Stacking blocks

When my oldest was a toddler she had these rubber squeaking building blocks that she would play with.  She would take the blocks and build a tower high as she could before it would either tumble down to the floor or she got overly excited and decided kicking it down would be more fun.  Each time they fell she would squeal with excitement and then start the process all over again.  I can still envision her huge baby toothed smile while she was jumping up and down.  This morning her smiling face popped into my mind as I was thinking about how much this relates to Sonzee's milestones, more specifically her GI accomplishments, the main difference every time the tower falls there is no smiling face there to celebrate.

We spent years building tower after tower trying to find a solution to Sonzee's GI difficulties and pain.  Every time the reprieve would be short-lived and we were back to situating our building blocks into the perfect configuration to maybe reach some kind of success.  Finally, in December, after close to 3 years of being made aware of her struggles, it felt like our final tower was built.  Since then there have been a few occasions where a couple of blocks have fallen.  Every block that fell was replaced within a few days, maybe a week tops, but slowly the tower would resume its height and we would breathe in a sigh of relief.  It had been close to 6 months since the last time a few blocks fell from the top of the tower, so maybe my comfort in the situation was unfounded based on history, but since they say we are supposed to have hope,  we did. 

Over the past month, it seems like we have been traveling in a falling block zone.  It started with a single block falling, turned into 2-3, and now there is no proof there ever was a tower.  The base block is nowhere to be found, it too has lost its grounding and has completely disappeared.  We are back at square one, really below square one, everything has been erased, it is as if the tower was never built in the first place.  I feel defeated, I am angry and so incredibly sad.  I am in the place of wondering if this tower can actually be rebuilt or if our new tower will even include all the blocks we used in the first tower.  Everything is lost.  Everything is gone.  Everything has been erased, yet a tower needs to be rebuilt, but there is definitely no eager toddler awaiting the thrill of stacking the blocks waiting for them to eventually fall down.

Reset Button

The big kids are off at camp, little brother is on a walk with his babysitter, Sonzee is in her P Pod, Sam is in Phoenix, and I just finished vacuuming and doing a couple of loads of laundry.  The last 24 hours have been a complete whirlwind of experiences and emotions, scratch that, the last 5 days.  I feel like that is synonymous with life in general.  We spend all this time anticipating and preparing for a wedding, a family celebration, a big event in general and then when it happens some things go as planned, others don't, but after it is over you just want to plop onto a fluffy piece of furniture, let out an exasperated sigh and reflect on what just occurred.

Since 2016 when Sonzee received her first intestinal feeding tube we always had steps in place for what to do if the tube came out.  The first summer in NY with the NJ tube was so scary because it had just been placed, she was fresh off a 28 day hospitalization that had included TPN and left her stomach unable to be used, but at that time we were not even fully aware of the extent of her GI issues.  It was all new to us and we had limited experience with intestinal feeds in general.  We thankfully never needed the tube replaced during that summer, but we had our backup plan in place; to go to the hospital we initially attempted to go to this past Friday.  Every summer since, that was the plan on record, and every year we skirted by with no tube issues.  Thankfully all of the other summer hiccups had been easily handled at the local regional hospital or the urgent care clinic.  I suppose "luck" eventually runs out, and maybe that was why my gut was nagging at me as summer 2019 approached. 

Until yesterday I looked at the summer as a sort of escape, a place for us to go as a family and reset so we could take on the next school year and 11 months in general until we could again escape.  What is something that I have known since the beginning of life with Sonzee but for some reason always need some sort of harsh reminder is that there is no escape.  There is no putting a medically complex life on hold.  The challenges are always there, they will always be there, it doesn't matter that you planned to leave them back home, miles away, as if they didn't exist.  The only difference is that you have an extremely long yet amazingly beautiful view as you drive to attempt to sort through your emotions, to reflect on everything that is occurring, and to realize there is no way to plan a reset button.

3 years 17 days

It is 10:19pm on Tuesday night, Sam is on the couch, I am at my desk, and the only sounds we hear are the cat water fountain and the low hum from the oven.  As I pre-set the oven temperature to 350 and sprayed the aluminum trays with pam, I told Sam it has been 3 years since I started this tradition.  The tradition of baking cookies for the interventional radiology department at Phoenix Children's Hospital.  After (the first) perfect storm hit her little body, it was decided that Sonzee would have a PEG tube placed on March 10, 2016.   

I remember the day like it was yesterday. After her initial g-tube surgery placement pre-operation situation about 10 days prior turned into an epic failure, we were back for a slightly different procedure with a different team of doctors that would ultimately result in the same outcome; a feeding tube into her stomach.  I walked in with baggies of cookies, thank you cards, and Sonya's Story awareness cards.  As I handed the baggies to the doctors and staff, I half-jokingly said, "Here you go, these are please don't kill my daughter cookies".  I remember the half smile half shocked look on their faces when I said those words aloud.  Sam and I both gave a semi smile and little chuckle, but said, "No, but seriously, the last time we came to the 4th floor and she was going to have surgery for the gtube, someone/something almost killed her". 

Over the last 3 years and 17 days, the cookie bringing tradition continues to be strong.  At a minimum, every 3 months we find ourselves back among the familiar smiling faces who handled Sonzee with great care when she was just one year old.  One of the only nurses to ever be able to start an IV for Sonzee on the first try is in the IR department.  From PICC lines, to multiple NJ tubes, to GJ tubes, and other procedures as well, they have been there for her during some of her worst times.  We see the doctors and nurses in the back halls or while we wait in the waiting area when she is admitted and she is in other procedures.  Every single one of them stops and talks to us and asks how Sonzee and the family are doing.  For all of great times, not so great, and the times in between, we are so grateful to the IR department and I truly hope the gesture of cookies that began 3 years and 17 days ago adequately conveys our gratitude for the way they take care of our Sonzee bear. 

Will it go away?

We spent two days this week at children's hospital of Colorado because they have a center of excellence for Rett Syndrome, CDKL5, and FOXG1.  This was our second time taking Sonzee and I am glad we went.  We learned some new facts that we had not known prior to this visit, for example, Sonzee has a 5% chance of being seizure free in her life (but realistically it's less than 1%), and if she learns to sit by age 3 she will be more likely to walk.  Neither is to say she couldn't ever be seizure free or learn walk even if she isn't sitting within the year or a miracle happens with her seizure control, but the odds begin to stack against her as time goes on.  Luckily for all of us I never planned on seizure freedom for life for her and my main goal is only for her to sit, so even if it happens when she is 10 that would be okay by me.

Parts of this life are getting more challenging to process.  Everywhere I look I see typical 2 year olds, and I can't stop wondering what Sonzee would be like.  Even looking at the other children with CDKL5 mutations I can't help but feel like Sonzee was given the short end of the stick.  I wish she was at least happy and smiley, but she's constantly miserable and in pain.  I'm so worn down from it.  It's one thing to have a child not complete milestones, that in and of itself is devastating, but tack on a stomach with dismotility, feeding into the intestines, constant GI pains, and unhappiness, and that's the life of Sonzee.   

I'm having a hard time with the tube being gone from her face and it has only been 9 hours.  It was my safety net while out in public, it was how I coped with her not being a typical toddler...now it's hidden.  It will only be revealed by the question of "how old is your baby?"...I keep playing with the blue stroller=wheelchair placard I have to make sure it's clearly visible to strangers. I keep placing her feeding tube extension in a location that is noticeable.  I don't like this.  I feel like too much is changing, but not anything is changing and it all makes me feel like things are spiraling out of control.  I'm feeling like I have completely failed her in all areas and I wonder if that feeling will ever really go away...

Mommy bloggers, Join me @ Top Mommy Blogs

Planning

Something that I have had difficulty with since Sonzee has been planning anything.  Life has been handled in more of an hour by hour manner which is both helpful and stressful at the same time.  I miss being able to look at the future and mark things other doctors appointment in my calendar.  It is not just that we don't know how things will go with Sonzee, it is also the mere fact that I have limited capabilities of processing things in the future and or having the energy to plan.  However, currently things have been calm.  **I might regret writing those words or even thinking them, but it is our current "now" and it is the truth.  With that being said, I am actually planning for our summer relocation already and I couldn't be more excited!

In 2014 we started a summer tradition to spend a month in New York.  In 2015 we unfortunately had to cancel after Sonzee began having seizures and our fear that they could turn into infantile spasms while we were away.  After missing that summer away, we decided as a family that in 2016 we weren't going to let anything stop us from the much needed and wanted summer away. We thankfully were able to pull life together enough to escape to upstate New York Sonzee finally escaped from the hospital in June.  I am beyond stoked that our tradition will continue in 2017 (G-d willingly).   I have marked the dates on the calendar,  have begun to fill out camp paperwork, sent in our request for the rental property and have even began the initial phases of planning our mini trip at the end of July.   

I know that things can change in an instant, but I am taking full advantage of our current calm as well as my renewed desire to plan.  I don't know if planning this far in the future is my brains way of ignoring the decisions that need to be made within the next couple of weeks in regards to Sonzee's feeding tube and formula changes, but regardless it is a nice distraction.  I have missed my type A personality and I'm so happy she is back for a visit.  I don't know how long she'll stay, so I intend to exhaust her for as long as I can.

Mommy bloggers, Join me @ Top Mommy Blogs

A decision already made...

I wanted to count the number of posts that I have written that involved decision-making, and then I realized there were far too many to count.  The majority of our situations involve making choices between two unfavorable options, yet deciding which will hopefully be the least disruptive to whatever balance we have currently stumbled upon.  I know deep down the results of our choices are not based on whether we made the right or wrong choice, but it never makes me feel any better when the outcome is not what we had hoped.

Here we are again at our friendly little fork in the road.  This one both Sam and myself saw coming, so we have talked about what we think would be best for some time now.  However, discussing the potential scenarios and actually living them are entirely different.  I always think I am prepared until the day comes that the doctor looks at us and says, "I feel comfortable and I think it is time that we go ahead with XYZ, now you and Sam have to make the final decision".  I do not know why all of my confidence flies out of the window and the panic attack sets in at that moment, but it has happened every time without fail.

When Sonzee was placed on intestinal feeds back in May, it was to save her life.  Thankfully it did the job, and so making the decision to have a tube come out of her nose and go through her body was not even a smidgen challenging.  Placing a tube on her face went against everything I had wanted for her, knowing how much it would bother her, knowing that it can cause feeding difficulties in the long run, knowing that it would be an attention grabber while she was out in public and cause excessive staring.  She has lived with a tube on her face for 6 months, and while it is not ideal, we are all used to it.  Truth be told having a blinking sign indicating that I am aware something is wrong with my child actually makes me feel comforted while we are out in public.  

Today we were told that she will not be starting stomach feeding in the foreseeable future and so her GI team feels comfortable with moving the tube off her face and changing her stomach tube to a stomach/intestinal tube.  It is not to say her stomach will not work ever, but CDKL5 has not been kind to her GI system.  We have wanted this tube relocated for so long; I am unsure why I am nauseous at this thought.  I know there is a part of me that is sad that her stomach was not able to start working again by this point.  I know there is a part of me that worries once we do this, it never will.  I know there is a part of me that fears this "outpatient" procedure will go completely wrong, despite the fact that "complications are rare AND it is outpatient".  I know there is a part of me that worries this will only aggravate her stomach more, causing her more pain and discomfort and constant venting (releasing the contents of the stomach so that they don't just sit there).  I know I am afraid of tipping the boat since it has been rocking already for 6 weeks and we are finally getting our happy bear back.  What I think is my biggest challenge right now is knowing what our answer is, but fearing the outcome.

Mommy bloggers, Join me @ Top Mommy Blogs