Life is a beautiful struggle

It's been far too long. I have had these feelings locked so deep inside of me for so long and needed to get them out. It is so therapeutic for me to sit and write out my feelings, I should have done this sooner than now, but that's life I guess. So much has gone on since my last post.The beginning of last year I was in and out of the hospital with my Crohn's disease. It was a really tough time, I was away from my family and I couldn't see my kids because I didn't want them to catch anything being up in the hospital. I was in there for weeks at a time, then I would come back home for a week just to turn around the following week and be up there again. It was so mentally and physically exhausting. There was a point in time where I wondered if I would ever get my life back again. Finally in March of 2016, I had my first Remicade infusion in the hospital and life started to turn around. I felt good, I was back at work and things were going great.

 

On June 8th 2016 we closed on our first home, and boy was that an amazing day. I had so many emotions. My husband and I have worked so long and hard to be able to provide our family with a house to call their own. We were all finally happy and in a place where nothing could stop us now. We adopted a 2 year old Puggle named Shay. We all fell in love with her fast, and she became the 5th member of our family.

 

 

Then in September I had the biggest most horrible scare of my life so far. My son was having problems with his leg. He was limping and in a lot and in pain. We took him to the doctor and he got x rays done. I remember getting the call on a Friday afternoon from our family doctor that he wanted my husband and I to both come in as soon as possible to discuss what they had found. I knew this was bad, my family assured me everything was OK, but I am his mother, I just knew. The doctor sat us all down and gave us the worst case scenario, and said this could be a form of cancer of the leg bone. The words hit me like a ton of bricks. I didn't hear much else. I kept it together and we went home. When we got home I dropped to my knees, begging God not to let this be possible for my baby. I prayed God would give it to me instead. My husband and I just sobbed outside knowing we had to call and inform our families of this possibility. The words wouldn't come out, all I could do was sob. All of our family and friends came over we all cried but kept it cool for our little guy. Later that night we went to Chuck E Cheese's with some of our dear friends and family so Gavin could have a fun night, and not have to think about what was going on. He knew, but I don't think he really knew how bad it could have been. I didn't want him to know. I didn't want him to be worried. I remember driving with him one day, and him saying to me, "Mom, you know, some people have really bad problems and have to have their legs cut off, and that's ok, because it makes them better and they do fine." It took everything I had to not break down and cry right at that moment at how understanding my child was, and how he knew no matter what everything was going to be OK.

The doctor wanted to order an MRI to get a better idea what was going on. Our appointment wasn't for a week. For a week I was beside myself with pure grief knowing the magnitude of this possibility. Was I strong enough to get through this? There's no way my baby boy has cancer. I had never felt this level of despair. The day of the MRI Gavin was so strong and went through it fine, he even got to listen to Twenty One Pilots in the MRI machine which helped take his mind off of the machine. We were told it may be a day or so before we get the results of the MRI but that our primary doctor would call us whenever he knew. We left and got something to eat, and went to my in-laws house to relax and wait for results. A few short hours later, I got the call. The doctor said they did not find cancer, but that Gavin had Legg-Calve Perthes Disease. Although I wish my child didn't have to have any problems with him, I was grateful it was not the alternative. I thanked the doctor and hung up. I literally fell to my knees crying with joy. I could barely talk. I silently thanked God. Then I announced to everyone that it was Legg Perthes and not cancer. The whole room lit up, and everyone was hugging and crying tears of joy.

Legg Calve Perthes was a possibility from the start, but our primary doctor didn't think this was the culprit because he was having pain in his knee area, and normally with Legg Perthes you have pain in your groin/hip area. Basically here is a run down of what Legg Calve Perthes is.

 Legg–Calvé–Perthes disease (LCPD) is a childhood hip disorder initiated by a disruption of blood flow to the ball of the femur called the femoral head. Due to the lack of blood flow, the bone dies (osteonecrosis or avascular necrosis) and stops growing. Over time, healing occurs by new blood vessels infiltrating the dead bone and removing the necrotic bone which leads to a loss of bone mass and a weakening of the femoral head.^[1] The bone loss leads to some degree of collapse and deformity of the femoral head and sometimes secondary changes to the shape of the hip socket. It is also referred to as idiopathic avascular osteonecrosis of the capital femoral epiphysis of the femoral head since the cause of the interruption of the blood supply of the head of the femur in the hip joint is unknown.

 

We were able to celebrate Gavin's 9th birthday in pure joy and happiness for sure the best birthday thus far. Gavin even got a kitten which he has asked for since he could talk. So then came Evee our 2 month old kitten who then became the 6th member of our family.

 

Gavin will have a long road to recovery. For the next 5 years this will be his life. He still limps and has problems with it every now and then. He goes to an Orthopedic specialist every 3 months. If his femoral head does not grow back, he will require surgery. Gavin is restricted from sports and some activities in Gym class. Gavin loves trampolines and has been wanting to go to the new trampoline park in town, but he is just not able to at this point. We are working towards to goal of someday being able to take him there.

These are the cool short he has to wear to have his X-Rays

Life is good again, I had some set backs with my Crohn's from time to time, but I seem to be back on track. Gavin has been doing pretty well, a few flares up himself but we are working through it with the help of our Doctors and Chiropractors. I have to believe God gave us both these issues so we could help each other and be there for each other. To learn sympathy towards others, and to stay strong for those we love. I have to believe I was given Crohn's so I could be a better mother in understanding, caring for and being able to sympathize for my child who has a medical issue. I was surely blessed with my son, so caring, understanding and helpful when I myself am not doing well.

Kynlee has been good, and is really growing up to be a wonderful little girl. She still has her sass, and she is wild as ever, but I love her free spirit and her wildness. She keeps me wild. I keep her safe. I decided someday I will be the "cool mom" and we will get this tattooed on each of us some day. She started dance class in January. She will have a recital in June. We are very excited!

 

 

 

 

 

 

Everything else is well. My husband is good, our family is good, my life is good and we are just looking positively into the future. I am so blessed. 

 

-Ali