Radio Silence

Radio silence was never supposed to happen, but as we know all too well…life changes.

Last year, I posted on Logan’s angelversary, but I didn’t post on his 4th birthday. I sat at the computer for what seemed like an eternity, and never found any words I could convey through text.

This year, I didn’t post on his angelversary. Again, I was at a loss for words. I knew I could have updated, or just said hello, but nothing seemed quite right for the moment.

In December 2016, just days before Christmas, we received the news there was an FDA approved treatment for SMA. We laughed. We cried. We sat in disbelief. An SMA mom we knew through Logan’s journey, and lost her little girl just a week after we lost Logan, had a baby boy last year. He was diagnosed with SMA while she was still pregnant and was able to receive the treatment when it was still being tested. Today, he is not only able to sit up by himself, but also stand! It is truly incredible to see how this medicine is changing the lives of so many.

The week of Logan’s angelversary this year, our beloved babysitter graduated high school. I honestly cannot comprehend how time has gone by so fast. I questioned many times if my emotions were due to missing Logan, or realizing in a blink of an eye, that beautiful girl walking down to receive her degree will be Claudia…

And speaking of Claudia πŸ™‚ She is an independent fireball child. I’m fairly certain her and Logan are complete opposites. He loved to sit, read and watch his shows on TV. Claudia has squirmed since day one and feels like she will die if not moving/running. She outruns most kids on the playground these days. We joke that you either get on the Claudia train, or you get run over by it haha. She will be an excellent adult one day…if I can just survive until then.

She helps keep Lucas in check too. He loves his sister dearly, but is quickly learning the toddler years can be frustrating. He is taking it in stride though. Reading is his main hobby. He absorbs all information thrown at him. He was an A+ student at school last year too! He misses Logan dearly, but he has done so well to rise above the challenges of grief. And just like in 2013, he still has no fear when speaking about his brother.

Brett graduated with his Master’s Degree this past May ❀ It has been a long road, but we are so proud of how much he has accomplished! He has been working towards his college degrees since Lucas was 2.5 years old. He has only taken off 2 summer semesters during that entire time.

As for me, I stay at home with my munchkins πŸ™‚ I’ve been involved in Lucas’ PTA at school. Claudia is developing into her own person more and more each day. If I could bottle just a tenth of her energy, we would no longer depend on coal or the sun! We could power everything!!!! πŸ˜€ Oh! And I almost forgot about our newest family members… *see below πŸ˜€

My plans for the foundation did not go how I imagined them. While I was pregnant with Claudia until she was about 16 months old, I suffered from severe depression and increasing anxiety. It was an extremely difficult time and I did not want to lean on anyone. Thanks to Brett, my friends and my doctor, we found the right balance I needed to live life again. It hasn’t been an easy path, but I’m better for it ❀ I can enjoy moments without guilt. I miss my Logan and always wish he was by my side, but the guilt of being happy without him physically with me has shifted into enjoying what we have in the present. Β “Behind us are memories, beside us are friends, before us are dreams” – unknown

Now that a treatment has been announced, I have been researching ways to help. We are unable to give families checks, or send checks with a memo line to a hospital for a specific family. If anyone has suggestions, please feel free to message me! I’m all ears!

It is July 6th, 2017. Logan would be 5 years old today. How that can be? I have no idea. In an alternate reality, I am freaking out that my baby boy is starting Kindergarten in 4 weeks. I’m running around like a chicken with my head cut off trying to keep up with the energy of all the kids. Or mediating what movie to watch because Claudia *needs* Moana but Logan wants Cars and Lucas just wants to play a game in quiet.

But, that isn’t the case. Instead, we sit and watch Moana with no squabbling. We try to decide whether we are ready for Claudia to start part time preschool (she is, we are not haha). And how in the world is Lucas getting ready to start 5th grade and going with us to see Spider-man Homecoming this weekend?! Was he even born with the first Iron Man movie came out?!

Radio silence isn’t always bad. Some times it happens because you are so caught up in enjoying the moment and you don’t realize how much time has passed. Some times it is because words escape us and we don’t want anything to be fake or disingenuous. Time is precious, as we have learned the hard way. No one has time to read a post with feigned happiness. To benefit us all, it has to be sincere.

And for now, I believe I can say, it is truly sincere ❀

Happy 5th Birthday Logan Boy ❀ We miss you terribly. Now and always.


Thank you for reading this far ❀ And now…some updated pictures πŸ™‚

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It is done!!!! …for now πŸ™‚

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In May 2012, we picked strawberries for the first time. A very pregnant Tia was taking the photo. Every year, the tradition of strawberry picking stands.

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This is from a special project by Lost and Found ❀ Claudia was a little over 2 years old

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Meet our newest family members! Max and Belle

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My gift from Brett this year were these beautiful pictures

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Lucas-10 and Claudia-3

Happy 2nd Birthday Logan!

Dear Logan,

Its hard to believe its been 2 years since you have been born! Where has the time gone? Its been a little over a year since you left us to fly somewhere beyond the moon, but we still think of you everyday. We love you so much and proud of the life you lived while here with us.

We try not to think of the could have been’s or how it would be today. Would you be talking our ear off? Would you be jealous that our laps are half taken by Claudia? I’m sure if it wasn’t for SMA, you would be running around like a maniac and want to be outside all the time.Β 

Even though you are no longer physically with us, we know your spirit lingers on. Your memory and legacy will never die. So today we celebrate you: your bright smile, sad pout, bubbly personality and fighting spirit.Β 

We hope you are having fun, flying around and watching from above. We miss you every moment of everyday.

Happy Birthday Little Little Man
❀ Love you Squishy ❀

Β 

Happy 10 month Birthday Logan!!!!

Logan boy you did it! You reached 10 months!!! We didn’t know exactly how long you would be with us when we found out you had SMA. Now we are down to not knowing exactly how much time we have left. So this is by far the most special birthday we have had with you ❀

Its been a rough few weeks, but I believe it has caused us to love and cherish you even more baby boy. You are our bright and shining star. Although you are mostly sleeping through the days right now, we are still right by your side, loving you with everything we have. We have a cake to celebrate and some cool new clothes for you.Β  Big brother Lucas is so excited for you to see your new Mickey shirt he picked out special.

We love watching you grow and learning more and more new things. Although we don’t know how much time we have left with you, I can promise you we are soaking up every moment. We love you Logan boy…you make us so proud.

Despite Logan sleeping right now, I’m sharing smiles for this photobomb πŸ™‚

First smile on camera!!! - 8 weeks old

First smile on camera!!! – 8 weeks old

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Rocking the shirts Daddy brought back from his Sweden trip

Rocking the shirts Daddy brought back from his Sweden trip

Discharged 48 hours after surgery!

Discharged 48 hours after surgery!

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10 month old big boy! When did he get so big?! He must be growing in his sleep again... ;)

10 month old big boy! When did he get so big?! He must be growing in his sleep again… πŸ˜‰

Birthday Weekend!

We decided to make Logan’s birthday an entire weekend affair. Saturday we went by Sonic for Lunch then to Sequiota Park. We walked along the pond and watched Lucas tackle the large slide and fireman pole. Then we were off to Ozark to pick up his cake. We were excited to see Stacey! We haven’t seen her since right before we went on lockdown in December. It was such a beautiful day!!!

Brett then text me and said a friend had given him a gift card for Zio’s. We thought it would be a nice treat so we made reservations for an early dinner. Apparently everyone had the same idea!! However, our waitress was incredibly nice and set us apart from everyone else.

Logan started to get fussy in the car, but I thought is was just because he was tired. We still aren’t sure what happened, but Logan threw up all over me around 6:30pm. He turned pale and cold, so we wrapped him up. He was much happier afterwards though and was all smiles before bed time. It was weird.

He started having a rough time around 3am and we put him on .5 liter of oxygen. It was a tough decision, but he was much happier after he was on it. He didn’t go back to sleep until past 4 am.

Because of the small mishap after dinner on Saturday, we had to wait for cake. But the boys didn’t mind birthday cake first for breakfast Sunday morning. Logan then took a 3 hour nap and when he woke up we were off to our local zoo! Logan took his first train ride and loved it!!! He also fed the giraffes their crackers and saw many animals. It was a wonderful birthday weekend πŸ™‚

Photo bomb time!

Good Morning :)

Good Morning πŸ™‚

Birthday Balloons!

Birthday Balloons!

Rockin' the "Logan" onesie!

Rockin’ the “Logan” onesie!

Car ride time!! Off to the park and to get cake!

Car ride time!! Off to the park and to get cake!

Logan's Awesome Cake!!!

Logan’s Awesome Cake!!!

A purple heart for Brooklyn <3 She passed 4 weeks ago today

A purple heart for Brooklyn

Good cake Ms Stacey!

Good cake Ms Stacey!

First train ride! <3 Chugga Chugga Choo Choo!

First train ride! Plus wearing his awesome new out fit he got for his birthday ❀

Happy 9 months Logan!!!

Dear Logan boy,
We are so thrilled we get to celebrate 9 months with you today!!! I think I say this every month, but we had no idea we would make it this far. We are so happy and blessed to have you in our lives. You have taught us to love deeper, live fuller and slow down to cherish each and every moment. Your smile is so radiant despite your diagnosis. It challenges me to face life with a smile despite the negativity around me as well.

Overwhelming love does not begin to describe how we feel for you. I hope you had a wonderful day baby boy. I know we did spending it with you πŸ™‚

Look how far we have come ❀

New born Logan

New born Logan

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Logan's "thinker" pose

Logan’s “thinker” pose

Just chillin...

Just chillin…

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Funny Face <3

Funny Face ❀

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True love does not only exist in fairy tales…

 

What a week

The past week has been full of ups and downs. As I sit here typing this (and thinking about the Easter post I need to do), I’m watching Logan nap while hooked up to his feeding pump. He was watching his evening edition of Little Einsteins to keep him distracted. (Check out the jammies the Easter bunny brought! πŸ˜‰ )Image

We have had to work harder than usual to make sure Logan is happy and comfortable. We have a few pain meds on hand in case he cries out in pain. We are figuring out if it is reflux or nerve pain. There have been discussions of trying to get a hold of donor milk from Kansas City for Logan to use and just supplement with formula if needed. Zantac isn’t working well and prilosec is very expensive apparently. I am hoping to hear tomorrow about a new antacid though.

We had to use the oxygen machine more than I would have liked, but it helped him sleep. Last Tuesday we had to use the oxygen machine during two naps and all night. His oxygen was in the mid to upper 80’s and just would not come back up. I sat with tears in my eyes while I watched him sleep thinking of how unfair this is and why does this have to happen to my sweet baby boy.

Wednesday morning Logan was drinking from his bottle and it took him over 10 min to drink half an ounce. He didn’t act hungry or fussy so I just let him be for a bit. Then suddenly all of these thoughts came to mind. I realized the past several days he hasn’t sucked his pacifier but rather it sat in his mouth. He wanted it there, but it was like he couldn’t suck on it. I looked at the bottle and thought of how he hadn’t been eating as much recently. And then it hit me…he is losing (or rather has lost) his suck. In that moment, as Brett and I realized it, devastation set in. I couldn’t even think. I just sat and stared at Logan while he was watching an episode of Little Einsteins. Then he laughed and cooed at the screen and I smiled to myself. In the midst of this happening, he is still enjoying himself. Starting that morning, he has been completely on pump feedings aside from an early morning bottle if he feels the need to suck.

Something amazing happened on Wednesday night though. We were in a stressful situation that we removed ourselves from. As I mentioned up above, Logan was on oxygen the night before and his levels stayed around 97. Wednesday night, he didn’t need it. In fact, his levels were 96/97 all night with no assistance! Thursday he did great and tolerated his feeds from the pump really well!

Since then, his stats have looked really good. Its amazing, this time last week I told a few close friends that I was fairly confident he would turn 9 months , but I felt we would be extremely fortunate if he reached 10. Anything can happen tomorrow, but he is happy, tolerating his feeds well and his oxygen hasn’t dipped once since Tuesday and being on the oxygen machine.

Saturday we celebrate 9 months. I’m not sure what we will do. I’m hoping the weather will be nice though. Sometimes I can’t believe we have made it as far as we have. Baby boy has some fight in him, that is for sure!
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Week in review

Wow what a week it has been! We have had our ups and downs. We started the week off with Daylight Savings time. Oh my goodness how I hate Daylight Savings time. Sunday evening we had one of the worst scares ever with Logan. We were giving him a bath and he started coughing. We deep suctioned him and he seemed to be good. Then he started coughing again. I rushed to get him out of his bath tub and into his towel while Brett got the cough assist ready. He started gasping for air while coughing, his skin turned splotchy, and he blued around his lips.

We hooked him up to his pulse ox. When first on it, he was at 64 oxygen level. After the first round of his cough assist (35lbs/inhale 1sec/exhale 1sec/pause 2sec) and suction, he came up to 75. After the second round he came up to mid 80’s. He hovered there for three more rounds. He was upset over everything so after he was for sure clear, I scooped him up with his pulse ox and we watched two episodes of Little Einsteins. After the opening song, his oxygen came up to lower 90’s and by the end of the first episode his oxygen was in the mid 90’s and his breathing was steady. As much as I hate those damn machines and how upset Logan gets over his cough assist, I truly believe we would have lost our baby boy if we hadn’t of had them on hand. It was by far the scariest thing I have been through. I’d rather not encounter that again

The first part of the week was quiet thank goodness. Thursday was my birthday πŸ˜€ I cannot even begin to explain my happiness that I was able to wake up to my baby boy. I didn’t add celebrating my birthday to his bucket list until late January because I was afraid it wouldn’t happen. But I had to have hope, so I put it down. We had a wonderful day chilling at home. Brett and Lucas surprised me with pink balloons and a chocolate cake with pink icing plus cashew chicken for dinner! ❀ ❀ ❀ I am very loved πŸ™‚

Friday was super fun! We were not about to stay inside. It was a beautiful, sunny 75 degree day! We went to the zoo, with what seemed like the rest of Springfield haha. We weren’t able to feed the giraffes or fish, but we were able to see the zebras up close. If we just walked along the paths, we didn’t run into that many people so we felt fairly safe to have Logan out.

After we left the zoo, we went to a furniture store to look at a couch we have looked at for over a year. We don’t have one, but have our own chairs and a loveseat instead. Logan is getting so long I can’t sit on the loveseat while he lays there too. The piece we were looking at has a chaise. While sitting and deciding if this is something we really wanted to do, I had a vision of the last 48 hours we would have with Logan. It was just a glimpse, but I saw myself laying with him on this couch. We watched an episode of Little Einsteins and Brett sat of the other side of Logan stroking his head.

I then came back to reality and watched Logan intently while he slept in his stroller wondering if what I saw was truly the end and how much time we have left. It was very jarring, but compelled me once again to make the most of everyday. I need to make sure my boys (and husband) are happy and we are enjoying life as a family. I have had so many reminders of this in the past week from a dear friend losing her baby girl to SMA to this vision that life will change and no matter what I won’t be ready for it. However, each day is a gift within itself to go forth and make many beautiful memories to treasure in years to come.