Changes are happening!

After realizing it has been over seven months since my last post I decided it was time to post and make some changes, the biggest change being the need to update more often!  My goal is to update at least weekly so our friends and family who are afar can know what is going on with James.  With that being said, I have a lot to update on so bear with me as I begin to write.

Back in September, I took James in to his primary pediatrician because his stomach was extremely distended.  At that time lab work was ordered to see if James was suffering from a food allergies and an x-ray of of his stomach was also done.  His lab work came back normal; however the x-ray did not:  the results showed his colon was extremely full of stool, causing his large intestine to push on his diaphragm.  Our weekend plans were quickly canceled and we headed to the hospital and planned a weekend of a clean out for James.  He had an NG tube in his nose and received approximately 10L of Golytely to help his body pass his stool.  It was a long weekend for all of us but we were able to go home after two days, when an x-ray showed that he no longer was full of stool.  

September 13, 2014

After our discharge from the hospital we began seeing a pediatric gastroenterologist to assist us with coming up with a regiment to help keep James regular.  Unfortunately, his stomach began to become more and more distended and quickly returned to the size it had been prior to his hospitalization.  He was passing stool regularly and we were unsure what the cause of his distension was.  On March 11, 2015 James had a contrast study done which would allow physicians to see his colon.  After the pediatric radiologist looked at his x-ray we were sent to meet with the pediatric surgeon because things didn't look quite right.  

The surgeon we met with, Dr. Downing, told us that he was 99% sure James had Hirschsprung's Disease based on the contrast study and previous history.  He explained to my husband and I that typically children are diagnosed with Hirschsprung's once they start eating solids and it was uncommon for a toddler to receive a diagnosis such as this.  Dr. Downing advised us to consider a colostomy for James to give his colon time to rest and return to normal size and that James would have another surgery in approximately six weeks to take down the colostomy.  We scheduled the surgery and went home to talk about things and weigh the pros and cons as a family...ultimately we knew we had no choice but to go ahead with the colostomy creation for James.  

On March 17th, 2015 James had his surgery in which his colostomy was created and a biopsy of his colon obtained.  Dr. Downing received the pathology results the day after James' procedure and the results were not what we had expected...the results of James' biopsy came back negative for Hirschsprung's Disease.  We were disappointed to hear this because with Hirschsprung's things could be easily managed...now we were left with a series of questions, including what is going on with our son causing him to have such an enlarged colon.  Dr. Downing educated us on megacolon  and the seriousness of the diagnosis.  Hearing that your child has a life threatening condition in which the cause/reason is unknown is the worst feeling anyone can endure.  I felt like someone had punched me in the stomach and wondered how I would tell my husband, who was still at work.  Thankfully, Dr. Downing stayed late to be able to share the results of the biopsy with my husband.  Dr. Downing prepared us that we have a long road ahead of us to determine the cause of why James has such an enlarged colon.  

Up to play and eat a snack.

Our hospital stay ended up being much longer than anticipated.  We were told to expect to be in the hospital overnight and James would bounce back quickly, however; that proved not to be the case.  After six long nights in the hospital we were able to come home on  March 23rd, 2015.  We were lucky to have my mom spend time at the hospital with us and were blessed with visits from close friends, meals, phone calls and numerous text messages checking on us to see how were were doing.  Fluctuating temperatures kept us much longer than anticipated; while the exact cause of the fevers remains unknown, it is suspected it was due to some of James' colon dying (which the surgeon anticipated).  

Calling Dr. Downing and telling him that he is ready to be discharged.  

We are adjusting to life with a colostomy.  James is handling it much better than we had anticipated; rarely touching it or playing with it.  It took some getting used to for him; as he didn't like when the plastic bag touched his skin when he walked but with the help of some big boy boxer briefs he is adjusting.  James has lost five inches around his stomach which is incredible for a little guy his size.  His distension is gone and for the first time in years he has a flat stomach.  At this point we do not have an exact date when his colostomy can come down, we know that we are looking at 3-6 months verses the initial 6 weeks.  While it's disappointing, we know that in the big picture 3-6 months is a short amount of time.  Our little boy is finally getting his spunk back and that is the best part about this; we missed his personality and are so happy to see it shine through again.  Without the support of our friends and family; this would have been much more difficult than it already has been to deal with.  Please feel free to ask questions, we are learning a lot about things we never knew about before and are happy to answer any questions people may have.

Some days are better than others

It's hard to believe that Labor Day weekend is here and it is the last official weekend of summer.  I'm not ready for fall, although with the crazy weather we've had this summer we have had a taste of fall quite a few times since July. 

Two friends in two days told me that they were pregnant.  I did my best to put on my happy face and say "congratulations, I'm so happy for you!" when inside I was truly aching.  It's not a fertility issue for us, it's the reality that we have a toddler who has more needs than your average toddler; making it much more difficult to think about expanding our family now or ever.  I was instantly angry and bitter, thinking to myself, "it must be nice to have kids with no extra needs so you can just keep reproducing."  Needless to say some days are better than others...but I certainly don't ask for sympathy from anyone.  I am honored to be James' momma and all the responsibilities that come along with that title. 

This week brought a first for James--his first trip to Lake Michigan.  He enjoyed the beach and standing with his toys in the sand.  Whenever the water would come in he would giggle hysterically, it was so sweet to watch. 

This morning while James was getting dressed he took the washcloth from me and began to wash himself.  It was a bittersweet moment, knowing that he is gaining independence.  He washed his back (well, he did the best he could) and even made sure to wash his feet!  After washing up, James attempted to put his socks on.  This is a skill most kids don't master until they're four so the fact that he hasn't mastered it yet is not concerning.  We'll keep practicing and with his level of determination and resiliency he'll get it in no time!

Have a safe and fun Labor Day weekend!

August is coming to an end!

Wow, it's hard to believe that August has nearly come and gone!  This week Dave went back to work full time and I have had the opportunity to stay home with James more this week, making me one happy momma!  I didn't realize how much I missed our days together and I was so thankful to have them back! 

James began speech therapy in our home this week.  The speech and language pathologist gave us a lot of things to work on with James and we began as soon as she left.  Today I saw James use one of the three signs we have been working VERY hard on and I couldn't help but smile.  He is such a determined little boy and is willing to learn new things. 

James and I had the opportunity to go to a going away play date for friends of ours that are moving out of state.  We went to a park that we hadn't been to at all this summer and were reminded how much we love the park.  The park was handicapped accessible and James LOVED running down the ramp with his walker.  My heart was so happy to see him enjoying himself and playing like the other kids at the park.  His giggle as he ran down the ramp with his walker was contagious, it brought tears to my eyes.  I desperately tried to capture it on video but he was just too speedy for me!  Needless to say we fell in love with the park and will be going there again very soon for him!

I found myself having a "poor me" moment this week.  James was invited to a birthday party for some friends at which there is going to be a bounce house for the kids to play in.  I explained to the hostess that we would attend if it rained and the kids weren't in the bounce house because that is not something James can participate in.  She stated that she understood but the other part of me wanted to yell, 'you have no idea what it's like so don't pretend!'  The hostess informed me there would be other outdoor toys to play with but as a mom I couldn't do it...all the other kids will be enjoying themselves in the bounce house and he'll be stuck in the sandbox?!  That doesn't seem fair.  I want James to experience as much as possible and to not limit him or keep him from activities, at the same time I don't want to take him somewhere where I know he won't be able to participate in the main activity that is being offered.  Never do I want my son to feel excluded and I do my best to make sure he will never feel that way.  It's hard...don't get me wrong.  I am just a mom of a special little boy who is doing her best to make sure he has a "normal" toddlerhood and gets to enjoy everything that a 2 year old should.  It's inevitable, there will be things he won't be able to physically do but thankfully I am able to filter out those activities for him.  When something comes up that he is unable to participate in I try my best to make sure we have another fun activity lined up to take its place.  I am hopeful this is temporary and soon James will be able to do everything that his peers can do with no hesitation...until then all we can do is our best to ensure he doesn't feel excluded or different from anyone else!

It's been far too long

It's hard to believe it's been so long since my last post.  So many things have happened with James and as always he continues to amaze Dave and I everyday.

In May, James got accepted to participate in a Brain Research Development Program being conducted by Dr. Elliott Sherr.  We were so happy to hear he was accepted into the study so we can hopefully help other parents with children who have the same brain malformations that James has.  

James began walking independently with the assistance of a walker. It has been an amazing sight to see and we love his new found independence as much as he does!  He is into everything now and we certainly are not complaining about it, this is something we had been waiting for.  James takes his walker with him to "school" (daycare) and has impressed his teacher with how steady he is with it and his independence.  Needless to say we are two very proud parents.  He has taken his walker to play dates and I absolutely love seeing him playing with his friends and being able to keep up with them by walking around instead of doing his trademark army crawl after them.  

Within the past few days James has become a dancing machine.  Anytime he hears music he busts out dancing and it is adorable! 

I am going to try to make a conscious effort to post updates more regularly for our friends and family to see.  Now that I've passed my licensing exam I have more free time to update on James!  Until next time...keep dancing!

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Fall is in the air

Today was a typical family day with errands and lots of miscellaneous things that needed to be done around the house.  I spent time signing Dave and I up for a mentor through Parent to Parent of Southwest Michigan in hopes we can connect with other parents who are in situations similar to ours.  I also found myself doing some more reach on CP, looking for doctors and different therapy things to incorporate into our everyday lives to help James get stronger.  Of course there was a lot of browsing for new toys to use, too!

We picked up James' 18 month photos today, which included pictures of him in his Halloween costume.  The little pumpkin is one that we got when we went to see Gene the Pumpkin Man.  (Not the best quality of this photo...shhh, it's a photo of a photo!)

Another great day spent as a family, cherishing every moment with our "Precious Miracle" as his daddy calls him.  Hope everyone had a wonderful Saturday!