The Little Engine that Could

I remember hearing this story when I was a little girl and cheering for that little engine to keep going, that he was so close and to not give up. I was so excited for him when he made it to the top of that mountain and felt a sense of relief and accomplishment along with him as he made his decent down the hill knowing that he had conquered something hard and never gave up.

I think this little engine is in each one of us, but we have to choose to listen to his chant of encouragement and decide which mountains we have to climb.

As I have said in my last post, this year has been tough on my family. After Geoff read my last post, he looked at me and said, "You didn't mention everything about James." I decided I could only handle little chunks at a time when putting my thoughts out there, sharing scary things that have been going on in our lives with our loved ones. Thankfully, everyone in our family is healthy, for the moment, however we still have our "climbs" as we all have to experience in life.

Unfortunately, James's "climb" is one we have been chugging on for a little over a year now. Long, long story short, James was sick ALL the time from about 3 months until age 1. We were in the pediatricians office at least once a week, no exaggeration! James always had a runny nose that would turn into an ear infection followed by Strep Throat. So, we go to the ENT, because of course we have one from Michael, and he recommends tubes...done! So easy, we've done that before with Michael, no big deal. Then the Strep continues and coughs, sinus infections, etc. I finally decided enough is enough- it is not NORMAL for your baby to be sick this often and our Pediatrician, who I did love, was obviously too busy to take notice or take me seriously. Luckily, a very good friend of mine recommended her Pediatrician and we made the switch. Hands down best decision we have ever made for our boys. Dr O is amazing and attentive and calls me on my phone to talk about the boys and follow up! Anyway, we move doctors, she wants to give him a month to check him out, see whats going on and then orders lab work because she agreed it was not "normal" to be sick this often. Dr O definitely did not see James's results coming when they indicated he has immunodifficency! James is a TANK! He is a big boy and a big eater and immunodeficient kids are not "usually" big babies. But that is what his lab work showed so at least we had a reason for his illnesses.

The afternoon, last April, when Dr O called me was life changing. My little engine derailed briefly as she told me what his lab results showed and told me I needed to get James to an Immunologist asap. Luckily, Geoff is amazingly calm in situations like these and helped me get "back on track", pull it together and figure out what we needed to do for James. We made an appointment with an Immunologist for James, started treatment (antibiotic everyday) and had to get more bloodwork- which is the most horrificly, awful, horrible thing in the world:( I of course ended up switching Immunologists, I just didn't have a great feel from the him, and are with an Immunologist who is very black and white, no nonsense and straight-on. This is what we needed.

This Immunologist believed James had an "immature" immune system and he was very hopeful that he would grow out of this by the age of 2. However, we needed to take James back to his ENT and have his tonsils and adenoids removed. By the age of 16 months, James had tubes placed, adenoids removed and then tonsils and adenoids removed (adenoids grow back, did you know that?)

That brings us up to James' 2nd birthday. We went in for lab work, we were so confident he was going to be great! James had not been sick since his tonsils and adenoids were removed! He was great! Then, his Immunologist sends us the results....his levels DROPPED lower than his initial numbers:( He is not absorbing his vaccinations and will need to get boosters for his past vaccinations in addition to new ones. Kick to the gut and thrown off track again. BUT, the positive is he has not been sick and the antibiotic is doing its job.
 

Four weeks after his boosters, we went in for MORE blookwork and to see how his body was responding to his recent vaccinations...results:
"The response to vaccine was vigorous which is very encouraging. The abnormal values in the CBC suggest that allergy will be important but there are no other problems with the CBC and clotting cells are normal. The bruising is a function of age, not a medical problem."
 

We could not have asked for better news. Geoff and I will take James to see his doctor on Tuesday to discuss his results and where we go from here.

So, we will just keep chugging along......

Trying to stay afloat

Blogging has always been my go to for stress relief and ability to escape into priceless memories that I never want to forget. Reliving trips to the beach, Birthday Parties and Holidays are my "icing on the cake" if you will. Unfortunately, not everything can be sunshine, rainbows and unicorns. Lets face it, life is hard and bad things happen. It is through these hard times that we come out on the other end stronger, better people. I have gone back and forth as to if I should write about what has gone on with our family over the past few months, but then I decided it was an experience our family went through, together, and is something we will never forget nor do I want to forget because it has made me the stronger person I am today.

We ended and began our year with my mom becoming very ill after Christmas while visiting my brother and his family in Alabama. There is nothing more life altering than receiving a phone call, right after walking in from a 12 hour car ride home from Atlanta, that your mom is very sick and the doctors do not know if she will make it. What!?!? I had just talked to her less than 24 hours before! Time stood still. Numbness came in and all I could do was look at Geoff for direction. Thank goodness Geoff deals well in stressful situations because I sure as hell do not! A plane ride later we arrived to Mobile and I walked in to ICU where a woman laid, hooked up to machines that were breathing for her and giving her medicine. That person in the bed was not my mom, all I kept thinking to myself was that this was all a dream and I did not understand why I could not wake up. I went to her bedside and held her hand, told her I loved her and that we were all there. I begged her to wake up and to hold on, that it was not her time and she had so much more living to do. I told her about James's new dance moves and Michael's recent belt he received in karate. I told her she would have been so proud and that the boys needed their Annie.

It was not her time. We were not ready. That was the most heart-wrenchingly painful time of my life and I kept looking from my sister to my Dad to my brother wondering what we were going to do if she did not come back to us.
Sepsis is a nasty, nasty thing. It invades every part of your being. That night, the doctors told us there was nothing more they could do and that it was in God's hands.
Well, as many of you know, my Mom is a stubborn, hard headed woman and she was not going down without a fight. She came back to us and boy was she very much alive! She had a long road ahead of her and she would have to continue with her spunk to get out of there, but she did it. After a month and a heart double bypass later, my Dad drove our Annie back to Dallas and we were all so happy to have her home.


And if this wasn't enough panic and heartache for a lifetime, let alone a year, Michael started to have strong, horrific abdominal pains that began to increase in frequency and duration. Geoff and I paid close attention and tried to alter his diet and increase fluids, thinking that might have something to do with his "episodes". We consulted with his pediatrician and his GI doctor, searching for answers to help our little boy. We went to Children's ER countless times, with each visit ending in more frustration and confusion. The biggest problem was Michael's pain would come and go and of course, buy the time we got to the ER, the pain was gone, and the nurses and doctors looked at us like we were crazy. The first time Michael was admitted, the doctors believed he was severely constipated and discovered he had a cyst on his umbilical cord, or where it had once been. We were assured this was not the cause for pain and told us to follow up with the surgeon after our stay at the hospital. Michael had to have a NG tube to give him the medicine needed to "clear him out" and restore his digestive tract. After 4 days, Michael was released and we thought our little boy was "fixed".

Unfortunately, this was not the case and the pain continued for 4 days until finally his GI doctor ordered us to go immediately to the hospital for she was witness to his painful episodes that were now lasting almost 20 minutes. These were the most heartbreaking things to watch. Michael would hunch in a ball and scream and cry and beg for the pain to stop. He would look to Geoff and I for help and we were just devastated that we could offer no relief. It was the most helpless feeling in the world to know your child is in pain and there was absolutely nothing you could do to help him. I would try to hold him while he launched his little body back and forth, begging for the pain to stop. The doctors still did not believe this cyst could be the culprit for the problem, however, the surgeon finally agreed to do surgery to remove the cyst and see if there was anything else going on that they could not see.
I would never wish anything on my children, however, we prayed and prayed that they would find an answer to what was causing Michael all of this pain. After 2 hours in surgery, Geoff and I were called into a room to discuss the results. The doctor had 2 8x10 pictures showing Michael had what is called a Meckel's diverticulum along with an infected cyst and that his small intestines, bladder and arteries were all connected to it, thus causing all of his pain. The doctor removed the diverticulum and cyst, stapled off his organs, and, Michael ENT came in and reinserted tubes, and took out his tonsils and adenoids as well since he had been experiencing recurrent strep and had moderate hearing loss due to fluid in his ears. Needless to say, our little boy had been put through the ringer, literally, and we were all looking forward to the day he would no longer be in pain. Michael stayed in the hospital for 7 days and was such a brave little boy. He has gone through more than most people experience in a lifetime and he is still such a happy, active, affectionate little boy.

Geoff and I count our blessings everyday and know how important it is to be an advocate for our kids. They might be too little for their voice to be heard but their Mama sure as heck will be sure they are heard. I have always trusted my instincts when it comes to the boys and that is solidified now more than ever.

I was given a new perspective on my life and realized my priorities were not where they needed be. More than anything, now I laugh harder, live fuller and love stronger. My family is my world and Geoff and I count our blessings every night.We do not take anything for granted and we try to breathe in every giggle, every cuddle and every grin because we know how unpredictable life can be.