February 26, 2011

Saturday 2/26/2011

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 and rolling over! I think he was more excited than Mommy and Daddy to be home.

February 25, 2011

Friday 2/25/2011

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 & Vicky! I feel very blessed to call you my friends.

We are praying that we'll be out of here sometime tomorrow. Please pray that Ethan will continue to fight this virus and that we've seen the worst of it.

Friday 2/25/2011

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. Hopefully we'll be able to get something scheduled for later in March or early April.

Hopefully we'll be home tonight! I'll keep everyone posted. Thank you for your continued prayers!

February 24, 2011

Thursday 2/24/2011

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 hates when the nurses do this, you can tell he feels so much better afterwards. He has not yet recieved any breathing treatments - which was part of the reason I though we were being admitted, but the doctors and nurses have all said his lungs sound great. If this starts to worsen they may start the breathing treatments.

Ethan has sleeping a lot today, which is a sign of how lousy he must be feeling since he isn't usually a napper. While I wish we were home, a part of me is glad that Dr. Dan is being proactive and we know that he really cares about Ethan and our family and only wants what is best for him.

In other news - I received a package from the Royal Mail Service today, and sadly it was not an invitation to the wedding, but it was my purple heart necklace all the way from England. Ethan and I have friends who live in England (Laura is the mom, and Ellie is the little girl) who are impacted by the same nasty PBD disorder. Ellie is just about six weeks younger than Ethan and hasn't been able to leave the hospital in a very long time. Ellie is helping raise money for the hospital ward where she is staying and proceeds from the purple heart necklaces go to help her cause. I decided to wear mine to the hospital today and have been able to tell several people about PBDs, Ethan and little Ellie.

Prayer Requests
-Please pray that Ethan will be able to kick this RSV and get better very soon.
-Please pray that Ethan will be well enough that we will be able to travel to see the eye specialists in Iowa (we are supposed to leave on Monday for his appointment on Tuesday).
-Please pray that this illness will not worsen the impact of his PBD.
-Please pray for all families and children impacted by PBDs.

February 22, 2011

Tuesday 2/22/2011

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.

Tuesday 2/22/2011

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!

February 18, 2011

Friday 2/18/2011

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. Dr. Smith is so pleased with how well Ethan is doing. Our "little" man weighed in at 18 pounds and 2 ounces and measured 27 1/2 inches long! We talked about Ethan's pooping problems and Dr. Smith told us to increase the lactolose in hopes that it will help him become more regular. After the doctor visit we got to take Ethan to visit with Jeff's grandparents and parents, which was fun.

After a long day we retuned home and the rest of the evening and night was pretty hard on Ethan - I think his legs were hurting from the shots, but he was a real trooper.

Wednesday morning Ethan had his monthly physical therapy (PT) appointment. We really like his PT and she was thrilled with how well he is doing. Ethan even showed off for her - tripod sitting for over 10 seconds for her! Our main focus for now is going to continue working on sitting independently. She has suggested that we begin weekly PT next month - Ethan has his six month review of Early Intervention (EI) services March 7th - which I think will be great. Now that he is bigger and we are working on sitting and soon crawling, I believe it will be very beneficial to have PT weekly.

Wednesday afternoon Ethan had his Occupational Therapy (OT) evaluation. We will be adding OT to his EI services in March. The OT will focus on fine motor skills while PT focuses on gross motor skills. The OT is going to finish her report and we will see her either twice a month or weekly. We'll know more on March 7th.

Thursday morning we went for a walk OUTSIDE! The weather was great and we meet friends at the park - it was wonderful. My friend's son is just four weeks younger than Ethan so we pushed the boys in their strollers and chatted while we worked up a sweat.

We also found out that the Department of Specialized Care for Children (DSCC) is going to pay for Ethan's helmet! This is a huge answer to prayer! Thank you for praying with us for this need.

Today we went for another walk OUTSIDE! It was another great day and we meet another friend and her son at a different park to walk, talk and play. Her son is 4 years old so he enjoyed seeing all the squirrels and geese that were out enjoying the warm weather.

Next week is going to be a busy one!
-Monday morning Ethan has his appointment with his Hearing Specialist, and in the afternoon we will get him casted for his helmet.
-Tuesday we'll try to go to Baby Talk. Maybe we'll make it this week. :)
-Wednesday morning Ethan has his appointment with his Vision Therapist.
-Thursday monring Ethan has his appointment with his Speech Language Pathologist and in the afternoon we go to the audiologist to finish up his ABR.

Prayer Requests
-Pray for all children and families impacted by PBDs.
-Pray that Ethan will have more regular bowel movements (this week he had one on Monday and not another one until today - Friday). I know it sounds weird to ask you to pray for poop - but when Ethan isn't regular it makes his tummy hurt, he gets cranky, and won't eat very well.
-Pray for the Global Foundation for Peroxisomal Disorders (www.thegfpd.org) board of directors as they finalize details for the first annual GFPD conference.
-Pray for Ethan to continue to make progress developmentally and physically. Pray that he will remain healthy and happy and that we will know how to help Ethan reach his fullest potential.
-Pray for Jeff's success at work as he continues to work hard to provide for us and allow me to stay home with our little man.
-Pray that we will continue to seek the Lord's will and look for ways to give honor and glory to God as he works through Ethan. We believe that Ethan is a very special little boy with a very special purpose from the Lord (we may not understand the Lord's plan, but we know and trust that He has one).

February 17, 2011

Thursday 2/17/2011

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!

February 14, 2011

Monday 2/14/2011

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 for Ethan's hearing aids and is a state organization whose entire focus is on special needs kids. Ethan will be able to be involved with the DSCC until he is 21.
-We had hoped that they would be able to help with the helmet we've been trying to get for Ethan (to help reshape his head) since before Thanksgiving, but they aren't going to be able to. Our case worker spoke with our Early Intervention care coordinator and EI is going to try to help. Our insurance denied the helmet because they consider it cosmetic - yeah, right!

We didn't have any appointments Thursday or Friday. On Saturday night Jeff and I took Ethan with us to our church's Valentine's Day dinner - overall he did really good. :)

Sunday was great. Ethan and I were able to hear the whole sermon (we sit out in the foyer, and there are speakers so we can listen) which was a great sermon on the Sanctity of Human Life. Pastor Tracy shared scriptures that helped me remember that God knew Ethan even before he was concieved and that He has a very special purpose for my little man. Psalm 139:13 says "For you created my inmost being; you knit me together in my mother's womb." It was a wonderful sermon reminding us of how precious life is. Afterwards we had a fellowship meal and then had our second winter Bible study session. Pastor Tracy is leading us through the book of Galatians. I am really enjoying this study. Yesterday's focus was on GRACE, and that it is only God's Grace through His son, Jesus Christ, that we are saved! We also talked about how Paul's life is a testimony to God's grace and how Christ's love is transforming - you just have to believe. John 3:16 says "For God so loved the world that He gave his one and only Son, that whoever believes in Him shall not perish but have everlasting life."

I'm looking forward to this week - it's supposed to be so much warmer! High 40s to low 60s by the end of the week! I'm so excited - I may bundle Ethan up and go for a walk outside. :)

On Tuesday we are going to go to our Baby Talk playgroup - we've missed it, 2 weeks ago it was cancelled due to the snow and last week we didn't go because it was so cold! In the afternoon Ethan has his six month visit with Dr. Smith and of course those wonderful six month shots!

Wednesday Ethan has Physical Therapy in the morning and his Occupational Therapy evaluation in the afternoon. I am hoping that we'll be able to add OT to his therapies. The OT will be able to help Ethan with fine motor skills and help him learn to use a cup, hold a spoon, etc.

On Friday we might try to go to the Pershing playgroup again. We haven't been there since before Christmas. We'll just have to see how the week turns out.

Prayer Requests
-Please continue to pray for all families impacted by PBDs.
-Please pray that Ethan will continue to eat more baby food and be successful as we begin transitioning him from the bottle to the sippy cup.
-Please pray that Ethan will continue to make developmental milestones. We are still working on sitting - he can know tripod sit for 10 to 20 seconds.
-Please pray that the financial cost of the helmet will be taken care and that EI will be able to cover this for us.
-Please pray that Ethan will remain healthy and happy.

February 5, 2011

Saturday 2/5/2011

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 excited about getting Joni on board with Ethan's therapies. Plus, Joni sees another little one who has the same disorder as Ethan - so between our two little ones she's going to become a PBD vision expert.

Tuesday 2/1 - The Snow Begins!!!
Everything in Central IL came to a halt! Jeff came home early on Tuesday, and didn't go in on Wednesday - we were snowed in!

Thursday 2/3 - To Springfield we go!
Today we visited Ethan's geneticist and audiologist. Dr. Schneider, the geneticist, had not seen Ethan since he was a month old - was he surprised at how big Ethan had gotten. At the audiologist they retested Ethan's left ear - seems stable at the moment, and made new earmolds. We'll be going back in a few weeks to retest Ethan's right ear and to pick up the new earmolds.

Friday 2/4
Today was Jeff and I's 5 year wedding anniversary so Ethan got to spend time with Grandma and Grandpa Marshall while we went out to dinner.

Next week will be busy...
We have visits from the developmental therapist, dietitian, and the dept. of specialized care for children (DSCC).

Prayer Requests
-Please pray that Ethan will continue to reach important developmental milestones (our PT believes he's on a similar gross motor development milestone time-line as kids with Down Syndrome - so we've got a book that has lots of activities we can do with Ethan to help encourage him to reach his milestones).

-Please pray that Jeff and I will continue to grow closer to God and one another as we ask not why but "How will God be glorified?" We have not stopped praying for a miraculous healing - we know that God is capable. We have talked a lot recently about the biblical story of Shadrach, Meshach and Abendego (see the Old Testament book of Daniel) and how they prayed for God to deliver them from the King and and knew that God could, but at the same time they knew that even if God didn't save them, that they would not turn away from their faith. We continue to pray for healing. 1 Thessalonians 5:17 says to, "pray without ceasing," and that is what we ask you to join us in doing. But we are determined to be faithful like Shadrach, Meshach and Abendego, no matter what the outcome because we know that if Ethan is not healed in this world he will be healed at the throne of God. We are holding on to the promise of Isaiah 53:5 "But He (Jesus) was pierced for our transgressions, He (Jesus) was crushed for our iniquities; the punishment that brought us peace was on Him (Jesus), and by His (Jesus') wounds we are healed."

-Please continue to pray for all families impacted by PBDs.

-Please continue to pray for baby Ellie in England and her family. In addition to caring for sweet Ellie they are working doing fund-raising for the hospital so that future families will benefit. You can follow Ellie at http://littlemissellieprince.blogspot.com

-Please pray for success of the new non-profit organization, The Global Foundation for Peroxisomal Disorders (www.thegfpd.org) and continued success of the Zellweger Baby Support Network (www.zbsn.org) as we fight to find treatments and support families impacted by this disorder.

-Please pray that more families will chose to donate their newborns umbilical cord blood - this can be used to help treat many diseases and used for ethical research. Our family is particularly proud of a family member choosing to have her son's umbilical cord blood donated for Zellweger research.
Find out more at: www.marrow.org