March 27, 2012

Ethan's first sentence?

Ethan has been signing "eat" and "more" for sometime now, but last night at dinner he was putting them together over and over again like we've never really seen before - and we caught it on video!

March 25, 2012

Pancakes for PBD - Saturday, May 5th

If you find yourself in Central Illinois on Saturday, May 5th, please consider joining us for an all you can eat pancake breakfast event, "Pancakes for PBD." The money raised will go to help offset the cost for families to attend the 2012 Global Foundation for Peroxisomal Disorders Family Conference this summer in Orlando, Florida.

March 24, 2012

Ethan got his "drink" on.......

After 8 days without drinking anything, Ethan must have finally gotten thirsty! This morning he drank 8 oz. of his soy pedisure from his bottle, took his medicine and ate his oatmeal for breakfast! It is a wonderful way to start our Saturday morning! We are praising the Lord this morning for this little miracle!

March 21, 2012

Ethan's new stander

Months and months ago Ethan's PT ordered a stander for Ethan. A stander is a piece of medical equipment that is designed to assist a child or adult in standing. For Ethan, the hope is that the stander will allow Ethan the opportunity to bear more weight through his legs, thus strengthening his muscles so that he will be able to stand independently and someday walk.

Ethan stayed in it for ten minutes tonight, with us entertaining him the whole time, of course. :) He will eventually work up to being in it for 20 to 30 minutes at a time, at least two times a day. It will take us a while, but other moms with little ones who have needed standers said that they have really helped strengthen their legs. Ethan can stand at the couch for a few minutes, but he needs more weight bearing to help not only his muscles but also his bones.

Here are some pictures.








March 19, 2012

A New "Normal"

So, to update from yesterday. Ethan is still not drinking. He is still violently protesting the moment the bottle comes near him. But, he is continuing to eat, so we are very thankful for that.

Last night he at 4 oz. of green bean, pear and pea baby food at church and had another wet diaper before bedtime. He slept through the night and woke up this morning with a "good' wet and dirty diaper.

He refused the bottle again this morning but with much coaxing he did eat 4 oz of his pediatric drink which I thickened with rice cereal along with his meds/vitamins this morning in his high chair. Ethan doesn't particularly care for the high chair anymore, so this of course adds to the stress of meals.

We had another dirty diaper around 9:30am before we left for our Special Connections playgroup. When we got to our playgroup Ethan ate 4 oz. of strawberry applesauce and then played and played. I think he had a good time. I know I did. It was great! We had 5 mommies and our kiddos there! I am already looking forward to the next Special Connections in April and hoping that the good weather will allow for more of our friends to come. Being around other mommies that "get it" although all of our kids have different challenges and are at different stages, is just good for my heart.

After playgroup we headed to the doctor's office. We called this morning because we wanted Doctor Dan, Ethan's doctor to take a look at him. It was a great visit, Ethan weighed in at 23 lbs. 11 oz. and there were no signs of any kind of illness or dehydration. Doctor Dan told Ethan that he needs to drink from his bottle or from his straw cup. We'll see if Ethan will listen to the doctor any more than he will me. LOL

While it is not ideal, Doctor Dan told us to just keep doing what we're doing and keep him hydrated as much as possible and to call if we stop getting at least 5 wet diapers a day.

This afternoon Ethan had 2 oz. of his pediatric drink thickened with 2 oz. of peach soy yogurt and then 2 oz. of applesauce with 1 oz. of pedialyte added to it. He also had another wet diaper.

So, while I am frustrated that at least for the moment Ethan isn't drinking, we are able to still get the fluid and calories that he needs into him. So we will continuing spooning in the fluids and reintroducing the bottle and working on acceptance of a straw cup, etc. I'm not sure I really like this new "normal" but I think that I feel better knowing now that we can keep him hydrated this way if we need to.

Thank you for your continued thoughts and prayers.

March 18, 2012

Ethan's "non" drinking habits!

Ethan hasn't taken his bottle since early on Thursday evening. Since he won't drink out of a cup, and with a straw cup that we squeeze the liquid into his mouth he gets very little volume, he has simply cut off his drinking. This has us very worried of course. We have been pushing tons of applesauce and have been mixing pedialyte with the applesauce to give it more fluid, etc.

Saturday morning we took Ethan to a local "Express/Urgent" Care clinic and saw a doctor. He ruled out strep, ear infection and flu. He told us to push fluids (HA HA HA, if it was that simple we wouldn't have been at the doctor, right?) and to watch for wet diapers, etc. He said that if Ethan didn't have at least 4 wet diapers in a day that it was time to head to the hospital for IV fluids. While I wasn't completely happy with the clinic visit experience, I am glad that we went.

We are pros at keeping a intake/output journal, although we haven't had to in a while, but here was Ethan's yesterday.

7:45am - wake up with wet diaper
8am - 5 and 1/2 oz. of applesauce
9am - wet diaper
10:30am - 5 oz. of applesauce; meds/vitamins; 10 ml of pedialyte via syringe
12:30pm - dirty diaper
12:45pm - 3 oz. of applesauce
1-4pm - nap
4:15pm - wet diaper
4:30pm - 6 oz. of applesauce mixed with 2 oz. of pedialyte (for a total of 8 oz.)
7:35pm - wet diaper
7:45pm - 6 oz. of applesauce/pedialyte mix
8:30pm - bed

Ethan slept almost 11 hours last night and woke up with a good wet diaper this morning. He is still refusing bottle, we tried "big boy cups" again, etc. to the same violent refusal. We got 4 oz. of applesauce/pedialyte in him this morning along with all of his meds/vitamins. We are going to pick up some baby cereal today at the store that I can mix his Bright Beginnings (soy-based toddler drink, similar to Pedisure) with, so that he can hopefully spoon in all those nutrients and calories.

Thank you for the encouragement and prayers. I'll keep everyone posted about how today goes.

March 16, 2012

Friends and Family

Recently I read a quote that someone had posted on Facebook, "We're not sisters by birth, but we knew from the start, fate brought us together to be sisters by heart." If I was writing this post 10 years ago I would be have been talking about my Alpha Chi Omega (AXO) sisters. But these days when I read that I think of my PBD sisters and other mommy friends of little ones with special needs.

I think we've all heard the saying, "Friends are the family you choose for yourself." I will admit that I wish I would have met all these amazing people through different circumstances; but I can't even think of what this journey would be like without them. Since Ethan's diagnosis it has become harder and harder to be around friends and family with typically developing children. The friendship and sisterhood that I have with other mommies of extra special ones has been such a blessing to me. We are a family. Like any family we sometimes hurt each others feelings, we sure don't always get along or agree on things and sometimes we even "fight", but in the end we still care for each other so deeply that it aches. We laugh, cry, and pray for and with one another. We listen to complaints and share our frustrations with one another. We celebrate and we mourn together. Since most of us live in different states if not in other countries, we send virtual hugs across the miles and hate that we aren't closer.

I was talking with a new friend the other day and we were discussing that "almost everything we've learned about PBD we've learned from another parent." At least in our case it is so true! There is so little information about these disorders and while each child is unique and nothing works for every kids with PBD, there are so many valuable things that I've learned from the amazing moms in our group.

Ethan and I were at the health foods store today picking up his vitamins and one of the workers was asking the typical "toddler" questions, "does he talk yet?" etc. and I was being polite and said no, etc. Another lady walked up to me and asked, "does he have mito?" I looked at her and said no, and explained that he has PBD. She said, don't you get sick of the typical questions, "My son has Autism."  We spent several minutes chatting, because she "got it." While her son is much "healthier" than Ethan, and is much older, he is 10 now, she was able to relate in may ways. Her son didn't start talking until he was 3, and still has many challenges and people just don't understand.

Perhaps it is wrong that I have distanced myself from so many people in the last year and a half, but for me, it is part of my coping and surviving. For me, being around other moms who have little ones that are "different" helps me to not focus so much on what Ethan "should" be doing. It is painful to be around children that are typically developing because all it does is remind me of what Ethan is missing out on. I hate that it is so hard for me to be happy around typically developing children, and I am trying to be happy for parents as their children meet important milestones, but with every celebration that they enjoy, I wonder "will Ethan ever get there?".

So, I try to protect myself. I don't want to have those thoughts consume me all the time. We stay home alot. At home, Ethan is just Ethan. He isn't being compared to other almost 20 month olds who are running, talking, eating on their own, etc. At home he can combat crawl around our living room and play with toys designed for kids much younger than him, and be happy.

My PBD (and other special needs) sisterhood is there when I have questions, concerns, want to rejoice or want to cry. While each of our experiences are uniquely our own there is something that connects us, a bond that is hard to explain, as we seek to be the best parents we can be to the children that the Lord has given us.

It was this sisterhood that I turned to this evening in frustration of the last couple of days. Ethan hasn't been eating well, isn't drinking much, and is pretty cranky. I am very thankful that I have these women in my life. Thank you for caring about me and Ethan, just as much as we care about you. Thank you for being our "friends" even if we have never met in person or have only done so a few times because of the many miles that are between us.

For those who aren't part of this "special needs family," please don't hate me. But I do ask for your patience. Please know that I do still care about you and think of you often, and that in many ways, "it's me, not you." LOL :) Thank you for your continued love, support and prayers. We are blessed to have so many wonderful people in our lives.

Prayer Requests
  • Please pray that Ethan's appetite will return and that we will be able to get enough fluids in him to prevent dehydration.
  • Please pray for all children and family impacted by PBD or other disorders/syndromes/and serious illnesses.
  • Please pray that our society would learn to be more kind and understanding to children and adults that are not typically developing.

March 14, 2012

A new hearing aid is on its way...

We have yet to find the left hearing aid that has been missing for about two weeks now.... So, yesterday at the audiologist we had new earmold impressions made and also ordered the replacement aid. Thank goodness for Early Intervention that will help pay for the new hearing aid, because our insurance doesn't cover them.

Ethan should have his new earmolds and the new hearing aid in about two weeks. We've all noticed a huge difference since he has lost the one. He isn't nearly as responsive or "talkative." Plus, we've had to go back to wearing hats, not only because we can't lose the only one we've got, but because he is constantly pulling the right one out. I'm guessing that it must be pretty weird to only hear on one side since he's been aided bilaterally for so long, but that is just my guess.

March 10, 2012

Somethings just make my heart hurt....

Last week I read an article from the New York Times "The DNA Age - Prenatal Testing Puts Down Syndrome in Hard Focus" which explained that today 90% of parents who find out that their child will be born with Down Syndrome (DS) chose to terminate (abort) the baby. When I read this article my heart just ached. It ached because to me the article showed how little life is valued, especially if the life in question may not be a "typical" one.

When I spoke out about this article on Facebook, I struck a nerve with many people. While my intentions weren't to "call out" or personally hurt anyone who has had an abortion after finding out that the child they were carrying wasn't going to be a "typically developing child" it became clear that many felt that is what I was doing. I want to apologize to those that I may have hurt, but I will not apologize for believing that abortion is wrong. I will also admit that I may not have chosen the best wording when I was trying to express my feelings. In the midst of my anger over the loss of the lives of so many unborn babies I was not a good witness for Christ. I am sorry about that.

One thing that I didn't say, and I should have, is that God is a loving God and He is willing and waiting for us to ask for His forgiveness for our sins (all sins). Romans 5:8 tells us, "But God demonstrates his own love for us in this: While we were still sinners, Christ died for us." John 3:16-17 states, "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. 17 For God did not send his Son into the world to condemn the world, but to save the world through him." Everyone sins, it is just that those of us who know Jesus Christ as our Lord and Savior are saved by His grace. John 10:28-29 records Jesus reassuring believers that those who put their faith in Him can be sure of our faith even when we mess up and fall (because we will and do), "28 I give them eternal life, and they shall never perish; no one will snatch them out of my hand. 29 My Father, who has given them to me, is greater than all ; no one can snatch them out of my Father’s hand. 30 I and the Father are one.”

If you are reading this and don't know Jesus Christ as your Lord and Savior, please know that He loves you and is waiting for you to come to Him. If you would like to learn more about having a relationship with Jesus and His gift of eternal life, I am willing to talk with you and/or you can learn more here.

If you are reading this and you or someone you know has had an abortion, please know that God loves you and that He offers you forgiveness and healing. A great online resource for those who are recovering from an abortion or if you have a friend who has had an abortion is Project Rachel. If you live in the Decatur, Illinois area, New Life Pregnancy Center has a confidential abortion recovery group, you can learn more about the group and all of NLPCs services on their website - http://www.newlifepregnancycenter.com/

On Facebook I also said, in my response to the article, that I would "trade" a DS diagnosis for a PBD diagnosis any day. This wasn't because I am totally naive about the challenges and medical issues that children and adults with DS and their families face - although I will admit that I am no expert in DS. I was rather trying to express my concern that it appeared from such a harsh statistic that parents felt that the challenges of DS were too overwhelming, and therefore most children are not even given the chance to live outside of the womb.

In general, DS is not considered a terminal illness. This was what I was referring too. I mean, I was holding my 28 day old son when the geneticist told me that Ethan had only a 50% chance of living to his first birthday, and if he made it to one, he had a 75% chance to make it to five, but children with PBD rarely live past 10. By saying that I would "switch" or "trade" is something that I was meaning in the sense that I would love if my son did not have a terminal illness! It would also be "nice" that if Ethan had to be "different" it was with something that most people have at least heard of even if they aren't familiar with it. I mean, PBD just isn't something that the majority of people have ever heard of, most doctors will never treat a child with PBD and our doctors often ask us to share what we've learned from other parents of children with PBD, because they just don't have the experience or familiarity with PBD.

Not only does PBD steal the quality of life from children and ultimately their life long before it should, it changes your plans for a family for sure. As most of you know, Jeff and I are unwilling to risk having additional children with PBD so we have decided that we won't have any additional children "the old fashion way." This is also an area that many families who have a child with DS don't struggle with in the same way. A mom that I met at the Down Syndrome playgroup told me that the doctors told her that after having one child with DS the chance of having another with DS is typically 1%. (Her son is 3 years old and has DS - she had him when she was just 28 years old) For families like ours, who carry recessive traits for nasty diseases, there is a 25% risk with each pregnancy. For us, if we build our family someday we plan to do so through adoption, most likely through foster care. Why foster care? For families with special needs children still living it is often very hard if not impossible to adopt an infant, because most birth moms will not "pick" them. So, on top of the financial part of infant adoption, this is often not an option for families with a living special needs child. Other options for building a family include the use of donor sperm or a donor egg, the adoption of an embryo that would be implanted or in-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD) - this allows the embryos to be tested prior to being implanted so that only "healthy" embryos would be implanted. Some of these option, particularly the last two can be very expensive and aren't covered by most insurances and IVF with PGD is not something that many who believe that life begins at conception consider, even if the cost wasn't an issue. Therefore many families have very few options. Some families decide to play the genetic lottery and chance it, have prenatal testing done early on in the pregnancy and decide then depending on the results if they will chose to continue the pregnancy or not. Because Jeff and I are in agreement that we would not abort a child, we are not willing to go down this road. It hurts me heart knowing that so many people put themselves in this situation, especially if they go into it knowing that they will terminate the baby if the baby isn't "healthy." I know that may offend some people, and I'm sorry, but that is how I feel.

I believe that all children are gifts from God, they are created by Him. In Psalm 139:13-16 we read,

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

I believe that Ethan was "fearfully and wonderfully made." I believe he has value in the eyes of the Lord and should in our society, as should children with Down Syndrome and those with any other challenge or disability. I believe that the Lord has a purpose for Ethan and for us and his parents, even if I won't "understand" or know the "WHY?" this side of heaven. I won't try to pretend that I don't have tough days but I have faith. I like the definition of faith found in Hebrews 11:1, "Now faith is confidence in what we hope for and assurance about what we do not see." I remind myself of that verse a lot. When I get down, I also remind myself of the promise recorded in Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." as well as Jeremiah 29:11, "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 can be especially hard for me sometimes, especially when I think of the very real reality of PBD, but I know that God has a plan way bigger than me, and that while Ethan may only ever be healed when he is in the presence of the Lord in Heaven - healed by the Great Physician, in the end I have faith and I believe the promises of God.

Prayer Requests
  • Pray that those who do not know Christ will come to know His love and the forgiveness and hope that can only be found in Him.
  • Pray for all the children and families impacted by PBD, Down Syndrome and other challenges and/or disabilities. Pray for the health and happiness of the children and their families as well as wisdom and strength for their parents as they raise and love children in a world that doesn't "get" them.
  • Pray that our world will put a greater value on the lives of unborn children. Pray for women who need the Lord's forgiveness and and healing if they have had an abortion. Pray for more families to be open to adoption so that women facing unplanned pregnancies can be empowered  to choose life if she knows that she is not in a position to parent.
  • Pray for miracles! Pray for new treatments and for a cure to PBD and other illnesses/diseases. Pray for the doctors, therapists, teachers, and parents who are dedicated to helping children be as healthy and happy as possible, giving them every opportunity to reach their fullest potential.
  • Pray that Ethan will continue to grow and develop, stay healthy and happy, and that we will be able to be the parents that he needs and that we will continue to seek the Lord's help because we can't do this without Him.

March 8, 2012

New Friends

This evening Ethan and I drove over to Springfield to attend the Down Syndrome Infant Playgroup. It was great. The majority of the kids were under the age of five, and two of the little boys were really close in age to Ethan. It was a wonderful! While Down Syndrome and PBD are very different, it was still great. The moms were so nice and really welcomed me into the group.