June 28, 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 - particularly weight bearing on his arms and legs - so that he can gain the skills needed to crawl and eventually walk. Thursday, Ethan had speech. The speech language pathologist got to see Ethan eat his breakfast and we tried to work on the sippy cup -- he just isn't impressed. She was glad to see how well he was eating, texture and quantity. She also got to hear him vocalize the "b" sound - which he has been doing for about two weeks now! We are also starting to explore using PECs (picture exchange communication system) to use in conjunction with verbal and sign communication.

Yesterday we had an appointment to check the progress of Ethan's head shape. He is only wearing his helmet at night now. Ethan has continued to make progress and we'll go back again next month to see how it has improved. When we were at the office I got to tell a mom about the new group, Central Illinois Parents of Children with Special Needs, that we have formed. I was so excited! The support network isn't about isolating our kids from the rest of the world, but rather to find others who "get it" when it comes to being the parent of an extra special little one!

This morning after our our walk, with Sarah, Rachel and Anna, Ethan and I went to Baby TALK. Ethan played with toys and didn't get to fussy until the end. There were several new moms to the group and I was able to share with them about the new support group. I am so thankful that Baby TALK is going to allow us to use their building for our meetings/playgroup.

Tomorrow afternoon Ethan's hearing specialist is coming to the house and is meeting with us and the deaf-blind specialist. Due to Ethan's combined hearing and vision losses, he is considered deaf-blind. But if you have ever met our little man you know that he uses his hearing (the hearing aids bring him up to almost normal) and his vision really well. He loves to play and laugh and eat and interact with his surroundings. It is still important though that we are a proactive as possible by using techniques and strategies that will help him learn, explore and communicate.

We are staying busy.....

Please continue to pray for us and all families impacted by by peroxisomal biogenesis disorders. We are looking forward to the conference next month and getting to meet so many other PBD families.

June 27, 2011

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!

June 25, 2011

More blueberries, please!



Ethan asked for "more" breakfast this morning. He used the "more" sign yesterday for lunch, but today not only did Jeff get to see it, but we also caught it on tape!

June 23, 2011

11 months old!

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













June 14, 2011

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. All the visits went well and Ethan is making progress, even if it is slow, there is still progress, so we have so much to be thankful for!

Another huge answer to prayer came Friday in the mail. We were awarded a stipend from the ARC of Illinois that will cover all the remaining costs associated with us attending the GFPD Conference in Omaha, NE later this summer! This is an enormous blessing for our family! Thank you DSCC and ARC of Illinois! Thank you for everyone who partnered with us in prayer. Please continue to pray for other families as they continue to fund raise and wait to hear from the different sources they have applied for help from -- several families will not be able to attend the conference if they do not receive assistance.

This week may end up to be a quiet one.... only one therapy appointment this week, OT on Thursday - it usually isn't like that but with it being summer and therapists on vacation, etc. it just turned out that way.

Yesterday, Ethan and I went for a nice long walk with our friends Alex and Sara. Alex is one day older than Ethan. Sara and I met at our BabyTalk playgroup. It was great to get out and enjoy the nice day with a friend. After our walk, Ethan and I went to my in-laws and were later joined by Jeff and we all enjoyed a nice dinner cooked by my mother in law and spent some time catching up as a family. All of the visiting must have really wore Ethan out, because he slept from just a little after 8pm to almost 5:30am this morning!

It was raining this morning, so Ethan and I stayed in and didn't adventure out for our usual Tuesday and Thursday walk with Sarah and Rachel. We did get to BabyTalk though, and I'm always glad when we get to go. I'll admit that it is hard to see how much all of the other kids are doing, compared to Ethan, but it is still good for us. I enjoy spending time with the other moms and it is good for Ethan to be around other kids - even if he doesn't really play with others.

Ethan has had two great achievements in the last two days as well. Yesterday, he ate an ounce of stage 3 baby food! This is very important because we are trying to get him to accept different textures and the stage 3 baby food has "chunks." I was very excited! Then, this morning Ethan took 2 oz. of his formula from his new cup. His speech language pathologist (SLP) recommended us try the NUK learner cup with silicone spout, so we got one yesterday. I tried it this morning and he drank from it! He isn't holding it yet, and he took it like a bottle, but at least it is a start. I'm still thrilled!

This Friday the MOPS group I'm a part of has a picnic scheduled. Hope the weather will be nice, we are having it rain or shine! :)

I have also been attempting to get a parent network together here in central Illinois for parents who have children with combined hearing and vision impairments. I have been so blessed by the parents that I have met through the GFPD that I want to try to find other parents in my area that although their child has a different diagnosis may have similar challenges. Ethan's EI therapists are sharing my desire to start a group with their other families. BabyTalk has even offered us their building as a place to meet! I hope that other parents will be interested in getting together.

Prayer Requests
  • Prayer for all families impacted by PBDs. Pray that those who do not know the hope of Jesus Christ, will come to know Him personally.
  • Pray for the families whose little ones are now in Heaven. Pray for the Lord's comfort and strength.
  • Pray for healing for the children who are still fighting this disorder each day. Pray for miracles! Pray for the discovery of treatments and a cure!
  • Pray that parents will have the wisdom to make the best decision they can when it comes to the health, well being and quality of life of their children.
  • Pray for the continued preparations for this summers GFPD conference.

June 9, 2011

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!

My most recent "favorite" picture of Ethan. :)

June 8, 2011

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.

June 2, 2011

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, this birthday is a BIG deal to us! We are going to have our family birthday party on Saturday, July 23rd and then we are having an "open house" at our church on Sunday, July 24th for family and friends.

I've been thinking a lot lately about all the things aren't like they "should be." I can't help but think of all the firsts that Ethan hasn't reached yet. He isn't crawling, he doesn't have any teeth, he hasn't taken his first steps, he is behind in almost everything, etc. But I know that we have so much to be thankful for - Ethan is very healthy, all things considered. He is rolling like crazy, is sitting by himself (he doesn't get into that position by himself, but once you put him in that position he can sit by himself for a while - he still tumbles so we stay close by to catch or place a pillow behind to soften the fall), and is typically a very happy baby (except when he gets tired or we try to put his glasses on).

As I think about Ethan being 10 months old and the one year mark quickly approaching, I can't help but think of all of the friends I have made through the PBD parent support group that are no longer able to hold thier precious little ones. My heart breaks for them and in the back of my mind I must admit I can't stop wondering when will it be our turn....

I also find it strange that the people who I now seem to have the most in common with are people that I have known for less than a year.... When I was pregnant, I began to understand the universal connection that all pregnant women and women who are mothers (even if their "baby" is all grown up) share. Now, as a mom of a child with special needs, it seems like we have a similar bond. I am so thankful that I have been able to become a part of the Global Foundation for Peroxisomal Disorders. I am looking forward to this summer's conference and meeting over 20 other families that know what it is like to have a child with PBD. We have families from the U.S., Canada and even one family from Australia attending the conference!

Prayer Requests
  • Pray that Ethan will continue to grow, develop and reach important milestones (even if he has his own timing for these).
  • Pray for all families impacted by PBDs. Pray for the Lord's love and comfort to wrap around those families whose little ones are in Heaven. Pray for wisdom and guidance for those families who are struggling with decisions about if/when/how to add to their family in light of this diagnosis.
  • Pray for the Lord's healing for all the children impacted by PBDs. I know that even if they are not healed here on earth that Jesus is the Great Physician and they will be eternally healed in His presence.
  • I also believe the Lord often works through medicine and technology - please pray for the doctors and researchers studying PBDs. Pray for treatments that will improve the quality of life for those impacted and for an eventual cure to these nasty disorders.
  • Pray for the success of this summer's conference and that all families that want to attend will be able to do so. Pray that fundraising efforts will be fruitful and that attending this conference will not be a financial burden on families. Praise report - the DSCC is going to pay for our registration fee for the conference and our four night hotel stay in Omaha. So, we are now just looking for funding for our transportation costs.

Ethan - June 2nd

More pictures, really, Mom?




No hands!



Hi!



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!

         Test                Ethan's result         Normal
  • Glucose               72                     60-100
  • BUN                    10                     4-19
  • Creat                    0.2                    0.5 - 1.3
  • Na                        141                   133-145
  • K                          4.9                    4.1 - 5.3
  • Cl                         108                   96-108
  • CO2                      21                     22-29
  • Calcium               10.2                 9.0-11.0
  • Albumin              4.9                   3.8-5.4
  • Alk Phos              433                   117-390
  • GPT                     40                     10-40
  • GOT                    77                     6-36
  • Billi, TI                0.2                   0.0 - 1.0
  • TI Protn               6.7                    5.1 - 7.3
  • A.M. Cortisol      19.4                   5 - 23
  • ACTH                  22.8                  7.2 - 63.3