Water- You are no longer our Kryptonite

Thursday, amist the craziness going on in our world right now, Sophia went back to the OR for her follow up regarding her second sugery to repair the open stoma in her neck.With much hesitation and precaution, we proceeded with the surgery because man its been a long year. Since, I last posted about when Sophia got her trach out in Sept. She has had two additional surgeries one in November to try and repair the open stoma. We gave it a few months heal and then due to pneumonia another 8 week set back. It did not close but it did get smaller. In Jan. she had surgery two to repair the stoma opening this time with a few stitches. In a matter of days, I could tell a HUGE difference. While holding my breath, I whispered to myself I think this is working. It made such a huge change in a mater of days that 2 weeks post surgery, she was finally able to rock a naked neck to school. I asked her how she felt about it. She put it simply "no bandaids, no ouchies. This is great". When she returned to school with new nakey neck she was actually late to class because all the teachers that stopped her in the hallway on the way to class with congratulations! Even with the visible change on the outside, we had to wait until March 12 for her scope in the OR to get the final approval from her doctor that it was truly closed or not. With my breath held and tears already in my eyes, I waited what seemed like the shorted OR waiting time ever. Like I sat down and made one phone call to my husband and my name was being called over the intercom to meet with the doctors. She walked in with a smile on her face and bursted out without hesitation that her neck was closed! Instance applause and tears. Even from the doctor herself. Our doctor said "honestly, I did not think it would close on its own. It even looks better on the inside of her neck that expected too". More proof that Sophia is truly a rockstar. Always doing things in her own time and always full of surprises. The doctor tested her airway with air and water to make sure the opening was leak proof. She passed all the tests. She said send me the swimming videos and my hearts jumped into my throat. 8 years. It took 8 years to hear these words. When Sophia originally got her trach at 7 weeks old, we hope it would be temporary. We soon realized it could be years for her to not need it. Then we started thinking she may always have to have her trach and we adjusted our thought process yet again. Then Jan of 2019, we started on a journey to decannulation. Now Jan of 2020 we finally realizing that our daughter was moving into a new normal yet again of a life without a trach. Our lives are changing. Things and routines and practices we have done for 8 years now were changing and stopping. I haven't had to carry a suction machine around since september. I haven't had to wipe my daughters neck or change guaze since Jan. Each year things slowly changed and our routines changed. Things we literally did every single day have now stopped. Life is ever changing. Now again, there will be new normal routines and changes.

Most people do not remember their first shower or even the first time water ran down their face. Think about that for a  minute. Do you remember that feeling? 

Saturday, my daughter got to feel water run over her whole body and face for the very first time. She is now 8 years old and just got to experience a shower for the very first time. Water- you are no longer our Kryptonite. Water- somethings so vital to life, filled this momma with great anxiety. It was a fine balance between how much we needed water and how protective we had to be over it. Imagine that for a second. For years, we had to adjust how we interacted with water amongst over things like sand, smoke, smells, pets, etc. Now water you are no longer a foe but a chance to belong blend into a new world of things. When Sophia had a trach she had an open hole straight to her lungs. That is now closed. Some previous restrictions are now being lifted. Some will alwasys stay. It like a new found type of freedom in some things. A new way to experience things. Sophia told me she was a little nervous to try it (the shower) at first. Afterwards, she said I was nervous but that was fun and relaxing. Perspective. Take that in! The things people take for granted daily are the things some people experience with rejoicing hearts and triumph. We look forward to this year and all of the other little things we get to experience for the first time with her. Things she will remember for her whole life. 

Right now, the world is in full spiral. It is surreal what we are actually living through right now. A global pandemic. Did I just type those words? I am not sure how to feel about all of this. What I do know is that protecting my daughter and my little guys are essential.  I CANNOT even put into words out of fear is what would happen to our lives if we are affected by this virus. I think the reality is that many of us will get it in time. TIME though is the key word. We need more time between the amount of people getting it and getting better. We need time to figure it out. We need to use this time to regain perspective on our values and families. We all have to do our part for the few that need protected more. I mean to put it blantly- My daughter just got her trach out and we are in protect at all costs mode around here. I am so grateful to be able to be home with them in this time. Loving them, playing with them and keeping them safe and healthy. Pray for my husband and all the husbands and spouses that still have to work daily out there in the unknown right now. 

I invisioned much celebrating over our spring break this year. With all the changes, we have adjusted to the new normal. Not the first time Team Rhodes has been faced with a new normal. We have been practicing extra germ patrol and precautions for years. Welcome to the life of a immune-compromised kiddo. Seriously though, we will find small ways to celebrate here at home because face it, it is the simple things that matter most in this life. She showered in WATER and that is a huge simple celebration. We will continue to find the small ways to rejoice her victory and when the time is appropriate we will make a big splash in our celebrations.

I hope this post finds you all well. I hope it can bring some joy and perspective to you all in this time of confusion and vulnerabilty to us all. We will all come through this time stronger, more focused and humbled. If you need perspective, ask a immune-compromised momma, and if you need motivation look at their child.