Happy Birthday, Caden!!

After two years of being absent from the blog, I figured Caden's third birthday would be the perfect day to FINALLY update everyone on how our little guy is doing.  I can not believe that it has been that long since I wrote on the blog, but better late than never, right?

Life with Caden has been going really well, for the most part.  The thing about Caden is when things are good they are really good, but when things are bad they are pretty darn tough.  So let's start with all things good.  Caden is walking/running all over the place these days.  He signs up a storm, too!  I don't even know how many words are in his sign vocabulary; he picks up signs so quick!  He is signing in short sentences, too, which is great.  He knows his colors, how to sign-count to 10, and is learning how to finger spell.  He is identifying more sounds with his cochlear implant, also.  We are really happy to see that.  He is generally just a fun little 3-year-old (today!) boy.

On to the tougher aspects of Caden's life.  He still eats from his feeding tube.  He is unable to eat anything orally because when he swallows anything it partially goes into his lungs.  This is super dangerous, and, obviously something we want to avoid.  Caden isn't verbal, yet, either.  The one word he does say loud and clear is "Mama".  Yup, definitely warms my soul to hear.  We wish he were able to say more, but we are not giving up.  Also, when Caden gets sick he gets REALLY sick.  Just recently he had 3 viruses back to back.  High fevers, breathing treatments, not keeping his feeds down; I'm sure you get the picture.  It's is an all consuming 24 hour job when he is sick, and that is when I realize how difficult things can be for Caden.  This last illness that he had consisted of sores down his throat, a sinus infection, and stomach virus..........ALL AT THE SAME TIME.  Poor guy.  I just felt so bad for him.  Imagine your throat full of sores and heavy congestion and not being able to have a single sip of water.  My heart ached for him.  In those moments my mind runs like a hamster on a wheel.  It is a cycle of why, why, why's.  But, it all ends in the same conclusion; there are no answers to the why's.  Caden is just who he is and in those moments all I can do is just be there for him.  He amazingly got through this last virus with little complaints.  He amazes me so much.  I am inspired daily by his strength.



On to other Caden news; he is starting pre-school in 2 weeks.  Unbelievable!  He was tested several times through the school district.  The people that tested him just loved Mr. Caden.  They kept telling me how funny, smart, and engaging he is.  I told them I thought that too, but I just assumed it was because I was his mom.  They assured me that he truly is an amazing little guy capable of doing great things.  I left the evaluation with tears in my eyes.  Mostly tears having to do with Caden are painful ones, but these tears were pure joy and pride.  We have worked so hard as a family to get him to where he is today, and he is a very determined boy that just wants to keep up with his big sisters.

Caden will be in a pre-school class with typical children that have hearing loss.  I am so excited to see him running around and signing with his little friends.  How cute is that?!  He is Mr. social so I am pretty sure he will adjust well.  I am more worried how I am going to feel the first day I drop him off and leave him there.  I tear up just thinking about it!  This will be a big step for all of us.  The girls are already worried for him.  They don't even want him to go:).  The biggest challenge to this new school thing is going to be getting everyone where they need to be.  Caden will be in school 5 days a week for 3 hours.  His school starts at 8:15 and is about 25 minutes from our home.  The girls start school at 8:30 right around the corner, and on Tuesdays and Thursdays Jenna starts at 7:45 for math club.  I know.  My head is spinning as I am writing this.  I am sure we will eventually get into some kind of routine.  Bussing Caden is an option, but I am not ready for that, yet.  His teachers assure me the little kids love it and he will do great.  Something to think about for later.

The rest of our family is doing well.  Growing fast, and just keeping busy.  The girls are now 6th grade, Natalie, 3rd grade, Jenna, and 1st grade, Cara.  They are all in soccer, piano, and girl scouts.  We just take things a day at a time around here.  I'm sure that's the same for most of you!  I will try, try, try, to be better with the blog!

Thanks for checking in!

Mary

What a Difference a Year Makes.....

Caden's NICU nurse at his party

Nat wins city cup! At the American Girl store.

Chad and I in the mountains.

Cara and Jenna on the Blue Sharks.

Kiddos hanging out!

A lot has been going on in our home since the month and a half that has past since my last post. I feel terrible that I have neglected my blog, but life has gotten in the way. With Caden's birthday, the holidays, and sporting events I haven't had the time to sit and write, and I am barely awake as I write this now. I know it is only 9:30p.m. but I am wiped!

Caden celebrated his first birthday on November 12 and I really reflected a lot on the prior year. His birth was such a bittersweet moment that for a long time after that day I had a hard time looking back. It brought too much pain and sadness so I tucked those memories deep inside. As his first birthday approached I slowly pulled those memories out again to touch on the feelings from that day; his birthday. Going into the hospital that day I was told his birth would bring the relief that he had an isolated cleft lip and palate and everything else would be just fine. I was reassured from test after test that he was a healthy baby despite the cleft. Call it mother's instinct, but in the pit of my stomach I had a feeling there was more going on. That morning I was hoping that I was wrong and having my son would bring relief and great joy.

Immediately after his birth I was relieved. The doctors said it looked like an isolated cleft lip and palate, but otherwise he looked great. I did a lot of research prior to his birth and I was looking for indications that might suggest otherwise. The doctors held Caden up for a picture and I noticed his ears looked mishaped. My stomach knotted up and I started to panic. I asked my doctor and the NICU team what they thought and nobody seemed alarmed. I was very alarmed. After that everything just seemed to snowball, and before I could celebrate the birth of my only son we were completely entangled in the scary life of the NICU. There was so much uncertainty and questions that really couldn't be answered. We spent long hours in the NICU, long hours waiting through surgeries, and long sleepless nights thinking of all of the "what ifs". I have never felt such deep pain and fear in my entire life. I feared losing my son, and I also feared the life our family would face when and if we brought him home.

On December 22 we finally brought our sweet boy home, and our journey as a family with a child that has special needs began. Those early days, weeks, and months were extremely tough, but somewhere along the road the pain eased and the joy and love took over. I can now reflect on his birth and see what a gift our family received that day. This is not an easy life, but I wouldn't change anything now. We have all learned so much from Caden. I learned that you never know what life will bring, you must enjoy the moment. I have also learned to appreciate my family and dear friends even more. That is what life is about; those that mean the most. We could have NEVER made it through this trying year without our selfless, amazing family, and encouraging, caring friends. My family is beyond blessed with the people that surround us. I will forever be grateful for the sacrifices our loved ones have made and continue to make that help make our life not only manageable but enjoyable.

So in order to celebrate Caden's first year we had a huge bash. It was a striking difference from the year before. We, also, set up a fund in Caden's name through the Smile Train organization. With the generous donations from family and friends we were able to raise enough money for 5 children in need to have their cleft lips repaired. We are completely touched that people made these contributions in Caden's name.

Caden continues to grow and thrive. He is crawling everywhere, getting into everything, and getting very close to walking. He is signing a bit more, and recognizing a lot of the signs we show him. He has a dear soul that has already touched many. I feel blessed that I call him my son.

The girls are all doing well and love playing with Caden. They are amazing with him and so very protective. Natalie told me the other day that she thought Caden was the only brother that wasn't annoying :). Seeing them with him brings the deepest joy I have ever known. I am so proud of how they accept him and love him.

Chad and I were able to get away for a few nights to celebrate our 11th anniversary. We stayed at my parents' cabin in Big Bear. We had a wonderful time thanks to our parents watching all four of the kids. We definitely needed the vacation after our annual Halloween party and Caden's birthday. Now it's back to the craziness of our life. We are enjoying the holiday season at home with our family this year after spending it in the hospital with Caden last year. What a difference a year can make.

Mary

Leaps and Bounds.....

at the "Race for the Cure"

Visiting Auntie at USD

The girls and "Coach Dad"

Time sure goes by so very fast. I know I have said this many times, but I just have to say it again. The weeks just whiz by and next thing we know we start a new month. It is so hard to believe that September is nearly over. It is, also, hard to comprehend that our Sweet Caden is 10 1/2 months old! These past months have flown in a blurry daze at times whipping from one appointment to another. I look at my weekly planner full of lots of appointments and reminders and I wonder how I will make it through the week, and before I know it lovely Friday has arrived! Then it is a weekend of soccer games, and just as we are settling into the weekend Sunday night is back again! I am sure many can relate to the craziness.

Caden has been doing pretty well lately. Other than a scary bout of pneumonia and two ear infections, along with a medicine that made it look like he had bloody poop (T.M.I.) he has been fairing quite well. Big news around here is that he is crawling. He is on his hands and knees and literally crawling! I am so amazed at this because I truly never knew if I would see the day. We have never been given any real guarantees or prognoses on what he may do, so this was very exciting. He is also starting to sign a bit. He signs mommy, daddy, doggy, and waves bye-bye. He doesn't do this consistently, but enough to assure us that he is really trying to sign. He really engages with people, as well, when they are signing to him. If you show him something he will look at the object and then back to your hands as if saying,"Tell me what this is!". I absolutely love his sign language teacher, too. She comes every other week and is very enthusiastic about teaching Caden and the family sign language. She truly emulates a deep passion for what she does. The girls adore her. We, also, ran into her this weekend at the Susan G. Komen "Race for the Cure." What are the odds?!

Other exciting news is that Caden has finalized his evaluation for his cochlear implants. It has been medically approved for one ear and we are now waiting for our insurance to approve things. Once our insurance gives the OK Caden will be scheduled. This means it could happen any time now. I am in awe and I think a little bit of denial that he will be actually hearing soon. I don't want to get my hopes up too high, but it is just amazing what can be done for people in this day and age. There are, of course, risks that go along with performing the surgery. Along with the obvious risk of going under anesthesia, there is a slight risk of damaging his facial nerve that gives him all of his wonderful facial expressions. The doctor assured me that he has never cut this nerve, but the risk does exist. Also, if the facial nerve is in the wrong place that interferes with the surgery he will not be able to get the implant. Weighing the risks to benefits we definitely feel it is worth it. We will keep everyone posted on the surgery date.

The girls are adjusting well to the new school schedule and enjoying there friends and teachers. They love soccer and playing with there very busy baby brother. It is certainly a full house around here!

Mary

I'm Back.....

Really, I can't believe I haven't blogged in nearly two months! The craziness of the summer surely got the best of me. I am truly in shock that school is starting in about a week. Last time I wrote I was just getting used to the new schedule of summer, and now it is about time to adjust to the school routines. I have to admit I am not ready for my girls to go back to school. Prior to the start of summer I was really worried about how I would keep the girls entertained, get to all of Caden's appointments, and keep my sanity. In reality, it has been a great summer. We have been able to do a lot of great family things. We have taken another trip to San Diego and Sea World, went back up to the mountains, had a lot of beach days, and I just returned from a beach house with Natalie's Girl Scout troop. Another reason I am not ready for the start of school is that I will really miss the girls. They are so great with Caden. It is a joy to see them interacting with him. Natalie has been very hands on by changing diapers, clothes, and carrying him all around the house. He is now eating for an hour and getting two hours off so he is a much freer man!

Other news with Caden is that he is a candidate, at this point, for cochlear implants that could go in as soon as November. This is very exciting news for us that Caden may be able to hear. It will be a long process, but we think it is definitely worth the work. He is doing so awesome with the condensed feeds. He is taking 135 cc's in an hour 4 times a day with continual food at 45 cc's an hour through the night. Having him off for two hour stretches has been wonderful. He is also getting very close to crawling. He is such a busy boy moving from one end of the room to the other. This gets a little difficult when he is hooked up to the feeding tube. He is saying, "mama", too, which is incredible considering he can't hear. He wants to be held constantly and is in my lap as I am trying to type this. We are very impressed with his progress and are excited about what he may accomplish in the future. It is still a struggle with his 4-5 therapies a week, but definitely proving worth it.

The girls have now started soccer (all three of them), and Chad is coaching their teams. Once the games begin our weekends should be quite full. We have also added another member to our family. A few months ago one of our dogs ran away, so now we have a new little puppy, Maximum Oliver better known as Max. Yeah, I probably needed to add a puppy into our crazy life as much as I need another hole in my head, but things are actually going quite smoothly. I am starting to think I may be drawn to chaos!

Lately, I have overheard some funny things said by the girls that would probably only be heard in a home like ours. I thought I would include a few of my favorites:

- "Girls, what are you playing?" They respond,"Oh, we're playing therapists!"

- The coffee maker turns off and beeps for a few seconds. Cara yells out,"Caden's feeding tube is

beeping!"

- As I am packing up the diaper back Jenna says,"Wait! You forgot the bulb syringe!"

-I forget the sign for ball and Cara shows me the correct sign!

-Natalie said,"Caden is so cute! I love him just the way he is!"

Hope this finds you all enjoying the last days of summer!

Mary

Time sure is flying!

Wow! Has it really been that long since the last time I updated? Well, I have written a post many times in my mind, but haven't gotten around to actually putting it out their in the blog world. I thought with summer peaking around the bend that my life was going to ease up a bit, but it has actually become busier. Having four children at home, taking them to various summer camps and activities, softball tournaments, and Caden's appointments certainly keeps our days very full. We were able to take a nice little family vacation a few weekends ago to attend one of Natalie's softball tournaments in San Diego. Because it can be so hot out there on the fields my mom and Chad's mom took care of our sweet Caden. Aren't they saints?! We took full advantage and went to Sea World and thoroughly enjoyed our freedom. We had some amazing friends make the drive to San Diego at 6:00a.m. on a Saturday morning to catch Nat's 8:30a.m. game. They brought all three of their kids and we all had a really fun weekend.

Caden has been doing quite well lately. We received a string of good news and then heard some upsetting news. The good news has come from the neurologist and the therapists. The neurologist thought Caden looked pretty darn good and does not feel he has cerebral palsy which was something of a concern considering his tight joints. She did not feel he needed any further testing and wanted us to just continue with his physical therapy. That was a relief for sure. I was dreading that appointment and it went really well. Caden's therapists feel that he is doing great. He is starting to swallow a lot better during his feeding therapies. He has barely any more reflux and I can't even remember the last time I had to use the bulb syringe. Yeah!! He is also taking 50cc's an hour now which is a 10cc increase from where he was. So, when Caden's follow-up cardiologist appointment came up I really wasn't too concerned. I told Chad I would take Caden on my own because it should just be a quick check-up. Well, the doctor dropped a bomb on this unsuspecting mother. He informed me that Caden has a muscle in his heart that appears to be thickening. There is no treatment other than to give him a medication that will slow his heart rate. I asked what this all means for Caden and received the standard answer for our son's prognosis,"It is a wait and see thing." If Caden's life hasn't been a lesson in patience then I don't know what is. I came home very heavy hearted, but, again, realized there isn't much I can do in this journey of Caden's life but to just enjoy the moment. I so appreciate that lesson he has taught me. I dig much, much deeper each day to pull the joy out.

My sister just graduated from High School on the year anniversary of me finding out Caden had a cleft lip. I will never forget that day, and as I watched my sister step into a new chapter of her life I realized how far our lives have come since that frightening day I learned my baby would be born with a birth defect. Our lives, I believe, are so much richer because of Caden. I don't take a thing for granted (or at least I try not to). My parents had a beautiful party in celebration of my sister's graduation and so many wonderful people came and met our son for the first time. I tell you, he sure was the hit of the party if I do say so myself. It so touched me when people came over to me to say they have been following the blog and just think Caden is beautiful and doing so well. It really meant more to me than these people will know to hear those words and see everyone smiling and fussing over our little guy. We are surrounded by the most remarkable people, really.

Today at Caden's usual therapy appointment I struck up a conversation with another mother I see every Tuesday. She has four children, too. Three of her children are her biological children and one of them is adopted. Her adopted daughter is the one receiving therapy. I asked her today if she had always wanted to adopt. She said she did, but became very serious about it when her drug addicted sister was pregnant. She adopted her niece and now takes care of all of her needs. We were both saying that even though it is really tough to raise children that need all of this extra care, it sure brings a special component to the family. We agreed that our lives and the lives of our other children were really enriched being on this unique path we were on. She said that in the beginning it was really hard to hear that her daughter's future is uncertain, but then her husband said,"But what matters most is she will be happy. She will be happy and she will be loved." I told her that being happy and loved is really 90% of what makes a great life. She just reached out and hugged me. It was like we had this unspoken understanding. In those moments I am grateful that because of Caden I have met such inspiring, amazing people.

Thank you, Caden.

Mary

Quick Update...

For those of you that have not heard....... the quarter passed! Hip Hip Hooray! I was never so happy to see a quarter in my entire life. If I hadn't just pulled it out of the toilet I would have kissed it. We did rinse it thoroughly and put it in a zippy bag that is being stored very high and away. The picture of Jenna in the bathtub taking a soak was the night she passed the quarter. Guess she needed to relax after all that hard work:)

Also wanted to post a few new pictures of sweet Caden. He is just so happy lately. He kicks his legs like crazy whenever someone gives him a big smile. He is doing pretty well right now. He had a recent evaluation at UCLA for cochlear implants. As of right now they are not sure if he is a candidate for them. He was fitted for ear molds that will hold hearing aides and will start wearing them in about 2 weeks. They are not sure if the hearing aides will help, but it is a mandated part of the process towards implants to wear hearing aides for at least 4 months. He will also need an MRI and CT scan to evaluate his ear structures and auditory nerves. This will have to be done under general anesthesia so I am not looking forward to this at all.

In other Caden news, he is now rolling from his back to his tummy and his tummy to his back. We are working on the sitting. He is still on continuous feeds and that seems to be his toughest area. We tried to up his food intake from 40cc's an hour to 41 and he started vomiting continuously. I really did not anticipate upping his intake by 1cc would have such a terrible affect on him, but it did. We took him to the GI doctor and she would like to go back to 40 for awhile and then work on consolidating his feeds over shorter periods of time. I am not convinced we can do this right now since he could not handle 1 more cc an hour, but we shall see.

Our life is even more crazy right now if that was at all possible. Natalie is now playing All Stars for softball and Chad is one of the coaches. They practice for two and a half hours every day of the week and in another week will have a game every night of the weekend (Fri., Sat., Sun.). I am not thrilled about all this, but she really wanted to play and Chad was excited to be asked as one of the coaches. This will go on for the next 6 weeks. Hopefully I will still have my sanity by the end of all this.

Mary

Better Days, Thank You's....and Another Scare

Since my last post things have seemed easier to handle. Caden has just been the sweetest little guy full of smiles and love. We were, also, able to take a family trip up to Big Bear to celebrate Natalie's 9th birthday, and it was a much needed getaway. It was great to do something we have always loved to do and realize it is possible to load our crazy family of 6 and head up to the mountains just as we used to do. Caden was the best traveler sleeping the whole way up and the whole way back home. We got to enjoy the beautiful weather and spend time relaxing as a family. It went better than I had expected. I can't wait for our next trip up!

I also wanted to thank so many wonderful people for their kind comments, emails, letters and phone calls. It helped me get through a rough time more than you can ever know. I wish I could get back to each and every one of you to personally thank you; I will try. I can't tell you how your inspiring and caring words gives me the strength to continue on this uncertain journey. Every message is read over and over and I go back to these notes when I need a little boost. You are all amazing and keep me afloat in these turbulent waters. I can never express enough how much your words mean to me. Thank you from the bottom of my heart. Your messages are like hands catching me before I hit the ground.

Caden has continued to grow and flourish. Although his future is very uncertain, he continues to amaze me with his endearing personality and strength. He face just lights up when we smile and talk with him. I know he can't hear us, but I think he loves all of our expressions. We took him to see a geneticists that saw him in the NICU and she was very impressed with how far he has come. She reminded me of all he has been through with surgeries, intubation, extubation, tests, and more. She said it was tough to see us going through all of that. In those moments I truly realize how far we have come and feel blessed to be where we are now; together as a family.

Just as things seemed to be turning a nice corner we had quite a scare. Tuesday night while getting ready for bed Jenna choked on a quarter she was playing with. I had just told her to put the quarter away and moments later she was completely choking. I started giving her the Heimlich maneuver and Chad called 911. She managed to pass it through her esophagus and into her stomach. We spent 4 hours at the E.R. taking x-rays and are now waiting for the quarter to "pass." If this doesn't occur soon she may need to have it removed. We are praying it passes because I really am not in the mood for any more surgeries!

Mary

P.S. I just had to add that we found it funny that the picture of Caden holding a little beverage is actually a picture of C.L. holding C.L. holding a C.L.(Chad Lukkes holding Caden Lukkes holding a Coors Lite.) Please do not worry, Caden never had a sip!