Where to begin. I know times could be worse, but right now it just seems so bad. I’m (and probably everyone else) looking for a light of the end tunnel.

We are good. We are healthy. For that I am thankful. Since the end of February, Bennett has been in his “bubble” (our house, his dads house and my parents). Ben could really care less about not going to the unnecessary Target trips or grocery stores. We have done this to prevent him getting coronavirus and I’d say we’ve done a pretty good job. A few weeks ago (before the huge spike in cases) I finally took him to get his haircut (tie dye shirt picture below). He also came with us a few times to play softball, but those outings were short lived. We quickly decided last week that we were going back into our “bubble” to keep him safe. I say “him” because I know what this virus could do to his body.

I took Brenna to her 6 month check up this past Friday, I had the chance to ask her pediatrician (also Bennett’s) some questions. She told me they’ve had a few infants in their practice with coronavirus, and they’ve done well but she did tell me I needed to “to worry about Ben”. If a doctor tells me to worry then you can bet your butt I’m keeping my kid safe.

If you don’t know this, I’m a paramedic. I was BLESSED to have the opportunity to work in the office as of January last year. I am lucky that I no longer work 48 hour shifts and I get to see my kids every night. **Shout out to my friends and coworkers that are working during this time. I appreciate you.**

That being said, I work Monday thru Friday and still respond to calls as needed. (I get bored sometimes, but right now there’s a HUGE influx of calls so it is necessary). My husband is a firefighter, so between the two of us we have our fair share of potential exposure.

After talking with Ben’s pediatrician, I knew what I needed to do. I called my mom and she already knew what I was going to ask, and she said “yes” before I even had to. Ben is temporarily “spending the night” with my parents. It may be a week.. it may be longer, I don’t know. It is painful to be away from him, but I know it would be more painful for him to get this illness. I thought Ben may be sad to be away from home, boy was I wrong. We didn’t tell him the truth, because we don’t want him to worry. We’ve learned in the last few months that he has some anxiety just due to his disease, recent illnesses and what’s going on in the world. Which I’m sure is the case for A LOT of us 🙋🏻‍♀️. I told him his Grammy is lonely and bored and he was SO excited when I asked him if he wanted to stay there for a few days. He made a list of all the things he wanted to do. Fishing, night fishing, berry picking, chess, camping and mudding. As much as he loves his Grammy, he swears that “Pa knows” him best. He will have so much fun and I know my parents will take good care of him. There’s no amount of money or gifts that could thank my parents for everything they have done and continue to do for me.

As I’ve said before, “we make plans and God laughs”… the plan was to take Ben out to my parents this afternoon. Ben woke me up at precisely 6:14 this morning complaining that his finger hurt. I’m half asleep saying “ok, go back to bed. You’re fine”. A few minutes later I came out to the living room to see it in real life.

Rewind a bit, the past few months Bennett has dug deeper into his love for fishing. Figuratively and literally, this boy will fish for HOURS a day. His knowledge of fish, bait, weather, fishing lines, casting nets you name it, is absolutely crazy.

Yesterday he spent some time in the afternoon and then again in the evening fishing. At some point, he caught a “feisty perch” that was flailing around, making it hard for Ben to unhook him. Ben said the hook got stuck in his finger a few times but it was just little pokes. He also had a bucket of water he was using to “wash his hands” after using his bait (worms and other tiny fish he says?).

Ben told me “MOM. I think my grown up fingers are coming in!!!” His middle finger looked like it was going to burst.

He has a severe infection from most likely the lake water. Whether it got in from the hook puncture or a mosquito bite it’s hard to tell. I called around to urgent cares to see who was “less busy”, I’ll be damned if I expose him to anything. Once we saw the doctor, it was determined that he has cellulitis, secondary to the infection. The swelling goes down his hand and around his whole middle finger. I knew it needed treatment but apparently it needs more than oral antibiotics. Ben got a HUGE shot of antibiotics in his “bum bum” … not sure where he got that from and has been referred to see a hand surgeon on Monday. Apparently this is because it’s circumferential and already affecting the tendons in his finger. Fingers crossed (punny) that it’ll just be a quick visit to confirm that his hand is healing. Once again my mom is saving the day, she will bring him to that appointment if the doctor thinks it’s necessary to see him in person.

For now, he’s on strong antibiotics and ibuprofen. He’s suppose to keep his hand elevated and “rest”. LOL.

The doctor even wrote “No fishing for 1 week” on his discharge paper.

When I left him at my parents tonight (😞) it was looking a bit better. This kid, always keeping me worrying. Thanks for reading this update on my sweet boy.

Prayers and positive thoughts for all.

(I wrote this last week)

You know how one monkey falls off the bed/bumps his head and the rest follow suit? Well that’s kind of how the last week has been…

*Edit: No one has literally fallen of the bed.

A week from last Friday Bennett’s cough had gotten progressively worse, it still hadn’t gone away from having the flu in DECEMBER. I knew 100% he had strep. We took him to the only pediatrician at the regular office who had an opening, not his specific doctor. She swabbed him, negative. He never has a fever with strep, just a distinct cough. She chalked it up to allergies due to the pollen being SO high. We had a low key weekend but spent some time with my brother, his wife and her family. Monday morning I got a call from the pediatrician… “soooo we sent off a throat culture to the lab (protocol) and he actually does have strep”. Great, so we shared those lovely germs with exactly how many people?!!??? (Including baby sister, who we can’t help but kissing her cheeks) Aside from that, I was extremely frustrated due to the fact that he could have been recovering all weekend and be healthy for school for the week. Whatever. Bryan left work to pick him up from school, while I headed home as well so that he could get back to work. Ben took the antibiotics and was excited to spend the day playing with legos…. I mean “resting”. Bryan headed back to work and eventually Bennett went to bed.

Brenna does this lovely thing where she cries for 2-3 hours at night. Did I mention I was under-the-weather too? Any who, around 9:30pm I heard weird sounds coming from my bedroom where Ben is sleeping. He’s puking. I can deal with puke, but add a fussy baby, a sick self and being sleep deprived?? I called Bryan to ask him to come home. I started a bath for Ben. I looked over at him (on the toilet, sorry I will spare the details) and he was pale as a ghost. I told him to come get in the bathtub to clean himself up. He takes a few steps and collapses. Luckily I was able to catch him and lower him to the ground. He was completely out. It felt like an eternity, in reality it was probably about 30 seconds.

Recently someone asked me if I turn my paramedic-brain or mommy-brain on when something happens to my kids. I can tell you the answer to that; mommy-brain. I 100% panicked. I called 911. The dispatcher was amazing at his job, while getting all the necessary information he was still able to calm me down from a full-on panic attack. All the while, Bryan is on his way home. His fire department has an app that sends through addresses of calls dispatched, he saw our address on his screen.

In the 10-12 minutes it took for the fire department and paramedics to get here, Bennett was lethargic and shivering, almost gray in color. The pulse oximeter he uses at home wasn’t registering anything. He started mumbling about Uncle Bub and Jackie Robinson. Two of his favorite people in Heaven. So as if I wasn’t panicking enough already, you can imagine my hysterics.

I can NOT tell you the amount of relief I felt when the firefighters walked through the front door. I’ve never been on this side of the experience, and I’ve never realized how much trust that patient and their family put in you.

While they were helping Ben to the stretcher, Bryan made it home. I quickly told him what happened and we were on our way to Texas Children’s in the Woodlands. Bryan stayed home with Brenna, who was on our bed just looking around and smiling. (Go figure).

I wasn’t allowed to ride in the back with Ben, but I know it was for the best. Ben was so brave. On the way there I called his dad and my mom, they both got there in record time.

Once we got there, the charge nurse took one look at him and pointed to Room 2. This is the room they put REALLY sick kids in, whether it be medical or trauma related. Bennett was very hypotensive and his heart rate was in the 160s. He was FREEZING cold to the touch. I’m doing everything in my power to stay out of the way, but keep him awake in fear that something bad will happen if he falls asleep. One of the many nurses in the room took my hand and placed it on Bennett’s chest. “He’s breathing Mom, he’s okay. Keep your hand here.” Bennett’s little body was shunting his blood to his organs, so that explains why his arms and hands were so cold. My mom drove over to our house so Bryan could come up to the hospital with us.

Bryan saved the day and brought Ben his beloved “black blanket” and some clean clothes for me. Black blanket has been around for about 5 years, and man you can tell.

After an IV, blood work, cultures and swabs, everyone kind of fizzled out. So we sit and wait. What the hell is going on?

While feeling like total crap, Ben still managed to make us laugh. Ben was begging for something to drink. The nurse asked him “yellow or blue Gatorade?” Ben peaked his eyes open and said “just surprise me.”

We waited 6 hours to find out. During those hours his fever spiked. A stomach bug, on top of the strep throat. Literally. Something so common can make my sweet boy so sick. After a few liters of fluid, medications and rest we were free to go home (Tuesday morning).

Ben had a high fever for the rest of Tuesday, along with stomach issues. By Wednesday we concluded that it was in fact a bug, as I was the next victim. I think in the past 10 days there’s been 9 of us that got it. In the midst of all the Coronavirus hysteria, who knew it would be a stomach bug that made us all feel like crap. **knock on wood** Everyone is doing better, as far as I know. Ben followed up with the pediatrician last Friday, who suspected possible pneumonia (secondary to strep). Luckily he was already on the right antibiotics to treat it. She started him on steroids and breathing treatments 4 times a day and it helped drastically!!

Thank you all for always praying for our family and our sweet boy. I personally have been having a hard time getting over seeing Ben like that. My mom will tell me to turn it over to God. I pray and pray and pray some more but I literally lay awake at night just so I can hear him breathe. We have recently been looking for a church to join in our area. We have visited a couple, but nothing that felt like “our” church. So if you live in the Magnolia area, I would love some suggestions.

Hopefully everyone is enjoying their extended Spring Break 😉

I guess being late is the new normal, sorry for not updating any sooner.

We welcomed our sweet Brenna to the world on 12/27. Bennett was fighting off the flu (influenza A) and strep throat at the same time, it called for a very stressful week but Grammy (my mom) made it much easier. My sister even offered to take Ben to her house, as there were concerns I’d get the flu but now we can officially say he didn’t share it with anyone else. My mom took care of Ben and cleaned our house from top to bottom before we all came home from the hospital! Not to mention we had some yummy meals brought to us at home too!! Ben is such a great big brother, he loves when Brenna is awake and looking around. When she was born, we FaceTimed Ben so he could see her. Brenna heard his voice and immediately opened her eyes and was looking for her brother.

Now for some Bennett updates! Back in November, Ben had an echocardiogram. We weren’t able to see the doctor, but the nurse practitioner delivered us some pretty surprising news. Bennett’s ‘ejection fraction’ had dropped to near below normal levels, and 10% compared to his last echo in 2017. I’ve attached an image to maybe explain it better. This echo showed he’s in the low 50s. As you can see, the low percentages indicate heart failure. Hearing those words kind of made everything else a blur, but the NP recommended we return every 6 months to monitor his heart/blood pressure.

Shortly after that appointment, I called the MDA Clinic at Texas Children’s and explained what we were told by the nurse practitioner. By the end of the phone call, we had an appointment the following week with the chief of cardiology. This doctor was AMAZING and thought Bennett was just as awesome as we all do. He explained that he is NOT concerned with the echocardiogram results and that those percentages of ejection fraction can change daily. We will follow up with him once a year unless an issue arrises.

Today we ventured to the med center for a quick 3 hour pulmonary appointment (sarcasm). Ben has had this loud, dry cough ever since Christmas. His pediatrician thought it may be his asthma, but suggested we check with his pulmonologist just to make sure. All lung function test came back great, which is always good news. Dr Jefferson came to the conclusion that because he was sick with the flu and had lots of coughing, he now has some vocal cord irritation. He explained it as a mosquito bite, it just gets itchier the more you scratch. So the cough gets worse as the day goes on, and it’s gone as soon as he goes to sleep. Luckily he thinks we can get rid of the habit by sucking on hard candy (sugar free) and constantly sipping water. We shall see! He also referred Ben to see an allergist/immunologist.

As we all know, Ben is hilarious but he’s also super sweet (sometimes). We were waiting in line to pay for valet at the hospital, because well… we were late. The man in front of us was complaining that he was charged $13 for parking for today and $13 for yesterday. This guy held up the line for a good 10-15 minutes, the line grew by probably 20 people. He continued on how he had a sick child, he didn’t have the money to pay for valet (uhhh) and a lot of other profane words. Ben said “I have $13, can I just give it to him?!” <— melted. If it wasn’t for the man completely demeaning the staff I probably would have pitched in too.

We appreciate everyone checking on all of us the last month! Bryan accepted a full time job with Magnolia Fire Department, he is working so much closer to home now. I return to work in February, I am looking forward to it but soaking up the last two weeks at home! Lastly, some pictures from Christmas and baby time!

Hello all!!

The day before Imelda hit (lots of flooding and rain north/east of Houston) the MDA Clinic called and asked us to move Ben’s appointment to that Friday instead of late October. Thankfully we did not flood and were able to make it to the medical center. Bennett saw his pulmonologist, neurologist and physical medicine doctor.

Our main concern for the past two months has been his breathing. Ben has been using his bipap EVERY night and during the day for about an hour after school. Although we thought this scary/weird/nothing-to-explain-it ‘sigh breathing’ was over with, I’m afraid that we’ve just gotten used to seeing him do it. His pulmonologist *thinks* it’s his chest just becoming tired and having to put thought into taking a deep breath, as it usually happens when he is really active. Ben did a “6 minute walk test”, which showed his oxygen saturation dropping into the low 80’s after 5 minutes. They aren’t “too” concerned, as it quickly returns to normal once he stops whatever activity he’s doing. However, because we’ve had no conclusive answers Dr. Jefferson (pulmonologist) has referred Ben back to cardiology.

Ben will have an echocardiogram, EKG and will then see the cardiologist on October 10. Please pray that his heart is healthy and it is otherwise uneventful. It is terrifying to even think about, but we know that titin myopathies can affect the heart.

Ben got his flu shot (like a champ!) and otherwise had a great appointment. His neurologist is so impressed with his strength!

Bennett has started second grade and is loving it of course , my little social butterfly. His teacher has sent him to the nurse (because of his breathing) but just for precaution, also because it’s really freaky to see a 7 year old hunched over trying to catch his breath. He did a summer tutoring program that really got him caught up in reading and WAY ahead in math. I love that math gives him so much confidence.

I can’t forget to share about the Muscle Walk too!! We raised over $1300 and had 15 people (friends and family) come to walk with us! It was probably the hottest one yet, but all for a great cause. A huge THANK YOU to everyone that donated in Bennett’s name!

We really do appreciate every one that reached out to check on Bennett. In Bennett’s words .. “I feel great, never felt better.”

What a summer it has been! I wish I could say it was all perfect but the past 5 days have been anything but.

Wednesday when I got home from work I noticed Ben was breathing “weird”. He acted fine but said “it’s kinda hard to breath”. Ben insisted on playing outside after dinner. Long story short, his breathing got worse and I ended up taking him to the ER. It’s kind of hard to describe how he was breathing but it’s sort of labored/sighing, it sounds like he’s taking a really deep breath. We were on our way home a few hours later with all good news, clear X-ray, clear

lungs… nothing to worry about right? Wrong.

We left the hospital and Ben was still having to stop every few feet to catch his breath.

He went to sleep and woke up in the morning breathing just fine. He went to his Dads for the day and after just a few hours the labored breathing started again. We took him to Texas Children’s and back (twice), from there he was admitted to the pulmonary floor. Initial bloodwork showed that he had high CO2 in his blood, and a high PH. The first pulmonologist said that his lungs appeared to be overinflated in the X-ray. Over those two days Ben did two different lung function/mechanic test, all results similar to his last test done in March (good news). We saw probably 6 different pulmonologist or residents, however none of them specialize in neuromuscular disease. And guess what? Bennett can’t get in to an appointment with his pulmonologist until October. And guess what else? He was sent home Friday afternoon still breathing like this.

It has been a veryyyy long 5 days. It doesn’t seem to bother him, but sometimes he does tell me it’s hard to breathe (a few times a day). We’re trying to keep things as normal and usual as possible, but it is exhausting. It is exhausting watching your child struggle, but not near as much as it is for him to deal with.

One awesome thing that happened that I just have to share. Ben was able to get a “pass” to see Dude Perfect while at TCH. They came to the hospital before their show at the Toyota Center, did some Q&As, pictures, water bottle flipping and trick shots!

We (Bryan, Ben and I) appreciate everyone’s sweet messages and phone calls. Ben is the greatest, funniest 7 year old on earth, we are lucky to have him 😇 Please continue to pray for Bennett, please pray for him to have a great school year despite this and for his doctor to find an answer.

Much love ❤️

It’s been quite the eventful summer here! Bennett is going to be a big brother in December, to a little sister! Excited is an understatement.

Bennett is doing great, really actually better than great. Therapy has been consistent and he even hit a huge milestone, he learned to ride his bike!! To be honest, with how clumsy Bennett is, I was worried he’d never be interested in learning. Bryan got out the bike one evening and Bennett literally TOOK OFF. Bryan chased him down the street, the rest was history.

Shortly after learning to ride his bike, Ben had to get stitches in his leg. We’re not 100% on what he fell on, either a slippery rock or rebar. We live next to a dam-type thing and Ben loves to venture down there when we play outside. 7 stitches and several shots later, he was back in business.

Benny got to go on TWO vacations this summer, Jamaica and North Carolina. Ben got to climb Dunn’s River Falls in Jamaica, which is a HUGE accomplishment for anyone! So far this summer has been filled with lots of sun(burns), swimming and memories.

July 1 Bennett had the dreaded sleep study. (I say dreaded because I like sleeping in my own bed). He did great, but after about 2 hours of sleeping the respiratory tech came in and put him on bi-pap. I finally got the results back, unfortunately they are not what we wanted. Bens sleep apnea has not improved, and now it seems to be more “central” versus obstructive. Central sleep apnea originates from the brain, removing his tonsils won’t really help. We have a new bi-pap machine being shipped to our house, this one has a “back up rate” which is something Ben needs now. Bennett practiced last night with his old machine and we also talked about why it’s important he wears it every night. Wish him luck.

Xoxo

Bennett has never really noticed or cared that he’s made a little different, or so I thought. A simple conversation the other night made me realize Ben has really been thinking. We were talking about how our friends couldn’t come play because they were sick, and Ben replied “I’m the only one in our family that’s sick.” I looked at Ben with confusion and said “Ben, you aren’t sick….”. He replied with “yeah Mom, I have muscular disctrophy… like Uncle Bub.” My heart sank. My Uncle Bub passed away almost a year ago from brain cancer. Uncle Bub also had muscular dystrophy, extremely similar to Bennett. To make matters more confusing to him, Ben had a MRI Friday on his brain. We had a talk that evening about how he is NOT sick, he was made differently. He knows he’s a special little boy, that’s for sure.

Benny was able to complete the full brain & spine MRI without any sedation. Literally could not be more proud of him. I sat at his feet, he didn’t even flinch through all the loud sounds and huge box-looking thing they put over his head. I was basically staring at the MRI techs through the window like “THATS MY BOY RIGHT THERE!!”.

We have not gotten the “official” results just yet because his neurologist is out of the office but I was able to pry some info from her nurse. Bennett’s Chiari has RETRACTED and is only measuring 4mm. This is a MIRACLE. One side of me knows that miracles happen, the other side is thinking “maybe Bennett is growing into that big head”??? Hopefully tomorrow I’ll hear from the doctor about anything else, as far as the MRI goes.

Bennett’s pulmonologist decided that he can not have surgery right now. Clearly today’s appointment with anesthesia was unnecessary, as he (pulmonologist) had the final say.

Ben will have to have *another* sleep study, and use his bi-pap regularly before rescheduling. The results will tell us that Bennett has sleep apnea and would benefit from having his tonsils and adenoids removed. Basically let’s just get a couple thousand dollars out of his parents and then try again. 😩🤪

Friday we had Bennett’s “big appointment” with the MDA Clinic at Texas Children’s. He has check-ups here every 6 months, each time he sees multiple doctors the same day. It was such a long day, but we learned there were kids there from El Paso and even further. How lucky are we to live so close to Houston?! Here’s a quick recap.

Neurologist : She says Bennett is “so strong” and most of his weakness is staying in his lower legs/feet and hands. She was impressed with his little biceps 😂 She doesn’t think this will progress much further any time soon. ***Best news all day !!!!! *** She ordered a repeat MRI of his brain/spine due to his increased headaches. She’s erring on the side of caution, due to Bennett having Chiari. I’m so scared it has grown or progressed (not sure how to word it). She said it could be tension headaches because of where they’re located in the back of his head. MRI is schedule in April and we are crossing our fingers that Ben can do it without sedation.

Physical Medicine: Same thoughts as far as increased weakness in hands/feet. She wants Ben to get a new type of braces for his legs to help with his drop foot. We told her we’ve only used the wheelchair a few times, but she still thinks he’ll be needing a power chair sooner than later.

Pulmonologist: Ugh. Quick backstory. Months ago when Ben had pneumonia, I called to make an appointment with his pulmonologist at TCH and was told he is no longer there. Bummer, I scheduled with a different doctor at TCH. This doctor (not a part of MDA Clinic) told us that Ben being on bi-pap was a bit extreme, and that the cough assist device was probably not necessary either. Well his regular pulmonologist magically reappeared Friday and decided he was going to put a stop to Bennett’s surgery (tonsillectomy). Basically he said Bennett’s sleep apnea could have progressed from mild to moderate or severe and it’s not safe to undergo surgery. Bennett hasn’t had a sleep study in a few years, but his snoring or gasping hasn’t increased. Not to mention the cost. The ENT was okay with doing a sleep study AFTER the surgery to see how much improvement Ben has. So now, a few days before surgery .. we don’t even know if it’s going to happen. Tomorrow (Monday), Bryan and my mom will take Ben to the PASS Clinic at TCH to visit anesthesia. The anesthesiologist tomorrow will have the final say in whether or not surgery happens. I’m sure his pulmonologist is just being cautious but it’s extremely frustrating when we’ve had this scheduled for months.

That being said, Ben had a repeat lung function test. He showed a lot of improvement from his last test. However, a new part was added and showed that Bennett has airway restriction. The Dr explained it as “yes, Ben can breath fine but after using albuterol his airways show extreme improvement”. Basically, Ben has adapted himself to breathing but his lungs aren’t doing all they’re able. So now Ben will use inhaled steroids everyday, twice a day.

The folks from MDA Summer Camp were at the hospital, recruiting kids for the summer. Bennett isn’t quite old enough but was so excited when he heard that he’d be in a cabin with 10 other boys his age. Meanwhile.. I’m over here thinking “Camp??? Away from his momma for a week?”

🚁🚁🚁🚁#helicoptermom

As of now, we’re planning for surgery. We’ve got a refrigerator stocked full of pudding and ice cream.

Benny had his first baseball game last weekend. He’s been going to practice and working hard at home. He’s not the most coordinated or fastest on the team, but he has so much fun! He’s learned so much and was given the game ball. Two singles and he was tackled by the pitcher on the way to first base!

What a wonderful year this has started out to be!

Bennett is doing great! He has been working so hard in therapy and his balance has been improving. Recently he’s been complaining of being “car sick” (only after therapy), and this week he ended up losing his lunch on the way home. We were sure that he had just caught a stomach bug but it only lasted for about an hour. Weird coincidence that he only feels nauseous after therapy? I’m thinking it may have to do with all his activity right after he eats lunch at school. Anywho, he stayed home from school the next day. We wouldn’t want to share those germs with out friends 😉 Bryan, Ben and I met up for dinner after I got off work (spoiler alert—)  and Bennett asked if he could order two meals for dinner, Ha!

A few weeks ago, I had one of the most amazing days of my life. Sounds silly, right? A little selfish? Probably. I’ve recently been second-guessing my career choice. I love being a paramedic, but working 48 hour shifts is not only hard for a person, but for their family. I was basically missing out on everything for 2-3 days at a time. I prayed, prayed and prayed some more. Just when I thought it had gone to waste, I was given the opportunity for a Monday-Friday job with the EMS company I work with now. As soon as I hung up the phone I cried, I literally has goosebumps because I knew God had this planned all along. Now I get to wake up with Bennett every morning and read with him every night. Bennett now goes to the after-school program at his school a few times a week, and he loves it. He complains because he’s a “lonely child” and now gets to play with his school friends for longer. It’s a win-win!! (Someone asked him if he was an ‘only child’ and he swears they said he was a ‘lonely child’.) Of course it’s a huge adjustment for everyone but I am so grateful for this big change.

On another note, Bennett used his wheelchair for its first “outing” today. I was really skeptical, but it actually went really well. We met up with my mom and went shopping. Honestly, it’s probably the first time we’ve been at the mall for more than 2 hours. Bennett didn’t get grouchy, didn’t have to be carried and not once complained of his legs hurting. And his behavior was even noticeably better, I’m assuming because he wasn’t exhausted.

Bennett is signed up to play baseball this Spring! He’s been anxiously waiting to find out what team he got “drafted” to. We’re confident that he’ll do well in baseball, just because it seems a little less intense than football or soccer right now.

Bennett’s tonsillectomy is scheduled for March 13. The week before he will be having a sleep study (routine for him) and his MDA appointment with his neurologist, physical medicine, pulmonologist and geneticist. I am hopeful that they will report good news, despite the progression in his legs.

I decided to plan a surprise trip for our little family for this summer. The surprise didn’t last long for Bryan, but Bennett still doesn’t know. Bennett got to get his passport and now thinks he has a drivers license. Bennett thinks we’re going to Atlantis, but it’s much cooler than that mon.

Life is so good 😊