More Tests of Faith...

I have spent the last two years worrying about Alex's breathing post stroke.  Everyone who has been there done that usually says put a CPAP on him or better yet, put him on a vent at night.  I wish it was that simple.  Yet for Alex, anything like that, he does not tolerate.  He pulls at his nasal cannula in his sleep and just about rips his nose off.  He can not even breathe through his nose.  Just a pair of sunglasses lasts about 5 minutes on his face.  So imagine a mask at night.  So we do the best we can to blow oxygen at him and pray that it is all he needs.  But yet I still have times where I'm afraid to leave the room because his breathing is so shallow.

 

Today we went to the ENT.  Alex's neuro(you know, the one that left) and his pulmonologist, referred him to Dr. Mair to see if there is anything else blocking his airway on top of the O2 dropping at night.  Of course I knew they meant he was gonna be scoped.  Alex has had major drainage, trouble managing his secretions, and at times sounds like he snoring when he is awake.  And of course we have the swallowing issues and risk of aspiration.  So today we were hoping for clear cut textbook answers.  I know...funny!  We are never textbook.  First of all, this kid did amazingly well with the scope.  As many of my Facebook prayer warriors prayed along side us in Facebook world.  Alex did awesome.  Both the doctor, the PA, and I cheered him on and he let this man stuff a thin tube up his nose and actually look around a bit.  Take in mind at the same time, CAMDEN is facing the wall hiding his eyes from his best buddy being tormented.  You gotta love this dog when it comes to trauma.  He doesn't do gruesome tests very well.  But Alex survived it.  And immediately following the test, he grinned ear to ear because I told him how proud I was of him.  He was amazing!  He even laughed after it.  Immediately after the scope was out, the dog was back licking his hand.  He just couldn't watch the procedure itself.

 

So basically Alex does not have any structural blockage.  He is extremely low tone in his airway, tongue, epiglottis, etc.  This is all because of that damn stroke.  Hence sounding like a snore sometimes and coughing.  He is thankful we are doing the Oxygen at night, but he also says that there is no guarantee that he is taking consistent breaths at night. His tongue could possibly block his airway.  You or I would startle and cough and jump back on track.  Alex sadly might not.  There are some surgical things they can do like clip his tongue and shave his palate.  The problem with that is it creates a bigger opening and more secretions that he can possibly aspirate on.  He was literally coughing/aspirating is what he called it, on his secretions in the appointment.  That leaves one last option as a trache.  Now, of course we are not at that point.  We are hoping that what we are doing now will be adequate enough.  But now trachea talk has been laid out on the table again and my heart once again breaks into a million pieces. His breathing issues are just that serious.  All this was discussed before he even had this test at Chapel Hill with our mitochondrial specialist, but Matt and I brushed it off.  Who would even want to think the thought about their child.

 

For now, that is it.  We are doing nothing different unless Dr. Ashe sees something in follow up sleep studies that point us in a more drastic direction.  We are also waiting to hear more on some off numbers on his bloodwork.  But hopefully, this is it.  MRI came back with no changes since his last one.  And his MRA showed all arteries flowing well for the most part.  Just thank you for all your continued love and prayers.  Not sure what we would do without them.

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Another Tube Change Tomorrow...

You would think after 2 years, grocery shopping would get easier.  It never does.  I go in there with a list for our week of groceries.  None of which actually contains stuff for Alex.  But I still find myself longing for something Alex can eat.  Sure we try foods with him, but it is nothing substantial.  He has continuous drainage most of the day, so we never really make it past Dum Dums and Popsicles.  Between suctioning his drainage and Alex trying to manage his secretions, eating continues to be a challenge.  But the grocery store just continues to tear me apart every time I shop for our food.  People wonder why we never cook in our house.  Well let's see, I'm a vegetarian and Matt is not.  And then there is our sweet boy that we both long to cook for.  So, hence the grocery cart full of frozen dinners.  My heart continues to break.

 

Tomorrow in honor of the fun filled grocery trips, Alex goes in for another tube change under anesthesia at Levine.  It's a simple procedure, but always so draining for our family.  We have to be there at 5:30 in the morning.  Finally the infusion clinic has agreed to do his infusion following the procedure.  So, that's one visit instead of two visits this week.  Two weeks later on July 8th, Alex will go under anesthesia again for an MRI/MRA of brain and neck. So just a rough few weeks ahead for Alex.

 

Summer has kicked off to a pretty fun start for Alex.  We try to get him to the pool as often as possible.  Between therapy days and infusions, we are limited in the days he can swim.  It's hard to have him swim on a day he has therapy, because he ends up being off his feeding pump too long.  But today we seized the moment and tried to get in every bit of sun and water in before his tube change tomorrow.  I love how carefree this kid is when he hits the water.  If he could push me away, he'd try to do it all himself.  It's just Alex and the water and he is so happy.

 

So if you got a minute, say an extra prayer for our sweet boy tonight.  About the time many of you are waking up, he will be in endoscope going under anesthesia.  Although it's routine, it's never easy for him.  And it's never easy on Matt and I as parents.  As we approach more doctors appointments with different specialists and his MRI/MRA procedure, I hope to update again soon.  I'm just praying we get some answers with his MRA.  Once again, thank you for always loving and supporting our family.

 

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Farewell to Harper!

We just got through a ton of doctor's appointments over these last 2 weeks.  Everything went pretty well with Alex's ophthalmologist.  Things are pretty stable with Alex's eyes.  Still no change with his optic nerve.  And his eyes have not drifted too much.  Despite all of Alex's eye surgeries, it always seems to be put on the back burner, considering all the other issues.  His pulmonology appointment with Dr. Ashe also went well.  We are just continuing to do things the way we have been doing for the last 6 months. We also followed up with his cardiologist.  After doing another echocardiogram and EKG, they found his heart still managing pretty well.  Last time an enlarged aortic valve was discovered.  There haven't been any changes prior to last time. But he did feel like his low heart rate at night was due to low oxygen stats.  So, like many other issues with Alex, that was thrown back on Dr. Ashe with pulmonolgy.  Of course I feel like we are just going in circles with that.

 

But today was our final neuro visit with Dr. Harper.  She is moving to Virginia next month.  It was bittersweet of course.  This kid smiles ear to ear when Harper is in the room.  I can come in with a whole rap list of problems and Alex will laugh and carry on as we try to solve all the world problems.  But just a run down of what her plan is with Alex.  He is being transferred to Dr. Griesemer.  During his long hospitalization 2 years ago, we discovered this doctor on his rounds at Levine.  We loved him then, but his take on things is of course s little different than Harper.  But we will see how it goes.  He is the same doctor though that called me on his cell one evening because he was worried about Alex and then reminded me that I still had his cell if I needed him.  So, yes he is really good, but we will miss Dr. Harper!

 

For our visit today we covered everything!  And I know where she's moving if she missed anything!  She wants to do an MRA to look at all of his blood vessels in the neck and brain.  We've worried that something has been pinched up in his neck for a while but we never put it all together.  The problem is it may be positional only so we might not be able to tell.  But a theory being tossed around is that the Vertebral artery is being compressed at times when he is trying to sit.  Ever since his fusion and stroke, his neck has pulled to the right, but at times he looks like he is going to pass out when sitting during PT. And of course Alex can't tell us what is happening in his body.  In conjunction with that, she will have another MRI done to see for further atrophy in his brain.  So, neither are good things but the MRI/MRA will give us peace of mind in regards to another potential stroke.  She knew I'd googled entirely too much before she even discussed the MRA.  You have too!  We are also being referred to ENT to see if there is any blockage in his nasal/adenoids area to cause all the secretions and snoring sound.    And she also discussed Dr. Tsai again.  He's the rehab/Botox doctor.  We canceled our last appointment because Botox injections were not working, but she wants us to see if there are any other options.  I just hate that piece of Alex's puzzle now.  It just makes me sadder than anything else.  But Alex and I talked tonight and he's agreed we will go talk to this doctor again.

 

With all that, she is trying to get the MRA done before she leaves Levine.  I think she wants to be the one to ease my worries.  The way I look at it, we had a doctor who got us through a really hard time.  She always brought sunshine in the room despite the storm.  So as I fought my tears....I'm officially a pro at that one in doctors offices....I watched her eyes tear up as she gave Alex a hug.  Now to the next chapter with another fresh set of eyes on our sweet boy.  I feel like our lives were truly blessed with the time that we had with her.

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We're Back!

We are officially back to reality!  After a week at the beach, Alex started back school yesterday.  We had such a great time at Sunset with Alex.  Thankful for our Florence, I was able to lift less and play more with Alex.  And my mom and I even got some Mom and daughter time.  But the trip was great.  Despite some issues with Alex being really congested on this trip and his back of his wheelchair was messed up, he still had a ball.  We found a great access to get him out to the beach each day and we were even able to get him in the pool a few days.  It was perfect.  What was supposed to be rain all week turned into sunshine.  It was perfect!

 

Following our trip, Alex rode Pepper in the Spring Festival Saturday.  He did great.  I was afraid his energy level wouldn't be so good, but he did it.  He honestly was exhausted until I picked him up to put him on his horse, then he just squealed with delight.  It turned out to be a great day for him.  And then we finished off with a Mother's Day lunch with my Mom on Sunday.  Despite his extra days between infusion this time, Alex has done amazingly well.  Today as I sit here at Levine, he gets pumped back up with fluids and D10.

 

On another note, as I dug through all of our mail from the week,  I stumbled over a letter from Alex's neurology office.  His neurologist is leaving the practice at Levine.  This is the same doctor who has monitored his stroke, his movements, his infusions, and his mito for the last 5 years.  I just hate it.  There is so much at stake when you have to change doctors like this.  She has just really understood Alex.  She has been such a huge part of Alex's team of doctors.  And in particular, she has been the one to fill Alex's infusion orders each week.  Hopefully there will be someone even bigger to fill her shoes.  But I just worry about someone new coming in and making changes.  At the moment I am extremely thankful for the ability to text his pediatrician with my worries.  And then getting a text back saying she had it all taken care of.  She's taking over the infusion orders.  I am just so relieved.

 

It's a busy month ahead for us.  Just trying to get this sweet boy through 7th grade, so he can have a fun summer.  We are working on our summer bucket list now.  For now, I leave you with these pictures!  What a week!  Enjoy!

 https://youtu.be/eJXSMeZ6MjU

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Beach Bound!

Trying to take one day at a time with this sweet boy right now.  Everyday is different for him, but he always finds a way to smile through the hardest times.  Matt and I just last night were getting ready for bed and over the video monitor, we hear Alex squealing and laughing at 11:00.  This kid even laughs in his sleep now.  He really is that happy.  For the last week I've been packing.  We are trying out a different beach for the annual girls trip, plus Alex😊 and CAMDEN this year. Saturday we leave for Sunset Beach.  Always excited to go on these trips but the anxiety kicks in worrying about forgetting some important piece of his medical equipment or one of his 22 medications.  But with every trip, we make it work.  We always do!  And Alex always proves that he can adapt to a break from his routine.  So as I write this as we sit in a much needed infusion at Levine.  Trying to squeak in a couple of extra days before his next infusion.  We'll have to stretch it over 11 days, but we can do it.

 

Yesterday was bittersweet as we finished off the riding season with Misty Meadows.  If anyone caught CNN this past weekend, you might of seen the farm featured on their heroes segment.  Harry Swimmer was selected as a much deserving CNN hero of 2016.  We just feel so honored and blessed to be a part of Harry's mission.  So we will see what happens, fingers crossed and prayers that he wins.  Just an awesome gentle soul that changed Alex's life and many others like him. But as I said, yesterday was bittersweet.  Alex's has a dedicated team that has been with him for years side walking with Alex and Pepper and leading him too.  And he has an instructor who never ever gives up on this kid.  We are just so thankful for this happy place.  So next Saturday he rides at 12:30 in the Spring Festival and then it's over for the season.  We will miss these people and horses tremendously.  This next month after we return from our trip, we have his pulmonologist, cardiologist, neurologist, and ophthalmologist all in May.  So we will get everything under our belt before this kid's summer starts!  Can't wait to share our trip with all of you in another update!

Alex and Harry! 

Alex and Harry! 

2 Years!

It's been 2 years!  2 years since I last laid our sweet boy in the hospital bed at Levine, in preparation for our long awaited scoliosis surgery.  But most of all, it's been 2 years since his stroke.  For those that we have just met, this stroke was massive.  I never thought we would ever be dealing with the challenges we have dealt with over these last two years.  Matter of fact, I never thought we would be on oxygen at night, tube feeds continuously 20 hours a day, weekly infusions, constant blood sugar sticks, suctioning, more breathing treatments, more sedating meds and the list goes on.  But we are doing it and so is Alex.  I never imagined how much more complicating things could get.  But I look back through his pictures from the first 3 weeks after surgery with tears rolling down my face.  That time in our life was so incredibly hard as every bit of our faith and hope was put to the test.  Our hearts continued to break as we grieved a different kind of loss and then it came time to take Alex home and figure this so called life out.  And here we are now.  I'm not gonna say any of this was easy, but Alex has continued to bring sunshine to our days when there's rain, give us more and more hope, and remind us that God's got this.  He brought hope back into our lives.  Alex in his darkest days has smiled and reminded us that we will all be ok.  I included the video I put together days after surgery.  And for those that follow us on Facebook, pictures from those first few weeks of Spring in 2014.  Those of you who follow our story, please feel free to share.  I feel like we all can learn a little from Alex.

 

In our latest medical trials, Alex's blood sugar has been all over the place. Before continuous feeds his sugar would drop drastically.  He was experiencing hypoglycemia, where his sugar would crash and at times, so low that he would have a seizure.  We've had that under control, but for some reason now, it is spiking, also known as hyperglycemia.  We were worked into Dr. Vanderwell today.  This endocrinologist is amazing.  He understands mito and just gets these kids.  He wants us to just continue to monitor his sugar.  The positive thing is Alex's body is recovering  on its own though.  So, it is making enough insulin.  But in some cases, you would treat this with insulin to level him out more.  Although with Alex and his history of low blood sugar, he doesn't want to chance it lowering his sugar too low.  So, if we can avoid insulin, even spiking to 400, recover and be back to normal, we need to do just that.  The concern is how hard this may be on his pancreas.  I also worry about him dehydrating from his sweating and what it is doing to his body.  He also mentioned this could be the reason for lack of weight gain.  So, it is a vicious cycle.  But I feel like I have him listening to me.  We go back in 3 months and check his A1C again, as this time it was normal.  This is the average over 3 months.  Hopefully things will stabilize a little.  Also this Monday he has a GJ tube change under anesthesia bright and early at Levine.  We will also combine his infusion with that day.  And for now, we are just taking in our spring break, trying to relax a little.  For now, I leave you with the surgery video.  Thank you for holding our family up through these last two years.  http://youtu.be/xB5Ru7FZBHY

 


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Another Tough Round of a Virus

Alex never plays by the rules as we all know.  He's always a mystery and that makes things so much harder for him.  About 3 weeks ago he came down with a virus or possible infection that caused a lot of congestion.  And of course we tend to blame things on allergies at this time of year.  His pediatrician put him on a round of antibiotics to hopefully get ahead of the game and increased his nebulizer treatments.  It seemed to finally get him to a point of not coughing as much and not as congested.  We were able to put the suction machine away for a few days.  Well the last few days have almost been like a relapse of what he had before.  On top of that, he is sweating a lot.  And with the sweating comes, losing fluids.  What has really been baffling is his blood sugar is spiking at night.  Of course there is always the fear of another organ being effected, so his doctors are ordering more tests for his next infusion.  Sadly those tests should have been done at his last infusion on Tuesday but the lab confused doctors and orders and now we are holding out till next week, so his port doesn't have to be accessed more than needed.  They did check his pancreatic enzymes and they were normal, although they were on the low end of normal.  But next week, they will do a metabolic panel and check his A1C, which would calculate the average his blood sugar has been over the last couple of months.  I guess the scary thing is his blood sugar is elevating as he is sleeping.  When they checked before and after infusion on Tuesday, it was 95 before and 85 after, which is a little odd considering we just pumped D10 into his blood.  So, possibly the A1C will give them better results to go on.


But anyways back to the sweating and everything else going on.  I hate to think that we aren't keeping him hydrated enough with once a week fluids.  It's hard enough to fit that entire Tuesday afternoon into his busy schedule.  But what comes with all of this is his extra movements, even while he's sleeping and the fatigue.  But we are trying to get it all figured out, sometimes spot checking his sugar 3 or 4 times a day.  And yes, he's not feeling 100 percent.  It's just hard to see him when he is this way.


With only a week till Easter we are gearing up for this last quarter of the school year.  He's doing the best he possibly can.  I am so proud of how far he has come.  As I passed the children's book section in Target the other day, I kept picking up cute picture books that he has always loved.  I could finally say, we are so past these now.  Every night Alex and his Dad continue to read a couple of chapters out of a chapter book.  Lately it's a Judy Blume book.  He loves hearing the story recapped from the night before and what happens next as they read it together.  Sure, I'll pull out those picture books that he loves, but Alex can do so much more now.  Now if we can just keep his teacher Rachel with him next year, we would be so happy.  It really takes the right person with him.  And she has been the perfect fit.  His team has been phenomenal this year.  He even has the SAC teacher at Kennedy who continues to reach out to him.  She serves as his IEP coordinator also.  And she has encouraged developing relationships with his classmates that actually attend his middle school.  They have all written letters back and forth.  The best part about this team is they really get Alex.  We are trying desperately to get him excused from EOGs again.  That's just too much to put on him right now.  But we will see what the state agrees to do.  It's hard to convince someone that has never met the kid that testing would be more detrimental than good for him.  But for now, we try to get this boy feeling better and hopefully figure out what's causing his latest issues.  So for that, I ask for more prayers to get him past this setback in his health.  Hope all of you are enjoying these spring like days.  We're counting down the days before I can get this boy to the beach again!  

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As the Security Guard Saga Unfolds....

I'm always uplifted by our friends and family's encouraging words and support.  And yesterday was a pretty rough one and there was our Team Alex right behind us.  So, opening up my inbox this morning and Facebook too, I felt the love.  As I think back to yesterday, that event was not our norm for a visit at Levine, thank God!  But still I am not looking forward to Tuesday afternoon.  Hopefully Fla(Flay), my favorite security guard will be there.  Fla and I bonded over late night bathroom breaks with CAMDEN on numerous hospital stays.  CAMDEN had gotten to the point where he would do a little puppy dance when he saw Fla and then yesterday happened with the not so nice security guard.


I have a dear friend who works as an assistant to many doctors in the neonatal wing at Levine.  She's always just been there with a surprise slice of breakfast pizza, a warm smile or just a friendly hug when I most needed it there.  Well she text me last night and then this morning and asked if she could share my story with the CMO.  I had no idea what a CMO was, but I was happy to get the situation out there.  Well, an hour later on the way to Alex's pediatrician office, the Chief Medical Officer called.  My friend Rita happens to be his assistant also.  I'm starting to think I want Rita's job!  He was awesome.  It was obvious he was not going to let this happen again.  Honestly, I considered not answering the phone.  I preferred putting this event to rest.  I was beat down from the day before.  But he listened and understood and was going down the reigns to fix the situation.  After returning home from Alex's pediatrician office, a message was on my home phone.  This time it was the head of all security at CMC and Levine.  We talked too and he stopped me halfway through my story and said this is a customer service issue and that needs to be addressed.  He never made any rules about service dogs.  It's a law that he is allowed anywhere this child goes or with me or Matt.  And there should have been no question.  He apologized up and down.  I don't know what will happen to this lady.  I just hope if she is still at that elevator, she can get over it.  This kid's care is way more important than a not so nice person.  Obviously we all have choice words we want to call her, but she really is just an unhappy person.  Don't get me wrong, I'm not bringing her doughnuts, but I just can't be haunted by her ridiculous attitude.  But I also think I have quite a powerful corner behind me there and things will get better.


Aside from what turned out to be a much better day, Alex was his coughing, gunky, draining self today at Dr. Temple's office.  She started him on a round of antibiotics and steroids in his nebulizer.  Hopefully that will do the trick and we can stay away from oral steroids.  Steroids don't sit well in a kid with a movement disorder.  We sadly missed our riding lesson this week, but he was just coughing too much.  Still smiling though, he's doing ok.  Once again we love our other little corner of people.  You lift us up in so many ways!

 

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Security Alert....Boy and Mom with Dog!

As you know, CAMDEN goes everywhere with Alex.  It's never an issue.  We go to therapies, doctor's appointments, grocery stores, restaurants, church, the mall, hospitals, you name it. According to the ADA, he is allowed to go anywhere Alex goes and/or with Matt or I as his handler.  Today we walk into our children's hospital that we have frequented for the last 6 years with this dog.  There's been one in particular security guard that has given me the stink eye every time I see her.  Sadly my favorite security guy was not there today.  As I'm getting on the elevator, she stops the other family on the elevator and asks if they are afraid of dogs.  The family had no idea what to say.  I'm sure by then they wondered if they should be afraid of this dog.  Then another family that was getting on, she asked also. I was stunned and told her in my most direct way, "Mam, I think they will tell me if they are afraid of dogs".  Of course she gave me her line that she was just doing her job and is a security guard but in a very hateful way.

 

Obviously, I can't just let it go.  I don't leave things unsettled.  She messed with the wrong person.  We pushed through another infusion.  Poor kid coughed something fierce through the entire 3 and a half hours.  And then it was time to leave.  Guess who was holding her post up at the main lobby elevator?  I just nicely touched her arm with my cute kid in tow, sweet golden retriever and our Florence.  I was going to try to work this out with her.  Understand this woman is obviously scared of dogs herself.  I told her how it upset me that she asked these families if they were afraid.  She told me that I didn't have to worry about it because I'm supposed to go in he back entrance anyways.  Well......I told the rude woman that she can't do that and that's discrimination.  Yes, I pulled the discrimination card.  And I asked for the number to call her supervisor.  Well if you were working or had a child that was inpatient at Levine at 4:20 today, I was the hostile female they talked of over the speaker all over CMC and Levine.  Needless to say , head of security and family centered services was heading out to break up this ruckus that this kid and his dog had officially caused.  I think after talking with family centered services, they resolved the matter.  He played interference between me and security.  Apparently therapy dogs with volunteers have to go in the back entrance.  And this woman was generalizing all dogs that came in there.  I have no idea what happened between the guy that spoke with me and security once I left.  But apparently I am not the only one that has had a run in with this woman.  Despite winning my battle, this beat down Mom fighting battle after battle for her kid these last few weeks walked out in tears today.  Sadly this woman that literally punched the red button for a security alert is going to see me many other times at that hospital for a very long time.  I really needed that ridiculous encounter today.  And for the $936 that they charged my insurance and Medicaid, I had to put up with that crap.  I try to give everyone a chance.  I've had run ins with occasional nurses, the waiting room attendant on the 5th floor, ER confrontations and even confrontations with doctors over my boy in a hospital bed.  Each has usually worked itself out.  It just goes with the fight of being a mom of a child that is so medically fragile.  Even the waiting room attendant, Diane waves at me through the window each Tuesday now, smiling ear to ear.  Diane claims she is highly allergic to dogs.  I do give people a chance.  But this woman today embarrassed me and was downright ugly to me.  I just did not need that at all.  But that's another day in the books for us.  Tomorrow, on to the pediatrician about this congestion and cough Alex has and back to another battle I'm fighting in regards to online medical record access when a child turns 13.  If anyone has any pointers on that one, feel free to share.

Infusion Today at Levine. 

Infusion Today at Levine. 

Going on 13!

After an extremely long day, one long anticipated neuro appointment for Alex and a 3 hour infusion at Levine, I am finally getting a chance to finish this post.  There is so much to process from the appointment today, so I won't go in to all that.  But in 4 short days, this sweet boy of ours turns 13.  Why does this birthday have to be so hard?  It's doesn't cause anxiety like a typical teenager would cause.  It is far from that.  There are no hormones out of control with Alex or anything that typical moms warn you about.  Heck, he still looks 10 in a lot of ways. What it is to our family is that teenage years for Mito kids like Alex, don't always have the best track record.  So, yes the teenage years scare me.  And then of course there are all the things that teenagers do, that Alex will never do.  The first car, the first Prom, the first college acceptance....all those things we take for granted.  And don't say, never say never...I'm just being realistic here.


A couple of weeks ago at church, a friend handed me a letter she had written.  It was kind of a "I know what you're feeling kind of note". But it was also 4 pages of someone who really got it.  When I finally made it through her letter, tears and all, I felt this sense of relief.  We are so much not alone in this.  I thank God I have people like her in my life.  Something many of you don't know about me is I run the special needs ministry at my church.  Through this awesome program we have at Christ the King, there are some amazing families who have taught me so much.  Our stories are all very different, matter of fact, there are no other Mito families.  But we all some how, share the same trials.  We have each walked that walk.  13 is 13 for most.  It's the magic number into the teenage years.  Yes we are scared what could potentially lie ahead for Alex.  But I'm also so excited to see what plans unfold.  We are doing this birthday low key, just family and a few others who are like family.  But if you are curious what this boy will be doing, listen for the squeals outside from our backyard.  He's so excited about a wheelchair swing we are putting together for him.  Finally he will be able to reach his feet to the sky and still be hooked up to his feeding pump.  I am so completely utterly proud of this kid!  He has been through so much and continued to smile, and with everything he does, he is the hardest worker I know.  I'm sure this is not the last time you will hear me mention his birthday, but just wanted to give you all a heads up just in case this Momma is overflowing with tears on that very day.  Thanks to all of you for being a part of each and every step of those 13 years!

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One Step Forward, Two Steps Back!

When you have a baby you tend to measure their progress by milestones.  Each milestone is usually another developmental goal.  Within a year of being a new Mom, I learned to call them inch stones. I sadly quit recording the baby journal that most take for granted. We have never sat on our own, stood on our own, actually stood flat on our feet, really weight bearing through the knees, or never the less even commando crawled.  But there are some things that finally happened like rolling over in his own, scooting across the house on his back. He literally would shut himself in his room and play a game of not letting me in and laughing nonstop.  Then his spine got worse, so things got more difficult.  Then he had his scoliosis surgery to hopefully make things easier.  And knowing every risk whole heartedly, he needed that surgery.  And now fast forward to today.

 

Alex gets therapy at Touchstone 3 times a week. He gets PT with feeding one time a week. He gets OT one time a week and then PT and OT co-treat one time a week.  This all got bumped up to this many times once he had his stroke. 

 

We are now at renewal time with Medicaid. If it weren't for Medicaid, we could not afford his therapies.  With renewal, comes a re-eval. We aren't meeting goals but instead showing some regression.  Yes, I knew the inevitable would be the case but in Medicaid's eyes, it doesn't matter.  How do you paint a picture of my Alex on a simple evaluation?  How do you show these people who sit behind the desks in suits, that maintenance for someone like Alex is progress?  Medicaid is now considering kids like Alex as candidates for individual therapies twice a month only.  He is a chronic case who needs maintenance.  We are trying our best to get them to agree that Alex has had a lot of medical setbacks, especially in the last year.  But they have their "system".  Mito completely exhausts Alex after just one hour of school at home or even one hour of therapy or just playing hard. But he needs these therapies to keep his stamina up and to keep his muscles from completely tightening up.  And he needs the routine.  Without them, he could really regress.  His therapists are asking for Medicaid to look past their guidelines, just so he can have therapy twice a week instead.  I'm praying they see it also.

 

But all that brings me to this.  Watching his regression is heartbreaking.  I still have videos on my phone of him pushing around in his walker.  Now, even lying on his side is a struggle.   Turning his head to the left is really difficult and even bridging on the floor isn't happening.  So, to my friends watching your babies sit up for the first time or hold their head up for the first time....those milestones are a gift.  Don't take them for granted.  The beauty of all this is that Alex is smiling every single day.  He loves therapy, riding horses, and going to school more than any kid I know. Infusions are keeping Aex out of the hospital and allow him to be a kid. Mito is the beast in all of this, despite his stroke.  Hopefully Medicaid will see the same.

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One More Tube Change for the Books...

We survived another 5:45 arrival time at Levine today for Alex's GJ feeding tube change under anesthesia.  It's obviously quite routine for us, but there is never just a normal routine tube change for this kid.  After getting there earlier than even the parking attendants, we made it there in just enough time for some favorite nurses and an amazing anesthesiologist, Dr. Kate, to  switch our infusion day around to be done in the PACU today.  This is so critical in Alex's case because it's one less entry into the disease infested hospital, one less port being accessed, and one less exhausting day for Alex.  I was thankful Dr. Kate recognized the critical situation that it was.  And as I like to say, she helped the infusion room nurses look outside the box a little.


But today was pretty calm.  And we got 2 visits lumped in to one for once.  Alex was also able to roll out of the hospital feeling so much better than he does after a regular tube change day, because this time he was loaded up with the max fluids and D10 that he needs each week.  The only glitch is probably my annoyance I continue to have with the MRSA glaring over our heads. But this time Alex's recovery nurse asked me quite a few times if Alex was treated for MRSA.  And no he has not been.  But it continues to make me wonder if we should treat him for it.  Because we are and will always be the room with the yellow gowns and gloved up people to protect and prevent Alex from spreading these germs.  It's been exactly one year that infectious disease ran that test.  Yet I never found out till May.


So for the most part today went well.  His breathing still made me nervous, but thankfully they are staying more on top of it now, since his sleep study.  I watched his respirations drops to 3, then 2 at one point in recovery while he was on oxygen and my heart just completely stopped for a minute.  But thankfully Alex aroused a little and started taking more breaths. Our appointment with Alex's neuro is actually next week instead.  So no answers from Harper yet.  But for now we are doing ok. It's nice to have tomorrow afternoon freed  up without having to do infusion.  So, therapy in the morning for our sweet boy, and then nothing but rest and playtime in the afternoon.  As my iPad falls on my face and my eyes keep fighting sleep, I gotta shut down.  Just wanted everyone to know that your ever flowing prayers once again protected our little family.

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Orthopedic Follow Up

We had Alex's orthopedic appointment today.  Dr. Scannell seems to think there is no rotation happening and that with the hardware and spine, things are staying stable.  Yes, we are relieved but also frustrated because Alex is not comfortable.  The screws at the top that are loosening have not changed.  Sadly I was hoping that would be the answer to a lot of Alex's issues right now. I had to sit Alex in a straight back chair for the x rays.  Talk about painful for this kid.  It was super hard, but he managed to grit his teeth through it and I held him up.  Botox does not seen to be working.  We walked in to this waiting room today and Alex clammed up. He had fear all over those big blue eyes of his.  This is the same waiting room Dr. Tsai uses for his botox patients.  Not good!  We were just in there 2 weeks ago!  Anyways, we looked at Alex's toes, his big right one is getting beat up in his shoes.  So we are trying to keep him in socks as long as we aren't out and about.  Hopefully we can keep his toe comfortable enough, so we don't have to do any release surgery on it.  Because then braces would be required and we know Alex won't tolerate that.  Then he also addressed his hamstring.  As long as we can position him in his chair comfortably, we won't do tendon release there.  Dr. Scannell wants to stay clear away from surgery with Alex unless it is absolutely necessary.

 

Dr. Scannell feels like the issues Alex is having with his head turn, somewhat like torticollis, are from a  neuro standpoint that Dr. Harper can not even fix.  So, I am at a loss of not knowing how to help this kid.  Bottom line is, this stroke sucks!  We all want to fix our children to have the best quality  life and Matt and I can't do that.  So, here we are.  No answers, no solutions for relief, and no direction of doctors that can really help him.  Friday we return to Dr. Harper and see what she has to say.  Trying to remain positive with a hurting heart for our sweet boy.

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Countdown to 2016!

New Years Eve, it's really just another night in our house.  Always has been for the last 14 years to be exact.  Matter of fact, I'm sitting here getting a pedicure savoring a rare just me time hour before heading home to bring in 2016 with Alex, Matt and the furry ones.  We have been through so much this past year, that savoring those final hours at home are all we could ask for.  My biggest deal is sealing another year with a kiss at midnight with my amazing husband and sneaking into Alex's room for his midnight meds and and a little kiss on his cheek also.

 

These last couple of weeks we have taken in every bit of Christmas break and relished in the time of no doctors, no school and we actually took a break from therapy too.  We got to step out of routine for 2 short weeks and spend time with all of our family in the Christmas festivities.  And Alex seemed to keep up his energy enough to enjoy this holiday.  The only bit of routine we did keep was of course his D10 infusions.  And this Monday we head full force into tons of appointments, seeing Dr. Scannell regarding Alex's spine and rod issues, infusion on Tuesday, school, all his outpatient therapies and Friday finishing up with a neuro visit with Dr. Harper.  Then the following Monday, another GJ change under anesthesia.  So, yes our little break from reality was so needed before our crazy schedule starts back up.

 

The last update I posted before Christmas, we had just received Botox injections again.  Sadly that painful procedure has done nothing for Alex.  So we will keep the follow up with Dr. Tsai for now and decide to probably not continue the Botox.  Kind of sad that we haven't had positive results with it but also relieved in a way that we don't have to repeat this gruesome process.

 

So as we bring in the new year, I continue to count my blessings and pray that 2016 brings many more.  One of those blessings is being surrounded by our Team Alex fans in everything that we endure.  You make this so called life that we lead so much brighter.  Thank you for continuing to bless our lives in as many ways that you do and I pray for each of you to have a beautiful and fruitful new year.  Happy 2016 friends and family!  Much love to all of you.

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Botox and Another Bump in the Road...

One week till Christmas and once again we are unsure of what is going on with Alex.  I always say, every day is different with him, because it is.  But he's having some frequent rough days again, far more than good days.  He sweats a lot again.  He fatigues in less than an hour of school in a day.  And his muscles are firing constantly in his arms and neck and shoulders.  We also are dealing with positioning issues again because his trunk seems to be rotating since his fusion.  So, all this being said, he is exhausted.  And imagine being exhausted and your body keeps moving, even when you are sleeping.  And with all this, his lymph nodes flare up, his GI system slows down, and he becomes more dehydrated.  This time around, infusion did not perk him up as much as it usually does.  So we are just monitoring things and taking it day by day with him.  January is loaded with specialists appointments and hopefully we will get more answers then.  We are continuing weekly infusions and praying that they keeps us out of the hospital with all the sweating.  It just seems like we are repeating a road that we don't want to go down again.


Yesterday was our four month appointment with Alex's physical rehab specialist, Dr. Tsai.  This guy is amazing.  We returned to Dr. Tsai for a Botox injection follow up.  I've had a really hard time with convincing myself that these injections are the right thing to do for Alex.  Back in August, Alex got 3 injections in his left hamstring and one in the muscle that is a trigger point for the right big toe to relieve some tightness.  It really provided very little relief.  And my Momma heart had a very hard time justifying putting our child through that pain and trauma again, especially right now, just to see if it might work.  But we sat down with the doctor yesterday and let him re evaluate.  I looked at Dr. Tsai and asked him for his honest opinion.  I'm sitting there looking at a doctor who suffers from cerebral palsy himself and my heart just trusts his judgement, just as we entrust so many other doctors in Alex's care.  So we basically doubled the dose and are praying that we will know for sure if this will be the next best thing in treatment for Alex.  God bless this sweet boy.  5 shots this time and no tears.  And the numbing spray only numbs the skin, not the muscle itself.  I swaddled him in my arms on his side, Florence cradled his head, the nurse held his leg from jumping and all 4 of us, including Dr. Tsai sang "C is for Cookie", 4 times.  We did it!  Alex shook all over through it, but he did it.  Poor dog was the most pitiful.  He laid with his head down until it was all over and then came up for kisses to reward his favorite boy.


So, needless to say, having a break from school and a little break from therapies is much overdue.  Tomorrow, well today as I write this, is the last day of school and Christmas break begins.  Hopefully we can keep up enough steam to soak in the holidays and enjoy visiting with some of our friends and family.  For now, we wish each of you a wonderful holiday.  As long as all is good, as Christmas should be, we will catch up at the end of the year with all of you.  Like I've said over and over, we are so thankful for each of you!  We are truly blessed to have you in our lives.

 

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Our Happy Place!

After a very long day at PT and Feeding therapy and then infusion at the hospital, which every Tuesday is for Alex, I came home to a wonderful surprise.  I actually was able to just by chance catch this clip on WSOC on Sunday.  So I have pushed and pushed to get this link.  As you know, Misty Meadows is our happy place.  For 30 minutes, once a week, my child is free!  The only way to explain it is to actually see what they really do.  Carolina School of Broadcasting came out last year to do a segment on Mitey Riders.  They spent hours there which a typical news group can't possibly do. Anyways, us families were clueless about them coming, so we were not dressed for our tv stardom at all.  Note my bright pink sweatshirt and messy hair!  But they totally did this beautiful farm justice.  And the kids are the best in it!  Alex is of course the child lying down on the horse.  And Harry could not have said it better, we are all like family there.  We love Harry and Joy and the rest of the volunteers and staff!  Anyways they featured it Sunday afternoon on their show, Carolina Connection on channel 9.  Just wanted to share our happy place with you!  https://youtu.be/BSXdCx9zFFw

 

Alex and CAMDEN with Pepper

Alex and CAMDEN with Pepper

On Being Thankful In 2015

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30 days of thankfulness is quickly passing by.  Only 2 more days till Thanksgiving.  And today of all days Alex is completely exhausted.  We're sitting here in infusion at Levine and slowly his energy is perking back up.  In a matter of a few hours I have seen what I am truly thankful for at this time. Alex doesn't have as much energy as he did 6 months ago.  He still has a shoulder that is constantly jerking.  And his arms and right leg are in constant movement.  His oxygen is dipping a lot during therapy and sleep.  Our challenge is trying to figure out how we can keep a nasal cannula on for his O2 because he isn't tolerating wearing the cannula.  I just don't get it.  Why does it have to be so incredibly hard for him?


But all that brings me to this.  I am thankful that no one gives up on this kid.  No one throws in the towel and says there is nothing we can do.  And especially Alex, he doesn't give up.  I don't know why everything has to be so hard for him, but it is.  But somehow each person involved in his life brings out that smile in some really dark days.  His team of doctors, therapists, friends and family bring out the best in this kid.  And they never give up.


So this Thanksgiving, we are thankful for each of you and the love and support we feel from you on a daily basis.  That in itself gives us the strength to keep fighting.  I pray this infusion gives him what he needs to go through Thanksgiving in full force.  We're spending this year with Matt's family.  As we are torn each year, our hearts are always with both.  I'm starting to hear giggles as we have about 45 minutes to go.  His D10 is officially kicking in.  CAMDEN on the other hand is sleeping soundly.  Hopefully we are on the upswing after another official weekly crash.  Prayers for a wonderful Thanksgiving for each of you.  We'll see you on the other side as we begin to decorate for Christmas. 

An Update on Oxygen and Sleep Study Results

Just got back Friday from a week with Grandma, Alex, and Florence at the beach. Traveling is never easy for us, but we did it. As I looked at the van when we left our garage a week ago, I knew the only way to even change Alex on the van floor during this trip was to take everything out of the van to clear him a spot. The quick potty breaks we all take for granted! 5 hour drive turns into 6-7 hours in the van. We stayed at the same wheel chair accessible house as we always do, where I knew I could put a full size mattress on the floor for him to safely sleep surrounded by every pillow and blanket in the house. I knew the wheelchair beach accesses we could use and of course all the Salty Dog Marina restaurants we could walk to. If you saw our van, you would totally understand why travel is so hard. Suction machine, nebulizer, cooler for meds, 2 cases of formula, shower chair that has to totally recline, lots of extra clothes and bedding and towels that he has to have. On top of the essentials that us women had to have, we were packed in. And CAMDEN found his quiet little spot for 5 hours. But we did it! And we had a blast. Alex loved the breeze, the cooler temps, listening to music at The Salty Dog, and couple of sunny days we had. He managed to get a pretty feisty sunburn. And Camden had his time out on the beach too. And with Florence's help, Mom and I were able to sneak away to shop some too. So a lot more great memories with this sweet boy.

We got back home just in time for Halloween. Alex was the Disco Kid/John Travolta Jr. this year. With our disco lights on the front porch, it went right along with the theme. I was reminded once again how hard these holidays are. Candy is pretty limited for this kid, but we stopped at a few houses for the experience. I think we hit 5 houses total. I think the hardest part for me every year is hearing all the kids run from house to house and yes, some of the stares. So, no, Halloween is not easy. My Momma heart hurts and despite the smiles that Alex shares with each of you, I also see the hurt under those smiles. As a friend of mine posted yesterday of the yearning for that life they don't have. I get it, and it is really hard. So, thank you Lisa for reminding me that I'm not alone.

And lastly, we finally made it to Dr. Ashe's office to go over the sleep study in full detail. The good news is, his CO2 is where it needs to be. It's not alarmingly high. Dr. Ashe was really surprised by that. His oxygen averaged at 88%, but sometimes dipping as low as 84%. Still in "insurance eyes" that number can be a challenge to get things covered. But he would like to see it at 92% or more. The thing that really worried him was his shallow breathing. He's never seen a child take as shallow of breaths as Alex does. So he's not taking really good breaths. And that same thing is happening when he's doing any physical activity during the day. And sometimes he even seems to forget to breathe. So, he's getting us a rescue ambu bag right now to use 3 times a day to hopefully expand his lung capacity. He's also trying to convince insurance that Alex needs home oxygen and then Alex would only use it at night and during therapy. So thankfully, we have doctors in our corner who have finally seen what I've been worrying about this last year post stroke. I just pray insurance and Medicaid don't put it off too long.

So that's it for now as I sit at the van place and have successfully chopped off the service managers head. I think I will meditate for this last little bit, so the lift motor torn up by dogs leash 2 weeks ago might possibly have the chance of being covered under warranty. Sadly they expected me to leave Alex trapped in the van for two hours and not continue to try to get him out after therapy one day in a parking lot. I am livid! But as I finished this post the lift motor so far will be covered. A tough day and weekend, but we'll be fine. Thank you also for those that kept our Ninni in your thoughts and prayers. After shocking her heart on Saturday afternoon, they got her out of AFIB. She is back home and feeling much better. Each day is a new day!