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!

A Mother's Heart....

Before Caden was born I was fortunate to only know how to parent "typical" children. I would go to their checkups eager to brag about all the milestones they had reached and walk away proud as punch that my children were doing so well. I would call all the grandparents to say that so and so was in the "90th percentile for height" or the doctor was so impressed at how many words she could say. I have now entered a whole new world of parenting.

Today I brought Caden in for one of his check-ups. Instead of walking out of there eager to call everyone to say how great he is doing I walked out of the doctor's office in tears with a referral to a neurologist. Caden is in the 5th percentile for height, weight, and head circumference. He is also a little bit rigid in some of his joints which could be an indicator of other problems. I thought we had covered about every aspect of Caden's health that was possible; we are now needing to see a neurologist. I just feel a bit defeated today. It seems just after we feel things are settling down something else arises and our world turns upside down again.

Being a mother has always been the greatest source of joy in my life. I am now experiencing some of the deepest pain I think a mother can experience. Being unsure of what is going on with your child and seeing your child in pain is extremely difficult. Caden seems like such a mystery sometimes. I never realized how"typical" my other children were until I had Caden. The uncertainty of all of this is really taking a toll. Where will all of this lead to? What does Caden's future look like? I guess in reality I really don't even know the answers to those questions for my other children.

For now, I will continue to pray, take things one day at a time, and be thankful for all the many blessings that I DO have. I will try not to question too much, and I will give Caden all the love in this mother's heart.

Mary

Recovery.......for all of us

Recovery has been quite a roller coaster for all of us. After we brought Caden home from the hospital after his surgery I think I was on a post surgery "high" for awhile and then I kind of crashed. Not only was it tough to see him in pain and having trouble breathing because his nose was plugged, but I realized I was so focused on the surgery for such a long time that it was a great distraction from all of Caden's other issues. Once his surgery was finished I was so happy that he made it through and looked so great, and then it hit me that this was not the end of the road. See, while I was pregnant with Caden we only knew he had the cleft lip and palate. We were pretty certain there were not any other issues. I kept dreaming of the day Caden would get to have his surgery and we could sort of move forward with our lives. I knew a cleft lip and palate were always going to be an ongoing issue with repeat surgeries, orthodontia, and speech therapy, but the surgeries were the big deals. It suddenly struck me after Caden's surgery when we were at the plastic surgeon's office and surrounded by other kids with repaired cleft lips that Caden has other things that can't just be "fixed" by surgery.

When I was pregnant I was devastated that Caden was going to have a cleft lip and now I wish that was all we were dealing with. It makes his encompassing diagnosis so real now. The lip repair was just one of the many things we have to walk through with our baby. Don't get me wrong, I am ecstatic with the outcome and so relieved that the surgery is over. It definitely is a weight off of our shoulders to have this surgery behind us and that he did so well, but we are still on an uphill battle with our little guy. The doctors appointments, therapies, and questions continue.

The good news is Caden is as happy as a clam these days. His nose stints are off and his arms no longer have to be in restraints so he is a free man! He rolled over for the first time last weekend, too, and we were so thrilled! He is just a little love and he probably thinks he is the cat's meow because everyone is always smiling and kissing on him! His personality is really coming out, too.

The biggest battle for us right now is to try and get his reflux to improve and work on consolidating his feeding so that he is not hooked up to the feeding pump 24 hours a day. It would be great for all of us if he was able to bolus feed someday. That way he could eat 3 or 4 times a day at a half hour each time. This is our next hurdle. He just doesn't seem to tolerate much in his stomach at any given time. He is also refluxing a lot still, and it is hard to watch him choke and gag so much. We are praying for something to change in this department.

On to other news, by the pictures I am sure you can see we added a new member to our family. Snowflake, the bunny, was given to Cara by the "pacifier fairy" Easter morning for giving up her pacifier and blanket. Snowflake has been a lot of fun for the girls. She really likes to be held and Cara is so proud to have her very own pet. If that bunny could only wear a diaper when she hops around it would make things a bit easier. I forgot how much pooping rabbits do!

I hope everyone had a great Easter holiday. Thanks for all the prayers for Caden during his surgery. Also, thank you to the many people that helped with meals and the kids, and dropped of goodies. You people are amazingly thoughtful.

Mary

Here's..........Caden!

So I have definitely not been keeping up with the blog as much as I would like to, but, as most of you know, we are a tad busy over here! I am happy to report that Caden made it through his surgery very well, and is recovering nicely considering all that he has gone through. Chad and I on the other hand are pretty darn exhausted!

As you can see our little guy has changed a lot. I have to admit; I had some mixed emotions when I first saw him after his surgery. Let me back up a bit though and give you all the run down. Chad, Caden and I had to go to CHLA on Monday morning by 9:00a.m. for a pre-op appointment. It was supposed to last about and hour to an hour and a half, but we ended up being there for nearly four hours. Then we had to race back to Fullerton because I had parent/teacher conferences at the girls' school. After that, Chad, Caden and I drove back to L.A. to spend the night at a hotel near the hospital because we had to check into the hospital at 5:30a.m. That night before the surgery Caden started coughing more than usual. I started to worry that he may have a cold, and then I started to freak out that after all the pre-op craziness and tests that maybe he would not be able to have the surgery. The next morning when we got to the hospital we told the nurse practitioner that was examining him that he was coughing more than usual the night before and we were wondering if this could affect the surgery. After speaking with the anesthesiologist and the surgeons it was agreed that we would go ahead and begin the first part of his procedure which was a bronchoscopy by the ENT and she would determine if his airway looked clear and healthy enough to proceed with the rest of his operation. The fear was that if he had a cold brewing it would make matters worse to have him intubated for the surgery because the intubation irritates the airway and that irritation in combination with a cold would put him at risk for developing pneumonia. We went ahead and said our good-bye's and waited anxiously to hear if they were going to go ahead with the lip and nasal reconstruction. We were praying all would look fine because it took so much effort on every one's part to get to this place. Getting everything lined up was not easy, plus making sure the girls were taken care of. Well, about 30 minutes later the anesthesiologist came out to report that all looked well and they were going ahead with the whole surgery. We were relieved. We, then, nervously waited for another 3 hours until he was finished.

When the plastic surgeon brought us back to see him it was such a shock. He looked completely different! Our plastic surgeon did an amazing job! I couldn't believe I was looking at our Caden. I actually missed the old Caden for a bit because that was all we have known for the past 4 months. I had heard other families with children that had cleft lips repaired say they missed their babies "wide smile" and I suddenly realized exactly what they meant. After a few hours of looking at our new little guy I fell in love with his new look and I think it turned out beautiful! The full result won't be seen for awhile because of the swelling and nose stints, but already he looks adorable! I will always, though, have a special little spot in my heart for Caden's first big grins.

When the surgery was over we waited in recovery for about 7 hours until they could find us a room. When we finally got a room it was a little chaotic. Caden was miserable from the surgery, we had to share a room, and it was right next to the extremely noisy nurses station. I stayed the night at the hospital with Caden and Chad returned to the hotel because the hospital rule is only one parent can stay. That was one crazy night! I am definitely still recovering. Poor little guy was MISERABLE.

Now we are home and trying to keep him as comfortable as possible. He is really doing quite well. I am so proud of him. He has his little arms in restraints so that he can't pull at his face. He also some bloody drainage that he chokes on from time to time. Through all of this he is already showing off his new smaller smile! So sweet!

We hope and pray his recovery continues to improve for all of our sakes. I want to thank everyone for all of their prayers, good wishes, and help. I am continually heartened by what wonderful people fill our lives. It makes going through these hard times possible. We are so immensely blessed by our family and friends. I will never be able to thank all of you enough. Please know every kind word and deed is beyond appreciated and will never be forgotten.

Mary

P.S. I happened to run into my cousin, Sally, accidentally at the hospital. She works there as an anesthesiologist. Thank you, Sally, for looking after him and checking in with us!

It has been awhile.....

Things have been quite busy around here hence the lack of blog updates. The busyness has not been all medical things, though, so we are mixing the good in with the bad. Caden continues to thrive at home, and brings us so much joy with his sweet little ways. I am getting to know this new little guy more and more every day which makes life a bit easier. The one thing that hasn't changed, unfortunately, is his crazy nights. The lack of sleep is definitely taking a toll.

We did get an awesome night away 2 weekends ago when my mom, for a Valentine's Day gift, took all four kids (yes you read it right - ALL 4 KIDS) for a spend the night at her house. Chad and I were so excited to actually have a whole evening and morning to ourselves. We went to an early dinner and came home and were asleep before 9:00. It was quite the luxury. The next day Chad's parents watched Caden so we could spend some special time with the girls. We had a blast. We felt a little refueled after that nice weekend. We have also squeezed in a few date nights and I had a great girls night out. Having these breaks to look forward to helps me get through all of the doctor appointments and therapy sessions. This weekend we are going to the horse races for my Dad and Chad's birthdays. My grandparents are coming in from the desert to come along, too. Chad's parents will have Caden. It should be a lot of fun. If it weren't for the amazing help of our families I am not sure where we would be (mentally) at this point. I am grateful to God every single day that I am richly blessed with the most wonderful, compassionate, and selfless family. Thank you is so completely inadequate to describe how much I appreciate all that they do.

On to some updates about "Sweet Caden". We have an unofficial surgery date of March 23 for his lip repair. Some things need to be ironed out before it becomes official, but I am really excited to get this ball rolling in the right direction. As excited as I am for the surgery I am also very nervous. Today Caden had a minor surgical procedure of removing his g-tube and replacing it with a mickey button. He is still tube fed; it is just a different, more efficient contraption. Handing Caden over for this brief surgery was tough. It was also heartbreaking watching him get his little I.V. put in. The waiting was the worst. Mind you this was a 20 minute procedure. I do not know how I will manage waiting through a four hour major surgery. He is just so innocent and happy and has no idea of what is going on. It is hard to knowingly put your baby through these things, but it is all in his best interest. What I am excited about is to see what he will look like after the repair. He is already, in our eyes, just as cute as can be so I am anxious to see the results. The recovery could possibly be the most trying part of the whole ordeal because he has to be in arm restraints for two weeks in order for him not to pull all of the stitches out. The restraints are called "no no's" and they look like little casts. They basically keep his arms straight out at his sides preventing him from pulling at his lips. He loves to put his hands in his mouth so it is going to be rough.

Prior to getting this tentative date we met with a new ENT that we love. She is located near our plastic surgeon in the L.A. area. It is quite a drive but most definitely worth it. She was friendly, informative, kind, and answered all of the questions we could possibly think of. I felt at ease with her and I feel completely confidant that she will take great care of Caden. She will be putting tubes in Caden's ears during the lip repair operation. She will also be following Caden very closely with all of his hearing issues. Since we need be very involved with an ENT I am extremely happy we found someone like her. We left her office with big smiles on our faces knowing we wouldn't be back to the infamous other ENT.

Caden's therapy is going well, too. We are at CHOC twice a week for e-stim treatments. We love the therapists there making the sessions easy on Caden and I. The therapists are very gentle, kind, and informative. They really think Caden will benefit from the treatment and are impressed with how he is doing already. I get to sit in this huge swing and rock back and forth while he is getting his treatment. The swinging is supposed to relax Caden and it definitely works. It is pretty enjoyable for me, too!

Caden is now weighing in at 12 pounds 4 ounces and is growing well. He loves to bat at his little toys and coo at his sisters. We love watching all of his little milestones because they are true miracles in our eyes. Each day he is in my life I feel so blessed to have him here. Yes, it is very difficult, exhausting, ect., but he is such a little angel. I really feel he is an angel here on earth that is teaching me so much about life and about myself. His strength through all that he goes through inspires me. The road has been, and will be, rocky and long, but it is full of many enjoyable, breathtaking moments.

Mary

The Good and the Bad....

Caden, as the audiologist put it, was a "rock star" during his hearing test. The audiologist first checked for fluid in Caden's ears and he definitely has fluid. This is extremely common with cleft lip/palate babies. Then we were put into a dark little room with a rocking chair and he was hooked up to the ABR test. I had to get him to sleep before the test could begin and he knocked out in less than 5 minutes. He only woke up once during the entire test. We were able to complete the entire screening in that one visit. That was the good of it.

On to the bad of it; Caden has profound hearing loss in both ears. This was not a surprise to us. It isn't difficult to do an "at home test" for hearing. One such test I put my ipod's ear buds up to Caden's ear and cranked up the volume and he didn't respond at all. Another "at home test" was when Caden was sound a sleep in our room and I broke out singing very loudly and he didn't move a muscle (that time it was probably to his benefit that he has hearing loss). Even though this was no surprise it still was disappointing. I was hoping they would find that his hearing wasn't as bad as they had previously determined.

All hope is not lost. The next step is to clear the fluid from his ears most likely with tubes. After that, we will retest his hearing. Then he will be fitted for hearing aids. If the hearing aids do not help then we will look into cochlear implants. I really want to explore every avenue possible to have Caden hear. I am already starting to sign a little to him. I want to prepare him and us for the chance that he won't be able to hear. I really want him to hear our voices and I desperately want to hear his sweet little voice speaking to us. Sometimes I will have moments where I get so sad thinking he may never even hear his own name. It really chokes me up when I think about that or the fact I may never hear him say,"mommy." I never truly realized what beautiful gifts those were with the girls, and I won't ever take it for granted again (except maybe when they are screaming at me and each other:))

Well, next week we see our oh-so-friendly ENT, and we will be meeting with our plastic surgeon again. She has an ENT we will get to see as well. I am hoping we can connect better with this ENT and never have to go back to "Dr. Rock Personality". It would also be beneficial to work with the ENT our plastic surgeon uses because we could combine the ear tube surgery with his lip repair surgery.

I love the new pictures I took of Caden. His precious little personality is really coming out. He may not be able to hear, but he sure knows how to communicate with his big blue eyes. They just pull me in every time and I am full of joy and happiness in those moments.

Mary