Breathe Kelcie.

I've been so busy with life that I haven't had anytime to post. Time is definitely catching up to me and most days I forget to even brush my hair. Throw it in a pony and go. Seems to be my routine lately. 

Let's see...Eli has been doing amazing. Therapy once a week now along with a few other appointments. His extensive hearing test is Thursday and we can finally have a clearer answer to what exactly he is developmentally behind in. This hearing loss could have a major impact on how we move forward with his therapies. 

He is eating very well. Baby food 1-2 times a day with 6-8oz bottles all day long. He is a hungry growing boy. Still on allecare formula but will be switching to vitamin d milk for good! I'm excited to have a normal smelling baby instead of gross formula permeating from his skin. IICK. I HATE IT! 

We now have 4 teeth. Finally! These top 2 are rough. Eli is struggling but I am glad they finally came! He is going to be so dang cute :)

Most days I can get by with no emotional episodes. Depends on the day. I see newborn babies and just stare. Like I never knew what it was like to have that newborn baby feeling. But I do. I had Lucas. We had an amazing first year with Lucas and now he is 3! Eli, is a different story. I don't expect anyone to fully understand what it's like but parts of me never felt like I was a mom for 5 months. I just watched my baby from a hospital bed and prayed one day I could be half as strong as he was. I try everyday to thank God we are where we are because their are those less fortunate. They have lost children to severe heart defects and never were able to take them home or hold them like I can hold Eli now. I am very grateful, don't get that twisted. 

I just struggle. I struggle with development. Seeing younger kids more developed and bigger and more alert and acting true to age. I want that so bad for Eli. I dread being around other kiddos solely on comparison comments. I cry everytime I see a Facebook post of other friends babies wanting to crawl or sitting up that were born months, many months after Eli. I know...I know. You don't have to tell me. Eli has been through a lot. He's doing awesome for where he is at and how he got here. I KNOW! I try to tell myself that everyday. 

But I struggle. I'm entitled to that. I just wish things were a little easier for eli...

And for Lucas, to be able to have a 1 year old brother who could play and chase eachother around the house. 

And for Danny who has to deal with me and all my emotional and crappy days. 

And for myself. To just be thankful I even have Eli to write about. 

Xoxo 

Rally! Rally!

In our 5 months at CCHMC, your support and generosity was extremely overwhelming. We are so grateful and appreciative of what everyone has done for us and our family. And you still continue to show support for Eli. One of the hardest things during our five months stay was our financial status. I went back to work early and Danny continued work full-time the entire time Eli was in CCHMC. We always feared losing our home, our cars, and our insurance. Your amazing support help to prevent that. 

I posted a few weeks ago about a friend that has a baby with a heart defect. Today she has informed us that she has been let go from her current position. She is officially unemployed at 37 weeks pregnant. Her employer has forced her to take her leave early, as an unpaid status. This is heartbreaking for me. While I was fortunate enough to have time off with both of my children as paid leave, not everyone gets that chance. Sarah has one daughter and baby Chloe on the way. Her medical costs will start piling up and she will start wondering where her next meal will come from. I cannot even fathom what I would do if I did not have the means to get my child food. So this is why I'm posting. 

You all were so generous with your donations and support for Eli, that I'm asking you to match what you donated for baby Eli, please donate for baby Chloe. Baby Chloe has her own page to follow, i've attached the site where you can make donations and follow her page and her upcoming heart surgeries. 

http://www.gofundme.com/8z4jk8

Please just take five minutes-$5 dollars and donate to this precious little baby and her family. This hits very close to home for me knowing this family and what they deserve. They deserve support. 

We went into Eli's situation financially stable and while we never became unstable, it was a very big fear of mine and it still is knowing that his medical bills are piling in. Sarah's family needs our support and a little less fear. 

Thank you for any donation that you can give to her and her family. 

God Bless all of you. 

Kleckner family

Making strides.

I have been thinking about how people stare at Eli, or react to him. I find that at times I have been dissappointed, sad, and suprised. Since Eli's diagnosis, I have made a few friends with similiar challenges and have found those friendships to be strong because of our shared experiences. These people have been supportive in more ways that I need and I am extremely grateful for. This quote (found on pinterest) couldnt be more accurate: 

I am a special needs parent. I have very special needs. I need you to be there for me. I need you to be there for my family. I need you not to pity my child. I need you to teach your children acceptance. I need you to listen when I need to talk. I need you to not judge me. I need you to understand why I dont always call. I need you to be my friend. I am a special needs parent. I have special needs. 

I have had several people come up to me in places asking if eli is ok. The helmet sure does attract attention to those not familiar with the medical field. Then, they question why his eyes are the way that they are. It doesnt really bug me, but that is a pretty curious question. I would do it myself if the roles were reversed. I dont mind people asking becuase it means they are interested. I also dont mind stares if it isnt for super long, and a question follows. 

Many of you on Facebook write me often to encourage me, those that comment on pictures of Eli and say how handsome he is and special, that try to be involved. You dont understand how much I truly love and cherish all of your nice replies. If you love my son, I will love you even more back. 

I am trying to grow thicker skin, but some days I just feel like I have failed Eli. We have a long road ahead of us with many different areas of Eli's development. He is making great strides, and we are very appreciative for that. 

One day at a time, right?!

Pay it forward! Baby Khloe❤️

Yesterday, it was brought to my attention that a friend just recently found out her unborn baby girl has a heart defect. While reading her status update, I found myself remembering that same fateful day one year ago. I couldn't help but get emotional after reading all the comments people were posting. I've been there. I felt exactly how she felt and there was nothing I could do. I couldn't hug her, I couldn't say anything to make her less worried but I can help take off some of the burden a hospital stay will have on a family. 

Her full name is Khloe Lorraine Hettesheimer, expected delivery date is June 6th and she has an AV Canal Defect, (hole in her heart) but they will not get the diagnosis of whether it is a Partial defect or a Complete defect until after birth.

Sarah and her family are expected to be staying in the hospital with baby Khloe for surgery. You all know how helpful all the donations were to help our 5m stay with baby Eli. 

We are asking that you take $10 out of your wallet and buy one gift card. Food, gas, anything will help. I remember getting these very same things in the mail from all of Eli's supporters and just thanking god that someone was so kind enough to do this for our family. What a blessing it was to not have to worry about what meal we were going to eat or how much gas we had to get back and forth to the hospital. 

Please consider helping this family, as you all did for ours. 

All gift cards can be sent to the following address: 

Sarah Hettesheimer 

3115 Urwiler Ave 

Cincinnati, OH 45211

God Bless you all 

Xoxo

Kelcie 

Fundraisers

Over the past year, since finding out about Eli's diagnosis we've had a handful of Fundraisers and one benefit. I wanted to write a post explaining why we do these things and recognize those who have taken the time to organize and support us during this time. 

(If I have forgotten someone please email me and let me know, I did not forget you on purpose, it's been a busy year) 

Tshirts, wristbands, Car decals, ornaments-Kelcie 

Bake sale-Chelsey Richardson 

Flash mob Eli-Alicia Courtney 

Photo shoot-krisandra 

Eli's HLHS journey Benefit-kleckner and Hensley family and many more 

Pampered Chef-Emma Newman 

Zumba for Eli-Jen Clendenning, Lindsay Kinsinger, Ashley Dawson

Lapel elementary-Mrs Sturgeon 

Rummage sale-Knepp & Washmuth family 

Popcorn palace-Kelcie 

Tshirt Donate Life-Booster site  

Lawrenceburg High School Basketball program-Brad Cutter

Donations-many many many people have donated to Eli's fundraising page. We are so appreciative for what you've done in honor of our baby boy. Because of you we have not had to pay for any of Eli's medical needs out of pocket. 

Eli is covered under my insurance through work. He was covered by a secondary insurance Medicaid but in January they dropped Eli due to having too much of this fundraising money in his bank account. They consider this to be an asset to Eli and determined he didn't need medical coverage anymore. Now this coverage picked up anything that my insurance did not cover. So you can imagine how vital this is to our family. For example, 2 of Eli's rejection medications that he well need for the rest of his life, were $1035 for one refill. Eli is on 12 medications. You do the math. We have reapplied for this coverage and are currently waiting for an answer. Until then, we are having to pay for Eli's special formula and things until the coverage can be picked up again. Eli is on a special formula to help him grow grow grow and keep up with his age and curve scale. 

We have also had to have some appointments and medical necessities outside of Eli's transplant. He has vision problems and will need a helmet to correct the shape of his head due to laying immobile for 5 months. Eli's helmet cost over $3600. Because of you, we could pay for that. Without the Fundraisers and benefit, Eli would have to live with a misshapen head and you can only imagine the pain and suffering he would endure later in life. 

Thanks to all of you we were able to pay for this with all of the money that was donated and raised from the above events. We are so very appreciative for what you have done and couldn't have gotten this far without all of your support.

So when you see me posting a new link for Eli, there's a rhyme and a reason to every fundraiser, every donation, goes to help our little boy live his life and keep taking the medications to keep his new heart beating. 

God Bless you all. 

Update. 6 months.

Holy cow. 6 months. Where do I even begin to write all the things going on with Eli and the family. 

Since being discharged from cchmc in December, we spent 10 days at the hotel in downtown Cincinnati until cleared to go home. We had Eli's first Christmas at home together as a family. This was by far one of the most rewarding things to us. If you would have said we would be spending Christmas in our own home back in July, i would have laughed at you. 

Eli had his second biopsy December 26. All results came back 0 which is fantastic. He had some feeding issues shortly after but got himself back on track quickly. 

The new year has brought great hope and excitement for our family. As hard, amazing and memorable 2013 was we are so happy to see it go. Many triumphs and tribulations were experienced and we feel like we overcame so many things. Eli was a blessing. We don't ever want to forget the gift of life was given to us but it also brought a lot of hurt, and sadness and struggle. So 2014 will be our year. The year we celebrate our family as 4. 

I was let go from my position at UC in November. I had just celebrated 6 years. Unfortunately the unit got funding cuts and my position was the first to go. Call it what you may but I was offered a position down the hall in our clinic. I will be there starting in February 4 days a week and continuing to work for the university. I am excited to remain with these people. They have been there for me through everything. From marriages to babies and now all of Eli's medical issues. I am so blessed. 

Lucas will be turning 3 in March. Yeah, I just threw up a little bit in my mouth. How is this even possible. He's our baby! Growing so fast and learning so much. He's been a huge trooper through all of this with Eli and I am so proud of him. He has suffered so much in this journey. Being away from his parents for days on days and shuffled between grandparents is not fair. Everyday I pray that Lucas will one day understand why we had to do what we did. He's an amazing big Brother and I can't wait to have them grow up and be best friends. 

Danny and I have worked out a schedule so that when I return to work we will not have to take the boys into any daycare or pay for childcare. I will work 7-3:30 with Wednesday off for Eli's appointments and Danny will work 4-10. I will pick both boys up from him on my way home from work. We are hoping this schedule will work until Eli can be cared for outside of Danny and myself. One day.

So that's what's going on over here. Enjoying life at home as a family of 4, finally! 

2014 DREAMS.

No resolutions. Just dreams. Dreams don't have to be met. You wish for dreams to come true, so make them. Resolutions sound too much like work. Who wants to work on getting skinny. Dream of being skinny then do it. 

-Maintain a healthy diet. Stop being suckered into just not eating certain foods or drinking certain beverages. Find the right one. Stick it out. 

-Go on a family vacation. Anywhere. Even if it is just a state away. 

-Run a marathon. 

-Grow out your hair. 

-Pay it forward. So many of you have done so much good for my family that I cannot wait to help some other family in need this year. 

-Find a way to make more money. A third income wouldn't hurt right?! 

-Say I love you more. 

-Volunteer once a month somewhere. 

-Get back into church. 

-Pay an extra car payment on both vehicles. 

-Confidence in whatever you do. Start believing you are worth it.