Morgan - 2011 in review

It's been a little while since we have updated Morgan's blog, so I figured I would just give you a whole year in review. And what a year it has been! As of January, we had been very lucky as far as Morgan's health goes. He was almost 2 years old and hadn't been hospitalized once during those 2 years, with the exception of the 5 days he spent in the NICU when he was born. His doctors told us to expect him to be in the hospital his first winter, but we managed to keep him out with really no problems. So when December 2010/January 2011 rolled around, we knew what we needed to do. His first winter we kept him very isolated. He rarely left the house, unless is was absolutely necessary. We knew hospitalizations were inevitable, but we were going to do anything within our power to keep him out. So, in January when he started coughing really bad and was showing signs of getting sick, we knew our luck had run out. It's usually difficult to tell when he gets sick, since even then his attitude never changes. He is always so happy, running around and playing. The doctors and nurses at Children's Hospital even ask how we know that he's sick. But as parents, you just know your child well enough to know. So when he went into the hospital in January, we still thought that once every 2 years in the hospital was do-able. Then came stays in February, March, May, August, twice in October, and again in November. The second time in October and the one in November probably could have been avoided. Both times in October he was sent home early, after 4 or 5 days, when we knew he was still sick. But the hospital said he wasn't sick, and sent him home. We knew better, that we would be back. And we were. His average stay is 10 days-2 weeks, so in all he was in the hospital 8 times for around 3 months total in 2011. Morgan, along with anyone with CF, can pick up lung infections very easily. He has daily vest treatments, medications, and inhalers, yet he contracts MRSA and pseudomonas no matter how hard we try. Something like an infection, or even the common cold which is no big deal to most of us, can be fatal for him if not treated. When he is in the hospital, they "up" his treatments to 4 times a day, and gets a very heavy arsenal of antibiotics round the clock. He always gets a PICC line put in. It's so much easier than having to keep putting in IV's all the time. His little arms are so scarred up already. They said if this is going to be his life, with so many hospital stays, a port will be put in and stay in so they can just hook up to that every time he's there. It would make things so much easier, but we aren't exactly thrilled at the idea of him having the surgery to have it put in. Whatever is best for him, is what we'll do.

This year we spent my(Dave) birthday, Mother's Day, and Thanksgiving in the hospital. We were very close to being there for Christmas. At the time I'm writing this, Morgan is getting sick again and they are starting him on new meds. So, there's still time to be there for New Year's! Not that any of that matters. If he is sick, the hospital is where we need to be. Children's Hospital is incredible. They have been so good to us, and they really love Morgan. We have gotten to know most of the nurses, doctors, and RT's by name. We have become a family.

Our newest chapter began just a few weeks ago. Morgan has just been diagnosed with autism, to go with everything else. Even though we saw the signs, and had doctors tell us they pretty much knew he had it, it was still something we didn't want to believe. This is all still new to us. He has appointments in February to start the ball rolling, so we'll see how that goes. 

So, his life was fairly trouble free for the first 2 years. This past year, on the other hand, was very difficult. But, he takes everything in stride. His attitude never changes. Always cheerful, always smiling. He takes whatever they dish out. He has had to endure more this year than most adults have in their entire lifetime. Of course, he doesn't understand that this will be his life, and he will have to go through this forever. Unless there is a cure, which as of today, there is none. In a way, we dread the day that we have to explain this all to him. Explain why he has to take all these meds, do all these treatments, and can't live his life the same way other kids live theirs. But we'll worry about that when that day comes. As long as he keeps fighting, we'll keep fighting for him. And he IS a fighter! For now, we will just take things the same way we always take them. One day at a time...

i Pray

I pray..
I pray that you never have to look at your babies and worry that you might lose them someday..
I pray that you never have to face what I do on a daily basis...

I pray that no one ever turns talks ill of you to your family and in turn have your family talk ill of you...
I pray that when you struggle every day that when you need some compassion, you are not confronted with someone who is only worried how it effects them, even when what is happening is completely out of your control...
I pray that if that ever happens to you, you have someone who will listen...
I pray that no one ever talks about you to neighbors and tells your secrets..
I pray that no one ever tries and succeeds at turning your family against you... 

I pray that if you ever tell someone of your struggles, they will not turn them around to hurt you...

I pray that you never have to sit and cry because someone you thought was your family has turned on you and also brought the rest of the family with them...

Most of all I pray you stop....

i am not perfect.

i never once claimed to be. I’m not a perfect mom or not even a perfect human being…we are all faulty.

that is how we are made.

but we are also taught and it’s gods greatest hope that in times when we feel our worst or the enemy is attacking our spirit, it’s THEN when we’re to lean on god and really focus on Him..and to not let the enemy determine our paths born out of lies.

I’m so broken that you let him win.

you chose to let him get between you and me.

our family.

the words you are speaking against me to almost complete strangers and family are tragic, and hurtful. but my heart deep down believes that you know just as well as i do that you’re hurt. deeply hurt. and never gave me the chance to go in and try to fix it. you chose the easy way out…to walk away, claiming to not care, to heap coals on my head and slander mine and my husbands name to anyone who will listen. 

i’m devastated by your actions and harsh words

i pray you will stop.

i pray your heart will soften.. 

i pray for peace in your soul and your home and in the lives of your children. 

i pray for your circumstances whatever they may be. 

i pray for you.

because i love you.

and while i wish i could close my heart sometimes when it’s been crushed over and over again i simply cannot.

so i pray for you.

for me.

for us.

for this horrible circumstance.

my head will never come out of this “fog” this is my life, and you can’t imagine the pain nor the burden i bare.

you of all people know my story.

you know of our struggles.

But you continued on this path that has broken up our families and left nothing but pain behind.

So..as I have in the past and I will continue in the future..I pray...because that is the only way I know to get through the pain I am going through. 

*thank you Sarah, I have "borrowed" some of your thoughts. It seems as though we are on the same path right now**

Climb For A Cure

This is the 21st annual Climb For A Cure to benefit Cystic Fibrosis. It's a climb to the top of the US Bank Building, the tallest building in Milwaukee. All money raised through donations goes directly to the Cystic Fibrosis Foundation for research for a cure. Everyone is welcome to participate in this event, either individually or on a team of 3 people. I participated in this event last year and will be doing it again this year. Any donations to my team can be done by following the link below directly to my homepage. Thank you all for your help and support.

Love,

Dave, Tiffany, and Morgan


http://www.cff.org/LWC/dsp_DonationPage.cfm?idEvent=12012&idUser=423872

Cystic Fibrosis- our daily battle

Please take a minute to watch this video. It says a lot about what Morgan goes through on a daily basis and tells what CF is and what it can do. This is why my son is my hero. He does more treatments in one week than most people do in a year. He takes more pills in one day than most people take in a month. All to live...

Photo and video editing at www.OneTrueMedia.com

NO AIR= Crabby Morgan and Crabby Mommy

Today was a very fun day in the Nessler house! The air went out yesterday, which was ok. It was pretty cool last night. But today it is 91 and humid outside and with no air, it was quite hot in the house! Poor Morgan. I think I put more salt in his Gatorade than I ever have. Just to make sure he wouldn't dehydrate. It worked. So did the cool baths and the fan blowing on him while he slept! But it is fixed now and Mommy is one happy camper!  So is Morgan. He was pretty crabby today and I am sure it was from being so hot. I know I was. So THANK YOU LOUIE for fixing the air conditioning! Lord knows I was not looking forward to a sleepless night in the heat! I would not have slept worrying about Morgan being too hot and not having enough fluids. But who the hell can sleep when its hot and humid anyway? YUCK! Dave will be happy too when he gets home. He will come into a cool house from driving in the heat all day with no air in his work truck. Hopefully he can shower and get some rest before he returns to his night job tonight.Without hurting his back! :) I cant wait til FALL! I want to wear my sweatshirts and jeans and be outside with Morgan playing. SO HURRY UP OCTOBER!

How Morgan spent the day..in his jammie shorts with a bottle of salty Gatorade!

Conner Jones Story

I would like to share with you the story of Conner Jones. He was 7 years old and had prune belly syndrome and Cystic Fibrosis. Conner lost his fight a couple of weeks ago. I cannot tell you how the loss of this little boy has hit home for Dave and I. We spent the week following the loss of Conner crying, reflecting on how this could someday be our son. As much as you don't want to think that way, when you lose someone so young to the same disease, you cant help but think about it. Conner was a fighter. He fought for 7 years. He was a brave, special little boy who's live and story has touched so many in the CF Community and out of it as well. All across the country and other countries as well there was a balloon release in celebration of Conner's life on the day he was laid to rest. Our family honored Conner as well. I would like to think that if the same fate happened to Morgan, the CF community would do the same for him. I know they would. I found out, with the passing of Conner how tight and loving the CF family is. I think I have found over 25 new CF friends on Facebook. One even in my old hometown, Albert Lea. It is a small world. Conner's mother, Sarah, has got to be one of the strongest women I have ever known. I don't know how she did all that she did after losing her son. She is an inspiration to me. I have learned so much from reading her posts on Facebook and from her blog. She lets all her feelings out. Good or bad. She has gone on telling Conner's story and has done so much for the CF community and continuing to fight for a cure for CF.

On most days, I try not to worry what the future has in store for Morgan. But, again, I have to say that this has made me stop and think. What will happen? Will my son grow up and do all the things other little boys do? Will he get married? Will he have a family. Once I had a horrible dream that my mother was here. (She passed when I was 7) and she was holding Morgan and I remember thinking "oh Mom, you are here and you get to hold your grandson" and she looked at me and said " Honey, I have to take Morgan with me now" and my heart dropped. How would I deal with that? How would Dave deal with that? And his sister, Jac and brother, Bubby? Who love Morgan more than I can possibly tell you. This little boy had touched everyone he comes in contact with. I know that when and if that time comes, he will be with God, and my mom, his papa and Auntie Kris. And be loved by all that have gone to Heaven before him. He will be in good hands. But, being selfish, I dont want anyone to have him but Dave and I. We tried for so long to have him. 5 years of trying and we finally got pregnant the week of my mother's birthday. And when he was born, I got to pick the day. It was right around my mom & dad's anniversary and my grandparents. I figured it was fate, that was the day I picked. He was coming on that day like it or not! It was special to me. And he was.

Life is not all sunshine and roses with CF. Its hard. Its hard seeing your little boy having to do treatments. To know that there are things he cannot do. He cant be outside if its too hot and humid. In the winter, we are in, for fear of infection floating around the air if we go out. But, we managed to keep him out of the hospital for his 1st winter. When his CF team told me, that most likely he will be hospitalized. Not on my watch! It meant errands had to be done after the kids got home from school and could watch Morgan. Or when Dave got home. It was all worth it! And we have a wonderful support system. His Auntie J who lives next door and her 2 girls who love Morgan more than life itself. The sun rises and sets on that little boy in their eyes. And Dave's mom, who stayed with Morgan after getting a very "crash course" on all his medications and feeding schedule, while I was in the hospital for over a month this winter (HA we managed to keep Morgan out of the hospital but Mommy was not so lucky). And my kids, who help me out so much! They learned all about Morgan's treatments, medications, what he can eat, what he SHOULD eat. They are always on the lookout for those high calorie, high fat meals! And his god mother, Auntie Pam and Uncle Josh! I cannot begin to thank Josh for pulling together a benefit for Morgan in March. It was amazing! And done all out of love for this little boy.

I think I am done going on and on for now. Some of these might just be me getting what is in my head out. But I did want to share Conner's story and let you know how much that little boy has touched my heart and made me cherish each moment I have with my little boy. I know that Conner is looking out for Morgan and all the CF kids out there. He is waiting and watching...with LOVE LOVE LOVE! ALWAYS ALWAYS ALWAYS. As Sarah would say.....

Morgan's Birth

Morgan William Nessler was born on March 27, 2009 at 9:39 am and weighed 9 lbs 13 oz. Shortly after being born his blood sugar level dropped very low, as Tiffany was diabetic during her pregnancy. Morgan immediately had to be put on an IV of sugar water to help regulate his levels. He also had to have his blood sugar tested every hour by pricking his feet and getting his blood tested. He did pretty well with this, although his poor little feet had little holes and dried blood all over them. Shortly after, Morgan developed some breathing problems. He would breathe quite rapidly. Not really like he was out of breath, just short, fast breaths. After more tests they found that Morgan had a heart murmur and a small hole in his heart. The doctors told us not to worry, that most of the time these things will heal themselves(which it eventually did), but at that point I don't think anything could be scarier than finding out your new born child has a hole in his heart. Morgan ended up spending 5 days in the NICU. We also spent those 5 days in the hospital with him. We weren't about to go home without Morgan! Every day the doctors would tell us that "maybe tomorrow" he could sleep in our room with us, or possibly go home, and every day that would turn into another "maybe tomorrow." I realize that 5 days isn't that long of a time, but to us it felt like an eternity. Eventually that 5th day came and we were able to take Morgan home. He was doing quite well at home and his doctor appointments showed improvements in his breathing and his heart, and his blood levels were right where they should be. Then on May 6th we received a call that Morgan had tested positive for Cystic Fibrosis. Wisconsin is one of the only states that does screening for CF at birth, THANK GOD! We were confused and scared. We had heard of CF before, but didn't know the first thing about it. In a nutshell it's a respiratory disease that mainly affects the lungs. The body creates too much mucus and there's no way to get rid of it, especially in babies. It can cause infections and other serious problems. Through treatments and medications it is treatable, but not curable, and can be fatal. We had a TON of questions. We met with his team of doctors at Children's Hospital to go over the plan. Let me just say that his team is absolutely incredible! We are so blessed to have each and every one of them helping our son stay healthy. The day we met with them was a very long and emotional day, but we walked out of there with a little more confidence and understanding about CF. We said to each other, "We can do this. We HAVE to do this." His life is in our hands. Treatments and medications began right away. We never thought that we wouldn't be able to do this, but at times I think any normal person will think "HOW" are we gonna be able to do this? We do it like anything else. One day at a time! As I said, there is no cure for CF. Life expectancy right now is 37 years, and that's in the best case scenario. However, advancements and research are extending that number all the time. We can't allow ourselves to look too far into the future. We can't allow ourselves to think "what if." We have to live for today and celebrate Morgan's life today. We can worry about tomorrow when tomorrow comes. Research is improving all the time, medications are improving all the time. We have all the confidence in the world that there will be a cure for CF in Morgan's lifetime. There's no choice but to believe that. Today Morgan is a normal, healthy boy. His checkups are spotless, he is right on track with his weight, and he is having no side effects because of his CF. There is no reason that he won't grow up to be a normal kid just like any other child. He can do whatever he wants to do. CF does not define him. Sure there will be challenges and difficulties along the way, but we'll worry about those when we get there.....