as long as possilbe

It all begin in April,
I took Haden to our favorite Doctor. The Rehabilitation Specialist.
It is the best doctor we have been referred to. She understands his body and his movements. 
She puts him on muscle relaxers, and strong ones, so Haden's spasticity does not limit him as much. She puts him in ankle braces and forwards him to therapies.

Anyhow, we have been a regular visitor of this doctor for at least 3 years now. 
I was expecting this appointment to go much like the last several.  
     "might need to consider … in the future, but he's looking good"

 Nope … within moments of her walking through the door .. it was "I don't like what I'm seeing here." 

We knew that his left foot was angling inward again, and that his movements were more stiff than he had been recently. But I just figured that he yet again needed a baclofen increase as he had been through a pretty recent growth spurt. 

By the time we left the appointment he had 3 x-rays, a request into insurance for fentanyl shots behind his knees, and then scheduled appointments back at genetics, and to an orthopedic surgeon.

I cried in the car, 
I thought he was doing "ok" 

-------------------------

We were seen pretty quickly from a top Orthopedic Surgeon at Children's Hospital here in Denver. 
John came with me to this appointment.

We waited over an hour past our appointment time for the doctor to get to us. (This is a rare occurrence for us once we moved to Colorado) 

The doctor did not rush his time with us.

He looked at Haden and then said

"WE WANT TO KEEP HADEN AS MOBILE FOR AS LONG AS POSSILBE"

"HADEN WILL BE IN A WHEELCHAIR ……."
     
and that's the first time I heard those words … a wheelchair had never been a consideration
Haden runs … a lot.
He walks down the stairs.  
Sure he has leg cramps sometimes, but a wheelchair?

WAIT … WHAT DO YOU MEAN???
Thank God John was there, when I went silent and heard "wahhh wahh wahhh" he slowed the doctor with questions to get explanations and understanding. 

The doctor explained that it WOULD'T mean that Haden would lose the ability to walk, but that his spasticity (tightness) would be so severe that it is simply way to painful for him to move.

The doctor then showed us on Haden's legs that his knee caps are already beginning to be pulled out of alignment from he strain on his hamstrings. He showed us Haden's foot turn and how ligaments could be "crossed" at the ankle (through surgery) to help his foot be less "club like."
He told us that puberty and rapid growth will be Haden's biggest enemy. And that any signs of obesity will string his muscles more and send him to a wheelchair faster.   He told us about inserting stabilizing screws in Haden's kneecaps to prevent further dis-alignment when puberty gets closer. He told us about possible future 24/7 casting and bracing and I am sure the doctor said a whole lot more in the hour he spent with us. But "wheelchair by late adolescents" and "mobile for as long as possible" kept circling in my head.

Before we left he put Haden on a wait list for very specialized test called "gait lab"
It is way cool technology. They insert small sensor needles into Haden's legs and then using animatronics they monitor the muscles as he walks. (Like animatronics that movie productions use, but actually looking at what muscles are firing or not and when) After the testing a  big team of doctors and therapists review the findings and propose the next several years worth of treatments and surgeries.  This test will happen in early December.


I randomly would start to cry for several weeks following this appointment.
I even had a lady hug me at Sams club not knowing what my tears were for.


-------------------------


In July we were finally able to be seen by Haden's Genetic doctor.

KDM5C is still considered pretty rare. And there is still very little known about it.

Our doctor looked at Haden and reviewed the medical notes from the rehabilitation Doctor and the orthopedic surgeon. 
She found that Haden's genetic condition is linked to "slowly progressive spastic paraplegia" 
And explained that this diagnosis fits all that the doctors are seeing in Haden and his movements. 
It means Haden WILL keep getting tighter, and he will end up in a wheelchair at some point. Baclofen, surgery, sedated muscle relaxing shots, lots of doctoring, and "mobile for as long as possible" has now become my new mission for him.

An answer to a question I never asked.
And I cried before even leaving the doctors office


------------------------------


There have been so many tears these past few months. 
So many moments of working myself to a stronger point of acceptance.

I know we are in the right spot for Haden to get amazing care from truly wonderful doctors.
I am finally to a point where I can say "slowly progressive spastic paraplegia" without my voice cracking and needing to wipe away tears.



And I only cried for a few minutes after the DMV to get us a handicap placard for Haden.



It's a whole different world of emotions raising special needs kids.
There is so much pain and yet so much joy. 
And there are God's people who will love us though it all.

I almost had a group of friends ...

It was almost a 6 months ago now, and I have mostly healed myself from the embarrassment from the whole debacale.

You see, I just wanted to be a light. I wanted to be an encouragement....but I forgot for a moment that my story is nothing like anyone else in that room.  My life of raising Haden is complex and deep. And unless you are living life with me … you do not understand or know the depth or complexities of our chaos.


So here it is … the story of the time I almost made friends in Colorado.

It was at a weekly bible study. It was ladies night so the husbands were at home getting the kids fed and put to bed. If John had just been by my side, he would have explained it better.  

I was the mom there with the oldest kids. The others all still deep in toddlerhood with several moms in midst of an infant and toddler.  whoof …. that was a rough time to live through …. I remember. 
After the study while everyone was commiserating about the trials, and the mom guilt, and the crying … so much crying.  

That's when I did it.

I said all the wrong things.

I just wanted to give hope that days get better and before you know it, you are living life WITH your kids not exhausting yourself by serving you kids. 

I told them a story of when I was a mom of much younger sons. I was at MY end, and a few moments before John could get home from work to rescue me … I locked my kid in the bathroom.  
Totally trying to communicate that there are days you loose yourself … and then you rest, and have help … and you are a good again. 

What I forgot most of all, is that all those ladies in that room  DO NOT KNOW OUR STORY.  

They do not know ME, and the UGLY TRUTHS I was living through in those moments. 

They did not know that this was a moment in time when Haden's potty-training was at an all time worst. (remember here that because of Haden's mental disabilities it took him a full 3 years to get trained up) He would poop in his underwear at nap or early mornings and then smear the feces through the carpets, on his toys, and all over the door, windows, and walls.   
It was at a time when the carpet steamer didn't even get unplugged for months.
I can handle a lot, but this multiple times a day - smelly clean up, and the realization that my child is not going to be "normal" was sending me into panic attacks. Not the type you see on tv where people loose their breath and are ok moments later … but a scary -  mom as small on the floor as I could get, screaming in pain and pulling my hair out in the fist fulls -  just trying to reliever the emotional pain of all the uncertainty and chaos.  
And more that I had a older son testing limits.
Yes, I locked my kids in a safe spot … and I held in my panic attack until I was in a safe space for them not to see me.  And I reached out for help. and I had a break.  Yes. I broke, and I healed, and was still a good mom through all of that. 

All I wanted to say to them was there are days you stick your kid in a bathroom where they are safe to be ok, and there are other days you go to a park for lunch. 

But that's not what they heard.

Because they did not KNOW ME.
They did NOT know my LIFE STORY.

I noticed within the conversation that they all changed their thinking of me.
I wasn't going to be accepted into their group after that.

I have seen a few of these ladies around town in the past months. 
I see them look at me with wide, terrified, eyes and turn the other way as fast as they can.
I see them - see what they think I am - not see me.

Because of this moment … I left the church we were trying to fit into for the prior year.
  And we are not missed there,  even though we do miss going.


And I have come to realization that my life is not in a season of loneliness 
    ... raising special needs kids means living a life of loneliness. 

You cannot understand my story unless you live it with me. 

I do not write this for pity, but to finish healing.
I do have some friends … and a handful of people here in Colorado that will say "hi" to me. 
And I am grateful for all the moments those that love me try to understand my world … but all I live through is not easy, and I understand that it is too much for most to even ask me about. Becausethere is deep heartache, there is panic, there is major fear, there is crying in lots of parking lots and showers, and there is joy that after 3 very LONG years there is new paint on Haden's bedroom wall.

hotel living truths.

We have been living at Homewood Suites for a little over a week now as a family of 4.
These are few truths I have learned about hotel living thus far.



1. unlike a dorm, or even apartment living ... our neighbors are not here as long as we are. 
 
we have many times said hello to families with kids on our floor (or at the communal breakfast times) and have always been met with a very reluctant and suspicious hi back.
wyatt even offered to take the luggage cart back downstairs for a man, he felt very uncomfortable with us asking ... but in truth, wyatt just wanted to ride it down to it's place. ha!
the good in this is that the kid who liked to jump on the bed and stomp across our ceiling was only here for 2 days, and the dog next to us that kept trying to open the door was only here for an evening.


2. people love themselves a free meal. 

it doesn't matter if it's the breakfast or the simple salad and cheese and cracker tray out at dinner time. the ways that people can manage to fill a plate (or three) amazes me.


3. taking down my personal coffee cup in the mornings signals the staff that we are not the typical short-term visitors.

we have met some really great staff here at homewood suites. they are friendly, accept daily hugs from our kids, and truly wish us luck with the home selling/buying and with john starting his new job.  in several ways they are becoming friends.  which is super beneficial when my boys want a blueberry muffing with the case is out.  (or so i say because i really wanted it)


4. my kids do better in their own rooms

i know lots of parents love to have their kids sleep together, but it is not beneficial in our house. haden still is a very loud breather while he sleeps which causes wyatt to get less quality sleep.
when haden begins to wake at 5am, he runs over to wyatt's bed and begins banging him on the head in excitement that his best buddy is in the room with him. oy!
LACK OF SLEEP MAKES WYATT WHINY AND HADEN MEAN
a terrible combination when mixed together
oh Lord, help us survive these next 6 weeks in here.


5.  giving wyatt a key card was genius

first of all wyatt had to spend about a week in the hotel with us, proving to us he knew how to get to our room from all doors and front desk/food areas.
now that he has his very own card ... FREEDOM i tell you. not only does wyatt feel like an adult, but he's super helpful. I send him on errands several times a day. just today he changed out the laundry, got me an apple, took a tray back to the food area, and back down for extra coffee creamer.


6.  we are all starting to feel the tightness 

we miss the ease of a backyard play area, being able to sit on a soft couch, and not always HAVING to be in a room with someone else. there is so little alone time here for any of us.  Even now as i'm typing, john's on his computer 4 feet away doing his own thing ... several nights i've watched shows on my tablet WITH HEADPHONES as to not disturb him.  it's funny how i just miss watching tv with normal sound.


7. i never knew a rotisserie chicken with microwavable mash potatoes would ever taste so good.

it had been weeks for john and i of constant dining out. sure we ate at some nicer restaurants, but that first meal as a family, in our hotel room, using both office chairs so we all can sit at our tiny table. the four of us cleaned that whole chicken dry, and the kids slept wonderfully that night.


8. i worry too much about a 'proper' dinner for our family.

one night we all ate corn dogs. that was it. nothing to go with it, just corn dogs. it wasn't awesome, but they were microwavable and in that moment that was good enough.
another night we had frozen lasagna and nothing else. we ate it and were happy enough.


9. hercules is a great cat

he doesn't meow, he sleeps most of the day and plays throughout the night. he lets the boys look at him for a moment before he disappears again. i never expected him to be this great. he must just feel happy to not be left at home alone anymore.


10.  swimming everyday is fun and exhausting

the boys love the pool. i love that it is only a short walk down the stairs to it.
it's really awesome to watch them giggle and play, and that 45 minutes is full of giggles.

WE MOVED? WHAT!??!!!

As to quote the Disney cartoon Little Einsteins "I CANNOT BELIEVE IT!"

I, Kara Rocha, Married to one John Rocha CALIFORNIAN, am sitting here in a hotel suite in DENVER COLORADO still in somewhat disbelief that the last 8 weeks just happened.

First of all. John had been contemplating Denver for the past 4 YEARS.   He has been researching the dynamics of the city for years and lead by God decided it was time to move his boys to the mid-west style of life.

I have known that he was considering moving since the end of OCTOBER.  That's six months from first thought that MY husband would ever move out the bay to actually doing it. AHHHH!

From the moment John submitted a resume ....  to (no joke) hours later with the first phone interview ... to me sitting here now ... GOD has lead this process.  
My parents were visiting us the first week in May John flew to Denver for the in-person interview. They painted and touched up our walls and baseboards just incase we would need to sell.

About a 3 weeks go by and there is no yes, nor a no.
Our preacher gives a great lesson on God truly wanting the BEST for his people,  and God is WANTING to give you a YES to whatever your question to him is. At the end Shane said something like  "ask God for your yes this week and wait to how much greater his yes to you will be."  So I waited ... and I prayed in the car a lot that week. I realized deep in my soul that I wanted that YES. I wanted to move out of the Bay Area. I wanted that Mid-West style of calmness, family, and lifestyle.  Sunday came and I felt a bit discouraged. I wanted a YES, and didn't get it ... I got silence. So I prayed that day to remember God's timing.

Monday, May 18th,  I'm at a therapy session with Haden and I check my email. 
John has sent me an email from the company he interviewed with.  It is an job offer. 
And it has everything. From a good wage and benefits, to paying for a moving truck and a 2 month stay in an extended suite hotel. This company WANTS John. 
And GOD HAS GIVEN US A YES WE CANNOT BELIEVE.
We sat at the table that night and there was no "no" for us to say.   A few hours later we called my parents and Memaw to tell them the news.

It took us about a 10 days for it to sink in enough to start telling our friends we were moving.

We have spent 6 great years at our church.  And we loved it.
We have had Granny Gerry and Papa Garey in our home apart of our lives for the past 3 years. And we deeply love them.
I have made lots of good mommy friends, and how do you leave that behind?


By the time word had gotten out about our move. It was already June and the typical end of school year chaos has began.  Last play dates were scheduled, but the rush of it all and the time of year made it not feel sad or real at all.

They boys had a few days in our home after school ended before I flew them to Ks.
They spent from June 10 until July 5th with Grandpa and Grandma. And they were so happy there.

John stopped working on June 12th. He made a quick trip to Denver on the 14th to settle us into a hotel. He found a great spot.

We packed and packed and did have the opportunity to visited with friends until our moving truck came to take all our belongings away on June 23rd. (except a few items and a few suitcases of clothes in which we will survive on until we own a Denver home.)
It took John and I until the 26th before we left the bay.  Something was always more important than cleaning the house. (like the 2 hour lunch we had with the Castles & holding baby Sophie one more time)

John, Hercules, and I had a nice drive together. We left about noon on the 26th and went to Las Vegas. We stayed at a beautiful resort at Lake Las Vegas and started our drive to Denver around 8am the next morning.  We enjoyed listening to old podcast of  Click and Clack, quietness, and not packing/cleaning! We made it to Denver about 8pm and were happy to be done with the drive.

2013

2 Corinthians 4:8

we are hard pressed on every side,

  but not crushed.

perplexed ...

   but not in despair.

persecuted,

   but not abandoned!

struck down,

   but not destroyed

Here's to a new year 

    To rebuilding and strength.

    To trusting and standing firm.

    To growing more of the fruits of the spirit.

Forgetting the struggles of the year behind.

Prayerful to be blessed.

Post-Surgery update

Haden went into surgery on Monday May 7th.
After being put on general anesthesia, Haden's throat was scoped and they found that he indeed needed supraglottoplasty (which involves cutting the tissue of the aryepiglottic-above the vocal cords- opening the airway).  The doctors also found evidence in the throat tissue of gastroesophageal reflux.  Haden also had ear tubes put in.

Dr. Messner came and spoke to us when the surgery was over. She said that the cuts this time were "harder and deeper" than before. She suspected that Haden would have a rougher recovery than in December. We asked her what caused the laryngomalacia to come back and she said that Haden's throat tissue is just soft, while breathing that soft tissue is being pulled (approx. 30 times each minute) until it stretched enough to cause stridor and make breathing difficult once again. She also said Haden's reflux irritates the throat tissue making it more suspectable to being soft. Unfortunately at the end of our conversation she mentioned that until the swelling goes down and Haden we will not know if he will again need surgery a few months later.

John and I were soon called into the recovery area to see Haden. He was still struggling through a breathing treatment and was in great discomfort and pain. The breathing became less labored and soon we were taken into our very tiny short term stay room. Haden struggled in not wanting to taking liquids and napping (as it was a shared room until late at night.)  Finally about supper time, Haden took 3 bottles and fell asleep. When the room cleared out about 10pm - the nurse allowed me to lie down to sleep with Haden. He and I were up every few hours with pain ... but his O2 stats stayed constantly between 97-100 so we were released to come home.

After getting home Haden has continued to heal. He slowly has been getting his full appetite back.  Haden is getting his full energy back as he played with Grandma and Memaw.   He is yet again trying to keep up with his big brother.
There is still stridor in his breathing, although much quieter. And he continues to be on medicine for reflux.  Yet we wait ... hoping what we currently hear is still swelling from surgery, but secretly preparing ourselves for yet another -tougher- round of surgery, if it should come to that again.

To end on a positive note
    Here's a video of Haden joining Wyatt in the sprinkler on Wednesday afternoon.
Our joyful baby has not been brought down one bit by his breathing nor hearing adventures.
     his JOY always makes me grateful of the Lord

Here we go again .....

We should have been sharing this with you all along.
We were waiting on some answers before alerting the masses to Haden's needs.


In order to start this post, I first need to give you a bit of history.


Haden has been diagnosed with  Laryngomalacia - this simply means that the tissue in his neck is floppy.  In the extreme cases the tissue of the upper larynx collapses inward during breathing.  Laryngomalacia is actually common among newborns; however 99% of them grow out this within the first 2 months of life. Haden is one of the extreme cases, but not severely extreme - and for that we thank God!  Haden has strider (which is very noisy breathing), reflux, and mild sleep apnea, feeding problems (see previous posts about Haden's inability to suck), slow to gain weight,  and failure to thrive (not meeting developmental benchmarks) ... all of which Haden had prior to his original surgery December 5.  The severely extreme cases also include blue spells in which the baby actually turns blue from the lack of oxygen.  Haden has never stopped breathing nor turned blue.

                                           *healthy throat                        *floppy throat

   In December Haden underwent his first surgery. They used a laser to cut out the extra tissue instantly causing Haden's O2 stats to jump from 96% (his normal) to a 100%. A small miracle in our hearts.  Also in the 4 months since surgery Haden has gained 4 pounds. Another miracle we are constantly amazed at. He started sucking on bottle - although still pulling off the bottle to breathe, and his tight muscles loosened and mobility started.
   About a six weeks ago we took Haden into a hearing test. He failed it. The audiologist said that he had so much fluid behind his ear drums that the drums were unable to move causing him to not register sound. I cried that day.  We've been in our pediatrician's office every week since to monitor the ear drum fluid. Without an infection Haden went on an antibiotic.  It did relieve some pressure, but fluid still remains behind his ears.
   On Wednesday John and I took Haden back to Lucille Packard to meet again with Haden's Ear/Nose/Throat surgeon Dr. Messner. We had our list of things ready - sleep apnea, still noisy breathing, and of course the fluid behind the ears.  Dr. Messner walked into the room and didn't speak, she just listened. She checked Haden's ears and then scoped his throat again. She asked us about his speech development. He's only making a few sounds.      and then it came ...... her recommendation.

surgery again.  
   less than 20% (of the 1%) who need the laryngomalacia surgery also need a second round to cut more tissue.
PLUS .... ear tubes, followed by a repeat hearing test the next week.


On Wyatt's 4th birthday, May 7, we will be taking Haden back into Lucille Packard for his surgery.  
He will again be in the hospital at least one night following the procedure.

Although you never hope for your child to be sedated and sent into surgery, we are hopeful for even more growth. We are so excited about Haden's progress in the past 4 months. He's even taking 3 steps now! (see video - notice the sound of his breathing too)




We feel blessed to have you all praying for success. (again!)
  & we thank you for all the love you show when life gets tough and complicated.