The Journey We Are On.....

What to show your support for the Global Foundation for Peroxisomal Disorders (GFPD) and families like ours that have been changed forever because of PBD? For just $10 you can by a GFPD Vinyl Window Decal. Check us out on ebay .

If you live in or around Meridian, Mississippi please consider checking out "Art for Archer" next month! Ethan and Archer are buddies and both have PBD-ZSD. "Art for Archer" will benefit the Global Foundation for Peroxisomal Disorders. https://www.facebook.com/ArtForArcher

The second day at STEPS was a lot better. I think we are going to be able to work out a schedule/routine that works for Ethan. No tears from Ethan (or me) this morning. Today he had "free play" from 9-10am, PT from 10-10:30am, Speech from 10:30-11am, then he played a little and then it was time for all the kids to go to the gross motor room to play so Ethan went with them and stood in his stander for 25 minutes and played with toys 11:15-11:40am, and then we all came down for circle time 11:45-noon. Ethan started circle time in my lap, then he was done and he crawled/played and made his way to his speech therapist and they sat an clapped, played the drum and smiled along with all the other kids. Now if we can only find a way to change his feeding schedule and still get all of our meds, food, and liquids in that he needs. He is drinking a bottle in the morning before he goes, but he won't eat there. When we got home today he refused to eat and take his meds for me but...

Today was Ethan's first day at the STEPS program, a local program for mostly 2 year olds with special needs. It was a really rough morning for Ethan and I. There were lots of tears and Jeff and I stayed the entire time 9am - noon. We will try again on Thursday -- it will just be Ethan and I the next time. Hopefully we can make this work and it can be an enjoyable and positive experience for Ethan. I think one of the reasons that I was really overwhelmed is that it seemed like so many of the kids in his class are doing so much more than Ethan. There are nine kids in total and more than half are either walking independently or with just a bit of assistance. Almost all of the kids could sit in little rifton chairs for snack time and most are doing some form of self-feeding, some even with utensils! Almost all the kids sat in the rifton chairs for circle time at the end of the day with no problem and seemed to enjoy beating on the drum and the signing of son...

It has been a busy week for the Marshall family. We typically stay pretty busy, but this week was a bit more busy than normal. On Monday we headed to Champaign for Ethan's eye doctor appointment. Jeff's dad came with us and Ethan enjoyed spending some time with his grandpa. He was so happy that while we were waiting for the eye doctor that Ethan wore his glasses for nearly half an hour. As you know that is very unlike our Ethan. It was an emotional appointment for me. As most of you know when we were there three months ago we got a new prescription for Ethan's glasses and were told that we needed to dilate Ethan's right eye "the good eye" to force his left eye "the bad eye" to work better. We have been unsuccessful at getting Ethan to wear his glasses, and because of that we made the decision not to dilate his eye. I knew the doctor would chastise us for the decision, but after talking with other PBD parents we felt that we had made an infor...

Ethan pulled up on the couch into standing for the first time yesterday during Physical Therapy. He did it 3 times during the PT session!!!! We are so excited!!! He did it once for Jeff last night and then one more time for Jeff's parents last night when they came by to visit. Ethan needs to be "bribed" with a toy he really wants, but who doesn't like a little incentive when it comes to attempting something that is really tough. Not sure when we'll get proof on video, but I do have witnesses!

Ethan's first flight! Don't be fooled, he did NOT stay this happy. It is pretty hard to believe that we've been home a full week. I ache already to be surrounded by other families who get me and who understand this disease all too well. There was a lot of discussion about how we all "get it," and we wish we could all move to a tropical island and bring the best doctors, therapists, and teachers to join us and we could escape all the "normal" people and just create our own little world. Here is just a few of the people who'd be there 2012 GFPD Family Support Conference . Our roomies. The Maag family from Carrollton, IL shared our beautiful  3 bedroom suite at the Floridays Resort with us. Not pictured is Clancy, Kenna's older sister. Kenna will be 4 years old in October and has PBD. Her mom, Vicky, has become a very close friend. Heidi, Ainsley, Ethan and I at the lantern lighting celebration/memorial. Ainsley's family...

Look what Ethan started doing today! His buddies in FL must have taught him how to do this because he has never tried this before!

We returned home from the 2012 GFPD Conference on Sunday afternoon. I haven't taken the time to write down all that happened during the week, but I will. Until then, a little look at my second family will have to tide you over. This is the opening video from the conference. 2012 GFPD Family Conference Opening Video by Shannon Butalla, GFPD President

Ethan turned 2 years old yesterday! We actually had two birthday celebrations. The first was on Saturday. We celebrated with my side of the family at my parents house. We had a combined birthday party for me, my cousin Mike, my Grandpa Troutt,  my cousin Callie and Ethan. We were celebrating a combined 158 years! It was wonderful to spend the day with our family. There was tons of food, fun, and presents! Ethan even touched some cake this year and ate a few bites of coconut ice cream. Then last night we had another birthday party here at our house with Jeff's side of the family. Our house was full of little kids. Here is the best picture of the all the cousins that were at the party that I could get.  Our family from the Chicagoland area were unable to make it to a Monday evening birthday party, so we missed them of course, but I think I can safely say that Miles and Cora would have had a blast with all the other cousins if they had been ab...

Thursdays are almost always busy around the Marshall house. Ethan has physical therapy and occupational therapy every Thursday (unless their is a conflict) and twice a month on Thursdays he typically has his appointment with his vision therapists, and once a month on Thursdays he typically sees the dietitian. Sometimes the stars line up and we all of those on the same day.... like today - except instead of having a vision therapy session, Ethan had his first meeting/evaluation with the feeding therapist. Here was my little man's schedule today: 9:30 - 10:30am Physical Therapy 12:45-1:45pm Feeding Therapy & Dietitian Visit 2:15-3:15pm Occupational Therapy It was a busy, but good day, minus the fact that Ethan still isn't eating well and now weighs less than he did six months ago. The plan is for Ethan to start Feeding Therapy, two times a month, starting next month (on Thursdays - it is the only day the feeding therapist is in Decatur). Look at what Ethan di...

My parents were in town yesterday helping with the triathlon (they were one of the spotter boats for the swimming portion of the race) so we got to spend part of the afternoon with them. They brought a gift for Ethan. I think he likes it, what do you think?

As you know we've been having issues getting Ethan to eat very much over the last few weeks (he lost almost a pound this past month). We've been working on trying to not have him have such fits in his high chair, so we recently started using it as booster seat, but that isn't always good enough for Ethan, so today we ate in the living room while playing with his jungle toy! He had yogurt for lunch and part of his medicines. This evening we were able to get pureed "taco" chicken as well as applesauce and the rest of his medicine (minus his bedtime dose of Cystadane) in him. We were all very happy.

After two hard nights around our house, Ethan slept for almost 12 hours last night -- a huge answer to prayers! Ethan went down tonight around 10pm, so let's pray we have another full night of sleep! This morning we had our Baby TALK Special Connections playgroup and Ethan tried to eat his friend Mason's toe! Well, maybe not eat it, but he did lick it! Mason was not thrilled to have his friend lick his toe, I mean GROSS! But that is my boy, the toe licker, gotta love him. We also got to see Ethan use one of his newly acquired cognitive skills: they had a bus toy like we have here at home that has lights, sounds, and plays music. Ethan crawled right to the toy and pushed the top of the bus to make it play and it didn't do what he knows it is supposed to do and he was a bit upset. I know this sounds so simple, same toy, different place --- but that is actually a skill kids have to "learn." Last week when Ethan was at his grandparents's house for a bit when I...

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.