Happy Easter!

Hello!

Well yesterday was Easter and we had a great time here in the Chittle household.  We woke up to start our search for Will and Henry's Easter baskets.  Will did great finding his and brothers too.  Will must have been a good boy this year, because the Easter bunny brought him lots of fun stuff.  Like a Cars sleeping bag for camping this summer, swimming trunks for him and Henry that match, socks, a book, a movie, frisbee, harmonica, etc.  Then we all went to the park and played.  We came home and cooked dinner and had an Easter egg hunt.  Will and Henry both got change in their eggs to put in their piggy banks.  We have had to come up with different ways to celebrate the holidays since food isn't something we can focus on with the boys.  We didn't color eggs this year because Will is VERY allergic to them.  Next year I will order wooden ones to decorate though.  EoE sure makes you think outside of the box!  Here are some pictures from our day!

There is Always Something...

So it has been awhile since my last post, no surprise there.  I seem to turn to this blog when things get the most rough.  Now seems to be another one of those times.

For anyone who didn't know, we had our sweet Henry on 12-7-11 via scheduled c-section.  I had gestational diabetes pretty bad and it was safer for him to be born earlier rather than later.

We only got to see him for about a minute after he was born.  He wasn't breathing well on his own and had to be taken immediately to the NICU and put on a ventilator.  We also had to monitor his kidney function since we knew one was enlarged.  He later developed jaundice and pneumonia.  Despite all of that, our little fighter was able to come home exactly one week later.

Everything went well for a couple of weeks, but then, due to no lights being turned on in the living room and Wills toy truck being left on the floor, Henry was dropped by someone who tripped and now has a broken femur.  He is in a harness now and will be for about another month.  I have to take him to Traverse City, where the nearest pediatric orthopedist is, every two weeks until he is healed.

Then, as if that wasn't enough, I started noticing bruising and petechial rashes on him.  We took him to the doctor where they ordered bloodwork.  The blood work came back and shows some inconsistencies.  He now has to go through further testing.  They are looking for things like clotting disorders, hepatitis, etc.  Honestly, I don't even want to speculate.  Will has had numerous petechial rashes as well, and we have never gotten an answer as to why.

I am trying to stay strong for my boys, but I am too jaded by my experiences with Will to think that there is probably nothing wrong with Henry.  Bad things can and do happen to us, not just other people.  When I do vent to family and friends they seem to brush it off and say things like; "it will be so much easier now because you have been through it all with Will."  and "don't worry, you can do it, you've done it before." and my personal favorite, "this is why you weren't going to have more kids, because you knew there was a distinct possibility something could go wrong."

I know everyone means well.  But these statements hurt me more than they help.  It ISN'T easier just because I have one child with special needs already and hearing that I should not have had Henry, doesn't help me either.  He is a blessing that I adore and couldn't imagine my life without.  Reminding me, at a time like this, that he was a surprise, ISN'T helping the situation.  Things happen in life for a reason.

Again, I know everyone who has said things like this means well.  No one intended to be insensitive.  I think sometimes that if you have never been through anything significant with your child, you can never understand how someone else feels who has.  This is just my place to vent about how I am feeling.

I do also want to add, that I have met some pretty amazing people through Wills illness that are now supporting me through what is going on with Henry.  Thank you all so much.  I don't know how I could have gotten through these last couple of years without you.  I also know, that I have some amazing friends that have stuck by me for a long, long time that I rely on so much.  Jill Evans especially.  I love her so much and am still trying to figure out why she has stuck around for the 16+ years that she has.  ;)

Okay, vents over.  I got to get it out here so that I can be upbeat for my boys in 'real life'.  :)

Ahhhhhh!

So much going on these days, ahhhhh!  I swear, I really do want a boring, normal life.  It is what I strive for in life.  
The gestational diabetes isn't going as we had hoped.  I keep increasing my insulin, and am watching everything I eat, and my sugar levels still continue to rise.  So, right now I am scheduled for a c-section on 12-7.  That will put me at 37 weeks gestation.  At my last ultrasound appointment, with a specialist with a specialized ultrasound machine, baby was weighing in at 6 lbs (33 weeks gestation).  Its head was in the 50th% and its body was in the 92nd%.  All of this means that it is too dangerous for me to try a vaginal birth, dangerous for me and baby.  
At that same appointment we got some more news on the baby's kidneys.  The doctor still thinks that the problem could correct itself in the next 2 1/2 weeks, so that is great.  If it persists, which we will know by an ultrasound on the baby a day or two after birth, it is either kidney re flux, or a 'kink' in the tube that the urine leaves the kidney through.  This is making the urine drain slower than it should.  The re flux would be cured with a years worth of antibiotics and the kink would be fixed through surgery.  I am optimistic about it though.  Praying the problem just corrects itself.  
The last couple of days have been stressful because Wills insurance company is all of the sudden refusing to continue to pay for a medication that he needs.  He has been on it for a year now.  They want to do a cheaper medication (surprise, surprise).  I have had to fax medical records to prove that he has tried all of the cheaper ones and that they didn't work.  They don't care though.  They said the only way that they 'might' pay for it is if this new one makes him sick.  Then they will consider switching back.  Mind you, this is an insurance company specific for children with special needs.  Maybe they should be the ones that have to sit here and hold him while he is sick and miserable because of their greed.  Nevermind, the big wigs that make those decisions probably have no hearts anyway and that probably wouldn't sway their opinion at all.  Can you tell that I am pissed off by all of this?!  I am usually pretty calm and collected person, but this just gets me going.
I guess that is all for today.  We are going to have two kids in less than 2 1/2 weeks, ahhhhhhhhhhhhhhhhhhh!

Almost 31 weeks!

I can't believe how fast this pregnancy has been going the last month or so. It is sure flying by. It has also been quite eventful which may be why it seems to be going so fast.

I had my follow up ultrasound on Monday to check the babies weight, fluid, and kidneys. They have been checking on the kidneys because one is really large. Well, the one is a little larger now, and now there is also fluid in the kidneys. The baby is also almost 5 lbs now. So, I have to see a specialist in Grand Rapids when we bring Will down for his next biopsy. I am trying not to worry too much, I think I am actually doing pretty good about that.

I also just found out that I probably have gestational diabetes. So much fun! (Does the sarcasm come through well on here?)

Will is doing really well with the buffalo so far. It was hard to get him to swallow any of it at first since he isn't used to textures like that. But he is getting the hang of it now. I am keeping my fingers crossed that buffalo is a keeper!

We are going to a Halloween party on Saturday. We are also going to take Will trick or treating in downtown Marquette. His costume is so cute if I do say so myself! I just have to make the suspenders and he will be the cutest Gnome ever! Matt is being Charlie Chaplin, and I am being a gumball machine!

Be on the lookout for cute Halloween costume pictures coming soon! Here is a sneak peek below...

Update Time!

Okay, I suppose it is time for an update. Life has been pretty good. Wills last biopsy was clean, so peas are a keeper for him. We are currently trialing buffalo. I am nervous about this trial because he didn't do so well with his last protein trial. I am being optimistic though!

I am 27 weeks pregnant now. Time has flown this pregnancy. Chasing around a two year old will do that to you I guess. I was on bedrest for awhile due to a soft cervix, but now am just restricted on what activities I can do, like no more gym (boo!). But, as the saying goes, this too shall pass.

Baby Chittle number two is doing very well. I can't wait to meet him or her come Christmas time. I am trying not to wish away this pregnancy though, as hard as it has been on me physically, as this will be it for our contribution to the expansion of the Chittle clan.

I also am not allowed to drive until January due to seizures. They are so pesky. I haven't had one since June, so I am hoping it stays that way because you have to wait six months after an episode before you are allowed to drive again. It hasn't been all bad though. I have been baking more (mmmmmm, bread) and doing more crafts. I am teaching myself how to knit as well. I just got the fabric for the new nursery, so I am going to start the quilt and curtains sometime this week as well.

Will is talking in sentences now, he loves numbers, cars and colors. He is growing up so fast and is such a blessing to me. Everyday brings something new. He is such a special little guy.

Matt is doing well. Trying to squeeze in a few more rounds of golf before winter is here, working and playing with Will.

I guess that is all for now. I will leave you with some pictures from all of our adventures this summer. Have a great day!

Time Sure Flies...

How is my boy going to be two tomorrow?! It does not seem possible. I was watching videos of him from when he was a baby the other day. I had already forgotten how small he was and the funny faces he used to make! He is doing better, medically speaking, than he ever has. So I am so thankful for that, but even though he was more sick when he was younger, I am sure going to miss him being my baby. Now I have a toddler on my hands who is too smart for his own good. He is starting to speak in sentences already, we are embarking on the potty training journey, and he loves to help me do chores around the house. And he really is a help with them!

So, enough of that. Matt and I are going to celebrate Wills Birthday today since Matt has to work most of the day tomorrow. We are going to go to the beach, the playground, and maybe to the YMCA so Will can go swimming! Then tomorrow I will make him his 'cake' for dinner. Then the 21st we are having his Birthday Party. It is a vehicle theme party. I am having so much fun getting ready for it. It is going to be pretty nice if I do say so myself. If you are in the neighborhood that day, drop on by!

This weekend we are also going to go to Greenbay for the night with some friends. They have a little boy who is about 6 months younger than Will. There we will take the boys to the zoo and to Bay Beach. It should be fun!

Well, that is everything that is going on here. How has your summer been going so far?

Been Busy...

So, it has been awhile since I have updated again. This summer is just flying by and things have been pretty busy around here.
Will had another scope and biopsy done last week. We are still waiting on the results. This one was a little harder for him to recover from then the ones in the past. He wouldn't eat much and I had to use his feeding tube quite a few times in the three days or so following the surgery. He is doing good now though.
Will and I went to my Moms after the trip to DeVos and Matt met us there on Friday. Then Matt and I went on a much needed mini vacation to Mackinaw City and Mackinac Island from Saturday to Monday. We decided that we need to make time away together more of a priority. We didn't even realize how much we had grown apart until we were with each other alone for a few days.
For the last month or so, we have been working on our backyard. It was pretty much an unuseable space before. The previous owners had one of those inflatable pools in the back, and instead of just draining it the right way, they popped it and all the water washed away the top soil in the back into the neighbors yard. That made for a very sunken in, rocky backyard. So, we have it evened out, removed a MILLION rocks and are using them to create raised gardens, and we have a picket fence in. I put down grass seed so we are waiting on that to grow and Matt is going to put in a small patio so we can have a fire pit and a place to put our chairs. I have started painting the fence white, that is going to be a time consuming project. Our deadline is to have it done before Wills birthday party on the 21st of August. Hopefully we make it!
Let's see, what else is going on....oh baby number two is doing good. We have our ultrasound and 2o week appointment coming up on Monday. It will be nice to see the little bugger again. Matt hasn't been able to come to an ultrasound yet, so it will be his first time seeing the baby moving around in there and he/she sure does a lot of that these days!
Okay, I will try once again to be better about keeping this updated. Hopefully I will have some news in the next couple of days about Wills biopsy results so we know if he can keep eating pears or not. Keep your fingers crossed!

Been Busy...

So, it has been awhile since I have updated again. This summer is just flying by and things have been pretty busy around here.
Will had another scope and biopsy done last week. We are still waiting on the results. This one was a little harder for him to recover from then the ones in the past. He wouldn't eat much and I had to use his feeding tube quite a few times in the three days or so following the surgery. He is doing good now though.
Will and I went to my Moms after the trip to DeVos and Matt met us there on Friday. Then Matt and I went on a much needed mini vacation to Mackinaw City and Mackinac Island from Saturday to Monday. We decided that we need to make time away together more of a priority. We didn't even realize how much we had grown apart until we were with each other alone for a few days.
For the last month or so, we have been working on our backyard. It was pretty much an unuseable space before. The previous owners had one of those inflatable pools in the back, and instead of just draining it the right way, they popped it and all the water washed away the top soil in the back into the neighbors yard. That made for a very sunken in, rocky backyard. So, we have it evened out, removed a MILLION rocks and are using them to create raised gardens, and we have a picket fence in. I put down grass seed so we are waiting on that to grow and Matt is going to put in a small patio so we can have a fire pit and a place to put our chairs. I have started painting the fence white, that is going to be a time consuming project. Our deadline is to have it done before Wills birthday party on the 21st of August. Hopefully we make it!
Let's see, what else is going on....oh baby number two is doing good. We have our ultrasound and 2o week appointment coming up on Monday. It will be nice to see the little bugger again. Matt hasn't been able to come to an ultrasound yet, so it will be his first time seeing the baby moving around in there and he/she sure does a lot of that these days!
Okay, I will try once again to be better about keeping this updated. Hopefully I will have some news in the next couple of days about Wills biopsy results so we know if he can keep eating pears or not. Keep your fingers crossed!

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!

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!!