March 29, 2011

Tuesday 3/29/2011

I just want to say a big thank you to those of you who must have prayed for Ethan's eating! Tonight at dinner he at 2 or 3 oz. rice cereal, about a 1/2 oz. of green beans and 1 oz. of peaches. He was a hungry little hippo. :)

God is so good!

Tuesday 3/29/2011

I read some of the guest-book entries today and was brought to tears. Thank you so much for the prayers, thoughts and concern about our little man. We love him so much!

I feel like there isn't a lot to report on from last week. Right now we seem to just be in a holding pattern - we have a routine.
-Each Monday Ethan's developmental therapist - hearing (DTH) comes for her visit. Ethan's DTH, is great!
-Tuesdays we try to go to Baby Talk, today we didn't get to because the plumber was here (we are working on getting the bathroom in the basement finished).
-Wednesdays Ethan's PT comes. She is great too! Last week she had Ethan work on an exercises ball for part of the session. We are still working on supported sitting.
-Thursdays and Fridays are usually low key. Although last Thursday Ethan had his appointment with the vision therapist. He is doing so great though, that instead of twice a month she may only come once a month! We will wait until our visit with the eye specialists in Iowa to make this decision though.

This Thursday we will return to the Audiologist, I hope that Ethan will sleep for them so that they can finish the ABR. He is doesn't like to nap and when he does it usually isn't for very long, so I'm not sure how well this will work out.

On Friday we have our first MOPS playgroup at church. I'm excited about MOPS coming to our church, but I have to admit part of me is worried because Ethan isn't an "average" child and I am beginning to feel out of place with moms that don't have special needs children. Please pray for me about this. I want to be able to be happy and celebrate with other moms as their children reach milestones, but it is hard because Ethan is on a very different timetable than the "average" child.

A week from today we have our appointment with the eye specialists. I hope that they will be able to give us more insight about Ethan's vision and ideas of what we can do to help him fully utilize the vision he has. I must admit, although we know that there are some vision issues, he does use his sight rather well.

Next week Ethan will start twice a month OT. I'm excited about this so we can try to work to increase his fine motor skills as well as his gross motor skills (PT).

One of the things that has been occupying a lot of my time lately is helping with the Global Foundation for Peroxisomal Disorders family registry. The GFPDs website is now up and running, please visit it at Ethan's picture is even on it - it's an older picture so I challenge you to find it. :)

I've also been spending time getting to know other moms who have little ones affected by PBDs. I am so thankful for the support group and the power of Facebook!

Prayer Requests
-Healing for Ethan and that God will continue to touch him and work in him. That Ethan will continue to make progress (on his own timetable) toward major milestones.
-Healing for all children impacted by PBDs.
-God's peace and comfort for families who have lost little ones to this nasty disorder.
-Dedication and knowledge for the doctors, researchers, therapists, and teachers working to help children and families impacted by PDBs.
-Development of new treatments and a cure for PBDs!
-Ethan would continue to eat well (he's beginning to eat a little more baby food).
-Ethan will continue to tolerate his helmet. He is now up to wearing it the recommended 22 to 23 hours a day.
-Pray for the upcoming GFPD conference this summer.
-That Jeff, Ethan & I will cherish and seek to honor the Lord each day.

March 28, 2011

Monday 3/28/2011

Stayed up late last night reading "Heaven is for Real" by Todd Burpo, I just couldn't put it down! I have always believed heaven is real, but with Ethan's diagnosis, this book was a refreshing reminder of how great a God we serve and that truly "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." - John 3:16

March 25, 2011

Friday 3/25/2011

Just heard this song today - Mark Schultz "What It Means to Be Loved." You might want to have some tissue ready... but it just be our new theme song for our family. And although our story may not end up like the one in the song, my daily mission must be to alwasy so Ethan "what it means to be loved."

March 24, 2011

Thursday 3/24/2011

Another little one is now with Jesus. Yesterday, Joel Smith, left this world and was healed forever of PBD by the Great Physician. Joel's parents, Karen & Steve, are believers and know that their son is in heaven, but please keep them in your prayers.

When I talked with Karen yesterday she asked that we pray for a couple of things specifically:
-that her, Steve and brother Caeden would be able to get some rest
-that through Joel's life and death that others would come to know Christ personally.

I would ask that you would also pray that they would feel God's presence and comfort each day as they will miss little Joel so very much.

You can read about Joel's PBD journey on Karen's blog

March 20, 2011

Sunday 3/20/2011

This week has been a week of adjustment. As I wrote last week, Ethan finally got his helmet - a real answer to prayer since we started the process before Thanksgiving!

Monday afternoon after coming home from the doctor's office we had Ethan's weekly session with the Developmental Therapist - Hearing (DTH) Julie. We love Julie, she's great! Ethan was in a pretty good mood, everything considered. On Monday he wore the helmet for one hour, then got a one hour break, and then started the cycle over again. He did not have to sleep in the helmet Monday night.

Tuesday, Ethan wore the helmet for two hours then had an hour break, then repeat. This was tougher....

Wednesday, it was four hours on, one hour off. He also had PT on Wednesday. Ethan has had a slight setback in some of his gross motor skills due to the helmet - but our PT assured me that he'll make the adjustment in a matter of a few weeks, and he'll be fine. Ethan wasn't in a very good mood for therapy, but he did cooperate during the first half. In addition to sitting, we are working on having Ethan bear weight on this hands and knees (in preparation for learning to crawl). Ethan slept in the helmet for the first night.

Thursday, it was eight hours on, one hour off! What a tough day on the little man.... Second night sleeping in the helmet.

Friday, the helmet is now supposed to be worn 23 hours a day! We've cheated a little bit, giving him a few miny breaks because he'll get so upset there is no way to console him, but we are trying our best to keep in on 23 hours a day. The more compliant we are, the quicker the helmet should work.

Friday evening we drove to Mt. Vernon to my parents. First we stopped at the hospital in Centralia to visit my grandpa (my mom's dad) who was recovering from surgery. It was a nice visit with my grandparents and my parents at the hospital. Ethan even showed off for everyone, which was great. Ethan and his great-grandpa are buddies.

Saturday my mom watched Ethan while Jeff and I attended a conference for parents who have children with hearing loss. It was a really great conference and we learned about some different resources for families with children who have hearing loss. There were nearly a dozen other families there in addition to professionals. Everyone was really nice and it was nice to meet some other families that are dealing with at least one of the issues we are. We got so much information!

I have to admit though that it was hard for me to stop thinking.... but, hearing loss is the only challenge your children face.... I know that is awful, because this is still a HUGE challenge, but since Ethan's hearing loss is one of the few things about PBDs that we can actually treat (if his hearing progresses to a point that his hearing aids are no longer helpful we will implant) it was still hard to relate in some ways with the other parents.

With that said, I am still very glad that we attended the conference! There is another conference next month for parents with kids who are visually impaired. We've got to decide whether or not we are going since there are some scheduling issues, but if we don't this year, I sure want to next year.

This week will be a bit busier than last. Monday, Ethan has his weekly DTH visit, on Wednesday will be his weekly PT visit, and Thursday will be his bi-weekly DTV (Developmental Therapist - Vision) visit.

One very cute thing that Ethan has really been doing a lot of lately is "dancing." He is so cute as he wiggles his whole body, especially to music. Hopefully, I'll be able to catch it with the video camera soon. He is also getting better at making "raspberries," although this is still only when he decides he wants to "talk" to you.

We just love our little man so much. Thank you to everyone who continues to pray for and support us as we take the road less traveled as parents of a beautiful boy with a very rare diagnosis. It is hard to believe Ethan will be 8 months old on Wednesday and we've known about peroxisomal disorders for seven months. Sometimes it feels more like seven years!

I am so grateful and thankful to the other parents that I have met that are on their own unique PBD journey. Thank you for sharing yourself with us! We are looking forward to meeting other families that have been impacted by this disorder in person this summer at the first Global Foundation for Peroxisomal Disorders conference!

Prayer Request
Please pray that ...
-Ethan will continue to adjust to his helmet and that it would no slow his progress towards milestones.
-Ethan would be able to master prop sitting (using his hands for support) this month! We are working very hard at this - he can do it for several seconds and sometimes for a minute or two, but he isn't too steady yet.
-Ethan will continue to soak in all that he is hearing and seeing and that he will be able to learn to use his hearing and sight to their fullest potential.
-All families impacted by this disorder would find comfort and peace in Jesus Christ.
-The Lord would heal Ethan and all the children impacted by this disorder.
-The researchers, doctors, therapists, and specialists who work with our kids would be able to be given the strength, the knowledge, and the compassion to continue advocating for our kids.
-Treatments and eventually a cure for PBDs would be found. I am a firm believer that God has blessed us with modern medicine and often uses it to perform miracles for His glory.
-All the families that would like to attend the GFPD conference this summer would be able to. Attending the conference can be very costly, registration fees, lodging, and travel - the conferene is in Omaha, NE.
-Jeff and I will draw closer to God and one another as attempt to be the best parents that we can be for Ethan. Pray that we will find strength and refuge in the Lord daily. Pray that we will never forget that Jesus loves Ethan even more than we do.

March 14, 2011

Monday 3/14/2011

It seems like its been such a long time since I wrote. The passing of Ellie Prince hit me hard. Ellie was born just about six weeks after Ethan and soon after her diagnosis her mom and I "met" through the online parent group. I had hoped and prayed that Ellie and Ethan would be on this PBD journey together for a long time, but that wasn't in God's plan. Little Ellie is now healed of this disorder and in the presence of the ultimate physician - Jesus Christ. Please continue to pray for the Prince family. It is my prayer that they will find the love and comfort only the Lord can provide.

Last week was a busy, yet productive one, for us. On Monday, March 7th we had Ethan's six month review of his Early Intervention (EI) services. It is so hard to believe that he is nearly 8 months old and we've known about this horrible disorder for over six months. I am so thankful though that despite everything Ethan is doing well.

At the meeting a few changes were made.
-Ethan is going to begin seeing the PT week. This is great because we are still working on mastering sitting. He can tripod/prop sit for up to a minute but can't sit without the support of his arms yet. Plus, today we got his helmet, so now that his head is heavier, he may need some extra help as he adjusts to the helmet and doing everything with it. I am really hoping that by nine months Ethan will be sitting independently and that we'll begin to work on crawling.
-Ethan will see the Hearing Specialist each week. With his level of hearing loss this will be good because she will be able to help us continue to work with him on listening skills and with learning how to vocalize. In many ways she is doing similar activities with Ethan as the Speech Language Pathologist.
-Ethan will begin OT every other week beginning in April. The OT will help Ethan with fine motor skills. This is going to be very important especially as we start to look at helping him with feeding skills - holding his own bottle, using a sippy cup, feeding himself finger foods, etc. She will also address sensory issues - this may be particularly beneficial because it seems that most PBD kids have sensory issues.
-Ethan will see the Vision Specialist every other week. I am very excited about this. The vision specialist is going to work with us to help us learn how help Ethan utilize the vision he has plus there are actually some activities that we can do that may improve some of his vision! How awesome is that!
-Ethan will continue to see the Dietitian and Speech Language Pathologist once a month.

I feel so blessed because Ethan has a great EI team. Unfortunately, as I've talked with other mom's this isn't always the case. My heart breaks when these friends share with me the struggles they are having to just get the proper services for their kids. Two more of my PBD mommy friends has been have been having a very difficult time with their respective school districts. This just makes me so MAD!!! As a former teacher myself, I understand that the are so many factors that are involved in every situation, but these two situations are just ridiculous and in my opinion the schools are just in the wrong. Keep fighting my friends!

In addition to Ethan's EI six month review meeting last week he met with the Hearing Specialist, Dietitian, Vision Specialist and Speech Language Pathologist. It was a busy week. Our appointment with the Vision Specialist was a great one - she was thrilled to see how much functional vision Ethan has!

On Tuesday, Ethan and I got to go back to our Baby Talk group for the first time in ages. This is a great group and looked forward to returning. All the families there are really nice. It is great to have a "normal" activity to do each week together that doesn't involve doctors or therapists.

On Wednesday, Ethan and I had a meeting at our church about the new M.O.P.S. (Mothers of Pre-schoolers) group that we are forming. The new group is going to start meeting next month at our church, First Baptist Church in Mt. Zion. We are still finalizing the details, but I am very excited about this new group.

This morning Ethan got his helmet. FINALLY! As you know we've been working on this since before Thanksgiving! So far, Ethan is not impressed. This week will be a time of adjusting to the helmet and the amount of time he wears the helmet will gradually increase until next week he'll be wearing in 23 hours a day.

Afterwards we headed to Dr. Smith's office for a two week check-up following Ethan's battle with RSV. Dr. Smith said Ethan's lungs sounded CLEAR! Thank you for all of the continued prayers as we dealt with that nasty stuff. Keep your fingers crossed - maybe we'll be able to stay away from Dr. Smith's office until Ethan's 9 month well-child appointment in six weeks.

This afternoon Ethan will see the Hearing Specialist and Wednesday he'll see the PT.

Jeff and I are both looking forward to this weekend. We are going to be attending a conference for parents of children with hearing loss. I'm hoping to learn alot and although I recognize that Ethan has several other issues besides hearing loss I believe that the conference will still be beneficial.

And I am super excitd because this summer we are going to get to meet several other PBD families at the first annual Global Foundation for Peroxisomal Disorders Family/Medical Conference. I'm so excited!

Prayer Requests
-Please continue to pray for the Prince family and all of the families impacted by PBDs.
-Please continue to pray for the Lord to continue to work in Ethan. We feel that his current health is a real God thing and we will not stop praying and asking the Lord for healing.
-Please pray for the doctors and researchers who are working on medical interventions and treatments that could help our kids. I am a firm believer that the Lord often uses modern medicines as a way to heal. (It especially helps when you have a family doctor who is a Christian. :) We are so blessed because we know that Dr. Smith and so many of the staff are praying for our little man.)
-Please pray that Ethan would adjust to the helmet and that he wouldn't mind it. Please pray that his head would quickly adapt and correct. My prayer is that he would be able to have the helmet off by his first birthday (which is in about 4 1/2 months!)
-Please pray that Ethan will continue to make progress with the help of all of his therapists.
-Please pray for wisdom, guidance and patience as Jeff and I seek to be the best parents we can be for Ethan.
-Please pray that we will never forget that the Lord loves Ethan even more than we do!

March 3, 2011

Thursday 3/3/2011

Please pray for the Prince family from England. Their little Ellie left earth to be in heaven with Jesus today. Little Ellie suffered from the same disorder as Ethan and was born just about six weeks after Ethan was. You can read about Ellie's PBD fight on the blog that her mom wrote.

Please remember them in your prayers and that they will be able to find peace in Jesus, knowing that He is the great physician and that little Ellie is healed forever in heaven.