Day 7: Cousins

Cousins are so wonderful. They play with each other and create wonderful childhood memories together. Gabe and Isaac are so lucky to have 5 first cousins and lots of second cousins. Gabe always get so excited to play with his cousins and I can tell Isaac does too. They are all so sweet and accepting of Isaac and love him for who he is.

They teach him things about the world.

They are buddies.

They give him hugs.

They hang out with him.

They give him genuine love.

Today I pray for all of our sweet cousins. I pray for health, happiness and blessings in their lives. I am so thankful for the love and friendship that they give our little boys.

Day 6: Courtney

One day, while checking facebook I was struck by a prayer request so I followed the link. Courtney, a young, single mother was requesting prayers her son young son, Tripp. I went to the blog and from the moment I began reading, I couldn't stop praying and thinking about this family. I can not even begin to share this story, because it is heart wrenching. You will be moved by reading this testimony of a very special mother's unwavering love and courage. Please read it for yourself.

http://randycourtneytripproth.blogspot.com/

Please pray for Courtney, her precious angel, Tripp and all of the other families that are battling Junctional Epidermolysis Bullosa. May God's loving arms comfort them today and always.

I know that Tripp's life was very short. It was too short. I know he has made a huge impact on my life and many, many more. I also know he taught my three year old son a very important lesson. The day I went to the blog, I couldn't stop reading. Gabe, my son came over to me and looked at the computer. At first, I wanted to shield him from the pictures. I wasn't sure how I would answer the questions. But he saw anyway and asked who the boy was. As tears rolled down my face I told him his name was Tripp and that he needed lots of prayers. Gabe nodded and return to play. Later that night, while we recited our standard "Now I lay me down to sleep" prayer, Gabe stopped and said, "we have to pray for that boy. We need to pray for his face to get better." My heart stopped for a second and tears welled in my eyes. We prayed for Tripp. We prayed for his face to get better and his body to heal. At that moment, Gabe learned how to truly pray. Thank you Tripp, for touching our lives and teaching us how to pray.

Day 5: Macey

Some people we know for a long time. In fact, you have known them so long and you met them at such a young age that you don't remember meeting them. Stacey has been my sister's best friend since the day they met in kindergarten. That means that I met Stacey when I was 2. I definitely don't remember meeting her, but I always remember following her and my sister, Amy around when they were hanging out. I would try to be just like them. I wanted to know everything they were doing and I basically idolized Amy and Stacey. I loved going to their games and watching them cheer. Stacey was even my cheerleading coach when I was in high school.

Stacey is this tiny, bubbly, smiling lady. When she had a daughter, it was no surprise that her little girl was as cute as a button just like Stacey. Every time that I have met Macey, I think I am meeting a miniature Stacey. Stacey and Macey are both little, bubbly people. They are little, but mighty. They have had to be fighters.

3 years ago, just after Macey's 6th birthday, Stacey found Macey screaming and limp early one morning. Her pediatrician believed it was a one-time seizure, but ordered and EEG just to be safe. Macey's test results were not what they expected. Macey had something called Benign Focal Epilepsy. This form of epilepsy comes in the form of infrequent seizures at night and usually they disappear by age 16. In the months to follow, she began having more seizures. Her condition appeared to be getting worse and it was affecting her memory.

After more testing, they discovered that Macey had a very rare form of epilepsy Macey called ESES (Electrical Status Epilepticus During Sleep). This causes her brain to never slow down and get into a deep sleep. It prevents information from going from her short term memory to her long term memory. This rare form of epilepsy affects less than 1% of the population of children with childhood epilepsy.

The last 3 years have been a roller coaster for Stacey, Macey and their family. They have spent many weeks at the Ronald McDonald House, away from family so that Macey can receive the best care at the Cleveland Clinic. Macey has endured so much testing and Stacey has been a rock right by her daughter's side.

Medication was helping Macey's condition, but in February an EEG showed 50% of her sleep was being affected by seizures. They soon began noticing it affected Macey's memory again. Today and throughout this week, Macey is back at the hospital for more testing and medication change.

Macey is a strong little girl. She has never once asked, "why me?" She does not feel sorry for herself, rather she walks with a smile and goes with the flow. She endures testing all with a smile on her face.

Please pray for this beautiful little girl, her mom and their family. Today I pray for Macey as she undergoes testing. I pray for her to be strong. I pray for complete healing for Macey and for results that show great improvement. I pray for Stacey to have strength and patience while she awaits results. I pray for Macey's brother and Dad.

Here is Macey and her big brother, Brent.

Day 4: Angie

When I was pregnant, one of my good friends told me about a song called, "I will carry you", by Selah. I listened to it, and it was so sad, but also so touching. A book was also written, called, "I will carry you" by Angie Smith. Her husband is in the band, Selah. She wrote a book and her husband's band wrote a song in memory of their daughter, Audrey Caroline.

Midway through her pregnancy Angie and Todd found out their daughter would likely not survive birth and if she did, her life on earth would be very short. Even though her daughter only lived a few hours, she had a huge impact on many lives.

Today, I pray for Angie Smith, her husband and all of the mama's and papa's that had to say good-bye to their babies far too soon. I pray for all of their little angels.

Angie has an inspirational blog, Bring the Rain at wwww.angiesmithonline.com

Day 3: Our other little buddy Carter

We have two little buddies named Carter. Check out this little blue-eyed boy. His eyes will steal your heart.

Carter has OEIS and prune belly syndrome. He recently had surgery on his feet. He's been getting around with two big casts. Those casts look heavy but he is determined to not let those things stop him.

Next weekend, June 2, his mom and family are in the March for Dimes walk to honor her sweet little boy. Here is the information if you would like to support them next weekend in Montgomery, Alabama.
http://www.marchforbabies.org/s_team_page.asp?SeId=1870635&si=5DE08211-9D5F-4096-B018-AED2221B040C# — with Alisha Seamon and 13 others.

March for Babies - View Team Page For Carter's Love
www.marchforbabies.org
I was a healthy person even through pregnancy, and still my son, Carter, was born with a series of rare birth defects known as OEIS. Every day, thousands of babies are born too soon, too small and often very sick. Our team is walking in March for Babies because we want to do something about this....

To read more about Carter and his adventures check out his cute blog at www.carterslove.blogspot.com



Today I send prayers to Carter and his sweet family. I pray that his feet heal quickly and that he is healthy throughout his entire body.

Day 2: Carter

Meet Carter; One of the cutest little toddlers.

I was introduced to Carter when I needed to find him most. I was fervently searching the web for answers. What is OEIS complex? Are there any babies surviving with this condition? If so, what is their life like? Are they happy?

In my search, I found this blog, this site http://littlegiftcarter.blogspot.com

In this blog, I found Carter. In him I saw, the greatest little baby smile, happiness, a beautiful little baby, courage and HOPE. Carter looked so healthy and happy. When I saw his little pictures, I would have no idea that he had endured serious surgeries. I needed to put a face to OEIS so that I could have hope for my unborn child. Carter was a little angel, when I needed to find him most.

I was so lucky that Megan, his mom wrote me back instantly when I told her our child may be born with the same serious and complicated condition that her son had. Megan, also a Neonatal Intensive Care Nurse gave me great motherly and nursing advice. She urged us to deliver Isaac where we felt confident in the doctors' expertise. We listened to her and went to Cincinnati for a second opinion and our prayers were answered in finding great doctors.

Carter is 21 months old. His smile is contagious! He is beginning to walk! He reminds me of a steady train, chugging along the tracks pushing through rough terrain. He has had a difficult year. He has had surgeries and been away from home. He and his amazing parents have been in Baltimore and Cincinnati for months at a time(which is quite far from their home), so that Carter could get the best care. He is finally home!

Please pray for Carter. Pray that he stays at home, healthy and happy. Pray that he continues to walk and run! Pray that his bowels work and that he will be able to eat all that he wants. His parents faith is testament of unconditional love and belief in God's plan. Their strength is amazing. Please check out Carter's blog so that you can be touched too, by Carter and his awesome parents, Megan and Brandon.

Day 1: Isaac's Love Day and prayers for Baby Simon

Last May was a very difficult month and I relied on the love of my family and friends for strength and hope. When I had hit a low, my mom and mother in law, helped me up. My mother in law thought of the idea on May 25th to declare it as "Isaac's Love Day." We all asked for prayers, love and thoughts of healing to be sent to Isaac. It was powerful for me to read and hear everyone's outpouring of love for my Isaac. There was so much love surrounding him and I can tell that love continues.

Today is our first day of prayers. Today I pray for Isaac and another special little boy named Simon.

I pray that Isaac always feel love around him. I pray he has strength and courage to fight challenges in his everyday life and during surgeries. I pray he is always happy. I pray for miracles of healing upon his body, especially his spinal cord, ventricles, bladder and bowels. I pray for miracles that with God's Will, He will make it possible that one day, Isaac's legs will move and walk.

Yesterday, one of my closest friends emailed me about an adorable new little baby boy named Simon. He is the son of her sorority sister. Baby Simon was born with Esophageal Atresia. This means his esophagus did not form properly. He is currently in the NICU and will be having surgery today. I pray for healing for Simon and for a successful surgery. I pray he will soon be able to go home from the hospital. I pray for his parents, Molly and Clint.

Check out this sweet little boy at
http://babysimon2012.blogspot.com/

30 days of prayer

Every night I nurse Isaac to sleep in his quiet room. The sound of his lullaby music is so relaxing. I love that time in my day. It is sacred. It is my time to relax, pray and catch upon reading favorite blogs.

I have never been much of a blog reader, but since Isaac was born, I have become more interested in keeping up with blogs. I read about all of Isaac's little friends. It is nice to know that one day, Isaac might meet some of those little friends. He will know that there are others that truly know what he is going through. He has already met one of those little friends, Trennor. I was so happy for him to meet Trennor, but more so, I was happy that I got to meet Trennor's mom, Megan. Talking with her helped me to know that I had someone that truly could relate to the challenges, joys, fears and hopes that I have as a mother in this journey.

Before Isaac was born, I heard about rare conditions and diseases, but I never realized the impact they may have on a family, both good and bad. We are impacted by his OEIS. It has it's challenges and worries for sure, but it also has it's blessings. We have gotten to know many great people, doctors, therapists. Since Isaac's birth, I have become more aware of other situations where people are in need of prayer, support and love for the challenges their children or loved ones face. I don't want to say before I had Isaac that I overlooked or didn't pray for someone that needed it. I truly felt for families but I couldn't fathom what they were going through and I didn't want to fathom that. It made me hurt to think about what they were going through. My busy life would continue and I forgot about the needs of others. Today, when I hear or read about someone asking for prayers for their children they love, I get it. Or at least I get it a little better. I understand their desperation and hope. I had never asked for prayers for myself before I found out about Isaac's diagnosis, but once I heard, I begged everyone I knew to pray for him. It was the only way I could hold onto hope. Now, when I hear about someone, particularly children that are going through a difficult diagnosis it catches my attention. I want to read about them. I want to learn more. I want to help them. I want to pray for them. Now, I remember those children and I remember to check back and read their blogs or ask their parents to see how they are doing. I check back because I want to know that their journeys are going well. I want to witness miracles.

Prayer is powerful.

Positive thoughts make positive impacts.

So, starting May 25th, for 30 days, I will be having 30 days of prayer here on Isaac's Inspiration. Each day I will share with you a child or family that could use a few extra prayers. It doesn't have to be long or time consuming, but that one little thought or prayer you send may just may a huge impact for someone that needs it. I have not met most of these children, but I have come across their story and all of their stories touch my heart.

If you know a child or family in need of prayer, please send me an email @ hinkel.jill@gmail.com. I am compiling my list now!

Happy Son's Day

Today we celebrated Mother's Day at my parents house. It was nice to be home with my mom, my grandma, my dad, Dan and my two little boys. Today when I woke up, Gabe (Isaac's big brother) greeted me by telling me, "Dear Mommy. You are my mommy." It was better than any Mother's Day wish he could have given me. I thought about those words today. Yep, I am Gabe's mommy. And I am Isaac's mommy. I have two beautiful son's and I am so lucky. Last Mother's Day was pretty awful. We didn't really know what was going on with Isaac's diagnosis or prognosis and we didn't know if he would be here. I remember numbingly eating a nice brunch at a local restaurant near our house but all I could think about was the fear I had for my son's future. To say this Mother's Day was better than last year's is an understatement. Today I was full of gratitude and I tell my sons, "Dear Gabe and Isaac. You are my sons, Happy Son's day."

Personality

Isaac is now 10 months old and his little personality is blossoming!

He is finally getting some teeth and he has started to show his desire for independence. In the last week, Isaac has slowly popped through 3 teeth! I should mention that these are his first three teeth and it has been unpleasant for him and us all. Last weekend, we went to Grammy and Papa's in Cincinnati and watched Daddy play basketball in his high school alumni tournament. (Which I have to say, it felt so nice to go to Cincinnati and have no medical appointments to go to!). We had a great time, and Isaac was cute, but his teeth got the best of him and he only wanted to be in my arms.... for most of the day, and well, ALL night. For three nights in a row, Isaac would only sleep if he was in my arms. And to boot, he preferred if this was nursing in my arms, ALL night. In hindsight I think the poor kid may have been getting teeth and having a growth spurt! We had fun playing at Grammy and Papa's and Isaac showed off his new wheels. He is obviously so little and still learning and understanding what his chair is, but his showed off for Papa and he actually moved his chair about an inch on his own! Our little Bugaboo will get the hang of it before we know it!

Isaac has always really seemed to like his food but he has been quite vocal lately about his food likes and dislikes. It worries me a little bit, but I think he has decided that it's not the food he doesn't like... it's that he doesn't want anyone feeding him! Mr. Independent! He doesn't want pureed baby foods. He wants big people food and he wants to feed himself! Yesterday, he started turning his head away from his baby food and whining until I gave him something like cheerios, blueberries or the tasty little Baby Mum Mum rice cake things. Basically, he wanted anything he could pick up himself. The other day, he totally whined when I handed him cheerios, but when I gave him some baby puffs he picked those out of the pile of cheerios....perhaps the start of a sweet tooth. I am figuring out new things that he can try and slowly introducing more foods.

Isaac really loves to play. He will belly laugh when he watches Gabe run around him and gets angry when he is by himself. The other day I ran upstairs to get something and when I came down Gabe was pushing Isaac in his ZipZac Chair around the house, pretty fast. I was worried that Isaac was upset, but when I looked, he was actually giggling away. Most of the time now, he loves this new game with Gabe.

He also loves doing anything Gabe does, like riding in the monster size shopping carts at Target.

Isaac has recently learned how to play "pass". He sits at his little desk and will roll the ball back and forth with us. Here's his little head peering over the ball!

Isaac enjoys reading his little book.....

He says yes to swinging...

and is undecided about slides.

It's really fun to see him grow into his own little being. Before Isaac was born my doctor shared this simple wisdom, "Isaac will be Isaac." At the time, it didn't bring me much comfort. It was easy to say, but what did that mean? Well, now I know. Isaac is Isaac and I love that he is!