his medical problems. EE, GERD, sub-glottic stenosis. When will it get easier? When will this start to feel normal? Does it ever?
I will try to update more later, right now we are playing it by ear. I am suppose to call his G.I. doctor today to update him, but I am honestly scared to because I don't want him to tell me that we need to head back down to Grand Rapids for another surgery this week. Will is 17 months and he has already had six surgeries and he has been sedated eight times. ::sigh::

Good Times!

We are all off to a great start for the weekend! Yesterday Will and I went to the Dome in Marquette so I could get my excercising in. I walked for about four miles while William napped in his stroller. Then we borrowed a ball and went out onto the football field and messed around. He loved the turf and kept trying to pick at it. Oh, and he has a new word to add to his vocabulary...ball!

We also had to stop by the mall so I could return some things. We didn't end up getting fancy for New Years Eve afterall so I couldn't justify keeping that little red satin number. Will liked playing in all of the cars that you can ride there. They are .75 cents each, he doesn't need to know that they are supposed to move right?! I am good with letting him think they are just there to sit in and get your picture taken!

Then,last night Matts friend Jay and his son Vinny came over for a play date and dinner. Vinny is only about 6 weeks younger than Will so it is nice to get them together. Matt made some yummy pasta and Jay brought garlic bread. It was a very nice dinner!

Vinny and Will had fun playing together in the playroom. Turns out, Vinny is quite the drummer! He also likes to give hugs while saying, "Awwwww". It is so cute!

It was a very good day yesterday and I am looking forward to a very good weekend. Especially tonight since I am meeting some girlfriends for some drinks. Yeah!!

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