May 30, 2011

A few ideas that I am kicking around...

I want to raise money for the Global Foundation for Peroxisomal Disorders! The GFPD is the new non-profit organization that is dedicated to helping children and families faced with a peroxisomal biogenesis disorder (PBD) diagnosis. If you haven't checked out our website, www.thegfpd.org, please do.

In the months since Ethan's diagnosis I have bonded with other parents across the country and world for that matter whose lives will never be the same because of PBDs. I have even taken on the role of GFPD Family Registry & Support Group Coordinator and I am very proud to say that we've been able to connect about 150 families from more than a dozen countries (some have kiddos who are still fighting the PBD battle and others have little ones in Heaven). I know it doesn't sound like a lot of families, but you have to remember that this PBDs are very rare genetic disorders.

So, I want to hold two fundraisers each year for the GFPD. Here are my ideas...

1) In the fall I would like to hold a Pound the Pavement for PBDs Family Fun Walk. The Park-Hopkins family from Georgia should get all the credit for this one. Their son Peter, who is now in Heaven, was their inspiration and they have held at least two Pound the Pavement for Peter events to raise money for PBD research. Thank you to the Park-Hopkins family for such a great idea! (Profits from this event would be designated towards research.)

2) In the spring I would like to hold a Pancakes for PBDs event. My pastor has already agreed that we can use the church's fellowship hall for a pancake breakfast event that would raise funds for the GFPD. (Profits from this event would be designated towards the annual GFPD Family & Scientific Conference.)

I know it will take a lot of planning and I'll need a lot of help from my family and friends, but I think it can be done. What do you think?

May 29, 2011

Just being cute!

I know I need to spend some time updating everyone, but instead I just thought I would share some of the cute picturs that I was able to capture of our little man this afternoon.






May 25, 2011

Its all about timing...

I took Ethan to the doctor on Monday because he was still fighting whatever bug he has caught. The fever would break, come back, break, and them come back all weekend long. So, Monday it was time to go see Dr. Dan.

Dr. Dan gave Ethan a good luck over and came to the conclusion it was probably a viral infection and that we should just keep doing what we've been doing and make sure we let the office know if the fever gets to 101 or higher. He also ordered blood work - some routine stuff to check related to Ethan's PBD.

So, I was planning on taking him to get the blood draw on Tuesday morning, but then I realized we needed to get another test called into the lab. So, Tuesday morning I spoke with the doctor's office and had it called in as well. But, since these tests need to be done first thing in the morning (because they have to be fasting) we then pushed it back to this morning.

However, last night Ethan crashed before seven o'clock and ended up sleeping through the whole night! He didn't take a nap yesterday.... So, I didn't want to have the lab attempt a blood draw with him not eating since 5pm the night before.... it is so tough to take blood from a little one anyway and with the amount of tests they are going to run they will be taking a significant amount.

So, we'll plan for tomorrow morning! We'll see. It is all about timing. If Ethan will take a good bottle before bed and then sleep through the night so we can go first thing in the morning (before his morning bottle) we'll be set!

Please keep us in your prayers.
  • It is our prayer that the blood work will be fine (remember fine for him is different than "normal" but as long as it isn't any worse than back in December we will be happy).
  • Also, please pray that Ethan will begin to tolerate his glasses. Right now he screams and pulls them off the moment we put them on. When he pulls them off his hearing aids come out with them, so it is a mess. We aren't giving up, but I think it is going to be a tough road to get him adjusted to wearing them.

May 24, 2011

Blessings

Another touching song....

Laura Story "Blessings"
http://youtu.be/1CSVqHcdhXQ

This song was shared with me by a dear friend, Melissa. Her little girl, Ginny, has the same disorder that Ethan has. In the last nine months we have become good friends, although we have yet had the opportunity to meet in person. Her and another good friend, Vicky, who I have been able to meet in person (yea!) are true blessings to me as we all do our best to be seek the Lord's wisdom and guidance as we parent the very special little ones He has given us. I feel very blessed to be part of the parent support group. I have to thank my friend Shannon for giving so much of herself to share with other parents as we struggle through this unique journey. You are a blessing to me and so many others. Thank you!

May 20, 2011

First day with glasses......

As you know by now, if you've been keeping up with the blog, is that we have been waiting for Ethan's glasses to arrive in the mail. Well, today they came! The glasses won't be able to correct all of Ethan's vision issues, but we are hoping that they will help.

When it comes to PBDs, nothing is predictable. Every child is unique and things can change often and/or quickly. In general most children with PBDs have numerous vision issues (depth perception problems, limited peripheral vision, cortical vision impairment, cataracts, glaucoma, complete blindness, etc.) and unfortunately most are unable to communicate verbally what they are experiencing.

So, when it comes to Ethan's vision this is what we know - he is farsighted and has astigmatism. It also appears that his optic nerve is smaller than it should be. As mentioned in previous posts, the eye specialist in Iowa estimated his vision at 20/750, and Ethan will be undergoing some additional testing in August that will give the doctors an idea of how his brain responds to visual stimulus. We do know that Ethan uses what vision he has very well. He loves to play with toys, reaches for objects, excites when his bottle comes near his mouth, etc. His vision therapist is very proud of him. So, it is our hope and prayer that the with the correction of the farsightedness and astigmatism, that Ethan's eyes will have a greater ability to work with the brain to process what he sees. It is also a hope that the glasses will prevent his eyes from crossing or drifting apart.

Keeping the glasses on in addition to the hearing aids is already proving to be a challenge, but I'm sure with time Ethan will come to accept them as just another part of him. I am so thankful that he is only wearing the helmet at night now (although he hasn't worn it since Wednesday because of him running a temperature).

So, here comes the fun part, pictures of the little man in his glasses!

















FEVER!

Thank you to everyone who has been praying for us the last couple of days. The high fever from Wednesday seems to be completely gone now! Ethan's temperature has been back to normal since yesterday afternoon. No diarrhea yet today (and hopefully it will stay that way). His appetite seemed start coming back last night and this morning he even ate a few bites of fruit and cereal for breakfast.

Not sure if it was just a little virus or if maybe it is teething (although I can't feel or see any) but whatever it is, it seems to be gone for now. This was Ethan's first health issue since the RSV this winter, and I am so glad that he has seemed to make it through so well. I don't think I'll ever be able to be at ease whenever there is a fever, or a simple cold, etc. but I guess Mommies are supposed to worry about their little ones, especially when they have underlying health issues.

May 15, 2011

A very busy four days....

This is going to be a long one....

Tuesday, May 10th
Ethan had his weekly visit with Julie, DT-Hearing, today. She usually comes on Mondays, but because of the Mother's Day weekend, she came today. Ethan showed of his amazing sitting abilities - sitting for over 30 minutes during therapy. He played with toys and even "talked" a bit for Julie. He has a knack of being very quiet for her .. LOL. She is excited because Ethan has been making more "happy" sounds recently. We are still working on the "b" sound. Sometimes I think he might be starting to vocalize it, but other times I'm not so sure. We also think he is starting to "pre-sign" as a few times it has appeared as he is trying to sign food or milk! We are very excited about this new development.

During our visit with Julie, Ethan's dietitian, Jen came for her visit. Ethan is growing very well. He weighed in at 19 pounds and 14 ounces and is nearly 29 inches long. He is still right at the 50th percentile and we couldn't be happier about it - he even looks a little chunky. :) We discussed his eating and spoke at length about his progress (or lack of) with solids and drinking from a cup. She suggested that I contact our Speech Language Pathologist about feeding therapy. So, I've called Betsy and she is going to talk to Dr. Smith. I guess in EI, SLPs can only work on feeding therapy if it is considered sensory. If it is considered medical they aren't allowed to.... but since Ethan's swallow study a few months ago was normal, it most likely isn't the mechanics as much as it is sensory - which seems to be just a part of PBDs. URG... makes me sad that everything has to be so hard for our little ones.

Wednesday, May 11th
In the morning Ethan had PT. He had had the last two weeks off from PT because his PT was out the country visiting family. Her last visit was the one with the OT in which it was declared that Ethan was officially sitting unassisted. Boy, did Ethan surprise her with how much stronger he has gotten in the last few weeks. She was thrilled to see him sitting for nearly 20 minutes! It is true that he still tumbles now and then, but we are so very proud of the progress he is making.

She tried to get him to work his tummy muscles in his Bumbo seat.....
but that wasn't very comfortable for the "little" guy. :) I am so proud of him! Remember, this is the baby that we were taking to the doctor's office every few days just to make sure he was gaining a few ounces a week!
Now that he is doing so well sitting, she is going to start working on weight bearing....

It was just for a few seconds, but he held himself up! She had to put him in the position, of course (he isn't doing much pushing up on his own). But I will admit - I cried when I saw him doing this! He's doing great at sitting, crawling will be next!

We also discussed his helmet. The PT said that if Ethan's head would have looked like it does now back in November that she wouldn't have recommended a helmet! YEAH! He is making a lot of improvement. We also talked about what we were going to do once he got his glasses, and she cleared us for going to just wearing the helmet at night once the glasses arrive! This is great! I am so excited that he has made enough progress that we can go to night only for the helmet. This is going to be so much better once he gets the glasses. I know that I wasn't sure how he was going to wear all of the stuff, especially in the heat. Ethan's been having such problems with rubbing anyway and now with it getting warmer.... Oh, let's just say we are VERY excited that Ethan will be wearing his hearing aids and glasses during the day and the helmet at night.

Thursday, May 12th
We left our house before 9am to begin the trip to Children's Hospital in St. Louis, MO - about a two and a half hour drive from Decatur (if the traffic isn't bad.) We were headed to go see Dr. Lueder, the pediatric opthomologist recommended by the eye specialists in Iowa City.

The visit with Dr. Lueder went well. Before we saw Dr. Lueder, another doctor saw Ethan. He was a younger doctor and was really great with Ethan. Our little man really showed off his vision skills and was getting a little frustrated that the doctor wouldn't let him play with the toys that he kept making Ethan track. Ethan's eyes were dilated and a full exam was conducted. The worst part of it was when Dr. Lueder held Ethan's eyes open to look at the retinas and optic nerve. Nothing was mentioned about his retina being abnormal, but he did mention that his optic nerve appeared small. From what I have read and heard from other parents, a small optic nerve is very common with PBDs.

Dr. Lueder wrote a prescription for eye glasses. The glasses will help correct Ethan's farsightedness and his astigmatism. He also is having us come back in August for two more tests, a SSVEP and a Flash VEP. These tests will read the responses Ethan brain has to visual stimulus. This will help us have a better picture of Ethan's overall vision.

So, we left Dr. Lueder'sMiraflex glasses for the little man. They have been ordered and she will ship them to us when they are done. Also, another huge blessing was that our insurance covered almost the entire cost of the glasses - thank you, Jesus!

Here is Ethan trying on the frames. This is the style and color we picked out for him.
The glasses are very flexible and will have a band that will help keep them on.

While we were walking in to St. John's a lady from Shriners Hospital called to let us know that they had received Ethan's application for services and that it would be reviewed and that they would contact us in a few weeks to let us know if he has been approved to become a patient. We are praying that they will accept Ethan. Not only does Shriners focus on helping kids with orthopedic issues, but they never turn away a family due to their inability to pay! This is great, because the majority of children with PBDs need extensive orthopedic support to help them walk (ankle-foot orthodics, braces, walkers, sometimes even surgery).

Afterwards, on our way home from STL we stopped to visit with the Maag family - their little girl, Kenna, who is 2 1/2 years old, has the same rare disorder that Ethan has. I had been able to meet Vicky once this past fall, but we were both very excited to get more time together and to have a play date with the kids. We had a blast! I am looking forward to getting together again this summer!





After a few final hugs we headed home. Visiting with Vicky, Kenna and Clancy (big sister), was great for Jeff and I. Kenna is doing so great and it helps give us hope for the future.

Friday, May 13th
I called the helmet guy in the morning and made an appointment for the afternoon. Ethan's helmet has just continued to cause him trouble. It seems like we have been back to get more of the inside taken out almost every other day.... Okay, its not been that often, but it feels like it. Andy removed more of the inside foam and then we talked about Ethan getting his glasses in the next week or so. He agreed with the PT that it would be okay to go to wearing the helmet just at night once Ethan's glasses arrive. Ethan's head shape has been improving, and he is concerned that trying to wear the helmet with the hearing aids and glasses will be too much and might cause additional rubbing/irritation. We want to avoid that, so we are very excited that once the glasses will arrive Ethan will wear his helmet at night time only! We are going to aim for him wearing it 10 to 12 hours each night (7pm-7am). No, Ethan doesn't sleep that long at night, but we'll just start a new bedtime routine - off with the glasses and hearing aids and on with the helmet.

This week is going to be another busy one....
Monday - Hearing
Tuesday - Audiologist appointment in Springfield
Wednesday - PT
Thursday - OT
Saturday - Ethan and I will travel to Mt. Vernon for my little sister's high school graduation. Jeff's little sister graduates from high school Sunday afternoon and we decided it would be best to divide and conquer.

Prayer Requests
Please pray for:
  • Strength, wisdom and comfort for all families impacted by PBDs.
  • The Lord to heal Ethan. That Ethan's mind and body will continue to develop and that he will be protected from the most devastating effects of these disorders.
  • The doctors and researchers that are studying PBDs. We pray that treatments will be found that will greatly improve the quality of life for all children impacted.
  • Jeff and I as we continue to strive to be the best parents we can be for our son. Pray that we will never stop thanking the Lord for the precious gift He has given us in Ethan. Pray that we will always seek to honor and please Him, looking to Him for guidance and direction.

May 7, 2011

Theme Songs...

I have found myself in tears recently while listening to the radio. Here are links to a few of the songs that have greatly touched me. I'll will call them my "theme songs."

Mandisa - "He Is With You"
http://www.youtube.com/watch?v=4AAALBo2DKs

Mark Schultz - "He's My Son"
http://www.youtube.com/watch?v=_l09AJ9lXSE

Mark Schultz - "What It Means to Be Loved"
http://www.youtube.com/watch?v=yE58hw_ghHI

Carrie Underwood - "Temporary Home"
http://www.youtube.com/watch?v=if7CZF_ycWQ

May 1, 2011

Sunday, May 1st - Great day!

Today we were able to get up and around early enough to get to Bible Study as well as Worship service at church. It was a great morning. During Bible Study we watched a video by Louie Giglio called "Fruitcake & Ice cream" (watch a portion of the video on YouTube.com) it was an amazing illustration of God's grace and love that He extends to each and everyone of us, we just have to be willing to open our hearts and lives to Him. The Worship service was also great. Our minister, Pastor Tracy, has a friend who is working as a missionary in Japan. She spoke to us live via Skype. Pastor Tracy then spoke to us about the importance of not losing the excitement we had last week as we celebrated the Resurrection.

Ethan was very good in the nursery today. He seems to be getting used to being in the nursery on Sunday mornings and Wednesday nights, and I am getting more comfortable with leaving him. We have wonderful nursery workers, and our friend Tammy takes extra special care of our little man. We feel very blessed to know that we can enjoy Bible Study and Worship knowing that Ethan is safe and loved.

When we got home it was time to play and for me to get some pictures of the little man in his "church clothes."



I just love this smile!