The Prayer

"I pray you'll be our eyes and watch us where we go.

And help us to be wise in times when we don't know.
Let this be our prayer, when we lose our way.
Lead us to a place, guide us with your grace.
Give us faith so we'll be safe." ~ Celine Dion
 

The words of one of my favorite Christmas time songs. Wow does that song have different meaning to me in all of the years I've been listening to it. In a season that makes you think of the things you are thankful for, this year seems different for me than any other year. We sure have a lot to be thankful for. I can’t even believe that it has been a year since Kellan was born. I’ve been thinking a lot about that time lately as his 1st birthday approaches. And that’s where I’ll start…..  

It didn't go as I expected, it wasn’t what I had hoped….the joyful first cry you wait to hear didn't come from my sweet boy. The idea of letting my newborn lay with me in his first few minutes of life….the moment I had been dreaming of for months, ok, probably years wasn’t happening. I am a planner, that was my plan and in an instance my plan was changed. Our nameless baby wasn’t making any noise at all. The plan of naming our baby boy once we saw him was now just a thought, another one of my plans that changed quickly.

It seemed surreal listening to the nurses looking over him calling the NICU in a panic. As the NICU nurse arrived, she handed me my baby and stood over me saying, “You can hold him for a couple of minutes and then we need to take him down to the NICU.” What? No? This wasn’t in my plan. As Brett and I sat there staring at our baby, his sweet yet swollen eyes staring back at us barely open, I couldn’t believe this little miracle was finally here. At that moment nothing else mattered in the world, not even the unexpected nurse standing there anxiously waiting to take him.

I had just met the most amazing little man. All my hopes of those first few minutes after his birth had changed, but it didn’t matter. We finally had our little miracle. I was told I could see him when I got feeling back in my legs….4 hours later, I was finally wheeled to see my baby. Thankful I have spent hours in the NICU with my nieces, Maeve & Maryn, I knew what to expect.  

I didn't for once that night think poor me or why doesn't he get to sleep with us or why is this happening this way. All I cared about was that he was safe and being watched by nurses and doctors. I just wanted him to be ok. Little did I know what his life was going to look like at that point. Little did I know how much that feeling of just wanting him to be ok and doing whatever it took to make that happen was really going to mean. I did know one thing for sure, I loved that little man that I only got to hold for a mere minute more than life itself and I'd do anything for him.

As this year has gone by, I have had to learn that hopes and dreams do have to change. A pretty hard concept to comprehend until you are forced to do it yourself. I will never forget that April day sitting in the Genetics Doctor's office with my sister, Brett, and my little baby snuggled in my arms as they slapped (or so it felt) the paper down with his diagnosis and the list of things to expect. My little angel, too perfect for words and my world just turned completely upside down. I never want to go through a day like that again.

But here we are, about to celebrate our baby's first birthday. And though that day it felt like the world had crashed down on me, never in my best and greatest hopes and dreams did I imagine the happiness that Kellan would bring us. It hasn't been easy, some days have been rough to put it mildly, we have spent far more hours at Children's Hospital than anyone should in a lifetime, but he is Kellan. Perfect in our eyes in every way.

He has shown us what true love and happiness is every single day since he entered this world, regardless of what we have to put him through that day. His smile will light up a room and like my best friend Shay just said to me, "He [Kellan] only gets cuter when you actually meet him." I couldn't agree more!

I will take this opportunity to thank everyone that has shown us support in the past year. I am amazed at the people that reached out to me on different occasions to let me know they think about us, pray for us, and love Kellan even if they have never met him. We are thankful for so many reasons. Kellan has taught me some invaluable lessons and I owe him the world for that.

We've had a busy December squeaking in last appointments for the year. Here's where we were at....

Opthamology – We went it for what will be his routine check up each year to confirm that no cataracts have formed since he is at high risk for them because of his deletion. We’ve always noticed a twitch in his one droopy eye, but never thought anything of it. The appointment was heartbreaking. They had to patch his good eye to see what he would do when his droopy eye was the only one to see. He of course didn’t like the patch, but it was clear he couldn’t see well out of it. The twitch increased dramatically and he looked around acting as if he was blind. I felt terrible for him. The treatment for now is that he will be wearing a patch for 1-2 hours per day for the next 2 months. Our hopes is that making his droopy eye work harder will strengthen it and avoid having to get glasses.

Of course, he was the hit at the appointment. There were 2 nurses working that day, the first nurse asked if she could hold him only because she thought he was so cute. Later in the waiting room (we were there 2 hours), I heard her whispering to the other nurse, “that baby is just the sweetest, he has the best disposition.” That made me smile when I felt like crying!

GI - Oh happy mamma after the said eye appointment. Our "little" guy is getting big! For the first time ever, he is in the 10th percentile, weighing in at 17lbs 14oz. SO exciting! This news means no feeding tube for at least another 4 months!

Upcoming, we see the allergy clinic and sleep clinic. To say I am excited and thrilled to hear what the sleep clinic has to say would be an understatement. After 11 months of interrupted sleep every night, I am so very excited to see if we can figure out something for him. I'll have updates on those 2 appointments for my next blog.

Until then, I hope you and the ones that make you smile have a great Christmas.

 

You Are My Sunshine

You are my sunshine, that is for sure. As I rocked my little baby to sleep yesterday after Kellan's first zoo trip, I thought for the millionth time how this little man in my arms never fusses or cries. As I walked around the zoo hearing kids crying or whining, I reminded myself how lucky we are that Kellan has a smile on his face all day everyday.

 

Here's our little sunshine dressed up for Halloween. And yes, he is on 2 feet! This trick doesn't get old! He just realized those little legs are able to stand on and wow does it make mom happy when he does it.

 

 

Kellan has made some pretty huge strides in his motor development the past month. We set a goal for him to be rolling over by Halloween, he beat his goal! He needs to be pretty motivated to actually roll, but if you find the right toy, water bottle, cell phone, or remote control....he rolls right over. We are also working a lot on his sitting, he's pretty shakey at it but he's holding himself upright for longer periods of time every day. The therapist said to be careful how quickly we want him to learn to sit up. Being on his tummy and navigating around that way is still super important.

 

Here's Kellan showing off his sitting!   

 

These days, his fingers or whatever is in reach doesn't leave his mouth. He is cutting a 3rd bottom tooth and we think about 5 top teeth. The first top tooth to poke through is on the side, a little baby vampire until those others decide to poke through. I can't even imagine what that feels like in his mouth, but of course he's not phased. We have also started Speech Therapy to start with some communication skills for him. When the Therapist evaluated him and said he was on the same track of a 3 month old, it was a hard pill for me to swallow. Brett and I are working hard to learn sign language as that will be his main way of communication for quite some time. We had him at the Doctor last week because he was (still is) so congested....in the 3 weeks since he had been there last, he had gained A pound. You can imagine the excitement we had in the room that day. He's now weighing in at 17 pounds 4 ounces....as we like to say, "Big, Big Boy!" And yes, we've learned that in sign language :)

 

Here is Kellan on October 29th, 10 months old. Not really sure how that happened so fast. 

 

I feel better about my mom skills now that I have taken Kellan to the zoo. Though, he was far more interested in the people walking around than some animal that we would try to show him. Not surprised in the least with our social little butterfly. He sure does love being around people.



A week from today, Brett and I leave for Mexico to celebrate our 3 year wedding anniversary. I must say, I'm pretty excited. For the palm trees, the sun, the pool, the ocean, the margaritas....well, that all sounds great, but what sounds the most exciting....6 nights of uninterrupted sleep! My mom and dad are so graciously taking our little bug while we are gone. I have a feeling Kellan, Poppy and Grandma will be taking quite a few naps together during the day.

 

That's my update for the past month, Adios! 



The Driver's Seat

I'd be remissed to not start with the amazing event that took place yesterday. When I set up our team back in June for Al's Run, I had hopes of getting at least 10 people to join the team so that we could have our own team t-shirt. $1000 was my fundraising goal. I never imagined the support and love we would find in people. And I'm not just talking close friends or family. I had grade school friends, high school friends, people I went to college with, friends of friends and the list goes on of people that made a contribution to Kellan's team. Family and neighbors that raised hundreds of dollars just on their own. The crazy world of Facebook brought out the very best in people. People I probably wouldn't still be in touch with if it wasn't for that little website amazed me almost daily with donations.

By the end of the day yesterday, Team Kellan raised...drum roll please....TEN THOUSAND DOLLARS. Incredible. Check out Team Kellan right before the walk!

 

It gives me goosebumps to see how many supporters Kellan has that were there with us and the several others that were with us in spirit that day. I feel like a broken record, but thank you to everyone that was somehow a part of the day. Brett and I have done Al's for several years now. As I walked last year pregnant with Kellan, I never imagined that we'd be participating this year in honor of our little bug, but I am proud. Of course Kellan was the little trooper he always is.

Kellan is such a big deal, he had a mascot. Yep, this little bug made Kellan feel like he was at the opening ceremonies of the Olympics! Carried the entire way by two great friends Shay and Amy, who were also the creators of him. Thank you both!

A picture of our little family...

In other news, we had Kellan's follow up appointment to decide on a feeding tube. Truth be told, after the initial shock wore off that a feeding tube is something that may be in Kellan's future, Brett and I actually started liking the idea of him having one. Kellan is still such a stinker at night with waking up. We struggle to let him cry it out and leave him in his bed because we manage to sneak in a few extra ounces when he does wake up. We also realize a tube would take away the anxious feeling we get every night when it is getting close to his bed time and he is far behind on the amount of food he needs for the day. All that being said, even though Kellan rarely eats the amount of ounces he is supposed to, he managed to gain the exact amount of weight he was supposed to in the 6 weeks since we had seen Dr. Noe. YAY Kellan! We are following up again in December and Dr. Noe did say there is still a pretty good chance he will need one eventually. Let's hope the little man continues to grow and eat on his own!

We also met with a Speech Therapist who specializes in feeding. She didn't have any different recommendations on how to feed him a bottle, but she gave us some great ideas for getting him to eat cereal better. He's been doing great with that and I'm confident is one of the main reasons for our little guy to finally actually have some chubby baby thighs. And, depending how he is looking you may even see a double chin once and a while. :)

There are quite a few other changes happening in Kellan's life too. We recently made a switch with his physical therapist and man do we love her. In the 3 weeks he has seen her, I can tell a drastic difference in how strong he feels. We continue to work on him rolling over from his back to his stomach...he is SO close. Our goal is to have him doing it by Halloween. I know he can do it! We are also working very hard on getting him to sit up and build his core muscles. He is doing a great job! Chris, the therapist is awesome with Kellan. She sings to him, has the best old school toys for him to play with and kisses and loves him like she has known him forever! We are lucky to have found her.

I also was able to negotiate with my great and understanding employer to work from home one day a week. This past week was my first week with the new schedule. It was a little hectic trying to answer emails plus we had an appointment at Children's that day, but knowing I get to be with him a whole extra day is a great feeling. This week we are also starting Kellan at a new day care. The structure they can provide and the kids that will surround him the days he is there makes us very excited to see what Kellan will show us he can learn next.

And lastly, but not certainly not least, I wanted to thank a great group of women I have found recently. As I was perusing the Al's Run website watching Kellan on the leader board, I found a new team that snuck on to the leader board with us. As I did with all the others, I was quick to read the story to find out what special little kid was going to be honored at Al's run along with Kellan. As I sat reading her story, it felt as though I was reading my own life. An adorable little girl, Lydia with one of the strongest moms I've ever met, Sally. I found Sally on Facebook, added her as a friend, she instantly invited me to come out for dinner and drinks with a group of Special Needs moms and I jumped at the opportunity. These women are amazing. They welcomed me with open arms and it was the greatest feeling in the world. The support I felt from them was different than any I have received since Kellan's diagnosis. These women live it everyday and they make it look easy. Thank you to each and everyone one of you that I met and am now connected with. You are an inspiration to me and the love and support I feel from you even after meeting one night is the best.

After that night, I also found a mom in California that has a little girl that is 3.5 years old that has almost the exact deletion as Kellan. After connecting with her, I gained some hope when I learned about her beautiful little girl, Addi. Addi learned to walk at 2 and started talking like crazy once she got to school when she turned 3. The best piece of advice I got that I already knew but needed the reminder from someone that lives in the shoes was to not compare Kellan to anyone. Kellan is Kellan. Though I haven't met Addi's mom, I can tell her strenght in just talking over email. Thank you Cristian for finding me!

Well, I think I am now up to date. One last picture of our little man, chilling in the drivers seat. Such a fitting place for him to be :)

A Few Bumps In The Road

Well, to start out on a positive note, Kellan got his first tooth within the last month, gained a pound (now weighing in at 14lbs 10oz!) since his tube surgery 3 weeks ago and continues to be a very happy boy.

We just spent a week up north with the Daiker Family in St. Germain. A week relaxing at the lake was just what Brett and I needed. It was also great to help Kellan get on a better schedule. He started sleeping 12 hours a night every night that we were there, which meant more beergaritas for mom! My mom always told me to go outside and get some fresh air when I was little, I finally understand why! Kellan was a trooper. We spent every day and night at the beach, in the lake, on the boat, by the fire and he came right along, behaving like the little angel he always is. He loves watching his cousins and the chaos that comes along with them. We are very excited that next year he will have one more cousin to become buddies with, my brother and his wife, Mara are expecting baby #2 in January!

As for the bumps in the road….

Kellan’s tube surgery didn’t have the results we were hoping for. He was the best baby the morning of the surgery, sleeping the entire way to the hospital and quickly becoming a nurse favorite. Without being able to eat after 1:30am the morning of the surgery, I thought he was going to be super fussy. If they weren’t running late, he would have made it the entire time with a smile on his face, but the extra ½ hour he had to wait got to be a little long. We left him at the operating room door crying, it was pretty sad. They didn’t find any fluid as they were hoping to find. Kellan has moderate hearing loss in his left ear and from my understanding the nerve in his ear is “mis-firing” essentially not translating sound to his brain. Check out little Mr. Man laying on his dad’s lap in his hospital gown…of course grabbing for the phone.

Thursday we had a follow up appointment with the GI doc at Children’s. We got some more news that was hard to hear….there is a chance Kellan may need a feeding tube to help him get the nutrition he needs. We always knew it was a possibility, but we continue to hope for the best. As Kellan grows and feels heavier we thought for sure he was gaining a good amount of weight. After the appointment, Brett sent me an email that really says it all as to how we are feeling and the attitude we know we have to have to help Kellan. Pretty touching, thank you Brett J

I wasn’t prepared to hear that Dr Noe thinks that our little man would most likely need a feeding tube, and my initial feelings were of sadness and fear. Even though I had heard Dr B tell us that it maybe something that Kellan may have to have, I didn’t want to believe him. I called and talked to my mom on my way to my first appt, and I told her that I was so impressed and encouraged by your strength. When you told me by the elevators that we need to do whatever we can to give Kellan the best opportunity to grow and be strong you were 100% right. You weren’t scared, or indecisive, but strong and confident in knowing that we need to take on every challenge with him head on to do what’s best for him. You helped me be stronger today.

My mom asked me what I thought of all this news, and I told her at first I felt scared. Scared for the unknown. Scared for the idea of having Kellan have a feeding tube, but I don’t feel so scared anymore. I told her that the news was hard to hear, but that it was the reality of one of the many challenges we’ll continue to face head on. That we can’t be scared or afraid of what the future will be for him, but to put him first and do what is best for him. 

You were a great mom today.

One of the most difficult parts of his diagnosis was the amount of unknowns we have and will continue to have throughout his life. As we reach another bump, I’ve realized the unknowns are a good thing. We can take each of them individually in stride and worry about the next thing when it is presented to us. If we knew what his life was going to entail at this point, we’d (well more me) would be constantly worrying about the future. Now, God has given us the situation and taught us to live for the present and take each day as it comes. A huge life lesson that I’m trying to work with.

My good friend, Shay from college posted a note on her Facebook page asking for support for Team Kellan for Al’s Run. I’ll leave you with a line she wrote. Such a simple, but great message. Thank you Shay for being a great friend and supporter J

“He [Kellan] has the sweetest smile and the best personality and really has a lot to teach us all about love and life.”  

Time flies when you're having fun!

I'm not too sure where the time goes, how is my little baby already 6 months old? We had his 6 month appointment this week. Here are his stats: 

                     Weight: 13lbs 8.5oz | 3rd percentile..he's on the charts!!
                      Height: 25.5 inches | 15th percentile

Still a tiny peanut. He will continue to be on his own growth chart and I need to remind myself constantly to not compare him to other babies his age. Very hard to do since I have so many friends that had babies right around when I had Kellan. I do know one thing for sure, he is the happiest, smiley baby I have ever met. It doesn't take much to get him to smile. In the last month, he has started to recognize Brett and I without us having to make any noise. Pretty much the greatest thing in the world. The first 6 months haven't been easy, but him giving us a little love back makes things a whole heck of a lot better. Kellan continues to coo like crazy and he has the best little laugh where his whole face lights up and seems to smile. He has definitely found his hands, making every smile complete with fingers in the mouth! 

He is doing great with physical therapy. His Physical therapist, Lee comes to our house or daycare once every couple weeks. It's unbelievable the neck strength he has gained since being in therapy. Our focus now is making sure he is using both hands. He sure does favor his left hand....maybe he's gonna be a lefty just like his mama. We are also working on building his ab strength. Doing so will help him more on his tummy and prepare him for sitting. We are still waiting for him to roll from his back to his stomach, I like to think he's smarter than we think...why would he want to roll on his tummy? He hates it! Below is a picture of dad and Kellan working out on the ball!

On July 3rd Kellan is having surgery to get tubes in his ears. He has never passed his newborn hearing screen on the left side. When he was first born, the Doctor didn't want to fix the problem when he wasn't gaining weight. Once the genetic diagnosis came out with a chance of deafness where his deletion is, the Doctor wanted to do the surgery "right away." Which meant scheduling 2 months out...kind of frustrating but we are very excited to have the surgery over with. We are hoping it is just fluid as they suspect and he will pass the hearing screen once the fluid is drained. We will find out the results before he even wakes up. Please keep Kellan in your prayers that it is just fluid, the little man has been through enough in his first 6 months, having both ears working would make us so happy!

I also wanted to take this time to thank everyone for the continued kind words, thoughts and prayers. It is the best feeling in the world knowing all the people that care for him and want the best for him. There are days that I still struggle with why this happened to Kellan or daydream about what Kellan's life is going to be like. When I start to go there, I have to remind myself to let go of the control and let be what will be. He is going to be the special, happy boy that he is every day, that much I know for sure and I wouldn't trade that for the world. My sister sent me this very appropriate quote from a picture she saw, it really spoke to me and was a great reminder to me about my attitude on life.

Living Life by Bonnie Mohr ~
Life is not a race - but indeed a journey. Be honest. Work hard. Be choosy. Say "thank you", "I love you" and "great job" to someone each day. Go to church, take time for prayer. The Lord giveth and the Lord taketh. Let your handshake mean more than pen and paper. Love your life and what you've been given, it is not accidental - search for your purpose and do it as best you can. Dreaming does matter. It allows you to become that which you aspire to be. Laugh often. Appreciate the little things in life and enjoy them. Some of the best things really are free. Do not worry, less wrinkles are more becoming. Forgive, it frees the soul. Take time for yourself - plan for longetvity. Recognize the special people you've been blessed to know. Live for today, enjoy the moment.

Lastly, we have created a team for Kellan this year at Al's Run. The run/walk is on September 15th downtown Milwaukee. We are looking to have as many people as possible join Kellan's team to support Children's Hospital. Kellan has spent quite a bit of time there and the place is amazing. Joining our team or supporting our team with a donation would be outstanding. Kellan can't wait to see all the people supporting him and his team t-shirt. Mom can't wait for the emotional beginning of the race. Thanks to everyone from the very bottom of our hearts who gets involved. See below for the link to Kellan's page.

http://events.chw.org/site/TR/Events/General?px=1033386&pg=personal&fr_id=1040

One last picture to leave you with, little man just relaxing!

Even If The Skies Get Rough

I've realized since I posted my first official blog that I'm constantly thinking of things I can write about. So, here goes a bunch of random thoughts!

This past Saturday, we said goodbye to my Grandma one last time by placing her ashes near my Grandpa. My family gathered around the garden area and my mom said the sweetest words to her mom. She thanked her mom for making her the mom she is today. Then she said something that in a time of extreme sadness in my heart, made me feel better. Though she has left us here on earth, her job isn't done. She is now going to be Kellan's angel. What a comforting thought. While I go through the initial shock, it is the best feeling knowing my Grandma is looking over all of us from Heaven.

We've told a lot of people the last few days about our little Kellan. In telling everyone, I've realized I have some pretty amazing people in my life. One person in particular gave some very sound advice. Ironically, she is the person that also inspired me to start a blog. Thanks to Facebook, I have kept in touch with an acquaintance from high school, Annie Hammes (Staebler). She lost her 17 week old baby to SIDS in December 2010 and since then has wrote the most inspiring blog. (http://staeblerfamily.blogspot.com). Read it from the beginning, every post is better than the next.

Anyways, I reached out to her because though our situations are very different, I felt like I've been with her along the way as she grieved the loss of her son and turned to her to help me. She helped me make sense of what I was feeling. I wish I could understand why God has the plans he has for us here. Though I'm lucky in the fact that my little baby boy is still here with us, I am grieving the loss of what we expected and dreamt Kellan would be. By far the hardest thing I've ever had to do in my life. I know we will have new dreams for Kellan and he will show us what he is capable of doing throughout his life, but adjusting those dreams makes me sad, mad and makes me feel really unlucky.

One other friend told me she believes a lot of growing and healing is based on a little bit of faith, love, and pure luck. I love that thought. I know for sure my faith will be strengthened through this, my love has grown even greater for my little bug, and I think we deserve some luck! I've also realized from some advice I got, that this is going to be a difficult adjustment for Brett and I, little Kellan will just keep being the cute, happy baby he is. Thank you Kellan for having the best smile in the world to remind me of this everyday.

Lastly, I received an amazing email from one of my Customers when he learned of what we are going through. He is one of my favorite customers and his thoughts seemed quite profound. Here is my favorite part of his email to me:

"He is such a cute little guy and he is going to continue to be the light of your life and inspiration every day. It is so amazing to see them learn everything for the first time, when it takes months for them to learn to crawl but they never give up until they get it. As we get older it seems we somehow lose that drive to keep trying when we fail and it comes so natural to babies."

I'll end my thoughts on a positive note. Get ready for it. Our little superman learned to roll over from his stomach to his back this week! And, has done it several times, so it's not just a fluke! We start physical therapy on Monday, Brett and I are both very eager to learn more ways to get Kellan stronger.

Lastly, I feel like songs take on a new meaning when you are going through something hard, thank you Jason Mraz for picking me up this week...
                                   
                                               "I won't give up on us...
                                                  Even if the skies get rough.
                                                 I'm giving you all my love,
                                                    I'm still looking up."

The News

I'm pretty sure it is impossible to not smile at that adorable little face! When I became pregnant, I had the intention to start a blog to follow the journey of Kellan's life, a baby book of our time if you will. I'm not really sure how 4 months have gotten away from us, but some things have happened in Kellan's life that made me finally decide to start a blog to keep our friends and family up to date on the little man in our life.

As many of you may know, Brett and I had quite the journey trying to get pregnant. We had our ups and downs for about a year and after one successful IVF attempt, Easter Sunday 2011, our life as we knew it had changed....we found out we were pregnant, expecting our little baby on New Year's Eve 2011! My entire life, I've dreamed of being a mom, my dreams were coming true. After the most normal pregnancy I could ask for, little Mr. Kellan Theodore was born. Just in case I haven't shared enough pictures of our good looking little guy....here's one more.

His life started out a little rough. Right after being born, he never let out that cry you can't wait to hear. His transition from water to air was harder for him than normal. He ended up spending a night in the NICU, but bounced back rather quickly and was brought back to our room the following morning. At last, we were with our perfect, precious little bundle!

After getting over the biggest phobia of my life, absolutely dreading the hospital, I cried when we left because I grew to love it so much! That is where our little journey with Kellan started.

We brought him home and for the first 11 weeks of his life, he struggled to gain weight. Our Pediatrician was working to find out the reason for his poor weight gain, switching his formula every couple weeks, but to no avail could he find the answer. We ended up getting admitted to Children's on March 12th to figure out the problem as quickly as possible. After a day of being there, Kellan was diagnosed with 'failure to thrive,' due to a milk protein allergy. He was seen by several Doctors within that 4 day stay, but we thought we had found the answer.

One of the many Doctors he saw was a Genetics Doctor. Because of some extra skin on the back of his neck, the genetics Doctor wanted to run some tests to rule out any potential issues. At that time, I felt the tests were somewhat unneccessary, but we wanted to make sure we ruled out every possible reason for Kellan's failure to thrive diagnosis. Which brings me to what pushed me to start a blog.

The Genetics Doctor did find something in the tests that were ran. We found out that our little bug has a deletion on his chromosome 13, specifically q21 - q31. What does this mean for Kellan? He will have some level of a learning disability. The Dr's put it as mild mental retardation, but I feel like those words have a very scary rap to them. He will always be smaller (short stature), has a greater chance at developing cataracts and will have severe motor delay. The Dr's could only find 2 cases of other people with the exact same deletion, which make it very difficult to know exactly what to expect.

In one case, the little boy learned to crawl at age 3, learned to walk with assistance at age 5 and learned to walk on his own at age 10. I found other cases online where kids started to walk around 2. We have no idea what this will mean for Kellan, we can only hope and pray that God has a plan for our little bug. I have so many questions and mostly at this time I'm just angry that this has happened to us. I'm not really sure it has all set in at this point.

I want our friends and family to know that this is going on and figured this is a good way to keep everyone up to date. We of course will celebrate each one of his milestones. We know there are going to be bumps along the way. Brett and I love Kellan more than life itself and we are going to do our very best to create the best possible life we can for him.

We ask for your prayers. In times like this, I have a hard time finding the positives. I'm lucky to have Brett to balance me out in that part and we are so blessed to have really great families with lots of people that will love Kellan unconditionally. Not to mention lots of nieces and nephews that will always be there to be his friend and play with him and push him to be a stronger little boy. We are lucky to be blessed with some of the most amazing neighbors with lots of neighbor friends just waiting for him to get bigger so that he can play with them.

For those I have told before this blog, I thank you for all the loving and kind words of support and encouragement you have already given to us. For those of you just learning of this, I'm sure you are just as confused and have a million questions just like us. I will try to keep this blog updated with the things we learn and of course will keep you up to date on what is going on with our little bug.

He may be our little bug, but I know he has lots of big things to look forward to in his life.