Nothing is Wrong :)

Taking Benjamin out, we get a good number of looks and sweet comments. Most comments consist of “bless his heart,” “such an angel,” and “I’ll be praying for you.”. None of this bothers me. Maybe it’s because of my ten years working with kids of different abilities, and maybe it’s because I am so happy and proud of Benjamin that I could really care less. No one has every tried to be rude, just curious. Most times I smile, or make a silly comment once they are out of sight like “yes, he has a tube out of his neck…we are aware.” (Always with a smile, never upset or angry)
One misconception is that Benjamin is “sick.” I feel like I never respond appropriately when people mention the word “sick” when talking about Benjamin. He has been sick and in the hospital before, but on a normal day, Benjamin is not “sick.” People avoid “sick” people. “Sickness” many times is contagious. Benjamin is a happy, and growing little boy. Without the vent and wheelchair, Benjamin looks healthier than many kids his age.

Yesterday was the second time that I felt as though I should have been more prepared for an answer, but I was a little caught off guard. While waiting for an ultrasound, a nice (but a little nosey) gentleman asked, “what’s wrong with him?” I replied (smiling) that he had a rare genetic disorder with quite a list to follow. I sat there, angry at my answer, wishing and knowing I should have replied “nothing.” I know he didn’t mean to be rude, but there is “nothing” “wrong” with Benjamin. What if I would have said, “what’s wrong with you?” (He was the one sitting in pants and a hospital gown.) We all have our issues, some are just more visible than others. I know the gentleman didn’t mean any harm, but I think we should all work on changing the perception that there is something “wrong” with Benjamin and people with different abilities. He is perfect to God and he is perfect to us.

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Just A Swingin’

We finally found a good use for the pull-up bar. (Other than using it to dry clothes) With a tumbleform chair, a play school toddler swing, and a random buckle found around the house, Benjamin is finally able to swing again since growing out of the infant swing.

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Benny and the Jets

Right before Benjamin arrived home from the NICU, I had, what can only be described now as, a tantrum. :/ going through Benjamin’s closet, I removed every set of long pajamas, upset that he would have to wear constant monitoring on his foot. (Long pajamas make wearing the monitor a little more difficult). At the time, I didn’t feel upset or angry, but now I do realize it was a bit dramatic.

For Christmas, one of Benjamin’s nurses bought him a one piece, long pajama outfit with spaceships on it. (Benjamin’s signature design) It was absolutely adorable, but some of those same feelings resurfaced. This time though, it was different. It reminded me not only how far Benjamin had come, but also how far I had come. This outfit served as a trophy, our reward for learning and growing together. (I know this may be difficult to understand for most, but for me it is very clear.)

This morning as Benjamin was lying on his pillow, I asked the girls if they had told Benjamin goodbye before school. Lennon leaned down, Benjamin extended his arm, and for the first time reached for Lennon. It may not have been a gentle touch, it was actually more like a slap, but it meant so much to Lennon and me. Such a beautiful moment, with such remarkable kiddos, in his awesome spaceship pajamas.

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He Will Provide

Whether it was the recovery from a week long hospital stay, a culmination of bad news, not having a car, or the rainy weather, this week had been pretty stressful. Where do I even begin…Monday morning it all started off with a discussion with Medicaid. Why should I be surprised that Benjamin will probably lose his Medicaid soon? Why should I think that a system my family has paid into for so many years and never asked anything in return be helpful? (Sense the sarcasm and frustration) All I can do is pray and remember that God always provides for us what we need. Ten minutes later, I received a call from the pharmacy about Benjamin’s Synagis shot (for RSV). Of course…a new year with a new deductible and a $2000 dollar shot. No problem, thanks to our generous friends and family and a magnificent benefit, this will be covered. Like I said, God always provides. This much action before 10:00 am can get a person a little down to say the least. Yes, there are a few programs that help with funding for the Synagis shot, but of course, we were denied twice.

Monday, Tuesday, and Wednesday, Benjamin continued to improve. We had started to sit him up a bit, and he was back to his silly self. All was great until Wednesday night. KC and I were moving Benjamin back to his room, when I placed him in his bed, and he was white as a ghost. His lung had collapsed again. Benjamin gets the same look every time. I grabbed the suction, and watched the monitor. His O2 sats never dropped, but his heart rate started to rise. We started CPT (cupping on his chest to loosen secretions) with frequent suctioning, and continued with this every ten minutes for 1 to two hours. His color returned, but his heart rate exceeded 200 beats per minute, and he kept a fever until the morning. Benjamin, of course, acted as though nothing had happened. He was smiling and cooing at KC. You just can’t keep this kid down. The next day, he was back to himself again.

By this point, I was a little overwhelmed. How often could Benjamin’s lung collapse? Will we always be able to manage it at home? Why are there no resources for families who have worked so hard to provide for not only their family, but also other families? All I could do is keep repeating to myself, “God will provide.” Mom reminded me to let God worry for us, because He does a much better job at it. I told her I needed a conveyer belt straight to Him to send my worries. 🙂

Today, we had a visit with the pulmonologist, and he agreed that Benjamin looked great. We can now stop the antibiotics, and we talked about other options to loosen up the secretions in Benjamin’s chest. They placed a vest on him today that shakes “gently” to clear his lungs. (I say “gently” with a smile. Mom had to close her eyes.) Benjamin, being on the small side, shook from his nose to his toes. They will be able to turn down the intensity some, and as he grows larger, it shouldn’t look as violent. 🙂

We have also been without our van this week since we were having a ramp and tie downs put in. I haven’t really talked about it before with fear of jinxing the whole project. Now the work is complete, and I can give credit where credit is due. After months of trying to gain assistance through the state for a ramp, I started looking into other options. I contacted the MDA (PLEASE DONATE TO OUR MUSCLE WALK), and they were able to give me a few ideas. One organization they had just found out about was the Clifton Lewis Good Life Foundation. (another great place to donate) Our MDA group had met Cliff at a recent fundraiser for ALS. Cliff has Limb Girdle Muscular Dystrophy and spends his time helping others improve their quality of life. He is such an amazing person and has an amazing organization. Cliff agreed to help us adapt our vehicle. As I gradually started to receive pieces of the adaptive equipment for the van, we were hitting road blocks on finding someone to adapt the van for us. I started to think things were falling through, but Cliff never gave up and continued on his search. After some time, Prestige Auto Sound agreed to take a look at the van. They were determined to do this for us and do it right. Well, today we picked up the completed van. It looks fantastic, and even better than I ever expected. I made sure to bring Benjamin with me. I wanted them to meet our little angel. I wanted them to be able to put a face to the job. I hugged everyone with tears in my eyes. Before we left, everyone’s eyes were a little red. I think I even noticed a few watery eyes amongst some of the men. 🙂 They were such wonderful people to work with, and I would highly recommend them to anyone.

God will provide. Not only did God provide us with what we needed through these generous people, I believe God provided something for them through Benjamin. I hope they realize how appreciative we are for what they have done. With Benjamin, I have seen the best in people, in a world that can be so foggy with sadness. Benjamin just brings it out of people.

Thanks so much to The Clifton Lewis Good Life Foundation and Prestige Auto Sound for providing Benjamin with more opportunities for “The Good Life.”

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Home Sweet Home

Early Friday morning, the lady who takes the blood pressure and temperature woke me up. She asked me if Benjamin’s sats usually sit that low. I jumped up rolled him over to suction him, and he was extremely pale. I called in the nurse and they called in the PICU physician. Another x ray was taken, and the bottom half of Benjamin’s left lung had collapsed again. Ughhh! They decided to increase the chest therapy, and they would round on him early in the morning to set up a game plan. Later on that morning, Benjamin was assessed by many people, including his Pulmonologist (he had been on vacation). I was so relieved to see him. His main concern was getting Benjamin out of the hospital. It was decided to go ahead and head home since everything that was being done at the hospital can be done at home. I was a little skeptical, but trusting our physician and knowing we were fully capable, I agreed and started packing up.

On the way home, Benjamin still looked pale and tired. I questioned my choice to take him home, and was overwhelmed with all the choices we have to make for Benjamin. I lost it, angry and upset. While most parents are deciding on what schools to send there children to, I am making decisions that affect Benjamin’s quality or quantity of life. KC consoled and reassured me that we were making all the best decisions for Benjamin. Though I am very optimistic and hopeful, I do have my moments. My moment had to be over as soon as we got out of the car, because it is no longer about me, it is about Benjamin, and making him comfortable at home. Home Sweet Home.

Well, I should have never doubted the pulmonologist, because Benjamin looks wonderful. He has really improved since being home. He is still on oxygen, but his heart rate has returned to normal, and he has started smiling, kissing, and playing again. Yesterday during his home speech session, he was able to vocalize the entire session. His speech therapist, who has been on maternity leave, was very impressed.

So how do we avoid this again? Well, I refuse to keep him locked up in his room, we will continue to get out, and we will continue to avoid people with illnesses. I am sure Lennon and Isla will also continue to bring home germs, so all we can do is pray and continue our excessive use of hand sanitizer.

Thank you so much for all the prayers. We are all happy to be home.

Breaking Out Of PICU

We have made it to the Peds Floor. Benjamin has not had any signs of fever since yesterday, and tolerated the transition to the home vent well, so we have finally graduated out of PICU. Of course, as soon as we get to the floor Benjamin has fever. (I am speechless). Cultures from yesterday continue to be negative, so the fever is a mystery.

On Hold

Benjamin had a great day yesterday. He started playing, smiling, and dancing again (he does an adorable shoulder shrug). It appeared as though he might be heading in the right direction until last night when Benjamin started with a low fever. The fever continued throughout the day. It is controlled temporarily with Tylenol, but then goes back up once the Tylenol wears off. When his fever is just slightly elevated, he becomes lethargic again and drifts back off to sleep.

Over the past 24 hours, the respiratory therapists have been able to wean his oxygen a bit. Tonight, however, Benjamin’s O2 sats are low and the oxygen had to be increased. We are waiting for cultures to return to see if they can find a reason for the new fever. If nothing comes up from the trach or blood cultures, they might “tap” the shunt to test for an infection. Our plans to move to the floor have been put on hold.

2013: Starting With a Bang

2013 started with a bang, or let me reword that, an explosion. I woke up around 2 am with four nurses running around Benjamin’s bed. I jumped up asking, “is he ok?!” He was definitely ok, but had made such an explosion in his diaper, it took four people to assess and manage the damage. An hour later, I was woken up by Benjamin being suctioned. Everything is still so thick in his lungs that suctioning is a little more involved than normal, and it really takes a lot out of him. Another hour later, it was x-ray. Yes, I am a little tired, but no, please don’t tell me how tired I look. 🙂

As I wait to talk to the physician to discuss our game plan, I have a moment of quiet time to think about the past year. It is very hard to find one word that can describe the past year appropriately. Actually, it is very hard to describe it at all. 2012 was filled with happiness, tears, anxiety, fear, joy, faith, friends (new and old), family, fatigue, and energy. Who knew that these 12 months would hold more tears than any previous year, but also more smiles and joy? I do know that the “downs” in life help us truly appreciate the “ups.” Though our life has not turned out as planned, and though we have spent over a third of the year in a hospital, I am glad to do it because it means I still have all three of my children. I think about the wonderful people I have met, new relationships we have made, and bonds that have been made stronger. I think about how much I have grown emotionally, mentally, and religiously. Even better is that I have watched people grow around me. Benjamin just changes people. He is barely able to move, but get to know him, and you will be forever changed. Benjamin doesn’t do this alone. Lennon and Isla have also taught us so many things about love and acceptance. All of us should strive to be more childlike. I have watched friends and family return to their faith, and I have seen the best brought out of people.

So, New Year’s Resolutions…
I know most people usually chose resolutions that concern themselves…lose weight, exercise,make more money. My goal for the New Year is to keep my family alive (most people wouldn’t have considered that one), happy, and healthy. Also, I want to make sure I not only live every day like it’s my last, I want to live every day like it could be the last day on earth for every person that I come in contact with. Can you imagine a world where everyone strived for that? Now, I am definitely not perfect, and just like all New Year’s Resolutions, we can stray from our goal, but I think this is a pretty good start.

Thank you so much to everyone who has made this such an amazing year. God bless, and best wishes for 2013. I end with one last thought. It is not what happens in our life that makes us who we are, it is how we handle what happens to us that makes us who we are.

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