The Journey We Are On.....

Teeth and the lack of them are continuing to be a problem at our house. I am still suffering with the pain of dry sockets from last weeks wisdom teeth removal, and our poor little man has been working on the top front two teeth for months! Look what showed up yesterday! Last night was a LONG night! Ethan was up until 1 am, back up from 3:30-5:00am, and then back up at 10am. It is going to be a LONG day. Hopefully a good afternoon nap for Ethan will make things better.  If you are in the Decatur/Mt. Zion area and like ice cream please consider attending the Mt. Zion Community Ice Cream Social tonight from 5-8pm at the Mt. Zion United Methodist Church. Ethan is one of the individuals being blessed with a portion of the proceeds of the event - which we hope to use to help offset part of the cost of an adaptive stroller/wheelchair for our little man.

It seems like it has been weeks ago since we returned from our little "get away" but in reality it has only been a little over a week.... Ethan's eating habits have gotten worse. He is now screaming the moment he sees a spoon! He continues to have a meltdown when he even gets near the high chair, and even gets upset when Jeff picks him up and carries him into the kitchen. He isn't even letting me feed him in the living room -- one day I had some success by following him around and shoving a bite in here and there as he played, but that isn't working anymore either. So, as of now, Ethan' isn't eating any solids all day. With Jeff's help we are getting Ethan's medicines in as well as a few bites of food in the evenings. Ethan is taking his bottle a bit better, and while I know that we can get enough nutrition in him if he'll drink 24 oz. of his pediatric drink, it isn't an ideal situation. I took Ethan to the doctor yesterday and ther...

For this "staycation" we actually stayed two nights in Clarksville, MO (about an hour south of Hannibal, MO). We left on Friday afternoon with a car full of stuff, and of course we realized later that I had not packed a tooth brush, shampoo, or conditioner, and headed west. Our first stop was Hannibal, MO -- the boyhood home of Mark Twain. It is a cute little town and Jeff, Ethan and I walked down the little main street looking into shops and reading signs about the historical significance of the buildings. It was WARM but it was fun. Then we headed to our actual destination -- which was a generous gift from Jeff's parents -- a few nights at a resort. We had actually wanted to go somewhere else but since those locations weren't available we ended up with Clarksville, MO since Jeff was only going to be able to take a Friday and a Monday off of work and we didn't want to travel to far with Ethan. The resort itself was nice enough, but was definitely designed f...

I learned this morning that two more little ones with PBD had left this world and the arms of their parents for the arms of Jesus. It is so tough, because although I haven't met either of these families in person I have had the chance to get to know them a bit through our GFPD Family Support Group. Please pray for these families and all families who have lost a child. My heart breaks. Ellena Page, August 26, 2011 - June 12, 2012 United Kingdom Kevin Feldtmann, May 6, 2009 - June 12, 2012 South Africa I

We had Ethan's six month check up/in with his ENT this afternoon. Overall, the visit went well. Ethan's ear canals are still REALLY small and I'm not sure that she could see much but otherwise she said Ethan looked good and that his cough and the boogers were likely just viral since his throat looked fine and she didn't see any redness in his ears. Ethan's hearing tests over the last year had some really mixed results, so we are planning on doing a sedated ABR this fall. He has never had one. We've done natural sleep and booth testing, but we need a good picture of where his hearing really is, especially since for many kids with PBD it seems that there is a dramatic change in hearing around the ages of 2 to 4. What makes it more difficult is that we are trying to coordinate having an MRI done at the same time/day so that Ethan would only have to be put under once. Why a sedated ABR? It will give us the best results to let us know where Ethan's hearing re...

Okay, so it wasn't actually ice cream. It was a dairy-free (coconut-milk based), vanilla flavored frozen dessert, but Ethan tried it for the first time today! He had a few little bites, I'm not sure he knew what to think.

Ethan is 22 months old and it is showing! All of our therapists laugh because it seems like most of the kids they see, despite the challenges that they have, still experience the "terrible twos."  Ethan wore his glasses so well on the first day but we haven't been able to keep them on for longer than a few seconds since then. Even if we hold his hands he will wave his head back and forth or try to rub his face with his shoulder to get them off, all while screaming of course because we are holding his hands. If we don't hold his hands the glasses are off before they can get on and adjusted. Ethan has also decided that he shouldn't have to wear the one hearing aid that is working. He yanks it out almost immediately every time I put it in he pulls it out. Bedtime has been going a bit better. Ethan is so mobile - combat crawling all day long - that he seems to be wearing himself out a little more. Last night he was asleep by 10pm and tonight by 9pm. He stil...

This afternoon Ethan got to visit with his Great Grandma Chambliss. Unfortunately we didn't get any pictures because he wanted to play on the floor and show off in his walker instead of cuddling with his Great Grandma. It was still a great afternoon though!

This summer we are hoping to take lots of little "Staycations." Today we took our first one. We had to go to Champaign to pick up a bridesmaid dress for a wedding I'm in October and needed to stop by Babies R Us to get some new Dr. Brown bottle supplies. On the way home we decided to go to Allerton Park in Monticello. We were only there for a short time but we had fun! I love this one! Can you pick out my two Marshall men? On the drive home we saw a double rainbow! I had Jeff pull over so I could take pictures. It is tough to see, but it is there, I promise. Jeff and I said a short prayer there on the side of the road. We thanked God for the reminder that He will not destroy the earth again by flood and for all of His promises and His love. We prayed for Ethan and for this journey we are on. "And we know that all things work together for good to them that love God, to them who are called according to his purpose." Rom...