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Showing posts from June, 2011

The end of June already?

Wow, I just can't believe that it is almost the end of June. It has been two weeks since my last update, and while it seems like we have stayed busy, there actually haven't been too many appointments.

Ethan had occupational therapy (OT) on Thursday, July 16th. The OT is working to help Ethan improve his fine motor skills. We have noticed that his reach is much more accurate when he wears his glasses, but he just doesn't like them. He loves to rip them off of his face, taking his hearing aids with them. So, we try everyday but we haven't had a lot of success when it comes to keeping them on.

Last week was Vacation Bible School (VBS) at our church. We only made it to VBS on Monday. Ethan and I went to the opening worship rally and I think he liked the music :) and then we hung out in the nursery. Tuesday, we went to our playgroup at Baby TALK. Wednesday, Ethan had physical therapy (PT). The PT is working with Ethan to improve and advance his gross motor skills - particul…

Central Illinois Parents of Children with Special Needs

My newest endeavor is starting a local network of parents who have children, particularly those under the age of 5, with special needs.

We have a website and will be holding our first meeting/playgroup next month. Baby TALK is allowing us to use their building and we are going to start meeting once a month.

I am so excited to meet other moms in my area that have extra special little ones!

11 months old!

Ethan is 11 months old today! Here are just a few of the pictures I took today.

God is good, all the the time. All the time, God is good!

"God is good, all the time. All the time, God is good." I know this in the depths of my heart, but sometimes it is good to say it aloud anyway. Especially when things aren't going the way that we'd like them to go or it seems like there is more bad than good occurring in the world around us. I try to always remember that God is good, all the time and all the time, God is good!

With that being said I will admit that in many ways the last week has been an easier week to believe that. Things are almost "normal" around here. I don't like the word "normal" anymore, since everywhere I go and everything in our lives reminds me that Ethan isn't "normal," but the word works well to describe the last week or so.

Last week we had our usual Wednesday, Physical Therapy, on Thursday, Ethan met with the Dietitian in the morning and his DT-Hearing in the afternoon, and on Friday, I took Ethan to JCPenney's to get his 10 month pictures taken…

Our BIG boy...

I am so proud of my "little" man. He is just about 10 and a half months old and today when the dietitian visited our house she weighed him in at 20 pounds and 9 ounces! He is also 29 and a half inches long! We are so very proud of him!

Prayers for the Frisch Family

Please pray for strength, comfort and peace for the Frisch family of New York. Their precious little boy left their arms here on earth for the arms of Jesus yesterday. Nickolaus is now healed forever of PBD and in heaven with the Lord. Nickolaus would have turned four next month. He has the same disorder as Ethan.

Ethan - June 3rd

More pictures of the little man.... I just can't help it, he is so darn cute!

I can't believe it is June and other things I am having difficulty comprehending...

I can't believe that it is June! It seems like we didn't have a spring. The weather went from cold to hot and now it is HOT! Also, Ethan turned 10 months old back on May 23rd! It is so hard for me to believe that we found out about this nasty disorder Ethan has more than 9 months ago and I have just begun planning the first birthday party that 9 months ago I was sure I'd never get to plan. As I look back at the day that Dr. Schneider told us the news, at times it seems like yesterday and at other times it seems like a lifetime has passed since we first learned the term "peroxisome."

I am planning two birthday celebrations for our little man. Having a little one turn one year old is very special for any family, but it is particularly significant for us and Ethan. According to the medical literature about PBDs, "children who survive the first year and who have a non-progressive course have a 77% probability of reaching school age (Gene Reviews)." So, thi…

Ethan - June 2nd

Results from last week's blood draws

I know that this won't mean a lot to many of you, but for my fellow PBD parents out there, I thought I'd share Ethan's results from last week's blood draw. The doctor said that overall the tests were good. Ethan's adrenal function was normal and his liver function seems to have improved some since the last time it was checked in December. Yea!

TestEthan's resultNormal
Glucose               72                     60-100BUN                    10                     4-19Creat                    0.2                    0.5 - 1.3Na                        141                   133-145K                          4.9                    4.1 - 5.3Cl                         108                   96-108CO2                      21                     22-29Calcium               10.2                 9.0-11.0Albumin              4.9                   3.8-5.4Alk Phos              433                   117-390GPT                     40                     10-40GOT                   …