June 30, 2012

TEETH!

Teeth and the lack of them are continuing to be a problem at our house. I am still suffering with the pain of dry sockets from last weeks wisdom teeth removal, and our poor little man has been working on the top front two teeth for months!

Look what showed up yesterday!

Last night was a LONG night! Ethan was up until 1 am, back up from 3:30-5:00am, and then back up at 10am. It is going to be a LONG day. Hopefully a good afternoon nap for Ethan will make things better. 

If you are in the Decatur/Mt. Zion area and like ice cream please consider attending the Mt. Zion Community Ice Cream Social tonight from 5-8pm at the Mt. Zion United Methodist Church. Ethan is one of the individuals being blessed with a portion of the proceeds of the event - which we hope to use to help offset part of the cost of an adaptive stroller/wheelchair for our little man.

June 26, 2012

It's been a long week and a half.....

It seems like it has been weeks ago since we returned from our little "get away" but in reality it has only been a little over a week....

Ethan's eating habits have gotten worse. He is now screaming the moment he sees a spoon! He continues to have a meltdown when he even gets near the high chair, and even gets upset when Jeff picks him up and carries him into the kitchen. He isn't even letting me feed him in the living room -- one day I had some success by following him around and shoving a bite in here and there as he played, but that isn't working anymore either. So, as of now, Ethan' isn't eating any solids all day. With Jeff's help we are getting Ethan's medicines in as well as a few bites of food in the evenings. Ethan is taking his bottle a bit better, and while I know that we can get enough nutrition in him if he'll drink 24 oz. of his pediatric drink, it isn't an ideal situation.

I took Ethan to the doctor yesterday and there are no signs of dehydration which is a huge blessing and he hasn't yet lost a significant amount of weight, so as long as we can keep him hydrated we have to try not to be too worried, but since eating and drinking is something that has been a constant battle for Ethan since birth, it is hard for this momma not to be concerned. The doctor, the OT, and the SLP don't have any ideas on why Ethan has become so aversive once again to eating, but we will keep working on this and pray that this is just another "Ethan" phase and that he'll start eating again soon.

Last Wednesday I had all four wisdom teeth removed. Thankfully, Jeff's parents were able to help out with Ethan the day of the surgery and Jeff was able to stay home with us as well. The surgery went well and I am very thankful that I don't have any memory of the procedure! On Thursday my friend Sarah was able to come and spend much of the day with Ethan and I. On Friday we were on our own, but I was feeling much better by then. However over the weekend the pain continued to linger and started getting worse, and by then I was out of all the "good" meds that I'd been sent home with. On Sunday evening we had a deacon family fellowship and I was feeling pretty lousy by the end of the night -- not because I didn't enjoy the company, but because my mouth HURT!

So, I called first thing Monday morning and was able to get back into the dentist and of course -- two dry sockets! URG! I was glad to be told that there indeed was a real cause for the continued pain and that I wasn't just being a sissy. [After giving birth to Ethan, and I have no shame in admitting that I got all the modern medicine that they would give me, that my pain tolerance level has changed -- I used to think getting shots or giving blood was tough. LOL -- after having a baby, that is nothing.] As for the two dry sockets that were causing the distress -  the doctor got them packed full of something which made them a lot better, told me to keep taking OTC pain relievers and told me to come back on Tuesday.

So, this afternoon I went back to have that packing removed and have them repacked. The dentist who did my surgery was not working today so I saw another one of the doctors today and the stuff that was packed in the dry sockets today is supposed to say in a week, so I'll go back next Tuesday to get it out. And of course since I haven't had a good "PBD" cry in a while, the dentist's office seemed like a great place to do it when the dentist asked how old Ethan was and I answered "almost 2" and I started to cry. But God is good, and the dentist shared that he is a Christian and we had a little "God moment" there in the office. I shared about Ethan's disorder and how blessed we are that he is still with us and that all life is precious and that without the Lord's strength I'm not sure how in the world we would handle this (since even with His help it can be really, really tough).


After my little break down I got to talk to a dear friend and sister in Christ and this PBD journey, Vicky. God has truly blessed my life by bringing women like her and Mel, and so many other amazing women into my life who share a heart for the Lord and a love for these very special children that He has given into our care while they are on Earth.

I am so thankful for my GFPD family and while not all of us share the same beliefs, cultures, or even languages there is a unique bond that has made us family. The Marshall clan is counting down the weeks until we get to see so many members of this extended family in Orlando -- we'll be at the 2012 GFPD Family Support Conference in about 5 weeks. There are going to be over 20 children/adults with PBD in attendance, which as far as I know is the largest gathering ever of children with PBD, in the world! Our mighty little non-profit is doing amazing things for the families impacted by these rare diseases. I'm not sure I can ever thank those who had the vision for connecting with other parents of children impacted by PBD nearly 20 years ago at a time when the Internet was still such a novelty for most people -- it is because of them and the families that followed that the GFPD was created - thanks John, Heather, Shannon and so many others!!!!

I want to also again thank all those who continue to pray, support and bless our family. It is hard to explain how thankful our family is knowing that we are going to be able to enjoy our trip to the GFPD conference and not have to worry about the financial stress of a "vacation" to FL. We have been overwhelmed by the generosity of our friends, family and even complete strangers who have heard about Ethan and our family. We were able to raise over $4,000 between our letter campaign and the Pancakes for PBD event which will cover all of our conference expenses and help underwrite the expenses for other families to attend the conference as well. THANK YOU!!!

As most of you know that I am very involved in the GFPD and as the Family Registry and Support Group Coordinator I have the pleasure of helping other families know that they are not alone in this diagnosis and journey and that the GFPD is here for them regardless of where on the journey a family is. I think all of us would say that this diagnosis changes you and your family FOREVER. While it is at times very difficult caring so much for all of our families throughout the world, I feel like this is part of my purpose. I may not be able to "cure" Ethan, but I can do this. I feel honored to be a part of such an amazing organization and extended family.

That being said, I need your continued help! We need to keep spreading the word about PBD and about the GFPD. We need to help build the GFPD into a force that can help fund research, learn more about PBD, find treatments and a cure; continue to offer yearly conferences that allow families from around the world and the top specialists gather to learn more from one another and to build connections and relationships that are life changing; and we need to be able continue to get our name to all edges of the globe so that families around the world know that they are NOT alone in this. We need to partner with organizations for families impacted by X-ALD to get newborn screening for X-ALD and PBD passed in every state in the US and eventually all countries. We need to help advocate and spread awareness of pre-pregnancy carrier testing for couples who are planning on starting a family, so that they are able to be aware if they carry recessive traits for hundreds of different deadly genetic diseases so they can make informed decisions about how they want to proceed with building their family if they discover that they both are indeed carriers, etc. There is so much work to be done!

So, how can you help?

  • Pray for the GFPD, the leadership team/Board of Directors, and all the GFPD families. Pray that the GFPD will be blessed with generous donations that will allow for financial security for the non-profit to be able to continue ministering to families and fight for better outcomes for children with PBD.
  • Share our story! Tell people about the GFPD, PBD, Ethan, and his friends.
  • Check out the GFPD website to learn more about our organization and PBD.
  • "Like" the GFPD on Facebook and share it with all of your friends.
  • Check out Counsyl website and learn more about pre-pregnancy carrier screening for those planning to start a family.
  • Become an advocate for all rare diseases - check out NORD's website which will help you send emails to your elected officials about important legislation that will benefit individuals and families impacted by rare diseases.
  • Sign petitions and spread the word about the need for adding newborn screening for X-ALD (that will also "flag" PBD).
  • Educate yourself, your family, and your children about children and adults with special needs, and try to see them as the unique individuals that God created -- not to be feared, neglected, bullied, or made fun of, etc.. Spread the word to end the word. If possible, find ways to get involved locally with families with children who have special needs --- volunteer to be a one-on-one helper at church, start a special needs ministry/outreach, support your local non-profits that minister to kids and adults with special needs such as Easter Seals, volunteer with Special Olympics, the local riding stable that has programs for kids with special needs, etc. Get involved and help your children make friends with other children who might be "different" than them. Find books that have pictures of kids with hearing aids, wheelchairs, and other type of devices so that they begin to understand why some kids and adults wear/use/need such equipment. And when you see a parent with a child with special needs, say hi, smile, open a door, and please be kind. Thanks. :)








June 17, 2012

Marshall Family Summer '12 Staycation #2

For this "staycation" we actually stayed two nights in Clarksville, MO (about an hour south of Hannibal, MO). We left on Friday afternoon with a car full of stuff, and of course we realized later that I had not packed a tooth brush, shampoo, or conditioner, and headed west.

Our first stop was Hannibal, MO -- the boyhood home of Mark Twain. It is a cute little town and Jeff, Ethan and I walked down the little main street looking into shops and reading signs about the historical significance of the buildings. It was WARM but it was fun.

Then we headed to our actual destination -- which was a generous gift from Jeff's parents -- a few nights at a resort. We had actually wanted to go somewhere else but since those locations weren't available we ended up with Clarksville, MO since Jeff was only going to be able to take a Friday and a Monday off of work and we didn't want to travel to far with Ethan.

The resort itself was nice enough, but was definitely designed for families with older children in mind. Those who would enjoy the outdoors - fishing, paddle boating, canoeing, playing miniature golf and swimming. It was a blessing though to have some time to escape the world -- we were in the middle of  nowhere and to be a family.

On Saturday afternoon the Maag family, who live just a little over an hour from where we were staying, came to visit. My friend Vicky brought her two lovely daughters - Clancy (8) and Kenna (3). Unfortunately her hubby, Shannon, had to work this weekend and couldn't make it. We had a great time, we visited, swam, at dinner, and then braved a bit of a thunderstorm together before they had to head home. We are very blessed to call the Maag's our friends. Vicky and I are sisters in the PBD journey and fellow sisters in Christ.

Ethan didn't nap Saturday except for about 15 minutes in the car on our drive from the grocery store back to the resort that afternoon, so he was not very happy as the evening came. He hadn't been eating well and had been refusing his bottle all together. So, when he went to sleep at 7:30pm we thought - WOW - this is going to be great if it lasts. Well, it didn't! Ethan was up from 1am to almost 4:30am. My amazing husband Jeff, let me go back to bed from 2am to 4am. Then at 4am we all got in the car and drove in the middle of nowhere until Ethan feel asleep. During our 4am drive along MO Highway N we talked about whether or not we could do this another night away from home or if we should head back home earlier than originally planned -- it is one thing to be up in the middle of night at home when your 22 month old won't eat, sleep, drink or poop, but doing it while away from home is even tougher! So a little before 5am this morning everyone was back in bed a Jeff and I were hoping that we'd all get SEVERAL more hours of sleep, but that wasn't Ethan's plan. He was back up at 7am!!

After refusing the bottle again, and playing for a while at 8am I tried to get him to eat. His screaming of course woke up Jeff who was so kind as to come out and help rather than but a pillow over his head to try to block out the noise. Have I told everyone I am married to a really great guy? He is a great husband and father! Since Ethan was still not drinking, wasn't eating well, was very grumpy and still constipated we decided that we would go swimming one more time (the pool opened at 10am) then have lunch (we'd bough a frozen pizza the day before from the grocery store in Louisiana, MO) and then we'd back up and head home --- hoping that Ethan would take a nap on the drive home.

We got to the pool a little after 10am and the maintenance guy was doing a few last minute things, since the storm the night before had blown a lot of leaves, grass, etc. into the pool area, so we hung out for a  few minutes while he finished up. The neatest thing was that we had the whole pool to ourselves. We hung out in the kiddie pool for a while, then went to the larger pool. Ethan really enjoys "swimming." He LOVES to splash! After having some fun we headed back to our place to have lunch and pack up. Ethan still wouldn't drink much and didn't want to eat, so we all got cleaned up, Jeff and I ate, we got a little food in Ethan and we got packed up and hit the road for home. Ethan didn't sleep as much as we thought he would on the ride home, although my once again amazing husband did let me have a nice long nap. :)

When we got home Ethan was so HAPPY to have his toys back and to be home. He still did not want to eat or drink though. We got a little bit of applesauce and fruit puree in him for dinner with Jeff holding him, since he would not tolerate the high chair at all. We tried to put him to bed at nine, but that wasn't happening and he just screamed and jerked his body around whenever we got the bottle near him. A little before ten though he was finally tired enough that he allowed me to hold him and he drank a whole 8 oz bottle, fell asleep and I was able to put him to bed! Praise the Lord! This was the most he had drank since Wednesday!!!

Hopefully we will all get some much needed rest tonight!

Prayer Requests

  • Pray that Ethan would eat, sleep, drink, and poop like he needs too!
  • Please pray that Ethan would not have these type of troubles when we travel at the end of next month to the GFPD Family Support Conference in Orlando, FL. Pray that he would become a better traveler and that we would realize it is okay to eat, drink, sleep and poop when you are away from home.
  • Pray that Ethan would continue to grow and develop, that he would remain healthy and happy.
  • Please pray that the doctors, scientists, and researchers studying PBDs will be able to get the funding needed to keep working to find treatments that would help our children. The specialists who have dedicated themselves to researching rare diseases are having a really tough time keeping their labs and projects up and running and while they would like to start new projects or trials they need the funding to be able to do so.
  • Pray for the upcoming GFPD Family Support Conference. There are going to be over 100 families from the US, Canada, and possibly a few other countries coming to the 2nd annual GFPD Conference. Please pray for my friends Shannon and Melissa and the rest of the GFPD Board of Directors as they finalize the details.
  • Pray for all families whose lives have been changed forever due to PBD. Please pray specifically for those who have recently received a PBD diagnosis and for those who have had children pass away. 



June 13, 2012

Two more little ones are now with Jesus

I learned this morning that two more little ones with PBD had left this world and the arms of their parents for the arms of Jesus. It is so tough, because although I haven't met either of these families in person I have had the chance to get to know them a bit through our GFPD Family Support Group.

Please pray for these families and all families who have lost a child. My heart breaks.


Ellena Page, August 26, 2011 - June 12, 2012
United Kingdom

Kevin Feldtmann, May 6, 2009 - June 12, 2012
South Africa
I

June 11, 2012

ENT visit

We had Ethan's six month check up/in with his ENT this afternoon. Overall, the visit went well. Ethan's ear canals are still REALLY small and I'm not sure that she could see much but otherwise she said Ethan looked good and that his cough and the boogers were likely just viral since his throat looked fine and she didn't see any redness in his ears.

Ethan's hearing tests over the last year had some really mixed results, so we are planning on doing a sedated ABR this fall. He has never had one. We've done natural sleep and booth testing, but we need a good picture of where his hearing really is, especially since for many kids with PBD it seems that there is a dramatic change in hearing around the ages of 2 to 4. What makes it more difficult is that we are trying to coordinate having an MRI done at the same time/day so that Ethan would only have to be put under once.

Why a sedated ABR? It will give us the best results to let us know where Ethan's hearing really is. This will allow his audiologist to set his hearing aids at the optimal level/setting and/or if the results show us that his hearing has gotten bad enough it will allow us to begin the road toward cochlear implants.

Why an MRI? Well, Ethan has not had one since he was 3 weeks old and while nothing an MRI shows/tells us will change anything that we are doing for Ethan, it might give the specialists a bit more insight into PBD and also let us know how the disease is impacting our little man's brain. Do I want an MRI? NO, I mean I know my son's brain is impacted by PBD, but could knowing more about the progression of this disease be helpful -- I think so. This might be even more important since as you all know Ethan has continued to take Cystadane, the trial medicine that we hope may increase the function of his peroxisomes. So, while I don't want it, I know we should.

Prayer Requests

  • Pray for Ethan's friend Ginny. Ginny had her cochlear implant surgery today. She will be 4 this summer. Her mom, Melissa, is a dear friend to me - a sister in Christ and in this PBD journey. Please pray for a speedy recovery and a very successful transition in the coming weeks and months as the implant gets activated.
  • Pray for families who have just recently received the news of a PBD diagnosis. It seems like we (the GFPD) have had a large number of families join our group in the last few weeks, most with very young little ones.
  • Pray for miracles, pray for healing, pray for treatments and a cure. Please lift up the doctors, researchers, nurses, therapists, and teachers that help us try to help our kids reach their fullest potential.
  • Pray that Ethan would wear his glasses. He is still refusing. He rips them off so quickly and even with two adults we can't keep them on him. He lurches and screams and cries. He really hates them.
  • Pray that Ethan would remain healthy and that he would continue to grow, develop and learn. Pray that he will learn to stand, walk, talk, and be happy and healthy.
  • Pray that we will have wisdom and feel God's presence as we make decisions, care for, and love Ethan daily.
  • Pray that people will come to know the Lord and His hope.

June 9, 2012

ICE CREAM!

Okay, so it wasn't actually ice cream. It was a dairy-free (coconut-milk based), vanilla flavored frozen dessert, but Ethan tried it for the first time today! He had a few little bites, I'm not sure he knew what to think.

June 5, 2012

My Strong-Willed Little Boy

Ethan is 22 months old and it is showing! All of our therapists laugh because it seems like most of the kids they see, despite the challenges that they have, still experience the "terrible twos." 

Ethan wore his glasses so well on the first day but we haven't been able to keep them on for longer than a few seconds since then. Even if we hold his hands he will wave his head back and forth or try to rub his face with his shoulder to get them off, all while screaming of course because we are holding his hands. If we don't hold his hands the glasses are off before they can get on and adjusted.

Ethan has also decided that he shouldn't have to wear the one hearing aid that is working. He yanks it out almost immediately every time I put it in he pulls it out.

Bedtime has been going a bit better. Ethan is so mobile - combat crawling all day long - that he seems to be wearing himself out a little more. Last night he was asleep by 10pm and tonight by 9pm. He still needs medication to help, but that is success in our book.

Ethan sure has a mind of his own and a personality to match. We would appreciate lots of prayer for Ethan to accept and enjoy his hearing aids and glasses. We pray that he will understand that they are designed to help him and that he will learn to tolerate them and eventually even want them on because he realizes that he can hear and see better with them on.


June 4, 2012

Great Grandma Chambliss Visits

This afternoon Ethan got to visit with his Great Grandma Chambliss. Unfortunately we didn't get any pictures because he wanted to play on the floor and show off in his walker instead of cuddling with his Great Grandma. It was still a great afternoon though!


June 3, 2012

The Marshall Family Summer '12 Staycation #1

This summer we are hoping to take lots of little "Staycations." Today we took our first one.

We had to go to Champaign to pick up a bridesmaid dress for a wedding I'm in October and needed to stop by Babies R Us to get some new Dr. Brown bottle supplies. On the way home we decided to go to Allerton Park in Monticello. We were only there for a short time but we had fun!


I love this one!


Can you pick out my two Marshall men?



On the drive home we saw a double rainbow! I had Jeff pull over so I could take pictures. It is tough to see, but it is there, I promise.






Jeff and I said a short prayer there on the side of the road. We thanked God for the reminder that He will not destroy the earth again by flood and for all of His promises and His love. We prayed for Ethan and for this journey we are on.

"And we know that all things work together for good to them that love God, to them who are called according to his purpose." Romans 8:28 (KJV)

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NIV)

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." John 3:16 (NIV)

I am thankful for the hope that I have in the Lord's promises, and although sometimes it is extremely hard to understand things this side of heaven, I know that His promises are true.