Happy 6th Anniversary

So much has changed in the last 12 months. Last year, for our 5th anniversary, I was on bed rest at St. Joseph’s Hospital. The nurses were so kind to order us a small a cake to celebrate the special day (picture below). That was such a scary time. Numerous times a week and sometimes a day, Lucas’ vitals would crash and doctors/nurses would run into the room in hopes of moving me to a position that would improve Lucas’ stats and if that didn’t work within 3 minutes then they were prepared to quickly deliver Lucas. Bryan slept on a cot in my little hospital bedroom. While I spent 8 weeks on bed rest, there were only 3 times that Lucas was doing well enough in my tummy that I could leave my room for a ” wheel chair ride” privilege which normally lasted for 15 minutes. Wow! We never knew our own strength until we were dead center in the middle of the biggest fight of our lives which was to keep Lucas safely in my tummy until I hit 34 weeks gestation. So proud to say with the Lord’s strength we reached the goal!!!

Oh how times have changed! Fast forward 12 months to our 6th anniversary and our lives are completely different. We wake up each morning to see Lucas’ happy and smiling face! Though we still have issues to deal with for Lucas, we are fighting each battle together as a family. For the most part, our days are filled with pure joy.

Bryan – Over the last year, you have been my rock & voice during the many occasions when I had no strength left. You are the love of my life! The Lord created you with your detailed way of thinking to become Lucas’ father. I could not have prayed for a more perfect husband and father. You are the constant strength that keeps our family on a path that is filled with hope and happiness. Thank you for the abundance of time you spend on locating the best doctors and answers for Lucas. You deserve the husband/father of the year award!!!

5th Anniversary – April 26, 2013

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Our board where we tracked our progress a few days later…

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6th Anniversary (selfie) – April 26, 2014

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First Easter

Lucas had a fun filled first Easter weekend. On Saturday, we stopped by Aunt April & Uncle Craig’s house for Lucas to see his cousins Logan & Ronan. He loved watching his older cousins playing with a mini basketball. We could tell Lucas wanted to play. We may have a little basketball player on our hands! On Sunday, we went to Nani & Papa Bob’s house where we had a big Easter lunch with Gigi, Walter, Aunt Jenny, Uncle Dustin, and cousin Zoe. Later on Papa Lou came over for dessert. Lucas was one busy baby boy! Everyone wanted to play with & amuse Lucas. Bryan & I even had a much appreciated nap. Such a wonderful 1st Easter weekend!

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Our Little Giggle Monster

For those of you who haven’t really had a chance to interact with Lucas, which is pretty much all of you since we keep him on lock down to avoid getting sick, we thought you might enjoy this video of him playing after bath time last night.

Through all the tears and worry, the one thing that always puts a smile back on our face is Lucas! We pray he never loses his happy go lucky spirit!

11 Month Birthday!

Happy 11 month birthday, my love! Lucas is on the go!!! His favorite toy is the battery powered race car which makes racing noises. Lucas loves pulling it back and forth to use it like a ride (see below video link). He is crawling and moving nonstop.

I just love his blonde curls and gorgeous blue eyes. Lucas surpasses my wildest dreams of what our son would look and behave like! He brings us pure joy.

https://m.youtube.com/watch?v=3Xu0gyPTRKg

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Confirmed Rickets

On Wednesday, we had an appointment with a different endocrinologist named Dr. McClellan who works for PCH. He was friendlier and kinder when discussing Lucas’ possible medical condition. He ordered an xray of Lucas’ knees. On Thursday afternoon, we received the devastating news that Lucas has 100% confirmed rickets as seen on the xrays of his knees. Our immediate reaction was feeling overwhelmed by sadness and shedding many tears. We had held out hope that the 1st xray from weeks back was incorrect since Dr. McClellan reviewed that xray and questioned the radiologists findings since rickets normally is not confirmed from an xray of the chest. Now, we need to accept the findings that Lucas indeed has rickets.

On Monday, Lucas will have more blood and urine tests run to narrow down the type of rickets. Results will not be received for up to 2 weeks since these tests are extremely detailed. 99.9% of rickets are due to vitamin D deficiency. Lucas’ 1st set of blood work ruled out vitamin D deficient rickets. In total, there are 5 types of rickets. Dr. McClellan has seen 2 out of the 5 types. He is confident Lucas has a strain of rickets which he has never seen before. In fact, Dr. McClellan has never seen a vitamin D 125 blood result as crazy high as Lucas (the normal max is 75 & Lucas is in the 300+ range). Just great. Lucas again has an extremely rare condition. He truly is one of a kind. 🙂

At this time, the doctors believe Lucas has an extremely rare genetic mutation type of rickets. This means Lucas will have rickets for the rest of his life. We don’t know if his type can be maintained by medicine or shots. We don’t know if Lucas will be able to stand on his own, walk, or eventually have bone deformities. Sadly, we won’t have answers for at least 2 weeks until the test results come back. So we need to learn how to be patient and not go crazy from fear of what the future holds. The fear of the unknown is the most difficult to handle and is what makes me cry. We need to stay positive and have hope the Lord will grant us a blessing by having Lucas’ body show an improvement once a game plan is put in place.

Since that life changing call, we’ve received an abundance of support from our family and close friends. Lucas has been visited by all of his grandparents. On Friday afternoon, we were blessed to be invited to Pastor Brian Goodman’s (the pastor from Foothills Baptists church who performed our marriage ceremony) house to have a heartfelt discussion with he and his lovely wife Gail. In these moments of difficulty, we always feel the Lord’s love & strength. We will not crumble or give up hope. We have the Lord’s strength to fight this battle for Lucas!

How can this happy & handsome baby boy be sick?!?!

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Endocrinologist

On last Thursday, we had our 1st endocrinologist consult. Basically, he said this could be absolutely nothing at all OR Lucas has a rare genetic mutation which means he will have rickets for the rest of his life. All I heard was there is a chance Lucas will have a reduced quality of life with possible issues with even standing or walking. The doctor said we will not have a final diagnosis for 3 plus months. He wants us to take some additional blood & urine tests. As soon as we walked out of the doctor’s office, I started crying. I felt overwhelmed and frightened for Lucas. Bryan held me & did everything to make me smile & not give up hope.

Later on in the evening, I started bawling and told Bryan that I was actually angry at God. Bryan decided we were calling Bob (Papa) & Peggy (Nani) to talk this out. Crazy timing. Bob & Peggy were just starting their bible study at the house. Peggy answered the phone & quickly said she wanted us to share our fears with the group so she put us on speaker phone. While crying, I explained to the group that I was angry at the Lord for once again bringing another issue Lucas’ way. We already dealt with my water breaking at 26 weeks, giving birth at 34 weeks, a large surgery at day 1 of life, a blood transfusion, and a few months of blood issues. Still fighting the cdiff and lower stricture issue. Now, we may have a life long medical issue with rickets?!?! How can these constant issues be a part of God’s plan? When will we finally get a break? I have held it together and rarely cry. Whenever something goes wrong, I immediately looks towards making a game plan and don’t shed a tear. This time, I felt like it was too much & I was ready to break! Then, a small group member named Yemi said a powerful prayer. She prayed the Lord would take away our fears and fill our hearts with hope. Don’t forget the Lord is right by our sides walking this road with us. At the end of this road, we will see the light and look back and finally see all of the Lord’s blessings. For now, we can not give up hope. The Lord is almighty. He will not forsake us. Such a powerful & uplifting prayer! As soon as we hung up the phone, I felt inspired and even thanked the Lord for giving us the small group at the very moment I was ready to break. The Lord has amazing timing indeed!

May our story be an inspiration to others of the power of Jesus Christ. He does not promise you a perfect life if you are a follower. But he promises us peace and his strength. As one of my favorite Christian songs says, “your grace is enough”!