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. 

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. 

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 ❤

 

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.  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 🙂

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… 😉

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 🙂

Photo bomb time!

Good Morning :)

Good Morning 🙂

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 🙂

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! 😉 )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 😀 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 🙂

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.

Happy 8 months Logan!!!

Here we are again celebrating Logan’s birthday!!! I can honestly say I didn’t know if this day would come while he was still with us. Logan keeps pushing his way towards beating the first statistic (80% will not reach their 1st birthday). February was a tough month. Several babies lost their fight with SMA and one in particular was a little over 8 months. That was very sobering as we hit this new milestone with Logan.

Logan had his g-tube surgery on Feb 14th and has had a great recovery! He had his two week check up a few days ago and the area around the button looks amazing! He really didn’t any drainage and there are no scabs or buildup. It looks like the tube has been there for years 🙂 The only place we are watching out for is a small incision under his belly button where they inserted the camera. It is kind of crusty and we want to make sure that it doesn’t build up more. 

At the checkup they also measured him. He is a little over 29 inches long (!!!) and 18 pounds. He is a growing boy!!! His night feeds are going well. We just bumped him up to 30ml/hr during the night. He really hasn’t gone over 250ml in a night, but we are working on it. He seems to be getting used to it. I know we were already supposed to be at 40ml/hr with 400ml during the night plus extra feeds during the daytime. However, I feel Logan just isn’t ready for all of that yet. He definitely lets us know when he is comfortable with something 🙂

We are ready for March. I am looking forward to warmer weather, more zoo trips, trips to Branson, walks outside and crossing off more outdoor items on our bucket list. May March bring Logan more health and strength!

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