Wednesday, September 24, 2014

Riley Aftermath

After the last Riley trip I hit a new low.  I felt defeated, helpless, and exasperated.  I cried off and on the whole next day.  I questioned what I should be doing and if I should quit working altogether.  It may seem drastic, but Gavin’s needs keep increasing and it is so difficult to manage it all.  Applying for financial help, dealing with insurance, paying bills, scheduling evaluations and appointments is a part time job. Not to mention how many days I miss each year going to all of these things.  We do our best to pack as much into one day as possible, but it is just too much.  I don’t have a job that is easy to come and go from.

I am also tired of people telling me he is “fine” or “looks fine to me”.  They mean well but have NO IDEA how damaging this is to me.  He is not fine.  The doctors give me bad news all of the time.   I am the one who has to hear him scream in pain, watch him limp, struggle to put on his compression sock everyday, deal with bleeding from rectum and leg, and worry about his future.  He told me the other day it was “God’s fault. He made me like this.  Why did he do this to me?”  It broke. my. heart.

I am not a negative person by nature and feel blessed by so many things in my life.  Sometimes it is just too much.

After a lot of prayer and fighting through, I am obviously going to keep teaching right now.  But I am listening to God and open to his plan for me.  I want to give my all to all areas of my life and I feel like I am failing them all.  Only HE knows what’s best for me, and if he leads me in a different direction, I am open to that.

As far as what’s coming up…

October 2nd: EVSC arena evalutation (Speech, PT, Psych) at 8:00 and then head to Riley for CT with contrast at 3:00.

October 6th: Three in one surgery at Riley (Vein embolization, Colonoscopy, Schlerotherapy or whatever is needed to fix gi bleeding)  Thankfully, they were able to get them all in the same area of the hospital instead of the original plan of transporting him from one OR to the next around the hospital while still asleep.  Scary!

Tuesday, September 23, 2014

Riley Trip

On Tuesday, September 9th, we went to Riley.  We had a huge trip planned and things didn’t start off well from the beginning.  Macie started throwing up at school the day before.  She was really sick and ended up getting sick all day long until I could get some medicine called in for her.  The girls stayed the night at my parents’ house so we could leave early for our trip.  I stayed until they were pretty much asleep and then headed home to do the same.  We were up at 3:00am and on the road by 4:00.  We stopped at Hardees for breakfast and a potty break, but other than that had a smooth trip.

#1 Dr. Haggstrom: The first stop was to see Dr. Haggstrom.  We’d never seen her at the Springmill location before, but it was close to IU North.  We got there and didn’t have to wait long to see her.  We discussed the increased pain and bleeding.  She knew we had other appointments ahead, so she just gave her suggestions and said she would talk to the other docs.  She wanted labs and more testing to see if the cause of the gi bleeding could be determined.  She also said she is limited on some pain meds because of the bleeding concerns.  She set up an appointment for 6 months, but said that would all depend on what happened with the other doctors.  Gavin got a few stickers for being a good patient as always.

#2 Specialty Health: We ran to Riley really quickly to apply for special health insurance for Gavin.  We are in the process of applying for Medicaid and this insurance to help with the cost of everything.  Unfortunately, we probably won’t qualify, but we can try anyway!  This took no time at all since we had already sent them most of the stuff.

#3 Lunch with Vaughts: Next up, we went to Circle Center Mall.  We walked around a bit and bought Gavin a toy.  Then we met the Vaughts at Champs  It was delicious and we had great company!  They even surprised Gavin with a Color Wonder set.

#4 Dr. Contreras: This appointment was a bit of a disaster.  Gavin had to poop while we were waiting in the room.  Brian took him and asked if he could get something to collect the poop.  He collected it and it was, of course, a rare time where there was no blood.  We were frustrated.  They went ahead and ran some tests on it.  During the exam, she kept saying his stool was too hard and we kept saying that it just rushes out with no control due to so much blood and mucus.  Brian and I were super aggravated.  She ordered blood work and said that she wanted to know what Dr. Marshalleck suggested.  She ordered the blood work for that day, so we had to try to fit it in.  Gavin left with more stickers!

#5 Dr. Marshalleck: We headed straight to see Dr. Marshalleck.  They did an ultrasound and confirmed that the areas around the coils had closed off, but that the other areas remained open.  The worst part was that they are starting to branch off and create new pathways.  UGHH!!  He suggested going forth with the colonoscopy, finishing the leg off with the vein embolization, and ordered a ct with contrast of the gi and pelvis to see if the source of the GI bleeds could be determined.  He agreed to coordinate with other doctors and attempt to do all procedures on the same day.  The issue was that we might have to be in different ORs all over the hospital and that freaked me out.  Brian left with Gavin to go get the blood work while I stayed with his rock star nurse, Donna, to see what we could schedule.  Donna begged and they agreed to do the ct with contrast right then since we were sure he wouldn’t need to be alseep for it and could handle laying still.  I thanked Donna and went to meet Brian and Gavin.

#6 CT Scan from H-E-Double Hockey Sticks: I ended up meeting Brian and Gavin in the hall.  Gavin was all smiles because they gave him a slinky and he hadn’t had blood drawn yet.  They just gave Brian a vile to collect it in when they did the IV for the scan.  We headed to the waiting area for the CT scan. Since Gavin already had a bracelet, they gave Froggy one.   We weren’t there any time at all when Gavin started pooping his pants.  Brian took him into the bathroom and helped him clean up and took his underwear straight up to Dr. Contreras’ office so she could see what we are always talking about. 

Then, they called us back for the scan.  Brian was able to be in the room with him when he got his iv and for the scan.  I stayed right outside because it is not my strong suit.  Gavin was brave, but nothing seemed to go right.  Basically, there were many attempts and 4 different spots they tried to get the iv in.  They used an ultrasound machine and everything.  I was sitting outside of the room listening to him cry and scream in pain.  It was terrible.  My friend, Tina, ended up meeting me and sitting with me so I didn’t have to be alone.  That was a huge blessing.  They never were able to get any of the scans done.  We finally just gave up.  I felt so bad and like the worst mother ever.  I wasn’t able to help in any way.  I just held him.  He recovered pretty quickly though and was happy to get two cars as a prize.  The main guy, Erv, felt so terrible and said he was so stressed, he needed to go home and get a drink!  He gave us his personal card and said that when we wanted to reschedule, let him know and he would work around us.  He also assured me that he would have the best team there to make sure it happened.

#7 Home Sweet Home: We stopped by the gift shop on the way out and let Gavin pick out some candy.  It was the least we could do after all of that.  Then we said good bye to the Vaughts and drove home.  We stopped at Chic-Fil-A on the way home and then picked up the girls.  We felt depressed and defeated.  We went to bed pretty much after being home.

Monday, September 22, 2014


As of Friday, September 5th, we are officially DEBT FREE (with the exception of our mortgage)!!  We've been working hard for the last 4 years to get our finances in order and have made many sacrifices to get to this point.  We've paid off credit cards, 3 cars, a personal loan, and student loan debt. We celebrated by treating Grandma, Grandpa, and Aunt Allie to dinner at Teppanyaki.  We also took Grammie and Pops there this weekend when they were in town.  Now, we just have to stay out of debt.  Our next big goal is to pay off our mortgage by the time I'm 40!  I know we can do it and if we do, we will be able to save around $50,000 in interest!

Thursday, September 18, 2014

A Week of Firsts

Macie has had a few firsts this week.  She had her first Girl Scout meeting as a Daisy.  I am helping with her troop this year.  She also discovered her first loose tooth!!  It is not falling out yet, but definitely wiggly.  Daddy told her to keep it in until he got home!  Grammie got straight to work and made her a tooth fairy pillow she can hang on the door.  She is bringing it Saturday, so it looks like we will make it!


Week Without Daddy

Sunday we dropped off Daddy at the airport.  He is spending the week in New Jersey training for his new job.  Dropping Daddy off was a bit harder on the kids than him just leaving from work.  We were all a little sad on Sunday, so we had a Sonic treat.  We’ve been surviving this week, but it’s been rough. We’ve had movie night and a slumber party in the living room, went to dinner with Aunt Allie, had dinner and Grandma and Grandpa’s house, and gone to soccer practice.   We will all be glad when Daddy gets home on Saturday!



This and That

Life’s been nuts!  I was sick for almost a month, we’ve been crazy busy, and Brian has been working an insane amount of hours.  He started a new job at SS&C.  I’ve been taking random pictures so here is a recap of some of the fun we’ve been having…

Photo Booth from Cory and Ivy’s Wedding:


Soccer: Macie is getting better each practice and loves playing goalie!


Elegant Party: During “E” week, Gavin had an elegant party and looked so handsome!


Chickens are so big they almost don’t fit in the tub!


Macie found a critter she wanted me to text a picture of to Uncle Gary!


The kids love to take my phone and take random pictures:


Froggy got his own arm band during the last Riley trip!


Preschool Snack: Gavin had snack during “T” week so we sent in stuff to make teeth!


Eating puppy chow like dogs!


Bath Time!!


Chicken Coup

We’ve all been sick a lot lately and we were wondering if the chickens were making us sick.  Brian was getting ready to go out of town and so we kind of rushed to get them outside in the coup.  Thankfully, my dad helped Brian out with his plan.  The main chicken house is pretty much done.  It just needs some finishing touches.  They stay in their house for a week or two and then we can let them in the run.  Brian has to finish to run soon.  The chickens are getting bigger each day and seem to love their new home.  I have to admit, its been crazy, but fun!


They’re At It Again…


Happy Birthday, Summer!

A few weeks ago, Macie was invited to Summer’s birthday party.  I dropped her off at Pump It Up with Brandi until Brian could get there.  She had a great time!  Can’t believe my baby is big enough to be dropped off at birthday parties!!


Monday, September 1, 2014


One of the highlights of the weekend was that Andre was in town.  Of course we were happy to see his parents, too.  We spent some time with him each day and the kids were all about him.  I love that little guy and look forward to each visit!