Hospital Visits and Road Trips

We have been busy!

Packing, more packing, temperatures and packing, then a hospital visit….before heading off on a 14 hour journey home.

Let me first say, I have still not caught up on sleep, but I think Theodore has begun to feel better.

Over the last two weeks I have been getting ready for our journey to North Carolina. We have been so sad that we will be leaving family, but we are excited to be reunited with “dada”.

We have been “shacking it up” at my parent’s house, in Indiana over the past 5+ months and we have accumulated many, many items. I already have too many things myself, and then we went and added children. Soooooo… You can only imagine.

To sum it up it has taken a great deal of time to get it together, organized and ready to go.

In the midst of packing life continued to happen. Theodore got his FIRST TOOTH!!! Yes, he  proved us all wrong and has a “toother” before his first birthday.

Very Exciting milestone

Then he started getting a tempurature…. Not sure if it was a teething temp. and we just continued to monitor it…..

Well…

It got bad, real bad and NOTHING worked…… and because of his low muscle tone he was not able to burn it off himself…

I went crazy mom(as instructed to do by his genetic neurologist) and……An hour later we were at the emergency room in Indianapolis at Payton Manning Children’s Hospital.

Tests, blood, urine, scans, pricking, more pricking and finally an IV later… Our new normal, hospital routine was partially  completed.

We tried sleep and rest. (This involved me crawling in the bed, like an ape with my son so he would calm.)

Results, results and more results were given and puzzles were created. However, nothing was resolved. There was a missing piece and it was not to be found anywhere.

Believe me we continue to search.

No bacteria, no abnormal white blood cell count and no clear abnormalities were found… Great right?? But temp was still spiked.

Meds, IV, rest and more meds, IV and rest later it dropped and it was time for us to go home.

We had no answers and well for us this has become the new normal! It has happened before…

Frustrating, right??

Yes, VERY!!

Through this journey we have had many things that have occurred and well we still have not found answers. We understand that Theodore has a rare diagnosis and it can be tricky.

But try, just try doctors. Research and try.

It is all extremely emotional, but most off all I hurt for my son.

I hate he has to struggle and feel pain and no answers are generated. Some doctors work, and continue to work their buns off to help us find answers.

BUT….

A great deal of them DON’T CARE or LISTEN and this makes me sad.

Luckily, we have found the drive to continue until we get a viable answer. However, I know there are many families that never find answers and sometimes it is too late.
Some doctors are aware of this process and one of Theodore’s doctors is very aware. He told me to be the “crazy mom” when he or another person/child near him is sick. I have resent my been growing into the pants and they are beginning to feel quite comfortable.

And…..I take this role seriously. I will continue to push for answers instead of excuses. I will wear the pants.

Nonetheless, after a 3rd shift hospital visit Tuesday night I had to make sure we were ready for a 14 hour Road Trip early Thirsday morning…and well with some BIG help from the fam. I succeeded.

Now, 14 hours and a few ml of acetametophine later …..we are in North Carolina. The Tempurature is down, his eating has taken two steps back, he was a champ during the trip, and we have no real answers ……but we are, Reporting to Duty, in pushing to find answers and repacking to head on a family vacation.

No time to dwell.

We are finding the light!!

Wish us luck as we continue the crazy journey in getting ready for Theodore’s first birthday, traveling and finding real answers. We know this isn’t getting resolved today, and that we will have many more hospital visits, tests and pricks.. But we will fight for real answers!!!

Until Next Time,

Reporting to Duty

Xox

Finding New Shoes

Shoes have been a HUGE part of my life. When I am happy, sad or angry I buy shoes. Some of my shoes are pricey designer shoes and others are DSW clearance rack. I enjoy all types and sometimes I have even bought shoes when they are uncomfortable….Well because I needed them for an outfit or they were just too good to pass up.

When I open the doors to my shoes closet( as we are preparing our other spare room for #babymiller2) I realized there are several pairs that I have not worn in over 18 months.

Some are covered in dust, and others remain in their boxes in the dust cover. Each pair beautiful and unique in their own….BUT many of them make me anywhere from 2-6 inches and right now I don’t feel like juggling in heels.

However, my shoe closet is beginning to look a little different. Both literally and figuratively.

Life is different now as a mom and I need different shoes. I have realized that most of them do not make me any taller and most of them are practical. Do not get me wrong, I still deal with a little pain because I will never give up on a cute outfit or a great pair of shoes, but all shoes appear different to me.

During my pregnancy I was ignorant and I believed that after I was done having the baby I would resort back to my impractical shoes. I was wrong…life looks different.

Months went by after I had Theodore and some of the shoes I used to wear I still put on, but they have felt different. Some have felt unnecessary and others felt more exciting. When this happened, I knew my life had changed.

All mothers go through change and now I understand. Change has been needed in our lives and I admit that becoming a mother has changed my life. Before Theodore I was adamant about staying who I was and not changing, and when he arrived I was a little sad about the new me. It was confusing, sad and frustrating.

When I gave in to the change and differences, I began to understand I have changed and it was needed to become a better me. I am still the same person BUT different. None of this is bad, and at first it was uncomfortable. Nonetheless, I have embraced the change and made it a part of the new me. I believe this change has helped me accept the challenges we have faced and has prepared me for those we have not.

Now…..I think the heels on my old shoes would have broke, and my new d’Orsey flats and my Converse are standing pretty strong….

As we continue our journey with Theodore and #babymiller2 I know more change and shoes are to come, but I am prepared. I am never willing to turn down a new pair of shoes, and now I know they will look a little different.

A pair of shoes will always look different on my feet than they look on others. I never expect others to understand the difference or how they feel.

BUT…….I never want anyone to judge my shoes, because they are not walking in them or putting them away in my closet.

Standing in front of my closet I realize it is time to clean out the old, move over the old faithful and put away the new. I will Report to Duty, in accepting new styles and sizes and understand that the change is good. I will continue shoe shopping and working to be the mommy and the best me.

Until next time!!

Reporting to Duty

Xox

 

Firsts, The Fourth and Our Friendship

I have been MIA and it has been wonderful!

Theodore and I took a trip to see daddy, my love and my best friend in North Carolina. We all spent some great one-on-one time together.

We escaped doctors visits, therapy and added the ocean and the pool to our daily routine.

All of this sounds easier than it actually is, because we still spoke to doctors and worked on therapy every day. Now at 11 months old we are understanding of what is needed and what has to take place to keep Theodore on his toes( well getting him to be on his toes).

With Theodore some routine is necessary and other routine he develops on  his own, based on how he is feeling. Sometimes the transition is a bit hard for him and it affects his immune system and breathing. Now that we are WORLD Travelers…wink wink….we know what is needed and necessary. Let me tell you, this was not always the case….

After many struggles and strides we now understand and are more calm as we wait for him to develop an understanding of where we are(in the world) and how is routine benefits him. We are glad because we are many places and have a few BIG changes happening over the next several months.

Luckily, Theodore has been adapting to some of these changes well, with his schedule.

While we were at our other home in North Carolina we tried to work on the #babymiller2 nursery/bedroom. This included several trips to Hobby Lobby, Target and Babies RUS….I would like to say the room is complete BUT it’s not…..

Instead I snuggled with Theodore, laughed with Keith, went to the pool and mossied to the beach and READ…an actual book which I have not done since WAAAAAAAY before Theodore was born and it felt wonderful to do nothing.

There are many loose ends and HONESTLY the freak inside of me is CALM….I KNOW RIGHT…but I have to accept the peace and know it will be done…well Hopefully, it will be done.

While we were visiting with daddy, Theodore had MANY FIRSTS…

His FIRST big boy haircut….went off without a hitch…I was fearful the clippers would scare him, but it was the opposite…Loved the clippers and hated the scissors. Now he just looks even more handsome and I didn’t know that was possible.

His FIRST time saying MAMA and DADA…Yes, it was wonderful!! He said MAMA first and then started rhyming everything and ended up at DADA…plus now we say..lala, nana, gaga and many other rhymes. Recently he has started making SSSS sounds…I feel he will talk before he walks.

His FIRST Fourth of July…Yes this time last year I was a mere 36 weeks pregnant lounging in a baby pool wondering about his arrival. This year we enjoyed a fun day at the ocean playing in the sand, taking beach naps and splashing the water…Wow what a year brings!!

His FIRST fireworks show…I was terrified..Theodore has some issues with low loud noises and I was fearful he would HATE the fireworks…Nonetheless, he proved me wrong AGAIN….Before we even sat down in our chairs the fireworks began and he started squealing with JOY and Excitement…he did this the entire time and when the finale began he was so excited he clapped!!!

His FIRST time clapping his hands…YES we have been working on this since day ONE. As a baby with low muscle tone it takes a lot of energy to hold his arms out or up. Clapping was always physically impossible and we often could see the struggle in his eyes when he wanted to try. What started out as only reaching in from of him has developed to clapping. Yes, it is still very slow and makes no noise but maybe to a humming bird but he claps!! This is a HUGE accomplishment in our world.

After many firsts and two and a half weeks home it was time to leave. We were all so sad, but knew it was back to the grind for a few more weeks. Before it was time to leave, Keith and I reminisced over the past 2 weeks. Then moved on to the past 11 months and our joys, sadness and strengths. We have had to push and pull on each other a lot, and although it has been a struggle we know it has been for the best. We know that because of our sacrifices Theodore has been able to prosper and this was and will be our goal.

Theodore has reached many FIRSTS and will continue to reach many as Keith and I work as a team and best friends. It is not always perfect, but we will Report to Duty, in ensuring our relationship and our children come first.

Until Next Time,

Reporting to Duty

xox