January 3, 2011
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.
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).