January 27, 2011

Thursday 1/27/2011

 It feels like today was a day of accomplishments!

1) Ethan can now roll from belly to back as well as back to belly! He has done this several times today and both Jeff and I got to witness it! YEAH!

2) Scheduled his evaluation with the developmental vision therapist.

3) Scheduled his evaluation with the occupational therapist.

4) Scheduled appointments with eye specialists at the University of Iowa.

And most importantly.....

5) Ethan finally pooped! It had been since Sunday morning. I called the doctor's office around 2pm and before they called back, he finally went... of course, he must have known that I had called. I'm not sure why, but it seems like several of the other kids with Ethan's diagnosis also have digestive system issues.... For now, our doctor has suggested daily prune or pear juice. Hopefully, this will help him become more regular.

Prayer Requests
-Please pray for all the children and families impacted by PBDs.
-Please pray for the success of our new non-profit organization, The Global Foundation for Peroxisomal Disorders.
-Please pray for baby Ellie in England and her parent's fundraising efforts to help future families who will utilize the hospital in which she is receiving care.

P.S.
Yesterday I was extremely blessed. A teacher friend that I worked with presented me with a belated Christmas present from many of the members of the EHS staff. It was a very generous gift, thank you so much! I am overwhelmed by the generosity. I miss my friends at school, but I know that I am where I am supposed to be. If you were a part of this, THANK YOU!

January 24, 2011

Monday 1/24/2011

Ethan's been on antibiotics since Thursday, and he seems to be feeling a tad bit better. He's still really congested and has tons of snot, but he has had a better appetite today, so that is really good.

We had our monthly visit with Ethan's speech language pathologist, Betsy, today. She was excited about Ethan's ability to make and maintain eye contact. She was hoping to hear more constant sounds (right now all he has is the "m") but she was thrilled to see him rolling and trying to sit.

The big news of course is that yesterday Ethan was 6 months old. With his disorder that is a big date to get too, and 1 year will be even bigger. I've already told my father-in-law that we'll be having a huge first birthday at the church for this little dude!

I continue to pray for a miracle each day, and recognize that God's already been answering our prayers - overall, Ethan is doing so well. My grandma reminded me of something that is important to remember - prayers are always answered, the answer may be, yes, no, or not now/not the way you think. I know and have faith that if Ethan is not healed here on earth that he will be healed forever in heaven at the throne of Jesus.


Prayer Requests
-Pray for a family in MO whose baby went to be with Jesus last week.
-Pray for baby Ellie in England.
-Pray for all of the kids and families impacted by PBDs - please pray that our kids will be able to stay healthy throughout the winter, and if they do get sick that they will be able to bounce back easily.
-Pray for wisdom as Jeff and I decide about a new eye doctor for Ethan - we may go to Children's Hospital at St. Louis or the University of Iowa (Iowa City) to see specialists.
-Pray for the families who have recently lost their little ones.

January 21, 2011

Friday 1/21/2011

Ethan isn't feeling so good. He started to seem like he was getting a cold on Wednesday morning and got worse throughout the day and evening. Yesterday morning we headed out in the cold snowy conditions to the doctor's office. He's now on antibiotics, which should hopefully get him feeling better soon. He seemed to sleep much better last night.

Prayer Requests
-Pray that Ethan's cold will not progress into anything more serious.
-Pray for the other PBD kids who are battling illness - it's so tough on our kids.

January 18, 2011

Tuesday 1/18/2011

Last week's visit with our PT went really well. Ethan even showed off for her and rolled from back to stomach several times! :) Overall, she said Ethan is doing really well and we will just keep working with him. We are now working on tripod sitting (the picture is of my dad helping Ethan practice sitting when he came to visit on Sunday). He can sometimes hold himself steady for a few seconds, but he gets tired easily.

Jeff had Monday off and was able to be home for our visit with our hearing specialist. It was great to have Jeff at the visit so he could meet Julie and see what we do at these visits. We currently meet with her twice a month, but that may be increasing to every week after Ethan's six month review. We also spoke about having Ethan evaluated by an OT and a vision specialist.

Prayer Requests
-Please continue to pray for baby Ellie and her family in England.
-Please pray for all of the children and families impacted by PBDs.

January 11, 2011

Tuesday 1/11/2011

Last week was a pretty quiet week, but we have big news - Ethan reached a major milestone this past week - rolling from back to stomach.

He started doing this last Monday, and by Tuesday nothing could stop him! We had Grandma and Grandpa Marshall over to see Ethan's "new trick" on Tuesday evening and then Wednesday when Grammy Chambliss came to visit (and go with us to the ENT) she got to see him roll as well!

I must admit, he is still working at getting both arms free after rolling, one is usually stuck underneath him which frustrates him, but he's turned into a little rolling machine. We are so excited!

On Wednesday we went over to Springfield to see Ethan's ENT. Dr. Bauer is great and was very encouraged by how great Ethan looks. She told us to come back in six months for another checkup, but otherwise she didn't have any concerns at this time. Dr. Bauer and our audiologist are very proactive with Ethan and know that if his hearing loss progresses to a level in which hearing aids are no longer helpful that we will seek implants. I asked Dr. Bauer about this and she's successfully implanted kids as young as one year old.

Saturday we attended Ethan's cousin Anna's first birthday party. She had a princess party - she is so cute! We had a baby boom on my husband's side of the family in the past year. There were four cousins born from December 2009 to July 2010 - so, they will all be in the same grade! Talk about four crazy moms when its time for Kindergarten! :)

Today Ethan had his visit from his dietitian, Jen. He weighed in at an amazing 16 lbs. and 10 oz.! He is 27 inches long. His weight is now at the 50th percentile and his height is just above the 75th percentile. I think that Jen was almost as ecstatic as I was! Tomorrow, Ethan has physical therapy, so we’ll have to wait and see what she says.

Prayer Requests
-Pray for a PBD family whose second child left this earth to be with Jesus in heaven recently.
-Pray for all families impacted by PBDs.

January 3, 2011

"Miracle in Progress" by Kristin M. Marshall (2010)

My sister-in-law, a senior in high school, wrote this poem and presented it to Jeff and I for Christmas. I thought that I'd share it with everyone.


Miracle in Progress by Kristin M. Marshall (2010)


My eyes light up when I see a baby's face.
Cute little fingers, and eyes so bright.
I was excited when Ethan was born.
His parents were filled with delight.

We soon discovered that he wasn't quite normal;
All children are special in a way.
But young Ethan may lose his hearing or sight,
And the only thing to do is pray.

My insides twist around in a knot
When I see my mother's silent tears ---
We know he will be made fun of,
Laughed at in high school we fear.

I hate the thought of sweet Ethan
Living with hardships in life.
Even his kind, loving parents
Will deal with struggles and strife.

Though through it all we'll remember,
God has a plan for him too.
But for now we will call him "my pumpkin,"
And keep whispering, "I love you."

Monday 1/3/2011

I love to laugh!
As we begin this new year, can I just say that 2010 didn’t turn out exactly like I would have expected. However, I know that I still have so much to be thankful for, and my prayer for the new year is that we will continue to always seek God’s guidance, direction, and blessing as we live each day, and cherish each one that He will allow us to share with Ethan.
As we celebrated Christmas with family and friends this year I couldn’t help but think about how much has changed since this time last year. It was at Christmas last year that we excitedly shared with our family and friends that we were pregnant. A little over five months ago, I was so ready for the world to meet little Ethan, and just two days after his due date he arrived. A little over four months ago we had our world shattered when Ethan was diagnosed with a Peroxisomal Biogenesis Disorder (PBD) also known as the Zellweger's Spectrum of Disorders. Things sure have changed since then. We now have a team of doctors and therapists who are helping us help Ethan and people all over the U.S. (and some in other countries) praying for Ethan, us, and all children and families impacted by PBDs. I’ve also made some new friends that I would have never met otherwise – thank you to all the brave parents who have shared/are sharing with us their PBD journey and especially to my new friends Melissa and Vicky who are sharing this “trip to Holland,” with me.
Ethan has had a break from doctors and therapists over the Christmas and New Year’s holidays, but that won’t last for long. On Wednesday we are headed back to Springfield to see Ethan’s ENT – this will be the first time Dr. Bauer has seen Ethan since he got his hearing aids. Next week we’ll start back with all of his Early Intervention therapies.
Prayer Requests
Pray that God will be glorified through Ethan and us. We pray that many lives will be touched and that people will come to know Jesus because of this journey God has us on.
Pray that we will have the strength and courage needed to be the very special parents that we need to be for our very special little boy.
Pray for miraculous healing for Ethan and all children affected with PBDs. We have not given up on praying for a miracle. We know that we serve the Great Physician, whose healing powers are greater than any doctor. (Although we pray for this daily, we know that a miraculous healing may not be the Lord’s will for Ethan, but we will choose – no matter what, to give Him the honor and glory and praise, even when we don’t understand.)
So many people are following Ethan, and since I didn’t have much to share about the last two weeks, I thought I’d take the time to fill everyone some of his development.
According to the book “What to Expect the First Year,”
By five months, your baby should be able to:
· Hold head steady when upright (YES)
· On stomach, raise chest, supported by arms (YES, but tires easily)
· Pay attention to an object as small as a raisin (NO, but he can track larger objects, when he wants too.)
· Squeal in delight (YES, especially when mommy or daddy do something silly)
· Reach for an object (YES, he loves to bat at toys and will reach for some of his favorite)
· Smile spontaneously (YES)
· Smile back when you smile (YES, when he wants too)
· Grasp a rattle held to backs or tips of fingers (YES, he can even make a little music with one of his rattles)
· Keep head level with body when pulled to sitting (NO, we are still working on this one, but he is getting stronger.)
By five months, your baby will probably be able to:
· Roll over (one way) (YES! Today Ethan rolled from his back to his stomach 7 times!!!)
· Bear some weight on legs (YES and NO – when “standing” on my lap with support he does a little of this, but not much.)
· Say “ah-goo” or similar vowel-consonant combinations (NO, but he can be VERY vocal, when he wants too.)
· Make a wet razzing sound (YES)
· Turn in the direction of a voice (YES and NO – usually just mine, and only if I talk very loudly, and not all the time. This most likely has more to do with his hearing loss than anything else.)
By five months, your baby may possibly be able to:
· Sit without support (NO – we are working on sitting with support)
By five months, your baby may even be able to:
· Pull up to standing position from sitting (NO)
· Stand holding on to someone or something (NO)
· Object if you try to take a toy away (NO, unless an ugly look counts)
· Work to get to a toy out of reach (NO)
· Pass a cube or other object from one hand to the other (NO)
· Look for dropped object (NO)
· Rake with fingers a tiny object and pick in up in fist (NO)
· Babble, combining vowels and consonants such as ga-ga-ga, ba-ba-ba, ma-ma-ma, da-da-da (NO, not really although I’m convinced as is Jeff, that Ethan can say mamma).