The Journey We Are On.....

Merry Christmas and Happy New Year from the Marshall Family Dear Family & Friends, Merry Christmas and Happy New Year from the Marshall family! This past year has been another year filled with challenges, celebrations, and changes and in the midst of it all, I simply did not make time to write our typical Christmas letter. One of the most significant changes in our lives this year has been our move from Decatur to Peoria. In April, Jeff accepted a new position with Caterpillar and he began working at the Mossville facility (just north of Peoria) at the beginning of June. Ethan and I were able to join Jeff in Peoria in mid-July and it seems like we are just now starting to slow down and settle in to our new life and routines here.  We can’t thank you enough for your continued love, support and prayers. They are greatly appreciated. It is our prayer that in 2015 we would grow closer to God and see Him working in our daily lives. We continue to hold onto His promis...

Ethan's class went to the Bass Pro Shop this morning to see Santa. This was Ethan's first field trip! His first time riding a bus! His first time in Bass Pro! His first time walking around a store! I know I've said it before, but I feel so blessed by Ethan's school experience so far this year and by the amazing teachers, assistants, therapists, and support staff who are part of our team. Thank you so much! My first time on the bus. All loaded up and ready to go! We're here! Get me off this bus and out of this chair! I'm not exactly sure what I think about snow people.... Just walking around, exploring the store. (Ethan had to stop and rest frequently, but he did a TON of walking this morning. It was great. He seemed to really enjoy making choices about where he wanted to go. It was just wonderful to see him explore a completely new environment.) Hi. I think I might need one of these! Visiting with Santa. I'm done, ...

We took Ethan's walker to church today. I only recorded a few seconds, but he walked around for probably 5 minutes of more exploring the church hallways and the gym. After resting for a few minutes he walked a little bit more, but we could tell he was worn out. Click here to view the video.

Although we have not yet become members of the church we've been attending regularly since moving to Peoria, we are starting to feel more connected, getting to know more people, and are feeling very blessed that we've been welcomed with open arms and hearts. Finding a church home is hard for anyone, but when you add having a child with special needs to the mix, that often adds an entirely different layer of complexity to the situation. This morning we had a meeting with Ethan's "team." At this time seven ladies (and a possible 8th) have signed on to be Ethan's one-on-one in the nursery so that Jeff and I can attend Bible Study (Sunday School) and the Worship service. We didn't get a chance to meet all of his team members this morning, as some of them had things that kept them away from church today, but those that we did meet seemed to be thrilled about getting to spend time with Ethan. Ethan is in the "crawler" room at church, which seems to ...

Happy Halloween! Ethan has been getting a little bit stronger each day. We are so thankful to his therapists and teachers for helping him get back some of his mobility. This past week he has been working on steering his walker. Want to see Ehan on the move? Click here .

This morning Ethan had an appointment at Easter Seals to be evaluated for outpatient physical therapy. While we are very happy with his PT at school, it is our desire to supplement it with outpatient, and specifically with water/pool PT. The evaluation went well, Ethan even showed off and walked with his walker for the PT. Hopefully, he'll start outpatient PT within a couple of weeks. Afterwards I took Ethan to school, but he was only there for a short time since it was a half day. We decided to spend part of the afternoon with some of our new friends, Michelle and Khloe. Khloe is in Ethan's class at school. We headed to the Peoria Zoo. It was Ethan and I's first time there. While Ethan didn't care about the animals we had a nice visit and the kids enjoyed playing in the leaves. This was the first time Ethan's really "played" in the leaves. It took him a while to warm up to it, but overall I think he liked it.

This week we got some great news, Dr. Rizzo, who saw Ethan last week at Children's Hospital in Omaha, and who is a member of the GFPD Medical Scientific Advisory Board , has received a five-year, $3.3 million grant to study 10 rare diseases, and one of the diseases that will be included in this study is PBD-ZSD! You can read the press release here . Please keep joining us in prayer for the doctors, scientists, and researchers who have dedicated themselves to the study of PBD-ZSD and other rare diseases. The GFPD considers ourselves blessed to have such a great team of professionals who are searching for ways to increase the quality of life for our children and ultimately discover a cure.

At the end of August we began working on potty training/scheduling with Ethan. We weren't in a hurry to start working on this since Ethan can't tell us he needs to go and he can't walk to the potty, but since other kids in his preschool class were working on it, we decided it couldn't hurt to give it a try. Ethan has really surprised us! Ethan's been using the potty at school and at home for about 2 months now. He averages about 50 to 75 percent success while he is awake, and is now wearing more pull-ups than diapers. He still can't tell us he needs to go, so it is more about scheduling and we give him the opportunity to try typically every two hours. When he is successful we cheer, sing, and celebrate! Ethan claps his hands and smiles. At this time he seems to really enjoy being successful and so we'll keep on taking him. Since we have done a bit of traveling since Ethan started using the potty, we just take it with us -- have potty, will travel -...

Jeff, Ethan, and I spent the Columbus Day weekend with friends in Kansas City, KS. This was a special trip for several reasons 1) none of us had every spent any real time in KS; 2) this was our family "vacation" for the year; 3) we got to see some of our GFPD family! While in KC we enjoyed swimming in the hotel pool, walking around the KC Botanical Gardens, and visiting the Deanna Rose Children's Farmstead with the Maag family. Of course, the real highlight of the trip was getting the chance to spend time with three other families who understand PBD-ZSD. Ethan's favorite thing about the Children's Farmstead were the cow bells! Although it isn't a great picture, its proof we were all together. On Columbus Day we checked out of our hotel in KC and drove to Omaha, NE since Ethan had a DEXA scan (which measures bone density) and an appointment with Dr. Rizzo (one of the top PBD-ZSD experts in North America) the next day. Our friends from ...

The Global Foundation for Peroxisomal Disorders (GFPD) is turning 4 years old! Would you please consider taking a moment or two to #PauseforPBDs on Sunday, October 5th in honor/memory of the individuals and families whose lives have been impacted by PBD? How will you pause? Ideas include: a balloon or lantern release , lighting a candle, reflecting during a moment of silence, saying a prayer and/or putting a note in your church's bulletin, asking for a love offering to be designated to GFPD, spreading awareness via social media, reaching out to a friend or family member impacted by PBD, making a donation to GFPD,etc. Will you join us as we #PauseforPBDs to remember, reflect, and raise awareness? To learn more about PBDs, visit www.thegfpd.org . To join the #PauseforPBDs event on Facebook, click here .

Tonight my heart is especially heavy and hurting for many members of my GFPD fam ily who are going through extremely challenging times. PBD-ZSD affects every aspect of our lives and impacts/puts extra stress on our relationships with our spouse/partner, child(ren), family and friends, our jobs, finances, and life in general. The grief each of us feel and are working through is different depending on where we are along this journey and can vary from day to day, but it is real and sometimes seems completely overwhelming. Will you please lift up little Harleigh's family tonight? Harleigh is just 5 months old and she is severely impacted by PBD-ZSD. She is really struggling right now and she may not have a lot of time left here on Earth. We know that only the Lord knows the number of Harleigh's days (and ours) but her little body seems to be getting very tired. Would you join me in praying for a miracle, for healing, for comfort, for peace that passes understanding for the Web...

This summer has been one of changes and challenges. Not all of the changes have been bad, but some of them have been and are continuing to be ongoing challenges. I'll share more in a longer update soon, but here is the short version of what's going on for our family. Over the months of June and July Ethan went from walking dozens of independent steps in a row to not taking any steps, barely cruising, and basically not even wanting to bare weight on his legs/feet. To say that we are devastated about this setback and loss is an understatement. We are thankful that at this point Ethan is still mobile, he crawls and he scoots on his butt, but my heart aches for the boy who was on the verge of truly walking independently back in May that seems to be, at least for now, gone. Ethan has started school and we actually have his IEP meeting tomorrow. We are hoping that the new PT and the increased minutes will help us try to get some of this back. I want my son back. I hate this stup...

It has been nearly a month since I last wrote. I feel like we’ve been on autopilot since the middle of May, simply moving through the motions getting through one day at a time.   Over the last couple of weeks we have: Placed our house on the market. Jeff has accepted a new job and our family will be moving sometime this summer. Visited Farm Park in Peoria, IL were we got to meet up with another family from the area that I met through Illinois Mommies of Miracles. House hunted and made an offer on a house in our new city (contingent on the sale of our current home) Visited Ethan’s potential new school. We are going to be visiting another possible classroom placement at the beginning of the school year before we make a decision about what will be the best environment for Ethan. Scrambled to get the house ready for a showing numerous times. Please continue to pray for the sale of our house. Shared in the excitement of my younger brother’s engage...

It must be Thankful Thursday because I am happy to share that Ethan wore his glasses for over an hour at school and then I took him to PT at the hospital and two different times he walked more than thirty consecutive independent steps. The first time was 39, and he ran out of room or he would have had more. Later in the session he completed 35 independent steps in a row. This is huge, we haven't had more than a few steps in a row since the end of February. With Ethan's CI surgery at the beginning of March followed by sickness for most of March and April hopefully we are finally getting back to where we were back at the end of February when he took 44 consecutive independent steps (his record to date).

We have had a really rough start to spring. We spent a week in the hospital in March for dehydration and a "mystery" virus/illness. Ethan only went to school Monday and Tuesday last week, and was sick the rest of the week --- cough/congestion, etc.. He started feeling better on Saturday, but that is when I started to feel like crud. This cold has really worn me out, so I haven't been running, and the half marathon is a week from Saturday! Ethan went to school Monday and yesterday, and was fine until last night when he hardly slept, was irritable, and eventually developed a pretty high fever. The fever is gone, but he is still wiped out and restless. He is currently sleeping, and I pray that his body will be able to fight harder to get rid of whatever is making him feel so bad. We just can't seem to stay healthy. I hate it.

March went out like a lion for the Marshall family, as Ethan battled illness for the last two weeks of the month.   Ethan went to school on Monday, March 17 th (St. Patrick’s Day) and didn’t get to return until March 31 st (yesterday).   After Ethan came home from school on the 17 th he had a nasty little cough, so the next day I kept him home from school to take him to the doctor. Ethan had a little bit of clear nasal drainage but besides the cough he seemed to be feeling okay. However, since we don’t like to take chances, we wanted to get Ethan checked out. It was a quick visit and there weren’t any signs of anything serious so we headed home but I figured it would be best to keep him home from school the next day anyway.   This ended up being a good decision since the clear nasal drainage started to turn into major yellow and green boogies and Ethan developed a fever as well. We treated the fever with a combination of ibuprofen and Tylenol, ...

This month marks 1 year since Ethan became dependent on a feeding tube. Ethan has eaten very little by mouth in months. Today he ate 4 oz of orange banana medley baby food for his afternoon snack. Although we know Ethan will most likely be dependent on his feeding tube for the rest of his life,  it was great to see him interested and tolerating more than a bite or two of food by mouth.

We've known for a long time that because Ethan has PBD-ZSD  his hearing loss would probably be progressive and that at some point hearing aids alone would not provide him with adequate access to sound. Ethan received his first set of hearing aids when he was just 4 months old. Over the last 3 years his hearing loss has been monitored and his hearing aids were turned up, then last year he got new stronger powered hearing aids and those were then turned up several times, but Ethan just didn't seem to be responding well to them. In November Ethan had another sedated ABR (hearing test) along with an MRI and a bunch of blood work. The ABR's results showed us that Ethan's hearing loss had gotten worse and it was now time to move forward towards a cochlear implant. So, following the ABR we began having all of Ethan's records sent to implant team at Carle Clinic for review so that the surgeon, audiologists, and speech language pathologists, etc. could determine if th...

Following a busy Christmas season with family, the New Year started out slow as the cold weather and snow/ice kept us inside where it was warm. School was closed numerous times throughout the month due to the snow/ice and/or biter cold temperatures and there were even a few days that the roads were too treacherous for Jeff to make it across town to go to work. One of the best days of the month was Sunday, January 12th when Vicky and Kenna came to visit us! It was a joy to attend church with friends who we consider family and spend the majority of the day with them before they had to head home. I don't think I'll ever get tired of spending time with other GFPD families -- there are so few of us and we are spread out throughout the country/world -- that anytime we get to spend with one another is very special. Despite the weather, Ethan did have several visits with specialists.  On the 13th Ethan saw both the GI and the Neurol...