December 31, 2012

"The Mom I Would Have Been" by Dana Nieder

A GFPD friend/family member shared this today. This post, speaks of so many of the things that go through my mind on a daily basis. While the Lord has not yet added to our family and I don't have the "normal" mom experience and while I'm not sure when if every I will -- we continue to pray that someday the Lord would add to our family via adoption -- this mom beautifully captures what is going on in my heart.

The Mom I Would Have Been by Dana Nieder

December 30, 2012

Christmas 2012

Our family ended up having several Christmas celebrations, leading to nearly a week of presents, food and family. As we celebrated the birth of our Savior, my mind took me from the manager to the cross. Although I will readily admit that I don't understand everything, and I often have questions, I know that God is with me and loves me and loves my son even more than I can fathom.

The Christmas season reminds us that God loved us (humanity) so much that the story that He gave of himself and that His son who was born in the most humble of settings through the most unusual and completely supernatural way grew up to be the man who died on the cross, and rose again, defeating death so that we may have eternal life and relationship with Him!

But I trust in your unfailing love; my heart rejoices in your salvation. I will sing the Lord’s praise, for he has been good to me.
Psalm 13:5-6
Homemade Christmas cookies. Not pretty, but they taste okay!

Christmas Eve at Jeff's parents' house. Just visiting, opening gifts would have to wait.

Four generations of Marshall men

Christmas Day at my Grandparents' House

Christmas with the Jeff's side of the family on Saturday, December 29th.


December 24, 2012

Our 2012 Christmas Letter

Dear Family & Friends:
It has been a busy year for the Marshall family. We continue to be blessed that Jeff has his job at Caterpillar, which keeps him busy.  He traveled out of town for a couple of business trips, leaving Pamela and Ethan to fend for themselves a few times, but they managed. Pamela has continued her role as a stay at home mom, taken on more responsibility with the Global Foundation for Peroxisomal Disorders (GFPD), and continues to network with families of children with special needs and/or complex medical issues both at the local and state level. Ethan has been learning a lot, and while he continues to fight PBD-ZSD each day he is making progress in his own way and time.

Here is a recap of our year:
January: Ethan was hospitalized for RSV, learned to put the balls in his toy dinosaur all by himself, and began to combat crawl.

February: Ethan went to his first college basketball game (Millikin University’s “Pink” game that raises funds for breast cancer research), began being able to stand at the couch for a few minutes at a time, and played in a ball pit for the first time.
March: We met new friends at the Down Syndrome Infant Playgroup in Springfield; visited the Scovil Zoo park for the first time; lost a hearing aid; Ethan got his stander; started using the signs “eat” and “more” together, and Jeff traveled to Brazil for work.

April:  We attended Ethan’s cousin Cora’s second birthday and got to play in a new park; celebrated Easter; Ethan transitioned from his belly to sitting for the first time, and had play dates with friends.
May: We held the first annual Pancakes for PBD event to raise money to help us and other families impacted by PBD-ZSD attend the 2012 GFPD Conference - we couldn’t have pulled it off without the help of our friend Pat Drum and all the amazing volunteers; Ethan gave flowers to a girl for the first time when we met little Corey  and her mom Jeanine, a family from southern IL impacted by PBD-ZSD; began using his walker, with a sling, and started to be able to move himself around a little bit in it; broke a hearing aid; got a new prescription for his glasses (that he still won’t tolerate); and had to start having his right eye dilated every morning so that he would forced to use his weaker, left eye. We also had to said goodbye to little Corey who was called home to the arms of Jesus.

June: Took our first family trip to Allerton Park and saw a double rainbow on the drive home; went for a weekend in Clarksville, MO, where we met up with friends for one day and spent part of another day in Hannibal, MO, the boyhood home of Mark Twain; Pamela had all four wisdom teeth removed and developed dry sockets; and Ethan’s first two top teeth began coming in at the same time. Our family was also one of the recipients of the funds raised by the Mt. Zion Community Ice Cream Social. This blessing allowed us to pay some medical bills and purchase a walker for Ethan.
July: We celebrated Ethan’s 2nd birthday; Ethan got an indoor/outdoor swing, that he loves; began being able to stand with support for longer periods of time; and flew for the first time as we left for the 2012 GFPD Conference in Florida!

August: We had an amazing time at the GFPD conference. Thank you again for everyone who donated to GFPD for making this possible.  In addition to spending time with other families that understand the PBD-ZSD diagnosis, Ethan was seen by the top PBD-ZSD specialists in North American and the decision was made to increase the dosage of betaine Ethan takes daily (the hope is that the medicine will increase the function of Ethan’s peroxisomes). Ethan began pulling up and crawling up onto the furniture; and started “school” – a Tuesday and Thursday morning program called STEPS that is for children with special needs.
September: Ethan began crawling on his hands and knees; saw the endocrinologist for the first time and started taking a low daily dose of steroids due to treat adrenal insufficiency; and began to be able to “walk” behind a push toy while using it to support his upper body.  We also said goodbye to Pamela’s Great Grandma Molenhour who went home to be with the Lord.

October: Ethan pulled to a stand in his crib for the first time; began cruising along the furniture, got his new green walker; was a dinosaur/dragon for Halloween; and we got the okay to cease the daily eye drops.  We found out there was a slight improvement in Ethan’s VLCFA levels after a month of being on the higher dose of betaine, and we said goodbye to Jeff’s Grandmother Marshall who went home to be with the Lord.
November: Ethan learned how to play peek-a-boo; got his first haircut; had his first sedated hearing test (which  showed additional  hearing loss so his hearing aids were turned up); pulled up to stand at his Grandma Marshall’s piano all by himself and started “playing”; and pulled up on the baby gate for the first time.  We praised the Lord for getting to celebrate our 3rd Thanksgiving with our sweet boy.

December: Ethan went back on reflux medicine after several weeks of very little eating and drinking, and it appears to be helping; and despite fighting a cold for nearly a month has been in good spirits and has learned to put the coins in his treasure chest toy all by himself (we’ve only been working on it since July J).
As we reflect upon all the things that have happened this year we know that through all of the triumphs, struggles, celebrations, achievements, joy and sorrow, that the Lord has never left our side. We have felt His presence in so many ways this year. Although we won’t pretend to always understand what He is up to or has planned, we hold on to the promise found in Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Thank you to everyone who has kept Ethan and our family in your thoughts and prayers. They are greatly appreciated and we ask that you would continue to lift up our family as we continue this journey that the Lord has for us.

It is our prayer that during this Christmas season that you will feel His presence and that as we begin 2013 it will be a year in which we all grow closer to the Lord, and allow Him to work in new and wonderful ways in our lives.

Merry Christmas and Happy New Year,
Jeff, Pamela & Ethan Marshall
*Extra Special Prayer Request
Those who follow my blog know that we have had many little ones from my GFPD family pass away this year. While we had the honor of attending the memorial service for little Corey, there were many that due to the distance we were unable to go and embrace these loved ones in person. I would like to ask that you say a special prayer for all of my friends who are spending their first or another Christmas without their child, and for all families who live with the reality of a diagnosis that will always make them wonder, even while their child is still hear on Earth with them, if this will be the last. Thank you. 

December 11, 2012

Sometimes you just have to snuggle

I will admit, I look forward to Ethan's nap time. It isn't that I don't love my son or love being with him, because I do, but I think I can speak for most parents that most of the times babies and toddlers (and even big kids) just need a nap.

Ethan's nap time is typically the time in which I can get things done --- dishes, laundry, take a shower, do work for GFPD, and I admit that sometimes I just sit on the couch and relax for a bit. Today was a day that I had things planned for nap time. I've been working on a project for GFPD that needed to be completed, but Ethan didn't want to sleep today.

I let him cry for a few minutes before I went to rescue him when it became obvious that napping was not on his agenda. So, we curled up on the couch with a blanket and a silly Hallmark or Lifetime Christmas movie (don't remember which) and snuggled. Ethan isn't a snuggler, typically, so I just enjoyed the moment. I sang to him -- it was probably a good thing he had his hearing aids out -- and I told him how much I love him. We rocked a little, and I prayed for the millionth time for the Lord to heal my baby.

As Ethan fell asleep in my arms, I decided not to put him down. I knew I was right where I needed to be. Somehow I was able to successfully maneuver into a somewhat comfortable position while keeping Ethan asleep and there we were, for over an hour. My precious toddler, who is still truly a baby both inside and out, resting on my chest. Today nothing got done during nap time and that is okay. I know the reality of this disease, and that someday it will not be more time to get things done that my heart and soul will ache for.

I am going to steal this quote from the St. Jude's Children's Research Hospitals commercials - "Give thanks for the healthy kids in your life, and give to those who are not." So today, and everyday, please hold your kids (the healthy and the not so healthy ones) a little tighter and make sure you tell them how much you love them and thank the Lord for the time that you have with them.

And if you happen to have the ability to give a little extra to help make a difference for kids in need this Christmas season please consider doing so. There are many wonderful organizations that you can partner with to provide Christmas gifts for children whose parents' aren't able to this year and of course there are organizations such as St. Jude's Children's Research Hospitals, the Global Foundation for Peroxisomal Disorders (GFPD) and so many others that are trying find treatments and cures for children facing life threatening illnesses.

December 9, 2012

So proud!

As you know it has been a rough week for me. In addition to the two kids who are now with Jesus, there is a very little one, named Cash, who is presenting with severe PBD-ZSD (still commonly called Zellweger Syndrome) who needs our prayers tonight. Cash is currently in the hospital and his parents' have set up a Facebook page for him, in which they are sharing updates and prayer concerns. Please keep the Tweedy family in your prayers.

So, in the midst of all this sorrow, Ethan decided to brighten up our day. Tonight he decided that he was finally ready to start putting the coins in his treasure chest all by himself! We have been working on this for nearly six months. It may be a simple task for a typically developing child, but for kids with PBD-ZSD these are the type of things that we celebrate and shout for joy about! The fine motor and visual skills needed to do  something like this are things that Ethan has to work so hard to be able to obtain. This made our day!

December 8, 2012

Two more PBD-ZSD kids in Heaven

Two little ones with PBD-ZSD have recently left the arms of their parents for the arms of Jesus. Jackson, age 5, from Georgia passed away yesterday and today we got word that Millie, age 6, from Scotland passed away last week. My heart, and all the hearts of GFPD families across the world, are breaking tonight.

When we found out a couple of days ago that Jackson's homecoming was drawing near I wept. As I cried, Jeff held me tight and I cried, we prayed, and I cried some more. While my heart breaks whenever I hear of another one of our GFPD kid's passing, it is tougher on me when they are a family that I have met in person, and of course as I mourn for my friends' loss I also mourn for us and the reality of this ugly disease called PBD-ZSD that will someday take Ethan away from us is undeniable.

Jeff, Ethan and I had the pleasure of meeting Jackson's mom for the first time at the 2011 GFPD Conference in Nebraska, and then this summer at the 2012 GFPD Conference in Florida we got to visit again not only with Angie, but we also got to meet Jackson and his grandparents. Angie and her husband Travis loved Jackson with all of their heart and while I know that they know without a doubt that Jackson is with the Lord and that they will see him again, this hope does not diminish the pain that I can only imagine that they are feeling right now.

I've never met Millie's parents in person, just online, but my heart still broke when I heard the news today. I'd like to ask a special pray for their family as in addition to Millie's parents and the other adults who will miss her very much, Millie has several siblings who are mourning the loss of their sister as well.

I love my GFPD family and I cannot imagine this journey without them and while the majority of our sharing is online or on the phone, aside from the few short days of the GFPD conference when a number of us are able to meet together in person (all the time wishing that ALL of our families could be in attendance), we really do live this life together. This summer as we gathered and listened to the families who have been on this journey much longer than us, I almost had to hold back tears as they shared about the days before the internet and free long distance calls. When I start to think about how isolating it can be even now when it is estimated that only 80 kids are born with PBD-ZSD in the U.S. each year, I truly don't want to think of what it would be like if there was no real way for me to connect with another parent that "gets" it. We laugh, we cry, we share frustrations, challenges, and triumphs and in times like these we mourn together and for one another. Regardless of where along the PBD-ZSD our families are personally, we grieve and our hearts break when we learn of another family whose little one has passed away.

Jackson, March 3, 2007 - December 7, 2012

Millie, November 21, 2006 - December 1, 2012

Prayer Requests
  • Please pray for Jackson and Millie's families.
  • Please continue praying for all families who have lost children to PBD-ZSD and for those whose children are still fighting the PBD-ZSD battle day by day.
  • Pray that real treatments and a cure will be found! Please don't stop praying for miracles! We haven't, and although we know it may not be God's plan to miraculously heal Ethan, I'm not going to stop asking, but even if that doesn't occur, I will not turn my back on Him.
  • Pray that those who do not know the Lord would come to know Him and the peace and assurance that only comes from knowing Him as their personal Savior.
  • Pray that the Lord will continue to work in our lives and that He will give us the wisdom, strength and patience needed to be the parents Ethan need.
  • Pray that our lives would be a testimony and used for the Lord's purpose and glory.

December 2, 2012

A tough week or so

It has been a bit of a tough week around our house. This past week Ethan's "eating and drinking strike" hit a new all time low and we started off really thinking that it might be time that we have to start seriously talking with the doctors about when the right time to place a g-tube would be. Ethan has always had "issues" when it comes to eating and drinking, and has gone through numerous "phases" when he will just stop eating or drinking, but never really both at the same time for any real length of time. We know that if he stops drinking we can keep him hydrated and nourished by spoon feeding and if he stops eating we can keep him hydrated and nourished through his bottle -- but what is scary for us is when he refuses to do either. This is what we were facing this past week. Ethan hasn't really eaten well in months, but over the last week or so it had just gotten worse and worse and worse.

So, on Monday I began documenting all of his intake again. It is one thing for us to "feel' like his intake is down, but we really needed to know exactly how much, etc. I began talking with my network of special needs mommas -- local friends as well as my GFPD family. With their help we talked through lots of the issues that Ethan has about food, the cognitive, fine motor and oral motor skill delays that impact Ethan's ability to eat, the stress of the situation, his behavior during meals, and possible things to try, etc. The majority of children with PBD-ZSD have some issues with eating, although not all. Most of the things mentioned were things that we had already tried and/or are things that we do not have the ability do with/for Ethan at this point in time. The brainstorming of ideas and the support that I got from these women was amazing as they shared their own struggles and successes with something that so many take for granted ---- feeding your child. One thing that came back up several times was the concern that Ethan might be having reflux. Ethan has been off of his reflux medicine for nearly a year, but by Wednesday we were ready to do almost anything, so we put him back on it. We knew it couldn't "hurt" to try. I was sure it wasn't reflux. We've never had any real sign of reflux. Ethan was put on the medicine shortly after birth because of his difficulty eating and gaining weight, but he's never been a kid that really spit/threw up so we took him of of it nearly a year ago since he was eating so well. While there is no easy way to know if Ethan has indeed been suffering from reflux, we do know that by Friday Ethan seemed to be eating a lot better. Not great, necessarily, and his behavior in the high chair is still pretty horrible, but he was opening his mouth again for the spoon and even clapping his hands (signing "more") during meal time for the first time in weeks!

So, of course I feel like I need to pin a ribbon to myself that says "world's worst mom" because if it is indeed reflux then I could have been giving him medicine the last several months that would have given Ethan some relief, but minus some invasive testing that I do not want to put Ethan through, there is no way to really know, since he can not tell me what is wrong. Ethan's lack of communication continues to be one of the biggest daily struggles for me. He has no words, and very few signs -- he claps his hands, he can sign "eat" and "milk" although he does not use them often. So, besides crying there are very few ways for him to "tell me" what is going on. We continue to work with all of his therapists to try to give Ethan every opportunity to develop his communication --- sign language, talking, using objects, etc. but at this time we aren't seeing any improvement. On top of all of this is Ethan's newest "development" hair pulling. He is pulling his own hair so hard when he gets upset/frustrated/mad that he is pulling it out! Besides holding his arms and hands where he can't do it, which in turns makes him even more upset, we haven't been able to stop it. So, if you are someone who sees Ethan in person, you'll know why he is now missing more of what little hair he did have.

Thankfully, he is at the moment eating and drinking better. Still not great, but for at least the time being the scare seems to be over. We know that this will most likely continue to be a constant battle, but we feel so blessed that for now perhaps the reflux medicine has helped.

In addition to the really tough week or so in the feeding department Ethan is sick again! I got the call on Thursday while Ethan was at STEPS to come get him because he was feeling warm and was very flushed and lethargic. So I brought him home and he took a good nap and by the end of the night the yellow boogies were here in full force. We've been fighting them all weekend, and while at the moment it seems like we may be gaining ground in the boogie battle, we are far from winning the war.

There are so many frustrating things about the impact of PBD-ZSD on Ethan and our family and I will admit to having days in which I am completely overwhelmed by it all and on other days I think I've at least got it mostly together --- when Ethan gets sick, even with a common cold, the reality of PBD-ZSD hits me hard. In addition to all the challenges it causes Ethan and all the things that it steals from him and us as a family, I get so mad that a simple common childhood illness can very easily and quickly become disastrous for my sweet little boy. So, if you don't see Ethan and I again until Spring, you know why -- we are hiding from the germs. We are praying that this will be the winter that we are able to not be hospitalized. It isn't that we don't love the nurses on the pediatric  floor at St. Mary's but still, all things considered we'd really be okay not visiting with them this winter.

Since Ethan isn't feeling well he refuses to keep his hearing aids in, which is adding another layer of frustration to daily life in the Marshall house. With his hearing aids in he can hear pretty well, but without them he can't, and so hearing our voices, his toys, etc. aren't as enjoyable. I can't wait for him to feel better so that he'll keep those hearing aids in again! I want him to have access to the sounds around him.

Thank you for your continued prayers. We'll continue to keep everyone updated.

November 26, 2012

Asking for prayer

As you know eating and drinking has for the most part always been an on again off again struggle for Ethan. Right now we are going through another really rough patch. He seems to have NO interest at all in eating or drinking. We are very concerned about keeping him hydrated and properly nourished.

Please pray that we will find a solution.

Thank you.

November 22, 2012

Pulling up on the baby gate - November 22, 2012

Ethan is now able to pull up on the baby gate all by himself. If you try to forget about the possibility of him pulling it down on himself, you can hopefully understand why we are so excited because you can see that he is "almost" standing all by himself -- he is just using the gate for minimual support/stabilization! The stronger we can get his legs and core the closer he'll be to standing without any type of support and someday even taking steps on his own!

Thanksgiving 2012

I am so thankful that today we are celebrating our third Thanksgiving with Ethan. I remember all too well when we weren't sure if we'd get more than 1 Thanksgiving, Christmas, or even a first birthday.
While the reality of Ethan's PBD-ZSD diagnosis never leaves my thoughts, and everyday is a struggle for Ethan to learn and try to do things that so many others take for granted, I know that I am blessed to still be able to hold, snuggle and love on my sweet boy. The Lord is the author of Ethan's story and it keeps unfolding one day at a time. Only He knows how it will all end.
We headed over to Jeff's parent's house for Thanksgiving with his side of the family. It is the first holiday since Jeff's grandmother has passed away. While we know that she is in heaven with the Lord, it was still hard to not having her with us.
Ethan learned how to play the piano all by himself today!

Ethan didn't want to eat anything today. He wouldn't even open his mouth for lunch and wouldn't really drink anything either. So after lunch we went out in the beautiful weather. Ethan "walked" in his walker and then swung in the swing.

Since Ethan wasn't eating, drinking, or napping we had to cut the visit with family short and head back home. Thankfully Ethan took a nap and when he woke up we got some medicine and a little bit of his milk (Bright Beginnings Soy Pediatric Drink) in him.
Please continue to pray for us as we battle Ethan's eating and drinking on a daily basis. It can be very frustrating when something that is supposed to be so easy for a child to do is so hard. He seems to have no desire to eat or drink for the most part and is still very aversive to his high chair. Jeff holds him for medicine and meals at night, but during the day it is a real struggle for me to do meds and meals all by myself. Ethan ends up in tears and I'm almost there with him.
Thank you for your continued prayers.
Happy Thanksgiving from the Marshall family!

Prayers for my friends in China

I learned today that sweet Little Star has passed away. I met Star's mom through the GFPD about a year ago. Star's family lives in China. While I do not know if my friend shares my faith, I do believe that Star is in Heaven with the Lord. Please pray that if her family does not know the Lord, that they will come to know Him, and that they will find comfort and peace at this most devistating time and in all the days, weeks, months and years to come.

Little Star

November 20, 2012

Sedated MRI & ABR - November 20, 2012

3:30pm --  We made it -- so glad to be home!
7am - The radiology waiting room. Ethan has no clue how long of a day it will be.

We won't have MRI results for a few days, and even then it will just be from the ENT regarding the inner ear structure (we won't see the neurologist until January). The ABR went well, there has been some additional loss, but not enough to consider Ethan a cochlear implant candidate at this time. Recovery was hard -- lots of crying from our sweet boy and he was trying to remove the IV all by himself.
After being discharged from the hospital we headed over to audiology and they turned up his hearing aids for us, so he should be getting the amplification he needs. For those interested/curious where Ethan's hearing is now:
  • 500 Hz - 50 R/L
  • 1000 Hz - 65 R/L
  • 2000 Hz - 75 R/L
  • 4000 Hz - 70 R/L

Here is a picture to help explain where Ethan's hearing is without his hearing aids.


So, as you can see, without his hearing aids he is unable to hear most speech sounds. He may realize that we are talking to him, but just not be able to understand what we are saying, -- but that doesn't mean that we won't talk to him when he has his hearing aids out, etc.
Plus, it appears that he can still hear most of his louder toys even without his hearing aids, although we notice that when his hearing aids are out he typically puts one of his ears closer to the toys --- he is a smart boy! Thankfully, with his hearing aids on it can bump him back up into what they call the "speech bubble."
It has been a long day, and may be an even longer afternoon and evening. Thank you for all the thoughts and prayers.

November 18, 2012

"Lorenzo's Oil"

Today, I got up the courage to watch the movie “ Lorenzo's Oil” for the first time since Ethan was diagnosed with PBD-ZSD. I saw it in college years ago, although I can't remember what class we watched in in. 

The film is based on the true story of Augusto and Michaela Odone and their son Lorenzo. In 1984 Lorenzo came down with adrenoleukodystrophy (ALD), a rare inherited disease. Doctors said that he would lose all his functions and die within two to three years. Refusing to accept this grim verdict, the Odones set out on a mission to find a treatment for ALD and to save their child. In their quest for a treatment the Odones often clashed with doctors, scientists, and support groups, who were skeptical that anything could be done about ALD, much less by laypeople. Their relentless struggle tested the strength of their marriage, the depth of their beliefs, and the boundaries of conventional medicine. (
If you have never seen the movie, please consider watching it. Here is a link to a trailer of the movie. You can also learn more about the Odone family, the film, and this devastating disorder on The Myelin Project's website

While Adrenoleukodystrophy (ALD) [also known as X-linked Adrenoleukodystrophy (X-ALD)] is the disease that Lorenzo Odone had (he passed away in 2008 at the age of 30) and Peroxisomal Biogenesis Disorder - Zellweger Spectrum Disorder (PBD-ZSD) which Ethan has are different diseases which are caused by different mutations and inherited in a different way, they are related peroxisomal disorders and have many similarities.

I have to admit that while I cried a number of times, I made it through better than I thought I would. I took so many things away from the film, here are just a few:
  1. I am so thankful for how far science/medicine has come in the last 30 years.
  2. I continue to be amazed how far science/medicine still needs to go and how little is known about and/or can be done to treat so many diseases (like X-ALD, PBD-ZSD, and so many others).
  3. I will continue to be absolutely furious that there are boys who have been diagnosed early enough (before they become symptomatic) with X-ALD, that treatment with Lorenzo's Oil could possibly hold off the progression of the disease but they are unable receive this treatment because the FDA still hasn't approved it. There is an ongoing clinical trial but only around 75 to 100 boys are able to be involved in it at any given time --- and with budget cuts there is concern that the funding for the trial won't be available for much longer. To put this into perspective: X-ALD is estimated to have a prevalence rate of 1 in 20,000 individuals  which means that since there were just over 4 million children born in the US in 2008, that more than 200 people are born with X-ALD each year in the USA. While women who are the "carriers" of the disease and do not have the same types of symptoms that males experience, many women begin have a number of health issues later in life due to the disease. Lorenzo's Oil is not a cure, and isn't effective in stopping the progression of the disease in all boys, but it can provide a glimmer of hope for families and it just hurts my heart that all of the boys do not have access to something that could save their life! In addition to Lorenzo's Oil bone marrow and/or cord blood transplants are now options for some boys with X-ALD but again are the most effective if done prior to the boy developing the neurological symptoms (damage to the white matter in the brain.)
  4. I will continue to fight for the newborn screening that will identify boys with X-ALD and children with PBD-ZSD & DBPD! You can learn more about the fight for this newborn screening here
  5. I am so very blessed to be a part of The Global Foundation for Peroxisomal Disorders (GFPD) and that we have an amazing team of physicians and researchers who believe that there is something that can be done to help our kids (even if it hasn't been discovered yet) and that our kids and families are simply not a number to them. We have had so many pioneers in our group. From the families who had children in the DHA studies over 10 years ago, those who have been/are part of the Bile Acid study, those who have courageously fought for the best quality of live for their child (no matter how much time they are here on this Earth), to the families who are looking to participate in the Betaine study in the near future and to all of the parents who have been on this journey long before there was a GFPD. And of course I don't want to forget to honor the countless numbers of families that were changed forever because of PBD-ZSD long before the doctors even had a name for the disease and all that these families knew is that their children had so many health and developmental problems and no one could tell them why (and acknowledge that this is still happening today in many parts of the world). I am so proud to be part of such a brave, strong, and amazing family. GFPD is so very dear to my heart.
  6. While GFPD is the main voice for the PBD-ZSD community there are other parents just like us that are fighting for the lives of their children who are impacted by other rare diseases and that we never know when a "breakthrough" in treatment for another disease might give insight for treatment options and hopefully someday a cure for PBD-ZSD.
  7. While today I fight for Ethan and all the children currently living with PBD-ZSD, I understand that all of this might be indeed more beneficial for the children who are not yet even born. I realize that real treatment options and a cure may not be in Ethan's future, this side of heaven, but that isn't going to stop me from working to make a difference for those who are here now, and the families like mine whose lives have been forever changed by this diagnosis. We aren't going to stop searching, supporting, and praying for treatments and a cure!
Please continue to pray for Ethan and all children and families impacted by PBD-ZSD and if you get a chance, consider watching Lorenzo's Oil. Thank you!

November 15, 2012

Feeling better?

Ethan hasn't been feeling well since last Wednesday. We were actually at the doctor's office last Wednesday for a physical that Ethan needed to be cleared for the upcoming sedated ABR and MRI. At the time Ethan just had a slight cough and his lungs were clear but we went ahead and started stress dosing him with his steroids in the hope to help his body fight the stress of being sick.

Over the past week the cough and boogies got a lot worse and Ethan hasn't been eating or drinking well. So this morning when he woke up and still didn't seem to be much better I called the doctor's office to get back in. We got an appointment for the afternoon. Ethan is now on antibiotics and hopefully he will be feeling much better by the end of the weekend. We will have to make a decision about the ABR and MRI on Monday, so we want Ethan to get better soon!

I also had a great conversation today with Ethan's endocrinologist. She has been working hard with us to make sure that Ethan gets the correct stress dosing for the sedation/ABR & MRI next week. She is a wonderful member to our team.

Yesterday was a PJ day for Ethan.

November 13, 2012

Two Firsts

Two firsts for Ethan tonight ---
1) Vicks vapor rub on his chest to hopefully help clear up all the junk.
2) Children's (not infant) ibuprofen now that that he is several months over the age of 2 and just last week hit the 25 pound mark!

November 7, 2012

Ethan's first haircut - November 7, 2012

Ethan's beautiful curls. I'm pretty sure he won't grow anymore back.

After the cut. I've got a few places I need to try to fix tomorrow, but hopefully I didn't mess it up too much.

Ethan plays Peek A Boo w/ His Daddy - November 7, 2012

Ethan's current favorite game to play is Peek A Boo! We have been working on learning how to play this game for a VERY VERY long time!

Christmas shopping ideas that help you give back

  • Looking for a Christmas gift or a special treat to share at your Christmas party? Check out Tolmie Toffee --- they ship anywhere in the US! All proceeds are donated to PBD-ZSD research. The Tolmie's son, Dane, passed away from PBD-ZSD in 2010. You can learn more about the Tolmie's story on their website.
  • Are you planning on shopping online? If so, please consider using Good Shop and a portion of your purchases will be donated to the Global Foundation for Peroxisomal Disorders. You can also use Good Search everyday to raise money for the GFPD simply by searching the internet.

November 2, 2012

Prayer for the De Los Santos family of Uruguay

Please pray for my friend, Andrea De Los Santos and her family. Their daughter left this world for the arms of Jesus. Another little one with PBD-ZSD has been healed forever by the Great Physician. While they share our hope and faith in the Lord, please pray for strength for this this family today in all the days to come as they miss their precious little girl.
Sofia, June 20, 2012 - November 1, 2012

November 1, 2012

Happy Halloween and a GREAT start to Novemeber!

We started out our Halloween with a trip to the eye doctor for Ethan. He told us we could stop dilating Ethan's right eye each morning! So excited about that!!! We go back in January and we'll see if we have to continue with drops, think about eye muscle surgery or if the issue has for the time being been "fixed" by the dilation/drops we have been doing for the last three months.

After returning home from the eye doctor we waited for Jeff to get home and then we got Ethan into his Halloween costume. I ordered the dinosaur costume from Carters but when it came in the mail it looked more like a dragon than a dinosaur --- so we decided it could be either. We went to our church's Eats Before Treats and saw friends and some of our family and then visited Jeff's grandpa. The turnout for the event at church was awesome. They actually ended up running out of hot dogs about 10 minutes before it was supposed to end.



So, after a nice end to October, the first day of November started out great -- I didn't have to put the drops in Ethan's right eye, he drank his whole bottle and I got him off to school. While he was at school I jogged 2 miles, went home and got cleaned up and ready for the day and enjoyed a cup of coffee. When I got to school today to pick Ethan up his teacher shared that Ethan had an amazing day. Besides having his first kiss -- he kissed his little friend Lilly!!! He ate a whole 6oz. jar of stage 3 baby food and several oz. of applesauce, sat in the rifton chair without any problems during feeding and speech therapy, stood in his stander for 20 minutes, played and had a great time, never pulled his hearing aids out, his teacher swears he was saying 'hi' all morning, and then when we got ready to leave he "waved" --- open and closed his hand several times to say "bye" to Lilly! I'm not sure if he was just doing it all to impress a girl, but I'll take it! I am so glad that we chose to get involved in the STEPS program. :)

October 30, 2012

OT Progress - October 30, 2012

Spoke with the OT today when I got to STEPS to pick up Ethan. Apparently he got the circle in the shape sorter all by himself 4 times today! He won't do it for us at home, of course, but at least he is making progress and showing off at school. LOL :)

October 25, 2012

Hearing Aid Coverage for Kids

I need your help. We need to get around 300 more signatures. Did you know that hearing aids for children are typically not covered by health insurance because they are considered cosmetic?

As a parent of a child with hearing loss in addition to other challenges because of PBD-ZSD, I can tell you that Ethan having hearing aids (and possibily cochlear implants someday if his hearing gets to a point that hearing aids can no longer help) is not "cosmetic," it is a neccessity.

Please consider signing this petition and letting the state know that insurance companies should be required to cover hearing aids for children. The leadership team behind the petition has a meeting set with an Illinois elected official, but we would really like to have 1,000 or more signatures on the petition before then. Thank you for signing and for spreading the word.

October 22, 2012

Vision Therapy - October 22, 2012

Ethan is using what vision he has really well. His vision teacher is very impressed Ethan's functional vision. Today towards the end of vision therapy we worked on using the tablet to visually motivate Ethan to cruise along the couch.

October 21, 2012

Ethan "walking" outside - October 21, 2012

It was a beautiful day today! We once again took Ethan's walker to church with us so after the service he could "run" around the parking lot after everyone had left. He just had a blast!

You might notice that this is another new walker. The gold walker that was given to us by our friends in Tulsa wasn't really any taller than the other one we already had, so we ended up having to buy a different one. Thankfully we had a bit of money left over from the money we were given this summer from the Mt. Zion Community Ice Cream Social so we used part of it to purchase the walker. The funds that we were given have been a huge blessing to our family.

This afternoon we took the walker outside here at home and played in the driveway. We are loving the amazing weather!

October 13, 2012

Test Results after 1 month of the new dose of betaine (Cystadane)

On Tuesday,  I just got the call from our geneticist's nurse (at 5pm as she was headed out the door) and the bloodwork that we did after Ethan had been on the new higher dose of Cystadane (betaine) -- the experimental medicine --- came back this afternoon. Apparently our doctor has already been in contact with Dr. Braverman (geneticist from Canada/PBD-ZSD specialist) and they are encouraged because there appears to be a "slight" improvement- with his numbers trending "a bit" closer to "normal." The lab results were put in the mail, and we got them today when we returned home from being out of town.

Are these findings enough to say that the medicine is "working?" I'm not sure we can say that yet, but for now, we can assume it isn't "hurting," and we will be continuing Ethan at the current dosage --- not sure when we will check levels again to see if the "trend" is still occuring, probably in a couple of months. Please continue to keep Ethan in your prayers and all families impacted by PBD-ZSD. Pray that the proposed clinical trial will soon be underway so that other children will have access to this medicine -- because what if it is helping? If it is, we want as many families as possible to have access. No, it isn't a cure, but if it could mean that individuals with PBD-ZSD have a better quality of life, it is a huge step in the right direction!

Okay, so they tested a bunch of different things and levels, but the C24/C22 and C26/C22 ratios/levels are the ones that the doctors seem to be watching the closest because Dr. Braverman said in an email to me that, "these ratios seem to be the most sensitive indicator for VLCFAs." 

Ethan's C24/C22 levels

  • December 2011: 1.865
  • April 2012: 1.606
  • September 2012: 1.407

Normal controls are 0.84 +/- 0.10 ----- so you can see that while it is only a slight trend, it is getting "closer" to normal.

Ethan's C26/C22 levels

  • December 2011: 0.353
  • April 2012: 0.199
  • September 2012: 0.187

Normal controls are 0.01 +/- 0.004 ---- again, you can see that the trend is an improvement even if they are still a long way from normal.

So although it is only slight improvement there is a trend of improvement so that is very encouraging. Overall, I'm very happy! Please keep praying for Ethan, and all the children and families impacted by PBD-ZSD.

Ethan's "new to him" walker - October 13, 2012

Ethan's first minute or so in the new to him walker. Thank you Melissa G. and Vicky M. for making this possible. It is only about a half inch taller than the other one, but it seems to help. We are still going to see if our PT can get us a taller one ordered, though because this one is at the tallest setting and this boy is just going to keep growing. :)

October 12, 2012

Time to cruise! - October 12, 2012

Ethan "cruised" the length of my parents' couch tonight. It was slow and not very pretty, but he did it! It was amazing! To be fair, if the couch was lower, like our's at home, he would have just climbed up instead, but I don't care. I ♥ my little man!

October 9, 2012

"Slight" Improvement?

So, I don't have any actual numbers yet, but I just got the call from our geneticist's nurse (at 5pm as she was headed out the door) and the blood work that we did after Ethan had been on the new higher dose of Cystadane (betaine) -- the experimental medicine --- came back this afternoon. Apparently our doctor has already been in contact with Dr. Braverman (geneticist from Canada/PBD specialist) and they are encouraged because there appears to be a "slight" improvement- with his numbers trending "a bit" closer to "normal." The lab results will be put in the mail to me first thing in the morning. When I know more I will share. Are these findings enough to say that the medicine is "working?" I'm not sure we can say that yet, but for now, we can assume it isn't "hurting," and we will be continuing Ethan at the current dosage --- not sure when we will check levels again to see if the "trend" is still occurring, etc.

Please continue to keep Ethan in your prayers and all families impacted by PBD. Pray that the proposed clinical trial will soon be underway so that other children will have access to this medicine -- because what if it is helping? If it is, we want as many families as possible to have access. No, it isn't a cure, but if it could mean that individuals with PBD have a better quality of life, it is a huge step in the right direction!

October 1, 2012

Will the real Ethan please stand up?

Ethan pulled to a stand in his crib today for the first time! I am so very proud of my little man. I went into his room when I heard him wake up from his nap and there he was, standing! I was on the phone with a good friend from Tulsa, another PBD-ZSD momma, and she got to hear my excitment. It may have taken him 26 months to do it, but who care? Not me!

The crib has now been moved to the very lowest level. Jeff did it this evening right after he got home and heard the news. Hoping it will buy us another week or so until we decide what we are going to do next. I think we'll probably be looking into a tent to go over a mattress on the floor. Safety has to be our number one priority.

September 24, 2012

Brooklyn family fights to pass ‘Aidan’s Law’ which would require screening newborns for rare brain disorder ALD

News out of NY today regarding the ALD newborn screening that would also identify children born with PBD-ZSD and another related peroxisomal disorder, D-Bifunctional Protein Deficiency (DBPD). This newborn screening is needed in every state across the country. It can save the lives of hundreds of children with ALD and also allow for families of children with PBD-ZSD or DBPD have a correct diagnosis without having to search for months or even years to find out the cause of their child's medical issues and developmental delays, and allow them to seek proper medical care and interventions for their child. This screening would also allow parents of children with ALD, PBD-ZSD, and DBPD make informed decisions about the risks and options for future family building.

Read the article: Brooklyn family fights to pass ‘Aidan’s Law’ which would require screening newborns for rare brain disorder ALD

September 22, 2012

A new adventure....

We took Ethan's walker with us to church for the first time this afternoon when we went for the new addition's open house - which includes an elevator to the basement/fellowship hall and new handicap accessible restrooms. We are using a sling on the walker that gives Ethan more of the support he needs, but the walker he currently has is too short, so he isn't "walking" as well as he should.  However, next weekend he'll be getting a taller walker from his friend Ginny. Ginny is 4 and from Tulsa,  and she has been walking independently for well over a year, so she doesn't need her walker anymore. The new larger walker should help a lot, since it will "force" Ethan to bear more weight through his legs. The walker Ethan has been using, that was originally Sam's from Nebraska, and then Kenna's from Carrollton, Illinois, will now be ready for the next GFPD family that needs it. It works great, but our little man is just too tall.

Regardless, Ethan seemed to have a blast "walking around" at church, especially down in the fellowship hall where he had tons of space to explore. He is getting better and better at putting one foot in front of the other. There were a few "misty" eyes from some of our church family when they saw our little man in his walker. While we know that most of our church family admits they "don't understand/get it" it is still encouraging to know that so many people love and pray on a regular basis for our little guy. We are blessed to call First Baptist Church in Mt. Zion, Illinois are church home.

September 21, 2012

Ethan Shows Off - 9/21/2012

Mr. Holland's Opus

Watching "Mr. Holland's Opus" for the first time since having Ethan. While Ethan is obviously more than just hard of hearing/deaf, this clip showing the mom sharing how much she wants to be able to communicate with her son, speaks volumes to what I often feel. I want to be able to hear my son say, "mom," "dad," "I love you," and for him to understand those words from me as well.

I am so thankful for the technology and his hearing aids that have helped him enjoy the hearing world around him, and while the cognitive impact of PBD is most likley to blame for why we still don't have much communication, I am thankful that I live in a time and place that is encouraging total communication (talking, sign language, pictures, etc.). 

Ethan, we love you and I promise we won't ever stop trying to communicate with you. 

September 16, 2012

We are in trouble, now! - September 16, 2012

Ethan started looking sick yesterday while we were in Mt. Vernon attending my Great Grandmother's funeral. Great Grandma was an amazing woman of faith who loved the Lord and her family. She had been ready to "go home" for many years. She was 99 years old, and although she had been in the nursing home for several years and had a lot of trouble remembering who people were in the last few years, she never forgot the old hymns that she played on the piano and organ at Marlow General Baptist church for the majority of her adult life. Most often she was accompanied by my other Great Grandma who went to be with the Lord when I was pregnant with Ethan. I consider myself very blessed to have such amazing examples of strong, determined, women of faith growing up. I have visions of these two ladies now in heaven with the Lord and so many of their loved ones who went before them.

We made sure to take Ethan's cortef (steroids) with us and we've been stress dosing Ethan since yesterday morning. He is still full of yellow boogies and is a bit warm, but seems to still have energy to play and climb (as seen above). I am very thankful that we saw the endocrinologist on Friday. We'll have to wait a few days to do the retest since the results would be off since Ethan is currently on the cortef, but that is okay. We'll get it done once he starts feeling better.

On a different note, Ethan seemed to eat better today than he has in weeks. He has still be drinking his bottle but hasn't wanted to eat any solids/purees. Today for lunch he had a bit of homemade chili - I made it with ground chicken instead of beef hoping that Ethan would at least give it a try, and he seemed to like it. He then had some peach applesauce that had a few tiny pieces of peach in it. Then for dinner he had some mandarin oranges, and instead of pureeing them like I usually do I cut them into tiny little pieces and he seemed to do just fine! I'm so proud of my little man.

Did you know?

Did you know that in 2009 there were 4,130,665 children born in the USA?

With a prevalence rate for Adrenoleukodystrophy (also known as ALD and/or X-ALD) estimated at 1 in 20,000 that means 206 children were most likely born with ALD that year and PBD (including DBPD) has a prevalence rate estimated at 1 in 50,000 so that means most likely 82 children were born with PBD (and/or DBPD) just that year as well.

Early detection and treatments such as Lorenzo’s Oil, a modified diet, treatment for adrenal inefficiency, bone marrow and/or cord blood transplants can give boys with ALD and their families hope that only a few decades ago was not possible in light of this diagnosis.

Although at this time, treatment for PBD-ZSD and DBPD are symptomatic, an early and correct diagnosis makes a difference for families. Many families wait months and even years before receiving a diagnosis of a PBD-ZSD or DBPD- many receiving multiple incorrect diagnoses along the way. If children were identified at birth families will not have to undergo months and years of searching for the cause of their child’s delays and health issues. Families will also be able to work with their medical team to be proactive in the treatment and intervention of hearing loss, vision loss, seizures, bleeding issues, adrenal insufficiency and any other symptoms that arise.

Additionally families who have a child who has been identified to have ALD, a PBD-ZSD, or DBPD through a newborn screening will also be aware of their carrier status and thus be able to make an informed decision about the risks and options for future family building.

The Global Foundation for Peroxisomal Disorders is proud to show their support for the ALD newborn screening test that would identify ALD, PBD and DBPD! If a movement towards adopting the ALD newborn screening is happening in your state, please consider showing your support. Legislation has already been introduced in New York and New Jersey. To learn more please visit The Stop ALD Foundation website.

Also, if you or anyone you know is thinking of getting pregnant please check out the carrier screening test by Counsyl. The test screens for carrier status of over hundred different genetic disorders. While the test can not  "catch" everything, it can provide very useful information so that a couple can understand their risks and options for family building. Jeff and I had never heard of anything like this. We knew that individuals could get carrier tested for certain disorders if there was a family history, etc. but we had no idea that something this important was widely available. We have encouraged our siblings to be tested prior to starting a family. For my siblings they will also need a separate test to screen for my PEX 1 mutation since it is not common, but I hope that they will also consider a test like the Counsyl test that will also provide them with more information. Jeff and I never thought it could happen to us. We love Ethan so much, please don't think that we don't. That isn't why we are advocating this, but we know that information can be powerful. For us we knew that if we couldn't have children naturally, we would adopt. If we had known before hand that we had a 1 in 4 chance of having a child with PBD, we could have had a discussion about whether or not we wanted to "risk" it or proceed with building our family via adoption.

September 14, 2012

Ethan "knee" walking - 9/14/2012

If I hadn't caught this on video, I'm not sure I'd believe it. This boy is determined to MOVE!

First Endocrinologist Visit - 9/14/2012

We saw the endocrinologist this morning over in Springfield. She seems nice and was willing to learn more about PBD-ZSD and consult with Dr. Raymond, the PBD-ZSD expert, which is always a good thing in my mind. While Ethan is of course her first PBD-ZSD kid, she sees kids that have adrenal issues for lots of reasons, so I think we'll be in good hands.

We left with a prescription for cortef to be used for stress dosing if Ethan gets sick before we do more tests to determine if he needs a daily dose. She is going to touch base with Dr. Raymond him before ordering the next test to double check levels and make recommendations from there. We were in agreement that we have to get this taken care of before his sedated ABR and MRI in November because anaesthesia is a major stress on the body and that Ethan should be stress dosed for the procedure to do all that we can do to avoid an adrenal crisis. So, the issue hasn't be fully addressed yet, but a plan is in place, which makes me feel much better.

Thank you for your continued prayers!

Dr. Green is amazing! She called me personally, not her nurse, to say she had already been in touch with Dr. Raymond (our appointment was this morning at 9am) and they have a plan. We'll do another ACTH and Cortisol draw on Monday morning here in Decatur. Once she get the results we'll either continue with stress dosing for illness or we'll go on a daily maintenance dose.

September 11, 2012

Asking for prayer

Asking for prayer from all my prayer warriors out there.

Yesterday we went up to Carle for blood work. Ethan has been on the higher dose of Cystadane (betaine) for a month now so we wanted to check to see if it has made any positive impact to his VLCFA levels and there were a few other things that needed to be checked including his Vitamin D level and his ACTH levels (we check ACTH every 5 to 6 months because most children with PBD develop adrenal problems at some point in time).

This morning while Ethan was at school I got a call from our geneticist and his nurse. I left Ethan at school for the first time today and he did great, but that is for another post. They called to let me know that two of the labs had come back so far and the rest were still pending and would take a while, some like the VLCFA will take several weeks. Well, the test showed that Ethan has low levels of Vitamin D. He already takes a multivitamin and gets additional Vitamin D from his Bright Beginnings Pediatric drink, but we are going to need to do an additional Vitamin D supplement. No problem, we can do that! Vitamin D is important so I'm glad we know that he needs more because his body is obviously not absorbing it correctly because of PBD.

Then, this evening just after 5pm the geneticist called again. Ethan's ACTH came in at the end of the day --- at 373!!!! He was at 23 on April 30th (normal range is 7-63). He is calling the endocrinologist in the morning and going to try to get us in this week. I am in shock and disbelief. This is why we have this checked every 5 to 6 months, but Ethan's levels have always been amazing, and now for them to jump like this my stomach is all in knots. I'm hoping that we'll have a script for cortef (steroids) in hand and filled by the end of the week. Please pray that we'll be able to get in ASAP and that they will help us get this addressed. Ethan has been doing such amazing things this past six weeks and I'm scared of what an adrenal crisis could do to my little man. I'm not scared about the extra daily medicine and stress dosing that we'll need to do. I have seen the steroids do wonders for many of Ethan's little friends, but I am am terrified about the possibility that if we don't get this treated soon enough that it will lead to a regression and loss of skills and the progression of the disease.

Please pray that I would have peace and that the endocrinologist will get us in ASAP and will have the wisdom to do what Ethan needs to stay as healthy and happy as he has been. I'm not sure I've been this worried/scared about my sweet boy in a while. This is like a huge punch in the gut by PBD.

September 7, 2012

GFPD Vinyl Window Decal

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.

IL Kids Need Hearing Aid Coverage

Did you know that most insurance companies consider hearing aids "cosmetic"? While IL and most states now provide newborn hearing screening, because they understand the importance of early intervention for children with hearing loss (hearing aids, cochlear implants, speech therapy, hearing services, introduction to sign language, etc.)many families struggle to find a way to pay the $2,000 to $3,000 that EACH hearing aid costs. If a family qualifies for IL's All Kids program there is coverage and other families can qualify for help through DSCC but that too is income based. We were very lucky that when Ethan was fitted for his first pair at four months old that we qualified for DSCC, but due to Jeff's raise we no longer due. While we are blessed that Jeff has a good job, and that our insurance does cover some of the costs associated with hearing aids there is a lot that they don't cover. Including ongoing hearing tests, earmolds, and a good portion of the hearing aids. Some insurances don't cover anything! They won't cover hearing aids, cochlear implants or the audiological services that children with hearing loss need. Most families, even when they are blessed to have one or both parents with "good" jobs can't easily come up with the several thousands of dollars needed for hearing aids.

Please take the time to sign this petition.

September 5, 2012

Ethan crawling on hands and knees - September 5, 2012

We finally caught Ethan on video. He is up to 4 and 5 "cycles" at a time now, and he was crawling like crazy yesterday morning at school. He still prefers to combat crawl though, since he can move much faster that way, but as he gets better on his hands and knees I'm sure that will change. We are so proud of our little man!

Art for Archer - October 20, 2012 in Meridian, Mississippi

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.

August 30, 2012

STEPS - Day 2

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 did take most of a bottle and fell asleep for a nap at 1pm. We'll see if we can get meds and some food into when he wakes up. Most of his meds he only gets once a day, but the betaine is a three times a day medicine and we need to make sure he gets that in each day.

August 28, 2012

Ethan's First Day of "School"

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 songs, etc. I know that Ethan is very delayed, but it was so hard today to see when even compared to other kids with special needs how far behind he really is. Just another slap in the face about the reality of this horrible disorder and what it is stealing from Ethan and from us.

Please pray that we can find a way to make the adaptations needed at STEPS so that this can work for Ethan and be a really positive experience for our family. I think that Ethan can learn a lot of things, especially by having peer role models and learning that it is okay to be away from me, but I'm a bit concerned. I had very high hopes for the day, and things just didn't go as smoothly as I had thought that they would. We'll let you know how Thursday goes.