The Journey We Are On.....

We've made it home! Ethan recieved two breathing treatments through the night and by the morning he sounded much better - no weezing. The attempted to take more blood early this morning, but weren't successful. This afternoon I told them that had 1 more attempt, and that was it. Luckily there were able to get enough blood for all of the labs. We were cleared before we heard anything about them, so hopefully everything was stable. The nurses at St. Mary's are great, but we were glad to say goodbye. Hopefully it will be much longer than six months before we see them again. Thank you for your continued prayers. We are home, but not neccessarily in the clear. I am afraid that Ethan will re-catch this from me, as I am now sick. So, tonight will be a night of cleaning and disinfecting the whole house. It is so hard to not give my little guy tons of kisses - but I'm trying. We are so thankful to be home. When we got home I put him on the floor and he just started playing...

Greetings again from St. Mary's hospital. We are spending another night here, hopefully the last one for a while. Ethan had seemed to be doing better throughout the day and we were able to get him to drink more - half way through the day we switched from formula to pedilyte, and he seemed to take a bit more of that. We've since went back to formula, and he hasn't eaten much this evening. He had his first breathing treatment just before 8pm tonight. Prior to this the doctors and nurses thought that he didn't sound bad enough, but he started weezing, so it was finally time to start the treatments (Jeff and I thought they should have started yesterday...). He will get them every four hours. Hopefully we will all be asleep for the next one. :) I wanted to thank everyone who has been praying for our little guy and an special thank you to my fellow PBD moms who have been keeping in touch and have helping us advocate for Ethan. Thank you so much, Melissa, Shannon & ...

Last night was a rough one. Ethan went to sleep around 11pm, and was up and midnight, 2am, 3am, and 5:30am. He has just now went down for a nap. Dr. Dan came by this morning and if all goes well we may get to go home this afternoon - they just want to make sure that Ethan doesn't take a turn for the worst. Being at the hospital this time sure is different than when we were trying to figure out what was going on with our little man after birth. Being here still isn't any fun, but I am a lot calmer about it. Unfortunately, I know the reality that being at the hospital may become second nature to us as we battle Ethan's diagnosis - but let's pray that isn't so. So, the doctor and nurses think that Ethan is making it over the hump of the RSV, and guess what, I'm sick. I feel horrible! No fun! We are going to call today and reschedule our trip to Iowa to see Dr. Stone and Dr. Wilkinson - we don't think Ethan (and now me) will be up to the long trip. Hopef...

I'm typing this from the "family room" at St. Mary's hospital. Ethan was diagnosed with RSV on Monday when we visited the doctor. Doctor Dan is great and when Ethan wasn't feeling much better on Tuesday we returned to his office. At that time he though that the virus was progressing as usual and that we could go home and call back if needed. Yesterday Ethan didn't seem to get any better or any worse until the evening when the coughing, runny nose, and watery eyes were making him VERY miserable. So, this morning I called the doctor and we went back in. Dr. Dan was concerned enough about Ethan that he decided that he should be admitted to the hospital. So, I called Jeff and he met me at home, we had some lunch, backed our bags and headed to St. Mary's with Ethan. Ethan has had a chest x-ray and blood drawn, although we haven't heard anything about either of those. They have also been "sucking" out his nose to help him breath - although he h...

  Went back to see Dr. Dan this afternoon. Ethan is still feeling pretty lousy and hasn't been eating well, but his oxygen levels were great (99%) and Dr. Dan said he sounded good. So, luckily, we got to come home and not head to the hospital. We are to check back with the them in the morning (and call earlier if needed). Thank you for all the continued prayers as we try to fight this virus.

Ethan got fitted for his helmet yesterday - traumatic event for all involved. Then I took him to the doctor, who said he tested positive for RSV. (Respiratory syncytial virus.) So, Ethan and I are quarantining ourselves here at home for the rest of the week - I'm calling today to cancel all of this weeks appointments. Please pray that Ethan will be able to kick this virus!

Hello everyone. You might have noticed that I changed the background - this is in anticipation of the spring. We've had a small taste of it this past week and Ethan and I have been able to get outside the last two days. It's been wonderful. We are ready for spring! On Monday, Ethan decided to play tug of war with his hearing aids. Ethan won! He pulled the tube completely out of the ear mold and it would no longer stay in. So, Tuesday morning Ethan and I traveled to Springfield to the walk-in hearing aid clinic at the audiologists office to get it fixed (so we didn't get to go to Baby Talk). When we got there we found out that his new ear molds were in, so he got to get those, in addition to getting the old one fixed (for a backup), which was a huge blessing. Ethan has been growing so much - he's had his hearing aids almost three months and is already on his third set of ear molds! Tuesday afternoon Ethan had his six month check and shots at Dr. Smith's office. D...

A huge prayer request was answered today! Illinois' Deptartment of Specialized Care for Children (DSCC) is going to cover the cost of Ethan's helmet! We've been working on getting Ethan a helmet to help shape his head since before Thanksgiving. With the help of Shannon Butalla, the president of The Global Foundation for Peroxisomal Disorders, we were able to get the ball rolling again. THANK YOU SHANNON! We have an appointment on Monday for Ethan to be casted and then in a few weeks Ethan should have his helmet! Thank you for praying with us for this need!

Happy Valentine's Day. This year I am blessed with two valentine's - my wonderful hubby and my precious little boy. This past week was a busy one - but I guess most of our weeks are. Monday 2/7 -Ethan had a visit from an Early Intervention developmental therapist. Ethan doesn't see a DT regularly, but she was here to do his six month assessment. Tuesday 2/8 -Ethan had his monthly visit from his dietitian, Jen. Ethan weighed in at 17 lbs. 9 oz. and is 27 1/2 inches long. Jen had us introduce a sippy cup - Ethan was not impressed. She has encouraged us to attempt baby food twice a day and to introduce the sippy cup each time we feed him in the high chair. -Ethan "likes" bananas, peaches, pears, apples and sweet potatoes. He "tolerates" carrots, and HATES peas! -The sippy cup isn't going to well, but we'll keep trying. Wednesday 2/9 -We had a visit from our Department of Specialized Care for Children (DSCC) case worker. The DSCC paid fo...

The focus of the last week or so has been stay warm! It's been very cold and we've had TONS of snow. It is snowing outside as I type. Monday 1/31 - A Busy Morning! -Ethan had his visit with his hearing specialist, Julie. It was a good visit, Ethan likes playing with her. She mentioned that she wishes that he was making more sounds, so did the speech language pathologist when she visited, but we're working on it. Ethan wears his hearing aids usually 8 to 12 hours a day which is helping him hear all the sounds around him, we read to him, and we talk to him all the time. -Ethan also had his visit visit from his new vision specialist, Joni. Luckily Julie was able to stick around for part of the meeting which was very helpful. Joni was very excited about how much Ethan is using his vision (she often sees children who are completely blind). When we come back from seeing the eye specialists in Iowa next month, she'll be able to better specialize a plan for Ethan. I'm e...