October 31, 2011

Happy Halloween!

This year Ethan was a monkey for Halloween. We attended our church's "Eats Before Treats," and then headed over to Ethan's great grandparents' house to visit. We then headed home so Ethan could have some dinner. It was a great evening!

Our little monkey!



Daddy & Ethan at our church's "Eats Before Treats"


Ethan and his cousin Grace visiting with their Great Grandparents.


October 29, 2011

Prayers for the Shepherd family of Indiana

Another little one with PBD entered heaven today. This has been a really rough week - I hate peroxisomal biogenesis disorder!

While the Shephered family has hope because they know that their daughter, Kyarah, is with Jesus, their hearts and arms still ache. Please keep their family and all the families impacted by PBDs in your prayers.

Kyarah, 1/11/2011 - 10/29/2011

October 27, 2011

An Up and Down Kind of Day

Today was an up and down kind of day. The day started out on a high note with Ethan doing really well in Physical Therapy.



I am so proud of him. I know that he is very behind in development compared to typically developing kids, but he is still making progress! Progress is progress, even if it is slow. We will continue to celebrate each and every little milestone, no matter when they occur.

Later in the day we had a play date with a good friend and her two little ones. She is a dear friend that I've known for years and a fellow sister in Christ. She has two healthy, typically developing little boys. They are both very cute and are a true blessing to their parents. Unfortunately, it is becoming more difficult for me to be around parents of typically developing kiddos. Ethan has been behind since the beginning, but when babies are really little they don't do alot - but it seems like once they hit about six months typically developing kids zoomed ahead of Ethan and haven't looked back since. I don't like that I don't enjoy spending time with my friends and their healthy kids -- it actually makes me really sad that I feel the way that I do, but it seems like right now that is just how it is.

So, to all my friends with healthy kids, please accept this as my formal apology for ignoring you. It is just too hard sometimes! It is too hard to look at healthy, typically developing kids and then see how far behind Ethan is, how hard everything is for Ethan, and that it just isn't fair! It isn't fair that my head is filled with thoughts of what my son will never achieve and wondering how long he'll be here with us before the Lord calls him home. My days are filled with the stresses of getting medicines in, making sure Ethan eats, encouraging him during therapy sessions, making sure we get to all of our doctors appointments, advocating for him and other kids with special needs, sharing the ups and downs with other families with children with PBD, and wondering when the next little one will leave the arms of their parents for the arms of Jesus. This past weekend two little ones passed away and as I type there are three other little ones who aren't doing well and who will likely be with the Lord very soon.

I understand that most people with healthy kids don't want to hear about my days or what goes through my head, so it is easier just to keep a distance. Easier for them and easier on me. Please don't take this the wrong way -- I am glad that so many people have healthy kids. I'm just also very sad that so many kids have it so tough!

I want to thank everyone who is continuing to pray for Ethan and our family. I am thankful that I have friends and family that admit that they can never fully understand what our journey with Ethan is like, but they are along for the ride anyway.

So, today is just one of those days..... sometimes I've got it together and other days are a struggle.... right now it seems like there is a lot of struggling going on....

Heaven is for real!

This weekend two more precious little ones left the arms of their parents for the arms of Jesus. On Saturday, little Chase who was just six months old, left this life for the next. Sunday he was joined by little Ilan, who was fourteen months old. It was a rough weekend for the GFPD family as we all know the devastating reality of PBDs, and grieve together for those whose arms can no longer hold their little ones.

You may have heard or read some of the recently popular books - "Heaven is for Real" by Todd Burpo or "The Boy Who Came Back from Heaven" by Kevin Malarkey. I have read the first, but not the later myself. Since becoming a Christian I have often thought of Heaven, but not nearly as much as I have since learning that most likely my son will leave this earth sooner than I would like - that he will likely be waiting for me there instead of me waiting for him. "Heaven is for Real" is a great book that encouraged me in my beliefs about what the Bible teaches about heaven and about the Lord.

A few weeks ago our pastor spoke about Heaven. Unfortunately I wasn't in the sanctuary for the message, but Jeff told me about it afterwards. One of the things that our pastor shared about was the faith that King David had that he would see his infant son once again. (Please see 2 Samuel 12 for the complete story). The second part of 2 Samuel 12:23 says, "I will go to him, but he will not return to me." While our pastor shared that no where in the Bible does it say -- "Babies go to heaven" -- these verses indicate for us that BABIES DO GO TO HEAVEN.

Does that mean that I will not mourn when Ethan goes to be with the Lord, or anyone else that I love, NO. But does that mean that I have faith and I have hope, yes. If you have never read the "Faith" chapter of the Bible - Hebrews 11, or it has been a while, I would encourage you to check it out. Hebrews 11:1 says, " Now faith is confidence in what we hope for and assurance about what we do not see." For while I can not see heaven, I have confidence that heaven is for real. I have confidence that because of Jesus and his sacrifice on the cross -- paying a price that He did not owe because it was a price that we could not pay -- and because He invites us into a relationship with Him, that we can have spend eternity in heaven with Him. John 3:16 says,  "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."

I also have faith that infants, children and adults that are unable to understand God's gift of love and grace due to age or mental ability, go to heaven when they die. I believe that every baby who died before being born is in heaven with the Lord and that the parents who put their faith in Jesus will see them someday. 1 Thessalonians 4:13 reminds believers that while we may mourn the loss of loved ones who are fellow believers that we have hope - that we do not have to grieve as if we didn't, "Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope."

So, while I am grieving with my friends for the loss of their little ones, I have hope. I have faith that Chase and Ilan are now whole! PBD is gone, they are free of pain or suffering, they have been healed by the Great Physician. In Revelation 21:4 we have the promise: "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

Prayer Requests
  • Please pray for the parents and families of Chase and Ilan. Pray that the Lord will give them comfort and strength as the mourn their loss and ache for their little boys. Pray that those around them will come to know Jesus, if they do not already.
  • Please pray for a cure to PBDs! Pray that miracles would happen! Pray that researchers and doctors would use the knowledge that God has given them to develop treatments and a cure for these nasty disorders.
  • Pray for all families who have been changed forever because of PBDs. Pray for those whose little ones wait for them in Heaven and for those whose little ones are still fighting this horrible disease. Pray that they will have the strength to make the best decisions for their children and the energy needed to be the be best parents possible for their little ones.
  • Pray that organizations such as the Global Foundation for Peroxisomal Disorders would be able to continue to minister to families impacted by PBDs. This organization has been such a blessing to our family!
  • Pray that Ethan will continue to grow strong and remain healthy. Pray for his development and that he would continue to make progress.
  • Pray that Jeff and I will seek the Lord in all that we do as we parent our precious boy. Pray that we will never take him for granted and that we will cherish each day we have with him.

If you don't have a relationship with Jesus - please know that you can have this hope. Romans 5:8 speaks of how great God's love is for us - "But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. " If you would like to talk to someone about God's love for you, please let me know. You can also read more about becoming a Christian here.

October 23, 2011

Prayers for the Bose-Betzer family of New Jersey

Another little one with PBD entered heaven today - two in two days! This disease really sucks! Please keep their family and all the families impacted by PBDs in your prayers.

Ilan Betzer, August 18, 2010 - October 23, 2011
http://obits.nj.com/obituaries/jerseyjournal/obituary.aspx?n=ilan-stanley-betzer&pid=154272553

October 22, 2011

Prayers for the Barno family of Kentucky

Another little one with PBD entered heaven today. This disease really sucks! While the Barno family has hope because they know that their son, Chase, is with Jesus, their hearts and arms still ache. Please keep their family and all the families impacted by PBDs in your prayers.

Chase Barno, 4/18/2011 - 10/22/2011

October 19, 2011

Learning to stand....

Ethan is in the proccess of learning how to bear weight through his legs, which will give him the strength to stand and someday walk!

With the help of his AFOs and the knee immobilizers that the PT brought along with her, Ethan is able to bear weight through his legs and stand with support at the waist. Here are some pictures from last week in PT:






Today in PT while Ethan wore his AFOs and the knee immobilizers he stood with support for over 20 minutes. Plus, his PT was able to let go of Ethan and he was able to maintain his weight for 1 SECOND! I know that standing for 1 second may not sound like much, but in our world this is a HUGE accomplishment. Maybe next week it will be for 2 or 3 seconds. Maybe by Christmas it will be 30 seconds! I think that is going to be one of my Christmas wishes :).

We are so very proud of our little man! We love him so much!

October 18, 2011

A Visit with Friends

This morning Ethan and I got in the car and headed north. We were on a mission to go visit our dear friends Mabel and Ramee. Ramee and I met back in the summer when I started to reach out to other parents in our area who have extra special little ones. We've talked online, on the phone, and met in person this summer when she hosted a 5K walk/run to raise awareness for rare disorders in honor of her beautiful daughter Mabel. Mabel is one week older than Ethan. She is so cute!

We had so much fun visiting and talking about things that only "dragon moms" understand. [Please read previous post for explanation]. In the few months that we've known each other she has already become a dear friend to me, and is a beloved sister in Christ. I am so fortunate to have someone in my area as well as two amazing women (Mel and Vicky) who are just a phone call away that love the Lord. We know that God has an amazing plan for our extra special little ones and for us and that He loves our kids even more than we do (which is REALLY hard to imagine). I thank the Lord for bringing these women into my life. I will admit that I sure wish it had been under different circumstances, but.... they are a true blessing to me.

Here are some pictures from our playdate with Mabel.




October 17, 2011

I am a Dragon Mom....

You might wonder what it is like being a mom or dad parenting a child with a fatal prognosis. This mom shares her views parenting her son with Tay-Sachs Disease. I think that her thoughts echo most "Dragon Moms."

"Notes From a Dragon Mom"

October 12, 2011

The wait is over, well sorta....

The Cystadane (betaine) arrived this afternoon. Ethan will begin taking the medicine in the morning. Please pray for us - we are taking a huge leap of faith for Ethan and the future of all kids with PBD. Ethan is one of the first kids with PBD to take this medicine, we aren't sure that it will help, but they don't think it will hurt. It is scary to be one of the first.....

October 11, 2011

Waiting...

We are currently playing a bit of a waiting game...

This morning I woke Ethan up early and put him in the car, PJs and all, and headed to Carle Clinic in Urbana. Ethan had to have baseline blood work done so that he can begin the Cystadane (betaine) medicine when in arrives in the mail. The test were "fasting" tests, so he had to wait to eat until after the blood draw. I hate blood draws, especially fasting ones because it can be so hard to find his little veins. They did have to stick him twice this morning, but he was a real trooper. He always is. He has been through so much in his 14 months.

So now we are waiting for the medicine to arrive. Please don't be fooled, Cystadane is not a cure to PBD. Actually, they aren't even sure if it will "work" in kids with PBD. It has only been tested in the lab on skin fibroblast cells. So, Ethan is one of the first PBD patients to take the medicine. This scares me some.... but what scares me more is what if it does help and we wait until we aren't the first and then wish we hadn't because it could have been more helpful if he would have begun taking the medicine earlier. Here is a link to the article that was published that shows evidence that betaine may be beneficial to children with peroxisomal disorders: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851769/

So, now we wait. Wait until the medicine arrives and then wait to see if it helps. What are we expecting it to do? Well, the hope is the Cystadane will increase Ethan's peroxisome function and because of increased peroxisome function his very long chain fatty acids (VLCFAs) will lower. After taking the medicine for 4 weeks Ethan will have another blood draw, which we can do here in town, just to check to make sure that his liver functions aren't being impacted. Then in six months they will do a full repeat of the baseline tests (VLCFAs, plasmagens and liver function) to see if there has been any change.

If there are positive changes, what might this mean? We aren't sure. We'll just have to wait and see.... Part of the "problem" is that we have no idea what the course of Ethan's disorder will be. Every child that has PBD is a unique individual and the disorder impacts each child in a different way. So, with Ethan being so young, there is no way of really knowing how much the treatment might help, if that makes any sense.

In addition to waiting for Ethan to begin the Cystadane treament we are waiting and counting the days until we get to move into our "new" home. We close on our current house this Friday! Then we are off to Jeff's parents' house for several weeks while we wait to be able to close on our new home. We are so excited about our new home. It is a ranch with very few stairs to navigate. The front has actually already been ramped for a wheelchair and the only other step in the house is a small step down onto the screened-in porch. The house also has a playroom/office right off of the living room, which is great! I am looking forward to having a place for all of Ethan's toys and therapeutic equipment. The house needs a little bit of work and it may take a little time to make it feel like home, but we are very excited. Waiting is hard though... we just want to get the keys and start working on making it ours... We are very blessed though that our house sold so quickly and that we have a loving family that will take us in for a bit.

October 10, 2011

Progress...

Ethan's ability to sit without support has continue to improve over the last few months. He is now trying to transition out of sitting by himself. Usually this simply means that he falls over, but he has been getting a little bit more control recently. I caught this on video this morning:

October 8, 2011

Black Bart's Pumpkin Patch

Today we headed to the pumpkin patch with friends from our Special Connections group. Special Connections is a playgroup sponsored by Decatur's Baby TALK designed specifically for parents and their children who have special needs (birth to age 5). I am proud to say that I was a driving force behind getting the group started and feel blessed to be part of an amazing group.

Ethan's two buddies - Joshua and Mason's families joined us for the grand adventure!