December 27, 2013

Merry Christmas & Happy New Year from the Marshall Family


Dear Family & Friends,

Merry Christmas and Happy New Year from the Marshall family! We are once again praising God that we are wrapping up another wonderful year with Ethan. Two thousand and thirteen has been a year filled with many changes, challenges, and celebrations.

Last winter Ethan mastered cruising along the furniture and became a super speedy crawler who enjoyed pushing his toys from one room to another. He even began taking steps with his walker! We also reveled in the improvement of Ethan’s sleeping habits! Ethan received more powerful hearing aids to provide him with additional amplification and they appeared to make a great difference in Ethan’s ability to hear the world around him. Unfortunately, in the midst of the happiness, Ethan seemed to be continually battling illness and dehydration which led to many doctor appointments and the introduction of a GI doctor to our team.

On the first day of spring we found ourselves on the way to Carle hospital. Ethan was admitted for IV fluids and ultimately had surgery for the placement of a feeding tube. While we delayed a feeding tube as long as we could we agreed with the doctors that it was time. Without this type of intervention we were not going to be able keep Ethan alive and healthy. Although Ethan initially had some difficulties healing from the initial surgeries which also led to some temporary setbacks in his gross motor skills, we can now say without a doubt that it was the right thing to do. We have a reliable way to provide Ethan all of his nutritional and fluid needs and we have seen his overall health improve since the surgery.

We held our 2nd Annual Pancakes for PBD-ZSD in May. We were so blessed by all those who volunteered and attended the breakfast.  With your help we raised enough to cover our travel and lodging expenses for the GFPD Conference and what we didn’t need went to help other families impacted by PBD-ZSD attend as well. Thank you so much for your support and generosity. There will not be another GFPD conference until 2015 so the proceeds from next year’s Pancakes for PBD-ZSD event will be designated to PBD-ZSD research.

The great weather this spring and summer allowed Pamela and Ethan to spend time outside, which usually meant that Ethan rode along in the jogging stroller while his mommy did all the hard work. Many evenings after Jeff got home from work the whole family enjoyed a relaxing family walk. We always miss this when it gets cold outside.

On July 1st we were thrown another curve ball – Ethan had what appeared to be a seizure at STEPS (his pre-preschool program). The teachers called Pamela and she went to pick up Ethan and Jeff met them at the hospital. After several hours and numerous tests Ethan was transferred to Carle for additional testing and observation. Ethan’s EEG was VERY abnormal and indicated extensive seizure activity so the neurologist started Ethan on an anti-seizure medicine. Ethan was discharged on July 4th and we enjoyed a quiet night at home watching fireworks on TV. Finding the right medicine and dosage were a bit challenging and it took several months for us to find what would work for Ethan. Thankfully, Ethan’s seizures are now controlled with medication. Although the medicine seems to be working well, Ethan is still at risk for breakthrough seizures so to help keep him safe he does wear a soft padded helmet at school.

On July 23rd Ethan turned 3! We celebrated twice, one party with Pamela’s side of the family where Ethan shared the festivities with the other July birthdays in the family, and another party with Jeff’s side of the family. A few days after Ethan’s birthday our family drove to Lincoln, NE to attend the 2013 GFPD Conference.  Ethan had clinic visits with several of the top PBD-ZSD specialists in North America and we were able to learn about the latest research that is being done in hopes of discovering new treatment options and ultimately a cure. We always look forward to this very special opportunity to be surrounded by specialists and other families who understand this diagnosis and journey. Pamela continues to serve on the GFPD Board of Directors as the Registry & Support Group Coordinator and spends much of her time connecting families around the world whose lives have been changed forever because of PBD-ZSD.

Ethan started preschool in August. He attends Pershing Early Learning Center. There are seven kids in Ethan’s class and each is unique with their own challenges and strengths. The transition from Early Intervention to the public school system has been somewhat challenging but we have made adjustments and are pretty settled into the new routine, new therapists and teachers, and change in services.

This fall and early winter have brought many other changes. Ethan has mastered walking with his walker, and can now walk several hundred feet at a time. He even uses it at school to walk to and from his classroom most days when I drop him off and when I pick him up. Ethan enjoys walking if you hold his hands and he is even taking independent steps.  On December 13th Pamela stayed at school to participate in Ethan’s PT session and was able to video Ethan taking more than 10 independent steps!!! While he is only consistently taking 4 to 5 independent steps at a time we are elated about the progress he has made in the last couple of months and we pray that he will continue to make grow stronger and gain new skills. When Ethan had his sedated hearing test this in November it showed that Ethan has lost more of his hearing. We are now in the very beginning stages of what we are praying will lead to Ethan undergoing surgery for a cochlear implant within the next few months. We want to do everything we can to provide Ethan with access to the world of sound.  

We continue to be blessed by Jeff’s job at Caterpillar that allows Pamela to stay home with Ethan. Although Jeff did have to take three weeks of mandatory unpaid furlough this year we are thankful that his job was not cut, as there were over 800 layoffs at the Decatur facility this year. Jeff continues to serve as a deacon at our church and plays drum in the praise band. Pamela continues to stay home with Ethan and has enjoyed having just over 2 hours of “free time” Monday through Friday when Ethan is at school. She gotten back into running and ran in two 5K races this fall. She even placed 3rd in her age group at our local Turkey Trot race. After the New Year she is planning to begin training for the Illinois Half-Marathon that will take place in April 2014.

We can’t thank you enough for your continued love, support and prayers. They are greatly appreciated. It is our prayer that in 2014 we would grow closer to God and see Him working in our daily lives, whether we find ourselves on the mountain top or on the valley floor.  We continue to hold onto His promises and know that He loves us and that we can trust in that love even when we don’t understand and can’t help but wonder “why”. Please know that we are praying that 2014 will be a wonderful year for you as well.


Jeff, Pamela & Ethan

December 3, 2013

Giving Tuesday

Have you ever heard of Giving Tuesday? I hadn't until today. You can learn more about this amazing movement on their website.

If you are feeling in a giving mood today, would you consider making a donation to the Global Foundation for Peroxisomal Disorders (GFPD). You can do so online or by mail. For more information visit www.thegfpd.org.

We are so blessed to be part of the GFPD family. We can't even imagine what our PBD-ZSD journey would be like without the support of other families who understand this diagnosis and how it changes live forever.

Thank you for your continued love, support & prayers,
Jeff, Pamela & Ethan

GFPD's Winter 2013 President's Letter

As most of you know, the Global Foundation for Peroxisomal Disorders (GFPD) has become our second family since Ethan's diagnosis and we are very involved with the organization. I feel honored to serve on the GFPD Board of Directors as the Registry & Support Group Coordinator. We are a completely volunteer ran organization and all of our Board of Directors are parents of children (living or deceased) impacted by PBD-ZSD.

I'd like to invite you to take a few minutes to read GFPD's Winter 2013 President's Letter and check out what we've been doing this year.

November 24, 2013

Physical Therapy - November 21, 2013

When Ethan turned 3 years old his therapy services through Early Intervention (EI) ended and in August when he started preschool these services were for the most part transferred to the school setting. While he still receives similar services at school, the amount and goals of his therapies are slightly different, and we felt that Ethan would benefit from additional outpatient physical therapy and speech therapy. So Ethan has two physical therapists, Ms. Angie who works with him at school and Ms. Lindy who works with him at the hospital. Although these two ladies make him work hard, I think that they are probably his favorite therapists because they not only let him move but encourage it! Our boy loves to move.

During outpatient PT on Thursday Ethan decided to show off and show us just how close he is to taking independent steps. To see Ethan's awesome moves click here.

We continue to pray for at least 5 independent steps by Christmas. We are so proud of Ethan and are so thankful to his amazing therapists who continue to push him to learn and achieve new skills. In my heart I believe that someday Ethan will walk independently.

 

October 13, 2013

Enjoying the beautiful weather - October 13, 2013

One of the local elementary schools is within walking distance of our house. We walked over there this evening to use their playground. Ethan loves walking outside!
 



Walking in the grass is a lot more work for Ethan, but it is a good workout for him, and we can take his helmet off! :) At the end of the video you can see his "almost" steps. :)
 
 



October 10, 2013

An Amazing Sisterhood - 100 years of Alpha Chi Omega at Millikin University

I graduated from Millikin University in 2004. During my college years I was involved in a number of different organizations and was also proud member of the Big Blue Cross Country and Track teams. During my freshman year at Millikin I decided that I wanted to become involved in Millikin's Greek Life and in the Spring of 2001, I became an initiated member of Alpha Chi Omega. Most people who know me know that I am, and have always been, far from the sorority stereotype portrayed on television or in the movies, but a sorority girl I am.

The women that I met during my four years as a collegiate member of Alpha Chi Omega came from different backgrounds and life experiences, and I am proud to say that very few fit into the sorority stereotype -- they were so much more! Although I was involved in sports and several other organizations on campus, I lived with these women and they truly became my family. While I will admit that as the years have passed I have not remained as close to many of these amazing women as I wish I had, we will always a special bond.   

This past weekend was Millikin's Homecoming. 2013 also marks 100 years of Alpha Chi Omega on Millikin's campus, so there were several special Alpha Chi Omega events during the Homecoming weekend. Saturday evening Jeff accompanied me to our chapter's Centennial Celebration Banquet. Shortly after we arrived I was introduce to a fellow Alpha Chi Omega sister, Mary C. I have spoken with Mary a number of times online through our alum network, but this was the first time I had met her face to face. Mary lives in Florida and became an Alpha Chi Omega in the 1960s. Although I had not met Mary in person before Saturday evening I already knew that she was an amazing women. Over the last couple of years she has become a huge champion for Ethan and has been following our family's PBD-ZSD journey.  

After being introduce to Mary and a fellow Alpha Chi Omega sister from her "era" and a round of hugs Mary handed me an envelope. I planned on opening it later, but she encouraged me to go ahead and open it. Inside I found a handmade card. On the outside it read "Alpha Chi Omega." On the inside was the following message:
True to the promises invoked in our Alpha Chi Omega Symphony...
We the Upsilon Initiates of 1962 - 1967 herby send forth the chords of
Love, Unselfishness, Sincerity on behalf of
The Global Foundation for Peroxisomal Disorders
 
May the children and families representing the Foundation accept this gift, continuing to exemplify the attributes of courage, strength, love, hope and friendship as set forth by the women of Alpha Chi Omega of every generation.
 
With Support and Hope,
Alpha Chi Omega Alumnae
Initiation Classes 1962-1967

Enclosed was a $500 check made out to GFPD in honor of Ethan!

I was so completely blown away and I literally burst into tears! The generosity of women who had never met me or Ethan yet have fallen in love with him and wanted to show their support of my GFPD family left me in awe. Even now it seems a bit unreal. My Alpha Chi Omega sisters are truly amazing women and the very special bond we share is one that bridges the many generations that are united through this amazing sisterhood. 
 
After I pulled myself together we had a wonderful evening, visiting with friends that I haven't seen in years and wishing that many who weren't able to make it where there with us. It was a wonderful evening and I consider myself blessed to be an Alpha Chi Omega.
 
 

September 23, 2013

"Bigger Than the Odds" by Matt Vollmar and The Great Romance

Have you heard the song "Bigger Than the Odds" by Matt Vollmar and The Great Romance?
 
 

This song is inspired by baby Corey. You might remember that Corey is the first (and so far only) girl that has received flowers from Ethan. Corey was born with PBD-ZSD and only spent a very short time here on Earth before being healed forever in Heaven. Her picture is the last one displayed in the video. Corey's life and legacy of love and faith continue to impact people everyday. I consider myself blessed to know this amazing family and call them my friends.

When you hear this song would you please consider praying for Ethan, our family, and all families who have been changed forever because of PBD-ZSD? Thank you!

September 22, 2013

September 22, 2013 - Ethan walking outside!

This has been a great week for Ethan and his walking --- he did amazing during outpatient PT on Monday and then during PT at school on Friday, walking farther than he has ever walked before. Today after church he walked all over the place. In the foyer, sanctuary, and down the hall past the church offices. This evening we had our fall family cookout and Ethan showed off again. We even got a little of it on video.

video



September 1, 2013

Look who is "walking" now! - September 1, 2013

So, there must be something special about Labor Day weekend. It was Labor Day weekend last year that Ethan began crawling on hands and knees. This weekend he began "walking." Prior to this weekend he would only walk a step or two with his walker. Today he walked across the room!

We are so excited!


August 20, 2013

A great PT session!

This afternoon Ethan had his first "official" outpatient physical therapy sessions. Now that he has started preschool he will have PT at school but we know that he will need the extra help/support that he will get through weekly outpatient therapy in addition to what he will receive at school. We are also glad that we will be able to continue working with Ethan's PT, Lindy, who has been with Ethan since he started the STEPS program in August 2012. It is great that she knows Ethan, has been working with him a while, and she can help his school PT understand more about Ethan -- what works, what hasn't, his strengths, what he continues to struggle with, etc. and they will be coordinating in some ways to make sure that we are all working to help Ethan reach new gross motor milestones.

Today was Ethan's first day using the parallel bars. He had a great session. This boy really wants to walk, although I am pretty sure that once he gets the hang of it he will be running, not walking.


August 14, 2013

Ethan's First Day of Preschool - August 14, 2013

First, I have to admit that early in this journey I wasn't sure that we would ever see this day. Ethan's preschool experience isn't anything like most preschoolers, but we are here. We made it!

It was a very emotional morning for Ethan. Ethan cried ALOT! Jeff took a half day to be with us. Ethan has to wear a helmet at school because he falls over frequently due to his seizures. We just got the helmet on Friday so it is going to take a while for him to get used to it.
 
We met his teacher and the teacher aids for the room and the PT, SLP and Nurse also stopped by to say hello. Ethan will be receiving PT, OT, Speech & Feeding, Hearing, and Vision services at school. Hopefully these will start next week. Once the therapies begin he will have a lot more structure to his morning, which will be good. The teacher also began collecting the data needed to prove that Ethan needs a one-on-one aid. Today there were 4 kids in his class but by the end of September there will be 7 kids. His best buddy, Mason, will be joining him in a few weeks.
 
Here are a few pictures from today.










It's time to go home? Awesome!
 
 

August 6, 2013

2013 GFPD Family & Scientific Conference - Lincoln, Nebraska

Our family has been looking forward to the 2013 GFPD Family & Scientific Conference since we left the 2012 conference. It is the one week out of the year we get to spend surrounded by other families who "get it" and understand this diagnosis/journey/life. We are blessed that in addition to families who have been forever changed because of PBD-ZSD, many of the top PBD-ZSD specialists from North America attend and get a chance to present their research, share what they have been doing the past year, what they are hoping to do in the next year and interact with our families! These specialists are truly "our doctors/scientists" and we love them and consider them part of our GFPD family. Our GFPD family has also expanded in the last couple of years to include some amazing ladies who

Thursday, July 24th
We left our house at 6 o'clock in the morning for the journey west. Ethan did amazingly well, all things considered. We arrived in Lincoln, NE around 3:30pm. After getting settled into our room and resting a bit we ventured out and were pleasantly surprised by how many other families where already at the hotel. We got to visit with a few and then had dinner. It was just a very laid back afternoon and evening.

Friday, July 15th
In the late morning and early afternoon I was able to help with some of the last minute details/touches that needed to be completed before registration began at 4pm. Not only do I enjoy serving/helping but when you are with friends it makes it even more enjoyable! We did take a short lunch break and the three of us headed out to see what we could find to eat in Downtown Lincoln. We ended up getting burgers and fries at 5 Guys. Neither of us had every eaten at a 5 Guys. It was really good -- definitely not healthy, but it was delicious.

Around 4pm families slowly trickled down to pick up their registration packets and many mingled and visited while we waited for our opening dinner/session. The meal was excellent but being in the company of so many of our GFPD families is what made it really special. The first presentations of the conference that evening were filled with hope as well. We still don't have a cure, and we need better treatments, but progress is being made.

Check out the 2013 GFPD Family & Scientific Conference Opening Video!


After dinner GFPD presented monetary grants totaling more that $100,000 to doctors/researchers who are working on studies related to PBD-ZSD. You can read more about this on the GFPD website. This is just the beginning, but at least it is a start. GFPD needs to continue to be able to raise money for PBD-ZSD research. This disease is rare and with so many funding cuts it really does fall on us as an organization, our families and friends to raise the funds that our doctors/researchers need to keep their work going.

Here are some pictures from Friday night's dinner and opening session. You might notice that the kids didn't really care about the presentations.











On your mark, get set, GO!

Watching these kiddos play "together" was so good for my heart. It was in our own special way so "normal."


Thankfully the childcare room was available on Saturday, Sunday, and Monday so that parents could attend the conference sessions without the kiddos.

Saturday, July 27th
We began the morning with an attempted blood draw for Ethan. Several children at the conference needed baseline blood work done as part of enrolling in the Betaine trial. Ethan is not part of the trial since he has been taking Betaine since October 2011, however a blood sample can still be useful to some of the other researchers - specifically Mayo Clinic who is collecting data for the newborn screening for ALD & PBD-ZSD and the Kennedy Krieger Institute/Johns Hopkins labs which specialize in PBD-ZSD research/testing. So, although we don't love making Ethan give blood, we believe participating in these type of studies is important. Ethan however didn't want to give any of his blood away, so after several attempts we told the nurses we were done and that we were sorry they couldn't get any. We agreed that we would try again on Tuesday when we took Ethan to Omaha Children's Hospital for his clinic visit with the doctors.

After we feed Ethan his breakfast and got him calmed down we dropped him of at the childcare room and headed to the morning conference session. The ladies in the childcare room love these kiddos. It provided respite for the families with living children with PBD-ZSD as well as those who brought their healthy typically developing children with them. Every time we went to check on Ethan he had someone wrapped around his finger. He can really put on the charm! It was also really nice to see so many of the same people who have been there to volunteer during the last two conferences as well. They remembered Ethan from the 2011 and 2012 conferences.

Sessions/Topics for Saturday included:
  • PBD-ZSD 101 [Dr. Nancy Braverman, McGill University & Dr. William Rizzo, University of Nebraska Medical Center]
  • ALD/PBD-ZSD Newborn Screening Update [Ann Moser, Kennedy Krieger Institute]
  • PBD-ZSD Research Initiatives & IP Stem Cell Updates [Dr. Joseph Hacia, University of Southern California]
  • PBD-ZSD and Bone Disease [Dr. Eric Rush, University of Nebraska Medical Center]
  • Special Needs Trusts Webinar [Joshua Brothers, Dussault Law Group]
Saturday night was also Parent's Night Out! Child care was provided for a couple of hours and Jeff and I had a wonderful dinner at a local steakhouse. We spoiled ourselves a bit and enjoyed the nice dinner out all by ourselves--- we don't do that very often.

Sunday, July 28th

Sessions/Topics for the day included:
  • Chemical Chaperones to Treat PBD-ZSD with PEX 1 G843D Mutation [Gillian MacLean, McGill University]
  • Research Update: Betaine Clinical Trial [Dr. Nancy Braverman, McGill University & Dr. William Rizzo, University of Nebraska Medical Center]
  • How Diosmetin Works for PEX 1 G843D Mutation and Drug Company Partnering [Catherine Argyriou, McGill University]
  • Understanding PBD-ZSD: Systems at Work in Fruit Flies and the Clinic [Dr. Michael Wangler, Baylor College of Medicine]
  • A New Mouse Model for Zellweger Spectrum Disorders: PEX 1 G844D Webinar [Dr. Steven Steinberg, Johns Hopkins University/Kennedy Krieger Institute]
  • The Fruit Fly Model of PBD-ZSD [Dr. Richard Rachubiniski, University of Alberta]
It was a busy day. We learned of a new possible treatment that may help Ethan and other kids with PBD-ZSD. The chemical/drug is classified as a flavonoid. The specific flavonoid that has showed promise in a petri dish in the lab is Diosmetin. There is a possible OTC supplement that may be used in the future to possibly treat kids with PBD-ZSD. We have a number of things that we need to get figured out with Ethan -- we've got to try to get these seizures under control and during the conference he was having a lot of excessive urination, and we possibly have some additional adrenal issues that need to be addressed -- but when we get that all worked out we are going to be working with Dr. Braverman to see if we can begin treating Ethan with this supplement.

In the petri dish in the lab, PBD-ZSD cells with the PEX 1 G843D mutation(s) saw increased peroxisome function when treated with Diosmetin. More significantly was that when these cells were treated with a combination of Betaine and Diosmetin there was a larger increase in peroxisome function then when treated with either compound by itself.

Will these drugs increase peroxisome function in human beings? The honest answer is NOBODY KNOWS. Dr. Steinberg is going to start treating "our PBD-ZSD mice" with Diosmetin sometime this fall. Hopefully he will have good news to report by the beginning of 2014!

Ethan enjoyed another fun day in the childcare room during the conference sessions and in the evening we went to the Country Club of Lincoln for dinner and swimming with our whole group. Since it was only in the mid-70s most people, including us, didn't swim, but we did have a great dinner and enjoyed visiting with our friends.

Ethan and Ainsley

Ethan, Emily, Jeff & Landon

Ethan, Ethan, and Landon

Our GFPD Family
Monday, July 29th
Sessions/Topics for the day included:
  • Town Hall/GFPD Family Meeting
  • Hearing Issues and Technology Considerations [Jeff Simmons, Boys Town National Research Hospital]
  • Pediatric Hospice & Palliative Care [Sue Bace, Omaha Children's Hospital & Medical Center]
  • Educating Students who are Deaf-Blind and their Teams [Jodi Morgan & Jill Bohlen, Lincoln Public Schools Deaf-Blind Team]
  • American Sign Language (ASL) 101: Signing in the home, school & community [Ashley Maple]
  • Group Session facilitated by Marlyn Minkin, LMFT/LMHC
Today was an emotional day. We new it would be the last day that many of us got to spend time with one another and we covered some pretty heavy topics. The closing group session was heart wrenching but so amazing. We sat in a circle with other families with experiences all along the PBD-ZSD journey and we shared our hearts, our struggles, our fears, and our love for one another. My GFPD family includes people from different ethnic, cultural, socioeconomic and religious backgrounds. There are many things that we may never see eye-to-eye on or agree upon, but one thing is for sure, this group is FAMILY and we LOVE each other and each other kids! Thanks to our GFPD family Ethan has lots of "aunts" and "uncles."

Ethan had another great day in the kids room. When we picked Ethan up after the final session we had to start saying our goodbyes to all of the amazing childcare workers. Ethan had an amazing three days with the other kids and the volunteers. We would not have been able to experience the conference like we did without them. They were wonderful with all the kids and since the room was just a few steps away from where we were meeting we could check in on then whenever we wanted. I think Ethan had a blast. What do you think?









After we attempted to pull ourselves together we had a short break before heading to the Lincoln Children's Museum where we had a Memorial & Balloon Release Ceremony followed by dinner and playtime/visiting at the museum. All of the families who were at the conference who have/had children (living and deceased)  impacted by PBD-ZSD were recognized and the names of all the children in our GFPD family who have passed away since the 2012 Conference were honored as well. So many children. My heart just ached.
 
Here are a few pictures:










 




A balloon? Really?

Wow, this is awesome!

And it tastes good too!


Following the ceremony we headed inside and had a wonderful dinner and time visiting with our GFPD family. Lots of families enjoyed the Children's Museum as well. I visited while Jeff pushed Ethan around in the stroller exploring the place. I seemed like a very cool place for kids.

We stayed and closed the place down! It was so hard knowing that we wouldn't get spend anymore time with so many of our friends who would be leaving in the morning.

Tuesday, July 30th
We left the hotel before 7am to head to Omaha Children's Hospital for Ethan's DEXA (bone density) scan and clinic visit. Shortly after getting to the hospital we ran into another one of our families and we all headed down to radiology together.

After a short wait Ethan was called back for his DEXA scan. It is somewhat like an x-ray. The tech was really good and had a toy that Ethan loved and it was over in no time. After that we headed upstairs to the lab for another attempt at getting blood drawn. It was a huge mess! No one knew what tests needed to be ran, how much blood was needed, etc. All of this time Ethan is fasting of course and getting hungrier and grumpier by the minute. Eventually we were told just to go up to our clinic visit and hopefully they would figure it out and send someone up to take his blood.

So, we headed to the clinic and checked in. We waited a while in the waiting room before being called back. Then we waited a lot longer in the room. Never a good idea! By the time it was 10am and we still hadn't been seen and the lab hadn't come up to draw labs we told the nurse that we had to feed Ethan! So, we did. While we were feeding him, Dr. Rush came in and explained Ethan's DEXA scan to us. Ethan's bone density is not good -- borderline osteoporosis. Kids with PBD-ZSD have bad bones, because just like every other system in the body, the skeletal system is impacted by the fact that Ethan's peroxisomes don't work right. BOO! At this time we aren't going to seek any type of bone strengthening treatment besides making sure he has proper nutrition, Vitamin D supplementation and that we try to get Ethan to do as much weight bearing as possible.

After meeting with Dr. Rush we hung out a bit, found out that we had some good friends hanging out in the exam room next to us, so we visited until the rest of the specialists came to see us. The visit with Dr. Braverman and Dr. Rizzo was good. We know that we are doing what we can for Ethan. They had some suggestions about a possible switch of seizure meds, but other than that they seemed to think that there wasn't a lot of other things we needed to do. It has been a big year for Ethan since they saw him last. He's made some great gross motor gains but we've had additional medical setbacks as well -- Ethan is now steroid dependent due to his adrenal insufficiency, his hearing loss has progressed, he became g-tube dependent, and he now has seizures. YUCK! On the positive side though since last year's conference Ethan has learned to crawl on all fours, pull up and climb onto the furniture, pull up to standing, and cruising! Sometimes it is hard to remember the good things because while the progress is no where near normal and is happening VERY VERY VERY slowly, at this point Ethan is still making progress and learning new stuff. So we will rejoice in that and continue to address the challenges as they occur with the best of our ability.

Dr. Rizzo, Dr. Braverman, and Ethan. Yes, Dr. Braverman is tiny, but wow in this picture Ethan just looks HUGE!

After our appointment with Dr. Rizzo and Dr. Braverman we waited to see another doctor, a pediatric endocrinologist and also get news about whether or not we would get to see a pediatric orthopedic as well. While we waited we visited out in the hallway with the therapy dogs.



Then we headed back into our room. Ethan was getting a little restless.



We also had to say goodbye to our friends next door since they were leaving for home (OK) once they were done with their appointments.
"Aunt" Melissa and Ethan.
We met with the pediatric endocrinologist and he thought that Ethan's daily steroid dose was probably correct but wished that we could do some 8am Cortisol and ACTH tests, but since it was already late morning that just wasn't possible. We mentioned to him about the excessive urination and the seizures and he felt that there might be a correlation with Ethan's adrenals but he couldn't be sure. He was really nice and provided us with information that we will bring up with our local pediatric endocrinologist when we see her in a week or so.

While we were meeting with him the nurse was trying to get a hold of the pediatric orthopedic. At first we thought we might get to see him next, but it turned out we couldn't see him until later in the afternoon, so we headed down to the cafeteria for lunch. We had almost finished lunch when the Burdick family walked into the cafeteria so we stuck around and visited with them while they ate and then we all eventually made our way upstairs to the clinic waiting area to wait for our respective appointments. Several other GFPD families were waiting, and so we had a good time visiting while we all waited.

Eventually, we were called back to see the pediatric orthopedic. He had seen Ethan's x-rays and examined Ethan's foot. He didn't believe their was a fracture but agreed that it must be sore if Ethan was no longer bearing weight, pulling up, cruising, etc. He instructed us to continue to keep him in his AFOs as much as possible and if he didn't start bearing weight on it again in the next week or two to have our primary doctor back at home reorder x-rays just in case something was missed the first time. The doctor was great, and we hope that his connections will be able to get us referred to the pediatric orthopedic at the Children's Hospital in Peoria. He even knew where Peoria was -- his daughter graduated from Bradley University. :)

After seeing him we were finally done with all of the doctors! Yippee! When we came out to the waiting room there were still a number of GFPD families waiting. We hung out and visited. Why not? This was really our last chance to spend time with these guys. I especially enjoyed the time we got to spend visiting with the Butalla family.

Here are some pictures of Ethan and his buddy, Sam, just chilling out in the waiting room.

"Another picture? Come on!"


 
I think Sam's expression says it all --- "Ethan, dude! What do you think you are doing?"

We spent nearly the whole day at the hospital but the good company made the time go by quickly. However, it was time for us to head back to Lincoln and the hotel but not before we made a quick stop at Toys R Us.

After getting back we decided to take a walk and find dinner, so we went to Qdoba Mexican Grill -- neither of us had ever ate there and brought it back so we could let Ethan play in the room. After dinner we started packing and called it an early night since we needed to be up and moving early.

Wednesday, July 31st
We left Lincoln, NE around 8am and got back to Decatur, IL around 6:30pm. While we were so glad to be home and out of the car, we were already missing our GFPD family!

*Once again I would like to say THANK YOU to all who donated your time, talents, and treasure to help our family attend the conference without having to worry about the cost of transportation and lodging. You are a true blessing to us. Thank you for your continued love, support and prayers.