Seasons... a quick update

I'm sure you've noticed that we took a considerable break from the blog.

To every thing there is a season... and some are harder than others.  In the periods of waiting and watching, it is hard to provide updates.  We are well-settled into our routines now, but we still wait for answers from specialists.

Throwback Thursday

2016                                     2017                                     and           2018

Last month during our 2 day trip to Wichita, we saw the cardiologist, neurologist, pulmonologist, geneticist, and dietician.  We are hoping to have a sleep study scheduled soon and also got Lennon measured for a custom wheelchair.  These processes are slow-going.  There is a lot of waiting involved while insurance decides what and when they will cover treatments, tests, and equipment.  Meanwhile, we (parents, family, nurse, therapists etc) try to figure out how best to support him in the meantime.

December 5th, Lennon flew to Wichita for possible pneumonia.  Either he had it and the antibiotics knocked it out right away or what they saw on the chest x-ray was residual scar tissue from prior aspirations. Either way, he was doing much better after a couple of days, so we came home.

Tomorrow, we travel to Wichita again.  This time we will meet with the gastroenterologist and hopefully figure out what is going on with the vomiting and lack of bowel movements.  (Sorry if that's TMI.)  Later in the day, we will see Dr. Beltran (geneticist) and Dr. Welch (neurologist) for follow-up appointments.

In happy news:

1. A miniature family reunion is in the works... :)

2. It's Winter Break! (No school for mom or the big kids until January 7th.)

3. Lennon was nominated for a TinySuperheroes cape and has received enough donations to rush his order.  https://tinysuperheroes.com/squad-super-lennon-k/ 

Saturday morning thoughts

Saturday mornings are great for thinking.  I brew a pot of coffee and enjoy the quiet while most everyone is still asleep.  To be honest, the only reason I got up so early (5 am) is because someone decided to kick his oximeter probe off his big toe. We listened to music for awhile, snuggled, and even did some dancing in the kitchen.  :)   

Of course that was before the vomit and the suctioning, which has become a pretty regular thing.  But we live for those tender moments between medical needs.  Since then it's been more suctioning, dressing, bathing, giving meds, venting the tube, monitoring vitals, and trying to figure out the best course of action.  Add in a splash of looking at old pictures and researching mitochondrial disease and treatments and you get the full picture. 

Have you ever felt like you're at the top of the rollercoaster just waiting for that last click before the plunge?  That's kind of what it feels like with our little guy.

No stool- click
Coughing- click
Elevated heart rate- click
Low O2 Sat- click
Vomiting or posttussis emeisis- click
Hiccups- click
Increased myoclonic movements- click
Fever- click
No nap / too sleepy- click

It is hard to live your life constantly on watch, on edge, and for Lennon to constantly be on a monitor or feeding tube.  October was hard for all of his caregivers.  Even the ones who are paid to do the aforementioned things.  We are not able to determine why he is having such difficulty lately.

Next week we have four appointments in two days.
     Seating clinic- fitting him for a wheelchair or stroller
     Neurologist- check levels and adjust medications
     Cardiologist- address elevated heart rate and the implications of seizure/stroke events on his heart
     Pulmonologist- address the retractions and concerns of aspiration with more frequent vomiting

This still leaves us with questions about his digestive system.

We could really use some good news or at least some definitive (or evidence based) answers.  It is increasingly difficult to hear "we don't know why" from our specialists, even though it is true.  Knowing what to anticipate with Lennon's health would make it much easier to address the bigger questions that have been weighing heavily upon us.

In April they asked us some really difficult questions, and now our providers are continuing to push us to make drastic changes.  We also feel the pull from family to consider a change of scenery.  Honestly, if we can't come up with a better plan for managing Lennon's health and keeping him well, we have to be closer to medical providers who can treat him quickly and effectively.

Yes, I think moving is a good idea. No, I do not want to go anywhere.  I am afraid of making the wrong decision, of putting undue stress on the Lennon and ending up in another hospital stay,  of uprooting our entire family, of giving us temporary relief with long-term negative consequences.  And then there's the consideration of time... because I'm pretty sure we are past the "if necessary" and to the point of "when are we doing this?"  But how long do we wait to see if he does better or to start applying for jobs and housing in a new place?  How do we even decide where, much less when?

7 hours of coffee, research, and care later... I still don't have the anwers.

October (Edited to add...)

October has proven to be a difficult month for Lennon each year.

His first October (2016), he had what seemed like constant viral infections.  His stomach seemed to be constantly upset and his diapers proved it. (I know, TMI.)

He was still very cute though!

This was when he was meeting all his milestones and before the diagnosis, but I remember thinking that something just wasn't right.

His second October (2017) we learned just how quickly a good day can turn into an extended hospital stay.  This ended up being his fourth stay at Wesley Children's Hospital.  We'd had a fantastic morning and afternoon.  He knocked over the trash can SEVERAL times, tried on his Halloween costume, and tried to carve pumkins with the big kids.  Then in the early evening, he spiked a fever and the seizures started.

We knew that we needed to be concerned.  We had already begun genetic testing and had actually just submitted our own blood samples for the genetic variance analysis, but I don't think we ever would have imagined the changes that we've seen.  It's crazy how long ago this seems.  It was one year ago today.

part 1

part 2

This is his third October.  Just a couple of weeks ago, we had our most recent hospital stay.  We've found that those viral infections are STILL a likely cause of his decline, even when we can't pinpoint what he had.

Lack of bowel movements has been a concern for quite some time, so we'd seen Dr. Moffitt for that earlier in the week.  In addition, for several days, we had noticed more movement, increased difficulty breathing, breakthrough seizures, and episodes of very high heart rate.  We hoped that by getting his bowels emptied, those symptoms would decrease.  Hello Miralax 4x daily...

Oxygen saturation 96% and Heart Rate 173 bpm

Thursday Oct 4, we went to the ER and had our first successful IV Argenine infusion in Dodge City.  His heart rate settled and his movements slowed, so we went home.  Friday, we went back to Dr. Moffitt to repeat tests since his heart rate was still too high.  They did rapid tests for influenza, RSV, and strep.  He came back positive for influenza A and B, so a flight to Wichita was arranged.

Upon arrival HR was still too high, but... the Miralax worked... really, really well.  If you have a weak stomach, skip the next sentence.  They said he eliminated a liter of poop in two stools.  How is that even possible??  Anyway, nurse Sally has forgiven Lennon, Dr. Moffitt, and me.

The EEG revealed that Lennon had continuous seizure activity on the right side of his brain.  We were able to follow the plan that was used in July for seizure control and we repeated his viral panel, only to find that influenza was not indicated at Wichita.  In fact, we didn't get a for sure diagnosis while we were there, so he was just treated with respiratory support and seizure control.  Medications were adjusted for weight gain.

Now after 2 weeks, it appears that the new levels are appropriate, but we had breakthrough seizures daily, especially when waking up for at least the first week after discharging from the hospital.  To help him during this viral season, we're adding a nebulizer and albuterol to his equipment.  We've also submitted requests for a percussion vest, and cough assist to insurance.  He also got fitted for custom AFOs since his feet are too big for the quick fits.  Those should be coming soon. The design is pretty awesome!

Although Lennon's health is our primary concern, we have also decided that our little guy is a living legend.  We want to make sure that his experience helps other kids.  I hope that when I create my next post it will be to give a full update on Lennon's Legacy Foundation.  We filed the Articles of Incorporation at the end of September, but there are a few more steps in the process.  As always, thank you for reading and for your support!



I originally posted this October 21, 2018, thinking that our October issues would be over.  I was sadly mistaken.

October 14th he flew back to Wichita after a seizure episode and was released the following day without further testing.

October 26th we flew back again and found continuous seizure activity, despite much improved outward presentation.  Several boluses of Keppra and Lacosamide later, he was mostly seizure free, although even yesterday (and today) he continues to have seizure discharges.  Most of his activity is in the right frontal lobe which presents as facial movements and nystagmus (eye twitching.) 

Considering there are only THREE days left in October, I am optimistic about being done at Wesley Children's this month.

Quarterly Check-up

Quarterly check-up with the geneticist, dietitian, and neurologist today in Wichita.  Things look pretty good although Lennon did have a breakthrough seizure as we were leaving the first appointment.  That just confirms the doctors' thinking that we need to increase medications due to his growth.

He is up to 34 lbs and 37 inches! Such a big change from April when he was only 25 lbs and 35.5 inches. He's gone from 18m clothes to 4T.

In addition to increasing one of the seizure meds, we are also going to decrease his feeds slightly. We need to be sure that his weight gain does not interfere with his breathing. We are taking away about 150 calories per day and will check his progress in all areas at our December appointment.

Other things that were discussed include getting either a wheelchair or medical grade stroller, a handicap placard, new AFOs, and swabs for the granulation tissue on the g-tube site.

*Pictures to be added later.*

Progression and Regression (tissues may be needed)

Lennon is almost 2 1/2 now.  He was 11 months when we had his first major hospitalization.

There are days that I honestly can't remember him... you know... the way he was.

NOTHING anyone says can prepare you to grieve for a living child.  

I miss my son.

He was a happy, healthy, little guy before THIS happened... our first PICU stay.

We came home thinking it was just a bacterial infection and dehydration that caused his seizures. We learned that we could treat him with an anticonvulsant and that he might be able to wean off of it in a couple of years.

but then THIS happened... PICU stays 2 and 3... when he couldn't see ( we still don't know if it is true blindness or cortical visual impairment), his lactic acid levels were too high, and the seizure activity was located in new areas of his brain... and the doctors started thinking there had to be something more, so they gave us the name MELAS and started the process to see IF insurance would allow this test and prepared to petition the state medical board.  

We sent Lennon's blood samples in June to test for MELAS.  We knew that the process would take 10 to 12 weeks.  That's a long and scary wait, but we had a wonderfully uneventful summer.

I miss my son and the way 

he could still crawl around, knock over trash cans, and keep going back for one more toss from Dad. (Spare us both any negative comments about that.)  

For perspective, the video with Dad is from less than a year ago.

  

 

In mid-September of last year, we were beginning the process of submitting Mom and Dad's DNA to perform a variance analysis since the typical MELAS genes were labeled

Variables of Unknown Significance.

In October, we had been nearly 5 months seizure free.

Then came PICU stay number 4... and we were STILL WAITING for conclusive genetic test results.  

Fall of 2017 was difficult, watching him get thinner and weaker, but not really knowing why or how to help.  

After what seemed like an eternity, we received his test results not long before Christmas.  

CARS2

Not even the specialists in Wichita could tell us what we might expect since only 3 children were documented as having the genetic mutation prior to Lennon.

And then waking up 364 days after his first hospitalization with more seizures... PICU stay 5

     

Choosing to take a trip to Texas in March to celebrate his birthday, partly because we weren't sure if we would get to celebrate another one...

  

Driving to Denver to see the specialists who worked with the first child diagnosed with CARS2 and following their recommendation to have a g-tube placement surgery to fight his failure to thrive (AKA him not gaining weight for nearly a year) only to end up in the PICU for real after 2 days at home.  PICU stay 6/7 depending on whether you count his post-surgery stay.

                           

Coming home and wondering if we were ever going to hear his voice again, if he would ever swallow again, what it was going to be like now that he needed 'round the clock care including skilled nursing.

Not taking ANY videos on my phone for over a month and VERY FEW pictures.

Until I could finally accept our new normal.

***

Being blessed by time with family at the end of July.

       

Only to be hospitalized again the day we were supposed to come home from our short vacation in Wichita... PICU 7/8

But here is our champ, our beloved, showing everyone what he's made of!

He is the light of our lives and "the cutest baby ever" according to his siblings.

   

I may never actually post this... it may stay a draft forever.

Usually when you hear words like progression or progressive, you think of moving forward in a positive way, but progressive movement disorder in itself is not a positive experience. 

With the progress of the disease comes the regression of its host.  

As the mitochondrial disease moved forward, Lennon's abilities moved backward.  

Yet he continues to impress us all. 

It just means that our celebrations are different now because he is different now.

I Love Lennon!

I miss his cry.

I miss his laugh.

I miss the messes he made.

I miss hearing him say my name...

and Christian, and Bubba, and DAD!, and Ha-na Ha-na Ha-na, duga duga duga, and COOKIE!

I miss watching him enjoy his food, smacking his lips and shoving it into his mouth with both hands.

I miss him constantly being underfoot.

I miss him crawling into my lap.

I miss the TV or computer going off and having to plug the router back in because he'd crawled behind the couch and disconnected the WiFi.

I miss him speeding down the hallway to the toilet before I could even walk to the kitchen and hearing him spashing in the water... or dropping toothbrushes in. (YUCK!)

I miss the sound of the trash can falling over and dishes being thrown from the diswasher.

I miss his hugs and kisses when he had better control of his body.

I love that he still giggles.
I love the way he yawns. (That hasn't changed a bit!)
I love sharing new (old) music with him.
I love the snuggles.
I love that he loves his family.
I love the way he still plays with everyone.
I love how hard he works.

But I (not so) secretly long for the little boy who was... even though now he is so much more.  

My baby, my fighter, my beloved, 

Lennon.

Going Green

Mitochondrial Disease Awareness Week is September 16th -22nd.  I'm hoping that you'll all support Lennon by "Going Green" for Mito. 

The problem I've been facing recently is that I've been going green with envy.  It's embarrassing to admit this.  How can I be so overjoyed for others and so envious of them at the same time.  My heart is overflowing with things to celebrate and yet is broken by... Lennon's circumstances.  It's just not fair.

That green monster is kicking my butt... Whispering in my ear.  Every time I celebrate, I get that whisper telling me another thing that makes him misunderstood or another milestone that he won't meet or a journey that seemed so much longer or harder for him.  Someone keeps trying to steal my joy!

The envious voice keeps wanting to lash out, to paint a vivid picture of the suffering that Mito has caused not just Lennon but our entire family.  While his story deserves to be told, it shouldn't come from that source. 

My baby is a warrior, a charmer, a blessing! He will continue to fight and surprise us all.  Saying that it isn't easy is an enormous understatement!  There is constant emotional conflict... and a part of my story that I'm not quite ready to write.

I hope to keep getting good news like friends' pregnancies, new treatments, quick test results, and kiddos learning and growing. I'll be celebrating along with each of you... and I'll keep seeing things to celebrate with and for Lennon.  That green monster will not get the best of me.

If you're interested in Going Green, please message me or leave a comment here on the blog! I'm thinking Thursday, September 20th would be a good day for it.

As always, thank you for your support and encouragement!

Connected

This morning I spent nearly an hour on the phone with Maria (Jacob's mom... the original CARS2 mom) talking about our boys and life with Mito.  It feels SO GOOD to be connected with someone who understands the feelings of isolation, jealousy, and frustration with the ongoing uncertainty.  But we also talked about the importance of not missing out because of all the downsides of having a medically fragile child.

Yesterday, I learned that another mama in Dodge City has a child facing a serious genetic condition.  I very quickly offered my support, even though she has MANY people on her side.  I knew how hard it is to wait for a diagnosis, but luckily hers came through before the end of the day.  I was amazed by the quick turn-around.  I'm so happy that she doesn't have to worry and wait for weeks or months to know what is affecting her little one.

One of the big worries I haven't talked about in the blog directly is the feeling of being invisible.  The feeling that you are completely alone in this.  The feeling that nobody else understands.  Talking to Maria helped with that.  Having our nurse this summer helped with that.  My dear husband helps with that, but we can only do so much to help each other.  Unfortunately, most of our support network of family lives states away.  The ones who are here are grieving too.

Maria told me it takes a village.  I think we all know that it takes a village, even with a "normal" kid.  I NEED our village.  I need to know that you're there.  When I'm overwhelmed, I don't see anyone who isn't right in front of me.  I don't hear anyone who isn't speaking directly to me.  I don't feel the connection with my friends that I am so known within my circle for feeling.  Please don't hesitate to send a random message that you are thinking about us.  Please don't scroll past a post and smile without commenting or giving a like. (I'm sad to say that your feedback on social media contributes to our feelings of self-worth right now.) Many of you have asked what you can do to help us... reach out.  Make sure that we really do see, hear, and feel you... because we are lost.  Even when we look like we have it together we aren't.  We are just getting by.  School friends who have learned about trauma... we are living it.  (Think about the picture of the brain from the slideshow.)


I'm happy to be connected with Maria.  I want to make sure that I stay connected with my friends and family here because we all need somebody to lean on... yeah, I know... using song lyrics again.

I took away four very important things from the converstation this morning:

1. Don't stress about his end of life, you can't really prepare for it.  You'll know when it is time.

2. Realize that worrying takes away from your time to ENJOY him.

3. Trust yourself and your knowledge of what is best for him.

4. Take care of yourself.

I scream, you scream...

Shameless plug...
CHOCO FRUIT
TOMORROW
Your rolled ice-cream purchases help to support All In For Lennon!

Obstacles or Opportunities

I'm not sure how far our "fanbase" on the blog goes at this point, so I'm going to assume that most of you know I'm a teacher.  I talk to my students a lot about "Growth Mindset."  It's a pretty big buzzword in the education community.  It's all about seeing every obstacle as an opportunity to learn.  My goodness is it hard to practice what I preach.

The name of the blog is Life Lessons from Lennon... because we are constantly learning.  Learning new normals, learning how to cope, and learning how to help people around us cope as well.  I sometimes struggle to post because I'm afraid that each entry will sound like a complaint about the life we live with our beautiful boy.  There are significant difficulties in having a complicated child.  That doesn't mean that everything is bad all the time.

I've been reflecting lately on my teaching practices, wondering why my students are giving me so many compliments and why I'm not seeing the same behaviors in those few who have "history."  The only thing that I can come up with is that I'm trying to practice what I preach.  I've shared with them Lennon's diagnosis. They know that I have a family of my own and kids who are not much older or younger than them.  I'm honest with them when I'm struggling, and I genuinely care when they struggle too.  (As you can see, struggle is a buzzword in my vocabulary right now.)

I got called "mom" today by one of my students... he usually calls me by his 4th grade teacher's name.  I giggled because he loves them both, so that must mean that he associates me with good feelings.

Today, I gave my kids a pep-talk today after a rigorous PE experience and less-than-stellar behavior in the hallway.  I told them that even when we are tired, even when we just want a break, we can still choose to do the right thing.  Normally, I would have given the CHAMPS speech: "Voice level in the hallway is a zero, etc.)  Maybe that reminder was more for myself.

I am tired.  I just want a break from the chaos that is going on with the nursing, insurance, attendant care, fundraiser, dad working doubles (because he is stronger than we know), and the brain-fog that has settled in over the last month.  But I can still do what is right.  All these obstacles might just be opportunities in disguise.

So let's end with the positive developments:
Sister is loving school, making friends, and playing volleyball.
Biggest brother is actually reading in the evenings and doing his homework without a big fuss.
Bigger brother is a comic relief and keeps us guessing.
I received donations to sponsor my class with Scholastic Book Clubs (at least 3 FREE books per student already)
Lennon's new attendant started training with him this evening.
Dad actually got to spend the evening with us instead of working a double and will have Sunday and Monday off!

OH, and Choco Fruit 212 Gunsmoke, Dodge City is donating part of their sales THIS SATURDAY to Lennon's All In fund!

Thank you all for reading and sharing Lennon's story on your own social media feeds.  We appreciate your support.

The Things We Don't Say

Emotions in our house are high pretty much all the time, but I think mine are starting to push everyone else over the edge.

Kids are smart, they know when things are bothering their parents.  The trouble is, they tend to add to it because they don't know how to handle all the tension bubbling beneath the surface.  I try to be transparent with them, but I can't be a blubbering mess every time I want to cry.  Honestly... I've probably worn out most of my "Big Girl Panties" if you know what I'm saying.

I try really hard not to throw pity parties for myself.  I try to keep my frustrations and disappointments to myself or the people closest to me.  There are so many things that we don't say, and I don't think we are an exception to other families like ours.  If I'm feeling the pressure, I know other families are as well.

Did you know that there is a nursing shortage in our area?  Did you know that Lennon and other children like him need in home nursing care, have hours allocated to them, and still don't have a nurse assigned?  Do you know how HARD it is to accept the fact that your kid needs that kind of care in the first place?  Do you know how HARD it is to have your caregiver change?  (If not, check out my previous blog post.)

It is hard to make your "other kids" feel important when they have a sibling who needs care like Lennon.  It breaks my heart to refer to them as the other kids too.  There shouldn't be a separation between them.  I will never forget hearing "You love Lennon more than us."  It wasn't even said in a mean or hurt way... it was just the way that the boys understood life to be.  Even when I explained that we don't love Lennon more, he just needs more care, I don't think that mended what was broken.

I can't tell you how many times we have skipped something for the big kids because of the baby.  Nursing and attendant care are supposed to help with that, but even if we had someone in place, there's still the emotional struggle of leaving Lennon to miss out on what his siblings are doing.  This goes so much against my idea of what family is.  We are supposed to build our lives together. 

I can't tell you how many times we've said no to the big kids when they wanted to join an activity.  Sometimes it is because of finances.  (Lost wages are tough to overcome.)  Usually it is because of logistics.  Dad and I can't commit to getting them to and from practices or events given Lennon's daily care schedule, much less if one of us is in Wichita for a 5-10 day stay.

Lennon pretty much operates on a 3 hour schedule: 1 hour hooked up to his feeding tube and then 2 hours free for play, therapy, or snuggles.  He eats every 3 hours to help him compensate for his body's reduced ability to produce energy.  His amino acids, supplements, and anticonvulsants are given at every other feeding throughout the day.  We carry his emergency protocol and a diastat syringe with us at all times. (Diastat is like an epi-pen for seizures, only it's rectal gel... TMI... you're welcome.)  For longer outings we need formula, feeding pump, extra enteral feeding bag, extra mic-key kit, bottled water, medications, syringes, and pill crusher/splitter in addition to the normal diaper bag contents that "normal" kids need.  And we pretty much have to have the stroller everywhere because he is getting so big and can't sit in high-chairs, shopping carts, etc.

I feel guilty for even writing this... but these are just a few of the things we don't say.

I think families have enough moments where they feel like they are alone in their struggles.  I think there are probably many of you reading now that wish someone just understood what you're facing too.  Be kind, be compassionate, be patient... do what the feel-good memes on the internet tell you to do.  It will make a difference.

My last thought for the day:

When someone finally gets the courage to ask for help, give what you can, and don't be afraid to let them know that you don't know how to make a difference.  Chances are that they don't know what they need either.  Being an friend is usually enough.

The End of our Summer Chapter

Today was rough... had it not been for Dad, the Bestie, the Fam, and Nikki, I don't know if I would have made it out in such good shape.

School starts Wednesday.

That means I go back to work Monday.

That also means that our last day with Miss Nikki is Tuesday.  She will be going back to school with another one of her precious kiddos.  I am so glad that she was our first nurse!  I'm going to miss her terribly.  The last couple of weeks have been tough for both of us, knowing that we don't have another nurse in place.  More than that, we have known that our "see you later" has been rapidly approaching. 

When you first learn that your child needs in-home nursing care, it is a HUGE adjustment.  You worry about how this person will care for your baby... and how their presence is going to change the dynamic of your household.  Are they going to be clinical or are they going to love on them like you would?  Are they going to judge you on the days when you're still wearing the same thing as the day before?  Are they going to notice when you spend most of the day in the other room fighting back tears from this "new normal?"  Are they going to be able to take over what you think are YOUR responsibilities without making you feel like a slacker that can't care for your own kid?

And then, if you're as lucky as we were, you'll find that you look forward to seeing your nurse each day.  She will start to bond with your kiddo and you'll see all the love and caring there.  You'll get comfortable leaving the house to run errands.  You'll start bouncing ideas off each other to make the best use of your space and organization.  You'll share tips and tricks for things like getting the most use out of syringes and alternatives to pill crushing.

Then if you're REALLY lucky, you'll feel friendship start to blossom.  And when you're having one of those days when you've been fighting back tears from a "things aren't going according to plan and we are running out of time" moment, she'll hug you and not say anything when a few tears drop on her scrubs top.



This is the end of our summer chapter...

Grandma is coming back to care for Lennon while dad and I work, at least until we can establish nursing or attendant care.  We are optimistic about what lies ahead. (It's funny how mornings can be so starkly different than afternoons.)



Tonight I'll leave you with Lennon dancing in the Upsee with Nikki.

First Summer Hospital Stay

Well, we almost made it through our summer without a hospital stay. I'm not going to lie, I kind of feel like Wichita is inherently tied to doctors of some sort. We spent a long weekend here with our family and the morning we we're going to leave, we had vomiting and seizures, so we brought him to the Wesley ER.

Thankfully we are able to communicate more effectively with Dr. Beltran and Dr. Shah now, so we made it upstairs fairly quickly. When we got here, we we're very happy to see our A team on staff. Dr. Haws, Judy, Beverly, Tiffany just to name a few... Yes, people who know our kiddo and how tricky he can be.

He was swabbed to determine which kind of respiratory infection he had and came back with rhino/enterovirus, which is the same thing he had in April.  Even though we didn't suspect seizures by the time the EEG started, there was nearly continuous seizure activity on the right hemisphere of his brain. We gave a course of three medications before the activity stopped.  We are currently working on the second 24 hour infusion of Argenine. If he stays stable throughout the night, we will get to go home tomorrow.

We may be moving to general PEDS floor tonight, so send some extra prayers that we don't relapse, which is what seems to happen when we go to PEDS before dismissal.  At least there we can snuggle a lot easier!

Love Makes a Family

There is nothing quite like family and I love mine. Throughout the last week, we spent loads of time laughing, causing trouble, and just being lazy with Aunt Rhonda and Bev. I'm pretty sure I want to keep my neice!

Then last Friday we met up with Uncle Al, Grandma and Grandpa Kennedy, Uncle Scott and Aunt Christy and cousin Anson. Grandma Renae made a couple of apprearances as well. This made for a fantastic time! Our hearts are so full!

 

 

Unfortunately, we ended up back in the hospital Monday, but that has its own post.

Ironically, we may never have found part of our family if it hadn't been for Lennon's illness. It was last summer that we were able to reconnect dad with Rhonda.  Since then, we've shared one visit and about a million Marco Polo / Snapchat / Facebook / Duo / phone conversations. This summer, we finally got to meet the rest of her bunch in person. I'm so glad for this opportunity to get the Moody family and the Kennedy family together!

I know I'm probably repeating myself, but seriously... Full heart ! Dinners, Tanganyika Wildlife Park, The Arcade, just relaxing by the pool, it was all wonderful! I can't wait to do it again!