Skip to main content

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).

Comments

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD. 

Here we go again!

Yesterday, our family got to take another trip to the ER. Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER. By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist...