July 25, 2011

Birthday blessings!

Ethan turned one on Saturday. Turning one is a major milestone for a kid with PBD. Eleven months ago were weren't sure if we'd make it, but by the grace of our Lord Jesus Christ, we have been given our first full year with our son. We love Ethan so much and we were so proud to be able to share his birthday weekend with family and friends.

We had a wonderful family celebration on Saturday afternoon and on Sunday afternoon we celebrated with our church family and other dear friends and loved ones.

Here are some pictures from Saturday's party!

Both Great Grandpas were able to be at the party. What a blessing!

Family fun!

Ethan and his Grandpa Chambliss.

Ethan getting ready for his cake.

Ethan and his cake.

Ethan and his Aunt Donna.

Ethan and Grandpa Chambliss are good buddies!

Ethan's HUGE cake!

Cousin Matt, Aunt Amanda and her boyfriend Jaron.

July 20, 2011

A Cold in July??

Yep, that is right, Ethan has a COLD.... I'm not sure where he got it from, since it has been so HOT here! :)

We cancelled PT for the day and headed to the doctor (better safe than sorry) and were told that Ethan's cough, running nose and watery eyes were just a cold and that he would just have to work through it.

So, we headed to Springfield for our afternoon ENT and Audiologist appointments. Let's just say Ethan was less than cooperative. We did get impressions for new ear molds made though, and they will be in when we get back from Omaha!

July 18, 2011

Monthly visit with the dietitian...

Ethan has been growing!

Today he weighed in at 21 pounds and 3 ounces (50th percentile) and measured 30 and 1/4 inches long (almost 75th percentile).

We are so proud of our little man. We've come a long way from the early days of his "failure to thrive" diagnosis and visiting Dr. Smith's office every day to get weighed in just to make sure he was gaining weight and staying hydrated.... wow, what an answer to prayers.

Prayer Requests
  • Please continue to keep Ethan in your prayers. PBDs are unpredictable and although he is doing really great with his weight right now, depending on Ethan's ability to transition to more solid foods, etc. there may be a time that he struggles to maintain proper nutrition and growth (most kids with PBD are small and struggle with eating/proper nutrition and many are tube fed, to insure adequate calories/hydration).
  • Please pray that Ethan would continue to transition to more solid foods and that he would learn to drink out of a sippy cup. He doesn't want anything to do with it, and we've tried a lot of different styles, even one with a straw. He still won't really hold his bottle and drink from it, but we won't be taking his bottle away until he really masters a cup - which could be a long time from now.
  • Pray that he will easily transition from the infant formula to the toddler formula and that it won't cause any additional tummy trouble (he still has difficulty going #2 a lot of the times even with the prescription medicine he takes to help him go).
  • Pray for all families impacted by PBDs, and especially remember those whose little ones are in Heaven.
  • Pray for treatments and a cure. Pray that the Lord would enable the doctors and researchers to make breakthroughs that would increase the quality of life for children with PBD.

July 15, 2011

Why Ethan? Why anyone?

Ethan hanging out in his highchair after finishing his dinner the other night. :)

Ethan's first birthday is only eight days away. Wow, what a year it has been. If you would have asked me on Friday, August 20, 2010 (the day that Ethan was diagnosed with PBD-Zellweger Spectrum) if we would be getting to celebrate Ethan's first birthday, I probably would have just burst into tears and not been able to say anything..... But, the Lord willing, we are going to make it --- just eight days to go to a huge milestone for any child, but especially one with PBD. I still have days that the tears flow freely - I've had at least two of those days this week, but most days it is very hard to even remember how I felt when we first recieved the news that our beautiful baby boy was not well. This has not been the year I would have every expected, but I am thrilled that I can hug, kiss and hold my little boy and we are celebrating the blessing that he is to everyone who knows him.

Since Ethan's diagnosis I have thought to myself and sometimes aloud more times than I'd like to admit, "Why Ethan? Why anyone?". Months ago I remember writing about a phrase that Nancy Guthrie used in her book, "Holding on to Hope," - which basicially was "Stop asking why and start asking how will God be glorified." This week, I've had to think about that a lot.

On Wednesday night after church Ethan's great grandpa, a retired pastor who loves the Lord with all of his heart, mentioned to me the following passage in Exodus that is often so hard for us as humans to understand:

18 Then Moses said, “Now show me your glory.”
19 And the LORD said, “I will cause all my goodness to pass in front of you, and I will proclaim my name, the LORD, in your presence. I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion. 20 But,” he said, “you cannot see my face, for no one may see me and live.”
- Exodus 33:18-20

As you probably guessed, it is v. 19 that is the tough one.... "I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion." This verse doesn't seem to give most of us a very good answer or at least not the answer we want, to the "why" questions that we so often ask.

I wish I could say that I will never think or ask why, but that would be a lie. But what I do know is that the while I may not be able to find all the answers that I think I want, that I can find comfort in God's Word.

Psalm 139:13-14
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

*Ethan is fearfully and wonderfully made! Jesus created Ethan and knit him togegher in my womb. He created Ethan and has a purpose for his life.

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.

*When God created Ethan, He knew that Ethan's peroxisome's wouldn't work the way they typically should. But I know and try to remind myself each time I look at my little boy that that doesn't mean that Ethan isn't perfect. Ethan is perfect because he is who God created him to be. My son has purpose, and Jeff and I have purpose.  (I searched for the word "purpose" on Bible Gateway. Check out what I found out, here.) So, what is that purpose? What is the Lord's will for our lives?

John 6:40
For my Father’s will is that everyone who looks to the Son and believes in him shall have eternal life, and I will raise them up at the last day.”

1 Thessalonians 5:16-18
16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus

*I believe that part of the Lord's will/purpose for Ethan and us is to point others to Jesus! Those who know me know that I could not do this journey alone. Without the hope that Jeff and I have in Jesus Christ..... I don't want to think what we would do.... (Check out this website for more verses on God's will.)

Philippians 4:5-7
5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

*Okay, so not being anxious, has always been hard for me. Since Ethan's PBD diagnosis, even more so, but I know, I have peace because of Jesus. I know that whatever happens, we'll be okay. That if Ethan leaves Earth before I am ready that he will be in the presence of the Lord and that I will see him again someday.

Romans 8:26
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.

*I am so thankful that the Lord is helping us through this "weakness." I will admit that I pray for a miracle, I pray for a cure, I pray for healing and wholeness for Ethan. But I know that even when the times come that I don't know what to or how I should pray that the Lord knows my heart and that the Holy Spirit intercedes for me. I know that Jesus is the Great Physician and while Ethan's body may never be "healed" on Earth, and that while Ethan may be called to heaven before I am ready, that I can trust that when that day comes that Ethan will be healed forever by the Lord.

Why Ethan? Why anyone? --- Sorry that I couldn't give you much of an answer, but I do know that I am very thankful that in eight days we will be celebrating my little man's first birthday!

So, after I think/ask "why" I will try to remind myself to instead ask "How will HE be glorified?" And because I know that Jesus loves Ethan even more than I do and that 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." and that is the kind of love that Jesus has for Ethan; I can have hope and a reason to remember to rejoice, pray and give thanks.

Thank you, Jesus for our son, Ethan! We love him so much! Thank you for loving him even more than we do!

July 9, 2011

"Picture" Week

Somehow it seems like it has been a long week, although I'm not sure why since Monday was a holiday. Maybe it is because in addition to the tons of pictures I take here at home of Ethan, we had professional pictures taken not once but twice this week!

Jeff was off today. He returned from his trip to his cousin's wedding in Georgia late on Sunday. We had a nice lunch out and then spent the evening with some friends. I was a bit nervous about Ethan and the fireworks. I made sure that I took out his hearing aids so that they wouldn't scare him too much. I was hoping that he might react to them visually, but in the end it didn't matter - he slept through them! Maybe next year! :)

Today we went to our playgroup at Baby Talk. It is so hard to believe that Ethan is now one of the older kids! I enjoy this time each week. I enjoy being with other moms and doing something that doesn't involve therapists or doctors. Yet at the same time it is getting harder and harder each week as the other kids Ethan's age are all crawling and/or walking - leaving Ethan behind in the dust. It is also hard to see all of the new little babies that I know will also soon be "doing more" than my precious little man. But we have much to be thankful for - we are so proud that Ethan sits independently (he can't get into the position by himself) and while we always keep pillows behind him in case he tumbles, he seems to really enjoy playing with toys while sitting.

I am very excited that Baby Talk is allowing us to use their playroom for the new Central Illinois Parents of Children with Special Needs group. We will have our first meeting/playgroup next Wednesday morning!

This morning Ethan had physical therapy. He wasn't in the working hard mood! He did not want to do any weight bearing - which is what we are really trying to get him to do. He tolerated being on his hands and knees a bit but didn't want anything to do with supported standing.

In the afternoon we had Ethan's 11 month pictures and he actually smiled! I was very pleased with how they turned out! We get to pick them up next Friday.

This morning Ethan had occupational therapy. He worked a little bit harder today than he did yesterday, but his OT didn't even try to get him to stand. We are working a lot on upper body strength and skills in OT, such as placing balls in a container and putting weight on his arms to help him transition out of sitting and someday into crawling.

Ethan and I stayed home in the air conditioning all day and then after Jeff got home we all got ready for our pictures for the church directory. Those of you who know me well know how much I dislike pictures, but I guess we did end up with a decent one. I'm sure Ethan was wondering why he was getting professional pictures done for the second time in a week. :)

Afterwards we went over to Jeff's parent's house and fed Ethan and visited for a while before returning home. Ethan did not want to go to sleep last night. I took a nap from 10:30 to 11:30pm while Jeff watched him and then we were both up with him until nearly 12:30am. He was one very unhappy little man.

Prayer Requests
  • Pray that all families impacted by PBDs would feel the love and strength of Jesus. Pray that those who do not personally know the hope that comes with knowing Jesus as their personal Lord and Savior will put their faith in Him.
  • Pray for healing. Pray that there would not be suffering or pain. Pray that the doctors will discover new ways to treat and someday even cure children of these dreaded disorders.
  • Pray for wisdom, guidance, patience and strength for parents and caregivers who love these children so much. Pray that they will be able to make the best decisions possible when it comes to their precious little ones health and well being.
  • Pray for the first annual Global Foundation for Peroxisomal Disorders conference that will take place in Omaha, NE in less than three weeks. Pray for safety as families and specialists travel from around the country and world to attend. Pray that amazing things will happen during and because of the conference.
  • Pray for the new support group that I am starting up here in Central Illinois. Pray that it will minister to the needs of parents that have children with special needs.

July 4, 2011

Ethan's first 4th of July!

My 4th of July outfit!

I'm not sure about this hat, Mom.

In my second outfit of the day - ready to go see the fireworks!

At the Warrensburg fireworks!