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!

Water Therapy and Other Updates (pictures)

Lennon has been having water therapy at the Arrowhead West pool for the last 3 weeks.  He seems to love the water!  It's been really neat seeing him relax and stretch out in the pool.  I think he's pretty partial to the ladies too.  (The only reason their faces are whited out is because I didn't have their permission to post their pictures.)

Last week we had a swallow test, which meant Lennon had to drink some barium.  I wasn't sure how this was going to work, but we used a syringe to test his ability to swallow without aspirating.  He did great!  Since he passed, we will work with a speech therapist to get back to solid foods instead of just purees and tube feeds.

We are seeing a lot of improvement with Lennon's muscle tone, range of motion, and stamina too. He is standing almost 45 minutes at a time in the supine stander.  He stretches with Nurse Nikki every day, and he also gets an extra stretchy home-visit from Arrowhead West.

In other news:

The All in for Lennon event is still in the works.  Many potential donors have been approached and we have been fortunate enough to receive several already. 

• If you or someone you know has a business that would like to donate goodsor a sponsorship, please feel free to fill out the following form so that one of us can contact you.
• Potential Donor Contact Information
  
• If you would like to make a personal donation, they can be made through PayPal or in person at Credit Union of Dodge City.
• PayPal- paypal.me/pools/c/85vwhyxtrj
• Credit Union of Dodge City- ask for the All in for Lennon account

As always, thank you for reading and following our little guy's story!  Feel free to subscribe to the blog to get updates for new posts.

Milestones

June 19th is a pretty important day... at least in my opinion.

10 years ago today, Lennon's dad and I went on our first date...  <3  That's a great memory and a pretty big milestone.  We found each other at an unexpected time and built a life together.

June 19, 2016 is the day that Jacob (the first CARS2 kiddo) lost his battle to mitochondrial disease.  Lennon's journey was just beginning as Jacob's 10 years were ending.  10 years sounds like an amazing milestone for us to strive for with Lennon.  Hopefully it is just a starting point.


Last week we had our follow-up appointments with the specialists in Wichita in addition to checking the g-tube.  At both of the major appointments, we were faced with the question "When is enough enough?"  (Or something along those lines)

I was caught off guard.  I was not ready for that question.  I think indignant is a good word for it.

I found myself thinking, "how dare she ask me that?"  He's fighting, he's improving, he hasn't ever had an event that wasn't brought on by an infection... he hasn't had pneumonia... finding every reason in the world why we shouldn't be having this conversation.  But I think we all know that tomorrow could be our last day.  How many milestones do we have left?

Most people didn't realize that when we took our spring break trip, we were worried that it would be the last time our Texas family could see Lennon.  We didn't know how many more opportunities we would have... and when April came, that sense of mortality became even more prominent.  April was really scary.

Anyway, since last week's appointments, dad and I have been trying to deal with the big questions for what happens after.  How are we going to prepare for the days, weeks, months, and years after our sweet boy is no longer with us?  It suuuuucccckkkkssss to think about life insurance, funeral arrangements, coping.  It seems like an impossible task.  I have read about Maria's journey after Jacob, so I know that I'll get through it, but I also know that it won't be easy.

So on this June 19th, I celebrate the 10 years I've had with my love; and I celebrate the 10 years that Jacob had with his family.  I wish I could have met him...

Settling In

I guess I didn't realize how much time had passed since my last post.  We have been settling in to the new routine, new equipment, and new support. 

Lennon's nurse was able to start the day after school was out, which was a huge relief considering that grandma had to go back to the real world.  I love our nurse.  She "gets it."  Sure, she may never have had a case like Lennon before, but she understands the stress of hospital stays, the burdens placed on parents of kids with special needs, and the benefit of having an extra set of eyes and hands.  When we first talked about nursing care for the summer, I wasn't sure if I would want someone for the whole number of authorized hours.  Within the first 2 days, I knew that we would stick with the "regular schedule."  Unfortunately, she won't be "ours" forever. She has another placement throughout the school year.  Later this week, we will meet a new nurse who may take over as our year-round caregiver.

We had a post-hospitalization appointment last week. Lennon's weight is up to 28.4 lbs.  I think that is the highest weight EVER!  It's also at least 2 pounds more than when we left the hospital.  (Thanks for the ice-cream and tater tots, grandma!)  The g-tube makes it so easy to ensure that enough calories are going into him. It also makes it easier to give meds.  Lennon improves every day.  I was told that I would be surprised by his strength and perseverance, and I definitely have been.  A month ago, I didn't know if he would be able to swallow.  Now he's eating, rolling, making lots of noise, and regaining a lot of his strength.  Even tonight at our weekly dinner with friends, everyone commented about how good he looked.

Even though he is doing well, we are still very aware of the fact that we will have many more hospitalizations, doctor visits, travel expenses, and needs for medical and support equipment.  We were approached a few months ago about having some sort of fundraiser for this.  Sunday, we met to discuss our event All In for Lennon which will occur September 8th.  We would like to have a silent auction, raffle, and a Monte Carlo night in addition to a brisket dinner.  View the event page HERE.  More information will be posted as it comes available.

For now, I'm just happy.  I sleep better knowing that Lennon improves every day.  I don't feel confined to the house because I'm afraid of leaving.  I have been able to spend some legitimate quality time with the big kids and TEACH them some things that we've been missing.  Honestly, one of the best moments of my summer was being able to brush and braid Hannah's hair, knowing that someone else was taking care of Lennon's morning routine. I'm happy. I'm grateful. I'm proud of my family.  Here's to the beginning of a beautiful summer.