December 24, 2014

Merry Christmas & Happy New Year

Merry Christmas and Happy New Year from the Marshall Family


Dear Family & Friends,

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

It is our prayer that in 2015 we would grow closer to God and see Him working in our daily lives. We continue to hold onto His 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.” Since we (humans) may never understand the “whys” of so many things in life this side of Heaven (and perhaps not even when we get to Heaven, since I’m not sure it will matter anymore) we are trying to remember to ask simply, “What next Lord?” and “How can we Glorify You?” each and every day.  Some days this is easier than others, but we know that He is with us and we are thankful for the promises and hope we find in Romans 8 and the comfort and encouragement that we find in the words of Jesus recorded in John 10:28-30, “I give them eternal life, and they shall never perish; no one will snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand.  I and the Father are one.” 

It is also our prayer that if you do not yet know this type of peace, that this Christmas season, as we celebrate Jesus’ birth, that you would open your heart and accept Him as your Lord and Savior.

With love and hope,

Jeff, Pamela & Ethan


If you would like to know more about how you can have a relationship with Jesus, please check out the following:




December 11, 2014

Bass Pro Shop Adventures - December 11, 2014

Ethan's class went to the Bass Pro Shop this morning to see Santa. This was Ethan's first field trip! His first time riding a bus! His first time in Bass Pro! His first time walking around a store! I know I've said it before, but I feel so blessed by Ethan's school experience so far this year and by the amazing teachers, assistants, therapists, and support staff who are part of our team. Thank you so much!


My first time on the bus. All loaded up and ready to go!



We're here! Get me off this bus and out of this chair!


I'm not exactly sure what I think about snow people....
video
Just walking around, exploring the store. (Ethan had to stop and rest frequently, but he did a TON of walking this morning. It was great. He seemed to really enjoy making choices about where he wanted to go. It was just wonderful to see him explore a completely new environment.)


Hi. I think I might need one of these!


Visiting with Santa.

I'm done, can we go already?

On the bus, headed back to school. 





November 2, 2014

Have Walker, Will Travel

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

Click here to view the video.

Feeling Blessed by Our New Church Family

Although we have not yet become members of the church we've been attending regularly since moving to Peoria, we are starting to feel more connected, getting to know more people, and are feeling very blessed that we've been welcomed with open arms and hearts. Finding a church home is hard for anyone, but when you add having a child with special needs to the mix, that often adds an entirely different layer of complexity to the situation.

This morning we had a meeting with Ethan's "team." At this time seven ladies (and a possible 8th) have signed on to be Ethan's one-on-one in the nursery so that Jeff and I can attend Bible Study (Sunday School) and the Worship service. We didn't get a chance to meet all of his team members this morning, as some of them had things that kept them away from church today, but those that we did meet seemed to be thrilled about getting to spend time with Ethan. Ethan is in the "crawler" room at church, which seems to be the most developmentally appropriate at this time. So, his one-on-one will push into the "crawler" room with him and will provide him with the attention and assistance that he requires. 

We just can't thank everyone enough for volunteering to minister to our family in this way. Knowing that there will be someone who knows about Ethan and who feels comfortable caring for him is crucial to us being able to enjoy attending church. It gives us the opportunity to be participate in Bible Study and the Worship service without constantly worrying about Ethan in the nursery. 

Thursday morning I got to run with a new friend. She is a mother of two, her oldest has significant special needs. As we ran and visited we talked about lots of different things and spoke about church/faith for a significant part of our run. Each of us consider our faith very important to us and wonder how families who can't take comfort in the promises of God do this, yet we both agreed that going to church isn't easy when you have a child with special needs. This is not the first fellow mom of a child with special needs that I've had this type of conversation with and it really is an issue that most churches are doing little to address. 

Did you know that it has been estimated that 80% of American families who are impacted by a disability do not attend church? In the USA 20% of our population is considered disabled! While a very large percent of Americans (those impacted by disability or not) have no desire to attend church, there are many who might but don't because of any number of factors. [These stats came from Ellen Stumbo's blog.]

Why might a family impacted by disability who would be open to attending church not go?
  1. It's just too hard.
    • The church building itself may not be accessible --- no ramp to get inside the building, no elevator to allow access all the parts of the building, narrow hallways, no handicap bathrooms, etc.
    • There may not be an appropriate "place/setting" for their loved one with disabilities.
    • There may not be enough willing trained volunteers to care for their loved one.
    • They may not feel welcomed by the church.
  2. They are hurting.

Families impacted by disability have in many ways became an unreached/unchurched people group. This is why I am so glad that the church that we've been attending is open and willing to purposefully engage and invest in us a family. It is my prayer that every church in America would consider if they need to be doing more to make sure that they are accessible to families touched by disability. 

October 31, 2014

Happy Halloween!



Happy Halloween!


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

October 29, 2014

Outpatient PT Evaluation & Our First Visit to the Peoria Zoo

This morning Ethan had an appointment at Easter Seals to be evaluated for outpatient physical therapy. While we are very happy with his PT at school, it is our desire to supplement it with outpatient, and specifically with water/pool PT. The evaluation went well, Ethan even showed off and walked with his walker for the PT. Hopefully, he'll start outpatient PT within a couple of weeks.

Afterwards I took Ethan to school, but he was only there for a short time since it was a half day. We decided to spend part of the afternoon with some of our new friends, Michelle and Khloe. Khloe is in Ethan's class at school. We headed to the Peoria Zoo. It was Ethan and I's first time there. While Ethan didn't care about the animals we had a nice visit and the kids enjoyed playing in the leaves. This was the first time Ethan's really "played" in the leaves. It took him a while to warm up to it, but overall I think he liked it.









October 22, 2014

UNMC researcher heads $3.3 million national study

This week we got some great news, Dr. Rizzo, who saw Ethan last week at Children's Hospital in Omaha, and who is a member of the GFPD Medical Scientific Advisory Board, has received a five-year, $3.3 million grant to study 10 rare diseases, and one of the diseases that will be included in this study is PBD-ZSD!

You can read the press release here.

Please keep joining us in prayer for the doctors, scientists, and researchers who have dedicated themselves to the study of PBD-ZSD and other rare diseases. The GFPD considers ourselves blessed to have such a great team of professionals who are searching for ways to increase the quality of life for our children and ultimately discover a cure.

It's POTTY Time!

At the end of August we began working on potty training/scheduling with Ethan. We weren't in a hurry to start working on this since Ethan can't tell us he needs to go and he can't walk to the potty, but since other kids in his preschool class were working on it, we decided it couldn't hurt to give it a try.




Ethan has really surprised us! Ethan's been using the potty at school and at home for about 2 months now. He averages about 50 to 75 percent success while he is awake, and is now wearing more pull-ups than diapers. He still can't tell us he needs to go, so it is more about scheduling and we give him the opportunity to try typically every two hours. When he is successful we cheer, sing, and celebrate! Ethan claps his hands and smiles. At this time he seems to really enjoy being successful and so we'll keep on taking him.




Since we have done a bit of traveling since Ethan started using the potty, we just take it with us -- have potty, will travel -- has become our motto. Although, we aren't exactly keeping track of all the places that Ethan has gone potty, we are excited that he seems to be pretty flexible and is still pretty successful even when we aren't home.



October 15, 2014

Columbus Day Weekend Getaway 2014

Jeff, Ethan, and I spent the Columbus Day weekend with friends in Kansas City, KS. This was a special trip for several reasons 1) none of us had every spent any real time in KS; 2) this was our family "vacation" for the year; 3) we got to see some of our GFPD family!

While in KC we enjoyed swimming in the hotel pool, walking around the KC Botanical Gardens, and visiting the Deanna Rose Children's Farmstead with the Maag family. Of course, the real highlight of the trip was getting the chance to spend time with three other families who understand PBD-ZSD.

Ethan's favorite thing about the Children's Farmstead were the cow bells!




Although it isn't a great picture, its proof we were all together.


On Columbus Day we checked out of our hotel in KC and drove to Omaha, NE since Ethan had a DEXA scan (which measures bone density) and an appointment with Dr. Rizzo (one of the top PBD-ZSD experts in North America) the next day. Our friends from Oklahoma also had doctors appointments in Omaha, so our two families stayed at the same hotel so we could spend a little more time together.

Monday night we enjoyed pizza in our room along with the Gamble family and our friend Abby who drove in from Lincoln to hang out with us. Abby is very special friend to the GFPD and has volunteered in the childcare room at all of our conferences. It was great to spend a few hours catching up. Ethan warmed up to Miss Abby right away. He is such a charmer!

On Tuesday morning we left the hotel early to go to the Children's Hospital. Ethan did great during the DEXA scan and then we headed over to see Dr. Rizzo. The appointment went as well as could be expected and Dr. Rizzo assured us that we were doing everything we needed to be doing to manage the symptoms of PBD-ZSD. Ethan's DEXA scan showed that his bone density seems to be pretty stable and that probably isn't contributing to why Ethan has lost some of his mobility. While it is great that his bones aren't bad enough for us to need to look into possible bone density treatment options, the reality is that Ethan's loss of mobility is likely related to the progression of PBD-ZSD and/or that Ethan's mobility has simply plateaued. Despite that, Dr. Rizzo was encouraged about Ethan's progress in potty training/scheduling and that Ethan's overall health is good, considering he has PBD-ZSD. We also discussed Ethan's increased irritability and his problems sleeping, and although Dr. Rizzo didn't have any immediate solutions we are going to talk to Ethan's neurologist about some possible medicines to try.  The hard truth is that many children with neurological diseases have a difficult time sleeping and can become very irritable.

The drive home on Tuesday was a tough one, but we made it home eventually. Ethan was a real trooper. While we were sad to have to leave all of our friends and missed them even before we left, it was good to be home.

September 20, 2014

#PauseforPBDs - Sunday, October 5th


The Global Foundation for Peroxisomal Disorders (GFPD) is turning 4 years old! Would you please consider taking a moment or two to #PauseforPBDs on Sunday, October 5th in honor/memory of the individuals and families whose lives have been impacted by PBD?

How will you pause? Ideas include: a balloon or lantern release, lighting a candle, reflecting during a moment of silence, saying a prayer and/or putting a note in your church's bulletin, asking for a love offering to be designated to GFPD, spreading awareness via social media, reaching out to a friend or family member impacted by PBD, making a donation to GFPD,etc.

Will you join us as we #PauseforPBDs to remember, reflect, and raise awareness? To learn more about PBDs, visit www.thegfpd.org.



To join the #PauseforPBDs event on Facebook, click here.








August 23, 2014

Praying for my GFPD Family

Tonight my heart is especially heavy and hurting for many members of my GFPD family who are going through extremely challenging times. PBD-ZSD affects every aspect of our lives and impacts/puts extra stress on our relationships with our spouse/partner, child(ren), family and friends, our jobs, finances, and life in general. The grief each of us feel and are working through is different depending on where we are along this journey and can vary from day to day, but it is real and sometimes seems completely overwhelming.

Will you please lift up little Harleigh's family tonight? Harleigh is just 5 months old and she is severely impacted by PBD-ZSD. She is really struggling right now and she may not have a lot of time left here on Earth. We know that only the Lord knows the number of Harleigh's days (and ours) but her little body seems to be getting very tired. Would you join me in praying for a miracle, for healing, for comfort, for peace that passes understanding for the Webster family? Thank you.

August 19, 2014

A Change and Challenge-filled Summer (the short version)

This summer has been one of changes and challenges. Not all of the changes have been bad, but some of them have been and are continuing to be ongoing challenges. I'll share more in a longer update soon, but here is the short version of what's going on for our family.


  • Over the months of June and July Ethan went from walking dozens of independent steps in a row to not taking any steps, barely cruising, and basically not even wanting to bare weight on his legs/feet. To say that we are devastated about this setback and loss is an understatement. We are thankful that at this point Ethan is still mobile, he crawls and he scoots on his butt, but my heart aches for the boy who was on the verge of truly walking independently back in May that seems to be, at least for now, gone. Ethan has started school and we actually have his IEP meeting tomorrow. We are hoping that the new PT and the increased minutes will help us try to get some of this back. I want my son back. I hate this stupid disease.
  • We've been in Peoria as a family for just over a month. We are no where near being settled, there are still boxes that need to be unpacked and several rooms that need to be organized, but we are beginning to be more comfortable here. There are lots of projects that need to be done over time to make this house our home, but those aren't going to be happening for a while. We are thankful for the house we have and although we haven't met a lot of neighbors it seems like a nice neighborhood.
  •  Jeff is continuing to enjoy the new job/position and has been able to reconnect with several former coworkers that used to be in Decatur but over the years relocated to the Peoria area. I am very proud and thankful for Jeff's job and the provision that it has provided us as a family so that I can stay home with Ethan.
  • Ethan started school! He is in the Deaf/Hard of Hearing preschool class in Peoria. Yes, we did buy in Peoria school district, and so far do not have any regrets. Due to Ethan's needs, the smaller school districts would have "bussed" Ethan into Peoria for services anyway, so it just makes sense for us to live where Ethan can have the best access to the special education services that he needs. In his class of 5 students, I know that one of the little girls is from East Peoria, and another is from Pekin, since those school districts don't have a Deaf/Hard of Hearing preschool class the girls come into Peoria. So far things are going great and Ethan seems to love his teachers, therapists, and school in general. We have his IEP meeting tomorrow which will help us develop a more solid plan for this year.
  • We are slowly changing most of his specialists to ones here in Peoria. It will be so nice to have specialists and a Children's Hospital in town, verses having to drive an hour for appointments all of the time. At this time we are going to keep a few of our specialists in Champaign and Springfield, but the majority of them will soon be local.
  • Ethan went to the dentist for the first time! It wasn't nearly as bad as we had thought it would be. I won't lie and say that it was fun or easy, but it went okay and he'll start having checkups/cleanings every six months now.
  • I'm training for the Susan G. Komen Half Marathon that will take place here in Peoria in the middle of October. So far I'm a bit behind on my training, but I think I'll be able to do it. I want to improve on my time from April's Illinois Half Marathon. I plan to once again proudly wear my bright green "Exercising for Ethan" t-shirt. My little boy has to work so hard to do anything, so challenging myself to do something like this (although I admit to enjoy running) is hard and when I'm really struggling it gives me the tiniest bit of feeling like I might understand a fraction of the frustration Ethan must feel every minute of his day when he can't do what he wants/can't communicate what he wants/needs, etc.
We would greatly appreciate your continued prayers for our family. I'll be working on a more specific list of prayer requests for my next update.


Thank you!

June 12, 2014

Going through the motions


It has been nearly a month since I last wrote. I feel like we’ve been on autopilot since the middle of May, simply moving through the motions getting through one day at a time.

 

Over the last couple of weeks we have:

  • Placed our house on the market. Jeff has accepted a new job and our family will be moving sometime this summer.
  • Visited Farm Park in Peoria, IL were we got to meet up with another family from the area that I met through Illinois Mommies of Miracles.
  • House hunted and made an offer on a house in our new city (contingent on the sale of our current home)
  • Visited Ethan’s potential new school. We are going to be visiting another possible classroom placement at the beginning of the school year before we make a decision about what will be the best environment for Ethan.
  • Scrambled to get the house ready for a showing numerous times. Please continue to pray for the sale of our house.
  • Shared in the excitement of my younger brother’s engagement to a lovely young lady. They seem to be extremely happy and in love.
  • Discovered that Ethan now knows how to crawl/climb stairs! This is really exciting and incredibly dangerous.
  • Wrapped up Ethan’s first year of preschool. It was tough to say goodbye to his amazing teachers and therapists.
  • Spent an afternoon with two other PBD-ZSD families. We met in a small town that has a McDonald’s and a nice local park that is about an hour to an hour and a half drive for each of us. It was wonderful. Ethan even had his first McDonald’s play land experience – I was able to help him slide down the slide.
  • Transitioned into a summer schedule with outpatient Physical Therapy and Speech.
  • Enjoyed a few morning walks although the weather hasn’t been as cooperative as we’d like. Hopefully we’ll be able to start getting more walks in soon. Ethan is only good in his stroller for about 20 to 30 minutes, so we have a little one mile loop that we walk that takes just about 20 to 25 minutes to complete.
  • Mourned the loss of another little one due to the devastating effects of PBD-ZSD. The mom and dad are believers and they spent the last hours singing, praying, and talking to their baby boy. They didn't even get a year with him this side of heaven. I know he is healed of this horrible disease but my heart is breaking for his parents, and I can't help but thinking that unless we get a miracle -- spiritual/supernatural or scientific/medical -- I too will someday have to live through what they are going through. I hate this disease! Please pray for all of the families impacted by this disease -- those whose children have passed away and those whose children are still fighting PBD-ZSD one day at a time. Please pray that the doctors and researchers will find effective treatments and a CURE! Please pray that families would turn to God, not away from Him in the midst of this life changing journey. Having a child with PBD-ZSD is so hard even as someone who believes --- I still have lots of issues, questions, doubts, and frustrations --- I can't imagine what it would be like if I didn't have faith in Christ.t a miracle -- spiritual/supernatural or scientific/medical -- I too will someday have to live through what they are going through. I hate this disease! Please pray for all of the families impacted by this disease -- those whose children have passed away and those whose children are still fighting PBD-ZSD one day at a time. Please pray that the doctors and researchers will find effective treatments and a CURE! Please pray that families would turn to God, not away from Him in the midst of this life changing journey. Having a child with PBD-ZSD is so hard even as someone who is a believer --- I still have lots of issues, questions, doubts, and frustrations --- I can't imagine what it would be like if I didn't have faith in Christ.
  • Today our home is getting a new roof. We hope that whoever buys our house will enjoy it. I’m not even going to fight with Ethan to wear his CI today with all of the noise. Ethan is still having trouble bonding with his implant and we are really struggling to get him to wear it. We know that his brain is still learning what everything sounds like, since CI hearing is different than the amplification that he used to get from his hearing aids, but a majority of the time he takes off the CI head piece it is because he is frustrated, mad, and/or wants our attention. Ethan’s communication is so limited, and he has so little control over the world around him, he knows that he can rip the head piece right off his head and we’ll work hard to try to figure out what it is he’s trying to tell us. We continue to put it back on and tell him and sign “NO” but so far it isn’t helping. He is much better about keeping the head piece on when we are not at home. The church nursery seems to be where he tolerates it best!



I would ask that you would keep us in your prayers. I imagine that we are going to be having a very busy and stressful summer as we sell our house, buy a house, and transition to a new city that is away from Jeff’s family, our church family, and friends, where we will need to find new doctors and therapists for Ethan as well as ourselves. We will also need to find a new church that will be able to accommodate and care for Ethan so that Jeff and I are comfortable attending worship service and Bible study knowing that Ethan is safe. Plus, this fall Ethan will be starting at a new school. Your prayers would be greatly appreciated. Thank you!

May 15, 2014

Thankful Thursday - May 15, 2014

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



April 16, 2014

Illness, Illness, go away! Please don't come back any day!

We have had a really rough start to spring. We spent a week in the hospital in March for dehydration and a "mystery" virus/illness. Ethan only went to school Monday and Tuesday last week, and was sick the rest of the week --- cough/congestion, etc.. He started feeling better on Saturday, but that is when I started to feel like crud. This cold has really worn me out, so I haven't been running, and the half marathon is a week from Saturday!


Ethan went to school Monday and yesterday, and was fine until last night when he hardly slept, was irritable, and eventually developed a pretty high fever. The fever is gone, but he is still wiped out and restless. He is currently sleeping, and I pray that his body will be able to fight harder to get rid of whatever is making him feel so bad.


We just can't seem to stay healthy. I hate it.

April 1, 2014

March 2014 --- In like a lamb, out like a lion!



March went out like a lion for the Marshall family, as Ethan battled illness for the last two weeks of the month.  Ethan went to school on Monday, March 17th (St. Patrick’s Day) and didn’t get to return until March 31st (yesterday).

 

After Ethan came home from school on the 17th he had a nasty little cough, so the next day I kept him home from school to take him to the doctor. Ethan had a little bit of clear nasal drainage but besides the cough he seemed to be feeling okay. However, since we don’t like to take chances, we wanted to get Ethan checked out. It was a quick visit and there weren’t any signs of anything serious so we headed home but I figured it would be best to keep him home from school the next day anyway.

 

This ended up being a good decision since the clear nasal drainage started to turn into major yellow and green boogies and Ethan developed a fever as well. We treated the fever with a combination of ibuprofen and Tylenol, but overall Ethan was just miserable.

 

On Saturday evening Ethan appeared to be well enough that Jeff decided it would be okay for him to the Sportsman Banquet at church. Unfortunately, I ended up having to call him and ask him to come back home after Ethan threw up his entire dinner, all over himself, when I put him in his crib for the night.  Ethan doesn’t throw up often, so I knew that something had to be going on. I called and spoke to the doctor who was on call, who knows Ethan pretty well, and she thought that the amount of mucus in his tummy was probably the root cause of Ethan’s vomiting.  It was a very rough night.

 

Sunday we stayed home from church. Monday morning I called the doctor’s office because although Ethan seemed to be feeling better he kept running a fever, which had me concerned. We were able to get an appointment in the afternoon, and planned on getting Ethan’s first “big boy” haircut following the doctor’s visit.

 

The doctor’s visit did not go as we had planned. I had expected the doctor to say that there wasn’t anything to worry about and that we still had the green light for our cochlear implant activation the following day up at Carle. Instead, the doctor was concerned enough that he sent us to St. Mary’s for a chest x-ray and blood work to see if they could figure out why Ethan couldn’t keep the fever broken. So, Ethan and I headed to the hospital. On the way I called to let Jeff know what was going on, and reassure him that we’d be okay on our own, and then I called our friend Amanda, who is a hairdresser, to cancel our appointment to have Ethan’s hair cut.

 

If I had to describe the hospital visit in one word it would be HORRENDOUS.  We were there for nearly 3 hours. No one could get blood, and eventually they had an anesthesiologist come to the ER and he had to take blood out of a vein in the groin area! After they finally got blood, we headed to radiology for a chest x-ray, to rule out pneumonia. The x-ray was pretty simple and although Ethan wasn’t fond of the experience, it was not nearly as traumatizing.

 

As we were finishing up, Jeff was able to meet us at the hospital and took Ethan home while I ran to the store to get more Pedialyte, Tylenol, ibuprofen, etc. Once I got back home we got Ethan settled and I put a frozen pizza in the oven. Before we were able to finish dinner, our doctor called to let us know that he didn’t like how some of Ethan’s blood tests looked, and that he wanted us to head up to Carle to be admitted to the hospital. So, we packed up our bags and headed that way.

 

We arrived at the ER about 9:30pm. If the visit early in the day was HORRENDOUS, our time in the ER that evening was HORRENDOUS on steroids. Between just the regular process of being admitted to the ER, not being able to get an IV started, not having the results from the tests completed earlier in the day, it was almost 2 in the MORNING before we were settled into our room on the pediatric floor and had Ethan asleep and on IV fluids. I don’t believe that I am exaggerating when I say that minus the day that we learned that Ethan had PBD-ZSD; this ER visit was one of the most emotional days of my life as Ethan’s mommy. Ethan would scream every time he was laid down, because he “knew” someone was going to poke him again. He was crying so much he was making himself sick. It was horrible.

 

After getting Ethan asleep around 2am, Jeff and I tried to settle down for the night as well, but it didn’t last long, since Ethan woke up at 4am, and was up for the day. Tuesday, Wednesday and Thursday were long days and looking back sort of blur together. All the tests came back negative, it wasn’t one of the respiratory viruses that they checked for, it wasn’t a UTI, it wasn’t rotavirus, etc. So, since the doctors couldn’t figure out what was causing Ethan to be sick, they didn’t want to treat him with IV antibiotics, so he simply received IV fluids, and we sat in the hospital for “observation.” The doctors and the nurses were great, but we were so excited to be released on Friday! They never figured out what was going on, but since Ethan seemed to be feeling better, we were sent home.

 

Although we despise being in the hospital there were a few “highlights” to our visit.

One of the medical students completing her pediatric rotation was a young woman named Jasmine who had bilateral cochlear implants. Jeff and I had the unique opportunity to speak with the future doctor as well as with her interpreter. Jasmine wore hearing aids until she was 5 years old when she was implanted on one side. She received her second implant only a few years ago and shared that it doesn’t sound the same as the one she had placed when she was younger, but that she believes that having both gives her more access to sound. She grew up oral and did begin learning ASL until late junior high/early high school. She is “bilingual” now, and finds that in noisy situations such as the hospital, while her CI’s are very beneficial she is very thankful for ASL because it can be hard at times to localize sounds and if people are wearing masks, she cannot rely on her lip reading ability. Jasmine shared that she believes that children who receive cochlear implants should still learn ASL. It has been her experience that being both oral and fluent in ASL has made her live richer and enables her to communicate effectively in any situation. The future doctor Jasmine is an amazing young woman who I believe is going to be a very successful physician. She shared that she is considering specializing in anesthesia.

 

In addition to meeting Jasmine, we had the opportunity to share our experience with Ethan getting a feeding tube to a young mom who needed to make that decision for her daughter. As many of you know I am pretty open about all of this stuff, so I didn’t have any problem sharing. What made the experience unique is that the mom was Puerto Rican and since I only know a handful of Spanish words/phrases we spoke through an interpreter as well.

 

Who would have guessed that our hospital stay would be such a multilingual experience?


March 13, 2014

Maybe eating isn't as bad as I thought?

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

March 11, 2014

March 4, 2014 - Cochler Implant Surgery

We've known for a long time that because Ethan has PBD-ZSD  his hearing loss would probably be progressive and that at some point hearing aids alone would not provide him with adequate access to sound. Ethan received his first set of hearing aids when he was just 4 months old. Over the last 3 years his hearing loss has been monitored and his hearing aids were turned up, then last year he got new stronger powered hearing aids and those were then turned up several times, but Ethan just didn't seem to be responding well to them.






In November Ethan had another sedated ABR (hearing test) along with an MRI and a bunch of blood work. The ABR's results showed us that Ethan's hearing loss had gotten worse and it was now time to move forward towards a cochlear implant. So, following the ABR we began having all of Ethan's records sent to implant team at Carle Clinic for review so that the surgeon, audiologists, and speech language pathologists, etc. could determine if they believed that Ethan would be a good candidate for a CI.






Thankfully the team agreed that Ethan would benefit from a CI and in January we had a few appointments with the audiologists and speech language pathologists, and we began the long wait to get the green light of approval from our insurance company. It took several weeks, but we got the okay and then waited for a call from the hospital about when the surgery would be scheduled. When we got the call we were told that Tuesday, March 4, 2014 was going to be the day! Since this was still over a month away we didn't start to panic, at least not at first.






We were so excited about the possibility of providing a way for Ethan to have more access to sound, but it is still SURGERY and every surgery has risks. We had to make sure we had all the necessary instructions from the endocrinologist in regards to IV steroids that had to be given during the procedure, we spoke with the geneticist and had labs ordered so that they could draw the blood while Ethan was "sleeping," and spent the time reassuring ourselves that this was the right then to go for our son, but hating the fact that he was going to have to have surgery.






The day was finally here! On Tuesday morning we got up early and the three of us headed to Carle, arriving a little before 7am. We waited in the surgery waiting room for a bit before getting called back to do all the pre-op checklists/prep. Shortly after the nurse began going over things, Doey, one of the Child Life Specialists who we had met on a previous visit at Carle was going to be able to be with Ethan -- she could go with him to surgery and be with him in recovery before we could, came to our room. Dr. N. the surgeon also came by and spoke with us and we signed all the necessary consents and then had to say "bye" to our little man.






I DIDN'T CRY!!! That is a pretty big deal -- my little boy was headed to surgery, but I was strong. We will NEVER get used to hospital stays, surgeries, etc. and I will always be anxious about them, but we are feeling more comfortable and have more of an understanding about the process, etc. since we've had multiple hospital visits over the years.






Jeff and I headed to the waiting room, where we ended up making a new friend, another mom whose little boy was having surgery. Her son and Ethan had actually became friends back in pre-op when neither one wanted to stay in their rooms. Although she is not the mom of a child with special needs, several of her close friends are and we had an enjoyable visit.






My parents and Pastor Tracey arrived not too long afterwards and so we all visited while we waited. A nurse came by and told us that Dr. N. had begun the surgery at 8:21am. We also spoke briefly with Doey who assured us that Ethan did fine getting to sleep and that she would be back to be with him when he woke up, before they called us back to recovery.






A few minutes before 10 am Dr. N. came and spoke with us. He said everything went great and that we should be headed home as soon as Ethan was feeling better. We had been prepared to stay -- although this is typically an out patient surgery, nothing about Ethan is very "typical" --- but Dr. N. didn't see any reason unless Ethan did not do well waking up from the anesthesia that we wouldn't be going home that day!






A nurse actually came to get us to take us back to recovery while we were still talking with Dr. N. so we once again thanked him and confirmed that we would be back in about 3 weeks to have the CI "turned on."






When we got back to recovery Doey was holding Ethan and he was very sleepy and very upset. I tried to comfort him, but of course he wanted Jeff. Ethan and his daddy cuddled a bit and after just a little bit the nurse took out the IV and that really seemed to make Ethan happier. It wasn't long before my parents, Jeff's mom (who had arrived just a few minutes before we were called back), and Pastor Tracey joined us in recovery. The nurse told us that Ethan was doing great and that we could start packing up to go home! So, Pastor Tracey prayed and headed out and the rest of us visited while we waited for transport to take Ethan and I out while Jeff went and pulled the car around.






We were in the van just a few minutes before 11am and headed home! I just couldn't believe it. Ethan slept the majority of the drive and once we got home he acted very happy to be home with his toys. It was incredible, besides the funny bandage on his head, you would never have thought he had had surgery just a few hours ago. My parents followed us home and spent a few hours visiting and playing with Ethan before heading home themselves. Ethan was soaking up all of the love and attention from his grandparents.




Although Ethan had surgery and the device implanted on March 4th it will not be turned on/activated for about 3 weeks. This gives the surgical site time to heal. We are cautiously optimistic about what Ethan's response will be when it is turned on. We have been told that a CI is a different type of hearing than hearing with is amplified with hearing aids, so things may sound different to Ethan than they did before. It is our prayer that by providing Ethan with greater access to the sounds around him he will be able to increase his ability to understand and communicate.

















February 11, 2014

January 2014 -- SNOW, ICE, & BITER COLD TEMPERATURES

Following a busy Christmas season with family, the New Year started out slow as the cold weather and snow/ice kept us inside where it was warm. School was closed numerous times throughout the month due to the snow/ice and/or biter cold temperatures and there were even a few days that the roads were too treacherous for Jeff to make it across town to go to work.






One of the best days of the month was Sunday, January 12th when Vicky and Kenna came to visit us! It was a joy to attend church with friends who we consider family and spend the majority of the day with them before they had to head home. I don't think I'll ever get tired of spending time with other GFPD families -- there are so few of us and we are spread out throughout the country/world -- that anytime we get to spend with one another is very special.








Despite the weather, Ethan did have several visits with specialists. 
  • On the 13th Ethan saw both the GI and the Neurologist. They were both happy to see how well he is doing. He had lost a little weight, so we are boosting up his calories a bit. The GI wasn't worried, he was excited bout how mobile Ethan is becoming and believed that the weight loss was simply because Ethan's activity level has increased. The Neurologist was also very pleased to know that the combination of anti-seizure medication with the increased daily steroid dosage has Ethan's seizures under control and that we couldn't even recall when he had his last seizure.
  • On the 14th Ethan had a speech/language evaluation with members of the cochlear implant team. This evaluation was the next step in determining if the team believed that Ethan was a good candidate for a cochlear implant. The evaluation went as well as we could have expected, as his parents we are well aware of how delayed Ethan is and his very limited ability to communicate. Just a few days after the evaluation we got the call to let us know that the cochlear implant team was in agreement that Ethan was a great candidate for an implant and that giving him greater access to sound could only benefit him and his quality of life. While we are of course nervous about the surgery, we are excited about the potential for Ethan to be able to hear more of the world around him.
Jeff and I also started our Foster/Adoption classes in January. As most of our family and friends know, after Ethan was diagnosed with PBD-ZSD and learning that we had an 1 in 4 chance per pregnancy to have another baby who had PBD-ZSD we decided that we were not willing to "risk it." Although there have been many other families that have went on to have healthy children after having a child with PBD-ZSD, there are also many who have not been able to and have made decisions to terminate the pregnancies after prenatal testing made them aware that the baby had PBD-ZSD. Since we knew that we would not terminate, we decided together very shortly after Ethan's diagnosis that we would have to build our family another way.






When you find out that you and your spouse are carriers for something as nasty as PBD-ZSD and that there is such a high risk of having another child impacted, the options and choices for family building become limited, complicated, often very expensive, and still there is no guarantees that you will be able to add a healthy child to your family. There are members of our GFPD family who have built their family through natural conception (risking it), sperm donation, egg donation, embryo adoption, in-vitro fertilization with preimplantation genetic diagnosis (IVF w/PGD) so that only embryos that tested negative for PBD-ZSD are implanted, private/domestic infant adoption and adopting out of foster care. Due to numerous reasons (our faith, the fact that Ethan is still living, and finances) the only option that has ever been a real option for our family is pursing adoption out of foster care.


We are fortunate to know several families from our area who have adopted children out of foster care, so we have seen albeit second hand, many of the ups and downs, joys and frustrations that come along with the process. It is our prayer that we will be able to add a healthy, typically developing little girl (preferably under the age of 3) to our family sometime in the future. The classes that we began in January are the first step in the process. After finishing our classes and completing all of the other requirements we will become licensed foster parents. We are expecting that sometime in April we will become licensed.


After we become licensed foster parents the "wait" will begin. Since we are choosing to be pretty specific about the child we plan to adopt we can expect to wait for a while, and that is okay for a number of reasons. First, we want to get Ethan's cochlear implant surgery and the healing and programing that is part of the process completed before we seek to add to our family. Secondly, we are choosing to not fall in love with a child whose parental rights have not yet been terminated, so that fact along limits the number of children who are available. It typically can take 18 months to 2 years for parental rights to be terminated, even if a child is taken into foster care shortly after birth so we know that the daughter we are hoping to add to our family will likely be a toddler, which is okay. To be honest I'm not sure how well I would be at meeting the needs of a newborn and Ethan (especially since Ethan's schedule since Christmas has included morning wake ups around 4:30am to 5:15am on a very consistent basis).


Overall, January was a pretty quiet month with a few very exciting "starts" toward future major changes for our family over the next few months. Ethan's cochlear implant surgery has been scheduled for early March and we would greatly appreciate your prayers as we begin this new hearing journey.