December 31, 2011

Christmas 2011 - Part 1

Here are just a few pictures from Christmas Day. We spent Christmas day at my parents' house.

Ethan LOVES his Daddy.

Ethan with his Great Grandpa and Great Grandma Troutt.

Can we eat yet?

Ethan's dinner - potatoes, sweet potatoes, green peans and pears... YUM!

Grandpa Chambliss helping Ethan opening his presents.

Ethan LOVES his Grandpa and Grandma Chambliss.

At least one of us got a nap.

Ethan and his new basketball hoop!

Double dribble?

Hello!

Best seat in the house!

December 23, 2011

Reduce the risk of genetic diseases before pregnancy with a DNA test!

So, I know this isn't a typical Christmas season post, but I wanted to share it with all of my readers. As you know when Jeff and I planned on starting a family we had no idea that we were carriers for the disease that has now changed our lives forever. We love our son with everything we have, and know that Jesus loves him even more than that, but if we had know we were both carriers we may have made different decisions about how to build our family.

An affordable way to be tested as a carrier of many genetic diseases is now available. Many insurances will cover the testing, and if your insurance doesn't the test is less than $400 to screen for over 100 diseases. Please note - it usually tests for the most common mutations, and therefore cannot be a guarantee to detect ALL possible genetic mutations that you are a carrier for, but if you are considering having children, I would HIGHLY recommend looking into the test. You can check out the website for Counsyl for more information.

In our situation, if Jeff and I had both been tested prior to us beginning to build our family, the test would have been able to tell us that Jeff is a carrier of the G843D mutation. This mutation is one of the two most "common" mutations that are associated with PBDs. However, since the mutation I carry is a much more rare, the test doesn't screen for it. With the information that at least one of us was a carrier of a fatal disease it could have given us more options such as doing more extensive testing for me, etc. before trying to get pregnant, or preparing us for the possibility of a special needs child, or consider adoption as the path that we would build our family.

Please do not take this post the wrong way. We love Ethan! We know and believe that God has a special plan for our little man and for us as his parents. Plus, if we had "found out" during my pregnancy that our baby was going to be "sick" we would NOT have aborted our baby, but we would have been able to try to prepare ourselves and our families for the diagnosis. Please know that when our OB mentioned the "common" tests that are often done during pregnancy - for example testing for Down Syndrome or Cystic Fibrosis, I cried in her office - letting her know that we would love our baby no matter what!

I simply want to put this information out there because it may help someone make a more informed decision about how they want to build their family. Jeff and I know that we aren't willing to take the risk of a "natural" pregnancy again, so when the time comes, if the Lord leads us to have additional children we plan on adopting. For other families who find out they are carriers of genetic disorders they may make other choices such as: Preimplantation Genetic Diagnosis (PGD) with in-vitro fertilization (IVF); donor egg or sperm; or preparing themselves for the possibility of having a child with a genetic disorder by knowing their chances of having a child with the disease.

I know that some people may not agree with this proactive approach prior to pregnancy to know the risks of having a child with a deadly disease, and that is okay. But to those of you who are thinking of building your families (even if you've had healthy children before) you might want to consider getting carrier testing done.

December 18, 2011

Ethan does the "wiggle worm" crawl - December 18, 2011

video
We are so proud of our little man. This morning in the church nursery he "wiggled" forward with purpose a little over a foot! I was so thankful that I was there to see it. I cried, as did our friends in the nusery. Later this afternoon Ethan "wiggled" to Jeff, and I was able to catch it on video! Enjoy!

December 15, 2011

Matthew West song - "One Last Christmas"

Make sure you have some tissue handy when you watch this video. I heard this song for the first time today.

While we feel blessed that we will, God willing, be celebrating Christmas with Ethan here on earth this year, many of our close friends from our GFPD family will not. While this video is about a little boy who passed away due to cancer, it is very close to home for Jeff and I.

Please don't take your little ones for granted.

December 13, 2011

Liver Panel Results

For my fellow PBD families that may be interested in the "numbers" they are below.

While we know that Cystadane (betaine) is not a cure, it may be a possible treatment option for children with PBDs. We still don't know if it is "working" but since the liver levels seemed to have stabilized we will plan to continue the medicine. It is our hope that after six months of treatment that their will be a biochemical change, such as the lowering of Ethan's Very Long Chain Fatty Acids (VLCFAs) that will be a significant enough to say that medicine is "working."

At the present Ethan is the only child with PBD that we know of that is taking Cystadane, so right now he is a case study of one. It is the hope that within the next few months to a year that an FDA approved trial will be up and running that will include a small number of kids with PBD. It was hard for us to decide to go ahead and push to get Ethan on the medicine before an official trial. It is hard to be the first one, now know if it could help, hoping and praying that it wouldn't hurt, etc. Today we are feeling encouraged that we made the right decision to go ahead and start the medicine, not waiting for the trial. Is the medicine going to enhance Ethan's quality of life? Honestly, we don't know, but we sure are praying that it will.

We are so thankful for our geneticist and his nurse for helping us obtain the medicine with the help of the National Organization for Rare Disorders (NORD) because without NORD paying for the medicine it wouldn't be feasible for us to get it for Ethan, as it is very costly. We are also so thankful to Dr. Braverman in Canada for her research and for her willingness to partner with our local geneticist, Dr. Schneider at Carle Clinic in Champaign, to try the medicine. They are both truly dedicated to making life better for the children they see.


10/11/2011
Baseline

11/10/2011
1 mo. of  treatment

12/12/2011
2 mo. of treatment

Normal Ranges
Albumin
4.2

4.9

4.0

3.8-5.4
Alk Phos
398 (H)

457 (H)

476 (H)

117-390
ALT
28

79 (H)

41 (H)

10-40
AST
66 (H)

126 (H)

83 (H)

6-36
Total Billi
0.5

0.4

0.4

0.0-1.0
Total Protein
6.5

7.0

6.3

5.6-7.5
Direct Bili
0.1

0.2

0.1

0.0-0.3

December 12, 2011

It has been a while....

It is hard to believe its been nearly a month since my last post. I've thought of writing often, but just haven't made the time to do so. We've been busy.
  • In the middle of November we got the keys to our new house and started working on making it ready to move in. It takes a lot of work to bring a house that was built in 1965 up to 2011, almost 21012. With a ton of help from family and friends we were able to spend our first night in the house the Wednesday before Thanksgiving. The work has continued and there is still more stuff in boxes than out, but we are very happy and excited about having a house that will be accessible for Ethan when he is able to start using a walker and if a time ever comes that he needs a wheelchair.
  • Over the Thanksgiving weekend we were able to spend time with both sides of the family. It was nice to see family, even though it is still very hard for me, since there are so many little ones. I am thankful that everyone else has healthy, typically developing children, but it is still so hard for me. I try to give these feelings over to the Lord, but it seems like I never feel at peace regarding all the "NORMAL" kids that "EVERYONE" seems to have.
  • Ethan has been busy with all of his therapies. Ethan continues to see the speech language pathologist, developmental therapist-hearing, occupational therapist and physical therapist weekly. Additionally once a month the developmental therapist-vision and the dietitian come to visit.
  • Just after Thanksgiving Ethan had another ABR (a hearing test) and he slept really well - he must sleep for the test because it measures the brain's response to sounds. We gave him melatonin to help him sleep. We started doing this nightly about a month ago. It has been so great. Ethan is getting the rest he needs, and wakes up such a happier little man. The hearing test showed that while Ethan's hearing loss is significant that at this point his hearing aids are still able to help him! This is great news. We will retest again in a year or sooner if we feel that there is a reason to do so.
  • Ethan had his first picture with Santa last week at a Christmas party hosted by BabyTALK. We love being a BabyTALK family. I am so thankful that they have embraced the idea of a playgroup/meeting for families of children with special needs. I am thankful for Special Connections and recently wrote a letter about the group that is being distributed to other families throughout our area. It is my desire that more families will get involved.
  • Ethan has been on the experimental medicine for two months. Just today we had blood work done. The liver panel came back, and while I don't have exact numbers yet, the geneticist called this afternoon and sounded encouraged. While the levels are elevated, they seem to have stabilized since last month. We were worried that they might double again but they haven't! Yippee! The results will be shared with Dr. Braverman in Canada and a decision will be made about what dosage Ethan will continue on. I'm excited that we have a go ahead for continuing the medicine. It is great news for Ethan, for us, and hopefully for all children with PBDs. Praise the Lord! Thank you for the prayers! The other tests will take a while for the results to come in as they have to be sent to Kennedy Kreiger Institute in Baltimore.

I seem to have a lot on my mind lately. Today, when we were at the hospital getting Ethan's blood work we had a quick visit with our geneticist's nurse, Laura. She's great! I gave her a Christmas card, and one for her to give to Dr. Schneider and just started crying. Last year there were thoughts that it might be Ethan's first and only Christmas with us. Now, Lord willing, in just a few weeks we will be celebrating Ethan's second Christmas. While I am overjoyed by this, my heart is heavy for all our families that won't be able to hold their little ones this Christmas. It has been a really hard year for our support group and more than a dozen families will be experiencing their first Christmas without their little one. My heart just breaks.....

Prayer Requests
  • All families impacted by PBDs. Pray that those who do not know Jesus personally will experience His love in a real way this Christmas season. That our focus will be on CHRIST this Christmas. That there will be revival and many will come to know personally the babe in the manger who grew up to be the man on the cross.
  • For strength and comfort for families that are hurting from the loss of their little ones.
  • For healing! For miracles! For a cure to this nasty disease! Pray for the therapists, teachers, nurses, doctors and researchers who have dedicated themselves to helping kids with PBDs.
  • Ethan will continue to stay healthy and continue to grow and develop. Pray that the medicine would work and that it will increase his peroxisome function. Pray that the medicine would be successful and that other children with PBD would be able to be helped by it as well.
  • Strength for Jeff and I as we love and parent our amazing little boy. Pray that we will always seek the Lord's guidance as we make medical decisions and other choices that will impact our family.
Thank you for your continued prayers, love and support.

November 14, 2011

Prayers for the Bartosiewicz family of CT

Another little one with PBD has left the earthly arms of his parents for the heavenly arms of the Lord. Please pray for the Bartosiewicz family of CT. Their little one Justin passed away today. He would have been two years old on Wednesday.

Justin Bartosiewicz, November 16, 2009 - November 14, 2011

November 13, 2011

A Great Weekend

We had a wonderful weekend visiting with the Gamble and Maag families. It was so wonderful to see our friends and their little ones. Melissa and Brant's daughter, Ginny is three. Shannon and Vicky have two daughters, Clancy who is healthy, and an amazing big sister to Kenna, who is also three and has PBD like Ginny and Ethan. These women and their families are a huge blessing to me and Jeff.

Spending the weekend with them was just what we needed in the midst of all the hectic stuff with trying to get the house move-in ready. It also gives us so much hope for Ethan. While all three families know that the future truly is in the Lord's hand, it is encouraging to see two little ones that are thriving against the odds!

Kenna, Ginny & Ethan at the St. Louis Zoo!

November 10, 2011

A month on the experimental meds....

Ethan has been on the experimental medicine for a month now.... so we started this morning of with a fasting blood draw at DMH. In addition to the liver panel test he also had his blood drawn to check his ACTH and Cortisol levels. The liver panel is to check to make sure that the medicine isn't causing any adverse affects on his liver. As long as his liver panel results have stayed the same (they have been elevated since birth due to PBD) and have not worsened then we will begin slowly increasing the dose of Cystadane (betaine). The ACTH and Cortisol tests are routine tests that Ethan gets every six months to monitor his adrenal function. For children with PBD the risk for them to have adrenal insufficiency is high, especially after the age of 1. So, to be proactive, Ethan has his measured every six months so that if he ever develops this problem we can hopefully catch it quickly and begin treating it with the proper medication.

Otherwise everything else has been pretty "normal" around here. We are continuing all of Ethan's therapies, doctor appointments, etc. We are getting the keys to our "new" Ethan friendly house this evening and are looking forward to getting it all fixed up and getting into our new house.

Please continue to pray for Ethan, our family, and all families affected by PBD.

Prayers for the Wolfe family of Nebraska

Another precious little one is in the arms of Jesus today. Please pray for the Wolfe-Saunsoci family of Nebraska as their little boy Taysen has left this world for his heavenly home with the Lord. Please pray for strength and comfort that only the Lord can give. Taysen is the 16th child in our support group that has passed away this year. I hate peroxisomal biogenesis disorders (PBDs)!

Taysen Lewis Wolfe-Saunsoci, May 13, 2011 - November 9, 2011

October 31, 2011

Happy Halloween!

This year Ethan was a monkey for Halloween. We attended our church's "Eats Before Treats," and then headed over to Ethan's great grandparents' house to visit. We then headed home so Ethan could have some dinner. It was a great evening!

Our little monkey!



Daddy & Ethan at our church's "Eats Before Treats"


Ethan and his cousin Grace visiting with their Great Grandparents.


October 29, 2011

Prayers for the Shepherd family of Indiana

Another little one with PBD entered heaven today. This has been a really rough week - I hate peroxisomal biogenesis disorder!

While the Shephered family has hope because they know that their daughter, Kyarah, is with Jesus, their hearts and arms still ache. Please keep their family and all the families impacted by PBDs in your prayers.

Kyarah, 1/11/2011 - 10/29/2011

October 27, 2011

An Up and Down Kind of Day

Today was an up and down kind of day. The day started out on a high note with Ethan doing really well in Physical Therapy.



I am so proud of him. I know that he is very behind in development compared to typically developing kids, but he is still making progress! Progress is progress, even if it is slow. We will continue to celebrate each and every little milestone, no matter when they occur.

Later in the day we had a play date with a good friend and her two little ones. She is a dear friend that I've known for years and a fellow sister in Christ. She has two healthy, typically developing little boys. They are both very cute and are a true blessing to their parents. Unfortunately, it is becoming more difficult for me to be around parents of typically developing kiddos. Ethan has been behind since the beginning, but when babies are really little they don't do alot - but it seems like once they hit about six months typically developing kids zoomed ahead of Ethan and haven't looked back since. I don't like that I don't enjoy spending time with my friends and their healthy kids -- it actually makes me really sad that I feel the way that I do, but it seems like right now that is just how it is.

So, to all my friends with healthy kids, please accept this as my formal apology for ignoring you. It is just too hard sometimes! It is too hard to look at healthy, typically developing kids and then see how far behind Ethan is, how hard everything is for Ethan, and that it just isn't fair! It isn't fair that my head is filled with thoughts of what my son will never achieve and wondering how long he'll be here with us before the Lord calls him home. My days are filled with the stresses of getting medicines in, making sure Ethan eats, encouraging him during therapy sessions, making sure we get to all of our doctors appointments, advocating for him and other kids with special needs, sharing the ups and downs with other families with children with PBD, and wondering when the next little one will leave the arms of their parents for the arms of Jesus. This past weekend two little ones passed away and as I type there are three other little ones who aren't doing well and who will likely be with the Lord very soon.

I understand that most people with healthy kids don't want to hear about my days or what goes through my head, so it is easier just to keep a distance. Easier for them and easier on me. Please don't take this the wrong way -- I am glad that so many people have healthy kids. I'm just also very sad that so many kids have it so tough!

I want to thank everyone who is continuing to pray for Ethan and our family. I am thankful that I have friends and family that admit that they can never fully understand what our journey with Ethan is like, but they are along for the ride anyway.

So, today is just one of those days..... sometimes I've got it together and other days are a struggle.... right now it seems like there is a lot of struggling going on....

Heaven is for real!

This weekend two more precious little ones left the arms of their parents for the arms of Jesus. On Saturday, little Chase who was just six months old, left this life for the next. Sunday he was joined by little Ilan, who was fourteen months old. It was a rough weekend for the GFPD family as we all know the devastating reality of PBDs, and grieve together for those whose arms can no longer hold their little ones.

You may have heard or read some of the recently popular books - "Heaven is for Real" by Todd Burpo or "The Boy Who Came Back from Heaven" by Kevin Malarkey. I have read the first, but not the later myself. Since becoming a Christian I have often thought of Heaven, but not nearly as much as I have since learning that most likely my son will leave this earth sooner than I would like - that he will likely be waiting for me there instead of me waiting for him. "Heaven is for Real" is a great book that encouraged me in my beliefs about what the Bible teaches about heaven and about the Lord.

A few weeks ago our pastor spoke about Heaven. Unfortunately I wasn't in the sanctuary for the message, but Jeff told me about it afterwards. One of the things that our pastor shared about was the faith that King David had that he would see his infant son once again. (Please see 2 Samuel 12 for the complete story). The second part of 2 Samuel 12:23 says, "I will go to him, but he will not return to me." While our pastor shared that no where in the Bible does it say -- "Babies go to heaven" -- these verses indicate for us that BABIES DO GO TO HEAVEN.

Does that mean that I will not mourn when Ethan goes to be with the Lord, or anyone else that I love, NO. But does that mean that I have faith and I have hope, yes. If you have never read the "Faith" chapter of the Bible - Hebrews 11, or it has been a while, I would encourage you to check it out. Hebrews 11:1 says, " Now faith is confidence in what we hope for and assurance about what we do not see." For while I can not see heaven, I have confidence that heaven is for real. I have confidence that because of Jesus and his sacrifice on the cross -- paying a price that He did not owe because it was a price that we could not pay -- and because He invites us into a relationship with Him, that we can have spend eternity in heaven with Him. 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 eternal life."

I also have faith that infants, children and adults that are unable to understand God's gift of love and grace due to age or mental ability, go to heaven when they die. I believe that every baby who died before being born is in heaven with the Lord and that the parents who put their faith in Jesus will see them someday. 1 Thessalonians 4:13 reminds believers that while we may mourn the loss of loved ones who are fellow believers that we have hope - that we do not have to grieve as if we didn't, "Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope."

So, while I am grieving with my friends for the loss of their little ones, I have hope. I have faith that Chase and Ilan are now whole! PBD is gone, they are free of pain or suffering, they have been healed by the Great Physician. In Revelation 21:4 we have the promise: "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

Prayer Requests
  • Please pray for the parents and families of Chase and Ilan. Pray that the Lord will give them comfort and strength as the mourn their loss and ache for their little boys. Pray that those around them will come to know Jesus, if they do not already.
  • Please pray for a cure to PBDs! Pray that miracles would happen! Pray that researchers and doctors would use the knowledge that God has given them to develop treatments and a cure for these nasty disorders.
  • Pray for all families who have been changed forever because of PBDs. Pray for those whose little ones wait for them in Heaven and for those whose little ones are still fighting this horrible disease. Pray that they will have the strength to make the best decisions for their children and the energy needed to be the be best parents possible for their little ones.
  • Pray that organizations such as the Global Foundation for Peroxisomal Disorders would be able to continue to minister to families impacted by PBDs. This organization has been such a blessing to our family!
  • Pray that Ethan will continue to grow strong and remain healthy. Pray for his development and that he would continue to make progress.
  • Pray that Jeff and I will seek the Lord in all that we do as we parent our precious boy. Pray that we will never take him for granted and that we will cherish each day we have with him.

If you don't have a relationship with Jesus - please know that you can have this hope. Romans 5:8 speaks of how great God's love is for us - "But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. " If you would like to talk to someone about God's love for you, please let me know. You can also read more about becoming a Christian here.

October 23, 2011

Prayers for the Bose-Betzer family of New Jersey

Another little one with PBD entered heaven today - two in two days! This disease really sucks! Please keep their family and all the families impacted by PBDs in your prayers.

Ilan Betzer, August 18, 2010 - October 23, 2011
http://obits.nj.com/obituaries/jerseyjournal/obituary.aspx?n=ilan-stanley-betzer&pid=154272553

October 22, 2011

Prayers for the Barno family of Kentucky

Another little one with PBD entered heaven today. This disease really sucks! While the Barno family has hope because they know that their son, Chase, is with Jesus, their hearts and arms still ache. Please keep their family and all the families impacted by PBDs in your prayers.

Chase Barno, 4/18/2011 - 10/22/2011

October 19, 2011

Learning to stand....

Ethan is in the proccess of learning how to bear weight through his legs, which will give him the strength to stand and someday walk!

With the help of his AFOs and the knee immobilizers that the PT brought along with her, Ethan is able to bear weight through his legs and stand with support at the waist. Here are some pictures from last week in PT:






Today in PT while Ethan wore his AFOs and the knee immobilizers he stood with support for over 20 minutes. Plus, his PT was able to let go of Ethan and he was able to maintain his weight for 1 SECOND! I know that standing for 1 second may not sound like much, but in our world this is a HUGE accomplishment. Maybe next week it will be for 2 or 3 seconds. Maybe by Christmas it will be 30 seconds! I think that is going to be one of my Christmas wishes :).

We are so very proud of our little man! We love him so much!

October 18, 2011

A Visit with Friends

This morning Ethan and I got in the car and headed north. We were on a mission to go visit our dear friends Mabel and Ramee. Ramee and I met back in the summer when I started to reach out to other parents in our area who have extra special little ones. We've talked online, on the phone, and met in person this summer when she hosted a 5K walk/run to raise awareness for rare disorders in honor of her beautiful daughter Mabel. Mabel is one week older than Ethan. She is so cute!

We had so much fun visiting and talking about things that only "dragon moms" understand. [Please read previous post for explanation]. In the few months that we've known each other she has already become a dear friend to me, and is a beloved sister in Christ. I am so fortunate to have someone in my area as well as two amazing women (Mel and Vicky) who are just a phone call away that love the Lord. We know that God has an amazing plan for our extra special little ones and for us and that He loves our kids even more than we do (which is REALLY hard to imagine). I thank the Lord for bringing these women into my life. I will admit that I sure wish it had been under different circumstances, but.... they are a true blessing to me.

Here are some pictures from our playdate with Mabel.




October 17, 2011

I am a Dragon Mom....

You might wonder what it is like being a mom or dad parenting a child with a fatal prognosis. This mom shares her views parenting her son with Tay-Sachs Disease. I think that her thoughts echo most "Dragon Moms."

"Notes From a Dragon Mom"

October 12, 2011

The wait is over, well sorta....

The Cystadane (betaine) arrived this afternoon. Ethan will begin taking the medicine in the morning. Please pray for us - we are taking a huge leap of faith for Ethan and the future of all kids with PBD. Ethan is one of the first kids with PBD to take this medicine, we aren't sure that it will help, but they don't think it will hurt. It is scary to be one of the first.....

October 11, 2011

Waiting...

We are currently playing a bit of a waiting game...

This morning I woke Ethan up early and put him in the car, PJs and all, and headed to Carle Clinic in Urbana. Ethan had to have baseline blood work done so that he can begin the Cystadane (betaine) medicine when in arrives in the mail. The test were "fasting" tests, so he had to wait to eat until after the blood draw. I hate blood draws, especially fasting ones because it can be so hard to find his little veins. They did have to stick him twice this morning, but he was a real trooper. He always is. He has been through so much in his 14 months.

So now we are waiting for the medicine to arrive. Please don't be fooled, Cystadane is not a cure to PBD. Actually, they aren't even sure if it will "work" in kids with PBD. It has only been tested in the lab on skin fibroblast cells. So, Ethan is one of the first PBD patients to take the medicine. This scares me some.... but what scares me more is what if it does help and we wait until we aren't the first and then wish we hadn't because it could have been more helpful if he would have begun taking the medicine earlier. Here is a link to the article that was published that shows evidence that betaine may be beneficial to children with peroxisomal disorders: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851769/

So, now we wait. Wait until the medicine arrives and then wait to see if it helps. What are we expecting it to do? Well, the hope is the Cystadane will increase Ethan's peroxisome function and because of increased peroxisome function his very long chain fatty acids (VLCFAs) will lower. After taking the medicine for 4 weeks Ethan will have another blood draw, which we can do here in town, just to check to make sure that his liver functions aren't being impacted. Then in six months they will do a full repeat of the baseline tests (VLCFAs, plasmagens and liver function) to see if there has been any change.

If there are positive changes, what might this mean? We aren't sure. We'll just have to wait and see.... Part of the "problem" is that we have no idea what the course of Ethan's disorder will be. Every child that has PBD is a unique individual and the disorder impacts each child in a different way. So, with Ethan being so young, there is no way of really knowing how much the treatment might help, if that makes any sense.

In addition to waiting for Ethan to begin the Cystadane treament we are waiting and counting the days until we get to move into our "new" home. We close on our current house this Friday! Then we are off to Jeff's parents' house for several weeks while we wait to be able to close on our new home. We are so excited about our new home. It is a ranch with very few stairs to navigate. The front has actually already been ramped for a wheelchair and the only other step in the house is a small step down onto the screened-in porch. The house also has a playroom/office right off of the living room, which is great! I am looking forward to having a place for all of Ethan's toys and therapeutic equipment. The house needs a little bit of work and it may take a little time to make it feel like home, but we are very excited. Waiting is hard though... we just want to get the keys and start working on making it ours... We are very blessed though that our house sold so quickly and that we have a loving family that will take us in for a bit.

October 10, 2011

Progress...

Ethan's ability to sit without support has continue to improve over the last few months. He is now trying to transition out of sitting by himself. Usually this simply means that he falls over, but he has been getting a little bit more control recently. I caught this on video this morning:

October 8, 2011

Black Bart's Pumpkin Patch

Today we headed to the pumpkin patch with friends from our Special Connections group. Special Connections is a playgroup sponsored by Decatur's Baby TALK designed specifically for parents and their children who have special needs (birth to age 5). I am proud to say that I was a driving force behind getting the group started and feel blessed to be part of an amazing group.

Ethan's two buddies - Joshua and Mason's families joined us for the grand adventure!