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™‚

657488765993

It is done!!!! …for now πŸ™‚

657187704323

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.

606878339693

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

19441197_662613111763_9968395_n

Meet our newest family members! Max and Belle

655316933363

My gift from Brett this year were these beautiful pictures

655313699843

Lucas-10 and Claudia-3

Life in the midst of the storm

After every storm, there is a rainbow. Something beautiful and full of light has appeared in the midst of the darkness and clouds, providing a counterbalance of color, energy and hope. Ours just has some (very unexpected) pink mixed in ❀

Ruth-Collage

So the news is out…and we are still adjusting to the news after many weeks. We had the CVS (chorionic villus sampling) done as early as we were allowed. It took almost a month to find out the results. Ready?!

Miss Baby Ruth is a carrier, but unaffected by SMA. ❀

She is also extremely unexpected. How unexpected? She managed to make her way through two methods of birth control…yeah… We did not plan for more children. We didn’t really want more children. After dealing with SMA, the risk was too big, too scary. The pain from Logan not being in our arms, too great.

After the initial news, I can honestly say I have never experienced so much anger in my life. I don’t think I can convey how much crying happened, how much questioning of why did this happen. “Does Logan think I’m replacing him? Will others think I am replacing him? I don’t want another baby, I just want my Logan back.”

We had the CVS done and it was the first time I actually saw the baby move. I took turns staring at the monitor, at this baby I had not idea how to accept and my phone’s background photo of Lucas and Logan smiling. In those moments, I came to terms that this was happening. Just like Logan’s SMA diagnosis, I couldn’t change this. The only thing I could do was change how I looked and dealt with the situation.

While I am not angry anymore, its still a mental struggle to accept that this is our new journey in life. Knowing we are having a healthy baby doesn’t erase the pain of my Logan baby not being in my arms. It does, however, give me hope that this rainbow baby will restore hope and positive energy; not only for myself, but also for Brett and Lucas.

The excitement is growing in our house. The influx of pink and purple have been welcomed with open arms, especially by Lucas. It is a fresh start. Not a do over, but definitely a sort of starting over. We have nothing for a girl and not even sure how we are going to handle a girl after two boys! It gives us even more fire to find a treatment/cure for SMA so when she grows up (just like Lucas), she will not have to worry about being a carrier.

Three things we do know: She is loved beyond all else, has two very protective big brothers and a beautiful guardian angel watching over her. Just like he is with all of us. πŸ™‚

Thursday through Saturday

My how time flies…even when you aren’t having fun. My last post was on Wednesday. Thursday we had a few friends over. One dear friend used to be a NICU nurse. I mentioned to her about him sounding like he has a dry cough. She listened for a moment and told me she didn’t think it was a cough. It sounded more like a grunt, similar to newborn babies. I had a brief flashback to right after he was born. He was taken to the nursery for 14 hours after birth due to a fast heart rate, not maintaining body temperature, and grunting.

Our pediatrician called a few minutes later checking in on Logan. I shared our friends thoughts and was able to put the phone close to Logan for her to hear. She agreed it sounded like grunting and was most likely due to air hunger (difficulty breathing). The oxygen doesn’t make the situation worse or better. From my understanding there is nothing that can “fix” this, so we were given the ok to put him on a 4 hour schedule of morphine. We also added Ativan (anti-anxiety) back in and dropped Gabapentin (nerve pain).

Friday and Saturday were pretty status quo. Logan slept 23+ hours. I struggled with the decision to do an enema on Saturday, but so glad our nurse was here and helped me with it. Our poor baby…sigh. His stomach seemed much better afterwards though. Not so distended. I also started struggling with how quickly everything happened. He was fine of Monday and then has slept since Tuesday. Its just heart breaking. We spoke with our palliative care doctor. It was a rather painful conversation…one I’d rather not relive and hope is wrong :/

Oooo! Something exciting did happen yesterday! Logan was sleeping and Lucas wanted to read to him. We didn’t think much of it since he has been sleeping so much and nothing seems to wake him. So Lucas sits down, starts reading to him and guess who opens their eyes! He wasn’t fully with us, but he did have open eyes looking at the book. Then before Logan and I went to bed (we are camping out on the couch πŸ™‚ ) he opened his eyes again. There wasn’t much emotion behind them, but they were open and the most beautiful color of hazel.

Today was a good day. However, I need to gather my thoughts about it before I post anything. Hopefully after speaking to our Hospice nurse tomorrow I will have more clarity on the situation.
2013-05-04 13.22.32 2013-05-04 13.22.51 2013-05-04 23.14.23

Monday night decline through now

Monday morning was rough. Monday afternoon was really good! And then came Monday evening…

Logan was really fussy. We aren’t sure why. When we laid him down for bed, he fussed every few minutes. We knew it was going to be a long night ahead. He fussed almost every hour, all night. We resorted to morphine to try and help. Yeah…the sleep only lasted an hour. We tried everything, stopping his feed, burping him, turning on Little Einsteins, etc.Β  Finally around 9:30am we burped him and what looked like stomach acid came up into the tube. After we got it out, he seemed to rest easier. We thought he was just recovering from the night before, until around 1pm.

We decided to wake him so he would sleep that night. However, he did ever really wake up. He was up for maybe 30 min before falling asleep on me. He didn’t wake up when I moved him to the couch. I hooked him up to his pulse ox so I could go make dinner around 4:30. Logan was still sleeping. He did wake up for about an hour around 5pm then went right back to sleep. Around 8pm he woke up crying. We rushed to administer morphine and reposition him. It took over 45 min to get him comfortable again. He gave back into sleep as I massaged his little foot and toes.

The next hour was the toughest Brett and I have experienced yet. We sat talking about everything in tears. We have done so much more to Logan than we originally planned. We did this together every step of the way and have no regrets. However, we talked about him turning 10 months on Monday and Mothers Day the Sunday after that. We discussed taking the oxygen off of him and starting a schedule of morphine and ativan. Brett has a hard time hearing Logan cry. Its always been that way though. He feels sleeping and comfortable is better than awake and crying. I feel that way too…kinda. Its hard. I never thought it would come to this. I mean, we knew it was somewhat inevitable without a treatment or cure, but I didn’t “think” this day would ever come.

We have talked with our hospice nurse and we are trying to find where something went wrong. He is now considered lethargic 😦 Kind of like last time. We think the Gabapentin may be the cause again. Only this time because of a build up in this body. We are fairly certain it runs through the kidneys and we have noticed the past week he has been dehydrated. We are also trying a new medicine to help with stomach metabolism in hopes it will create easier bowel movements and he will be able to take in more formula. I’m not sure if this will solve the problem, but we have to try.

Logan slept pretty much all day today. He was awake less than an hour total. He is right next to me as I type. He looks peacefully. His heart rate is high and we are suctioning out thin, sticky junk about once every two hours. But his color still looks pretty good and he looks as beautiful as ever. Even with his hair a messy, dirty mess πŸ™‚

A rare Daddy Logan moment <3

A rare Daddy Logan moment ❀

2013-04-30 09.52.22 2013-04-30 13.48.15

2013-05-01 13.40.59

Two week update

Bear with me, this may be all over the place. Its been two weeks since Logan took dipped in his oxygen, causing him to turn grey and lethargic.

We have made great strides since then. He is still sleeping more, but when he is awake, he is very alert!Β  He will look at you when you say his name. Our baby boy is back ❀ He isn’t 100% though. He still on .5 liter oxygen and is having a harder time with bowel movements. We aren’t using morphine as much which is awesome! But when we do have a pain emergency, the dose we have works quickly to calm him down. But he is making eye contact and smiling!!!

The only super downside is he isn’t tolerating his feeds right now. We started him on amoxiciliian (sp) last week around the same time we changed formulas :/ We think it might be exacerbating his reflux issues. Probiotics were started about the same time and help a little. He also stopped tolerating his continuous over night flow, so we switched to bolus. I wake every 3 hours to start the feed.

We are concerned about him dehydrating if we can’t figure this out soon. Our nurse is looking into Reglan to help empty his stomach and get things moving. Its been frustrating figuring out what we should do. A friend asked today what the plan was since he isn’t even tolerating Pedialyte right now, and I had to say I don’t know. For those who know me, I am a planner. Not knowing what to do is killing me.

I ran on adrenaline the week he wasn’t doing well. This past week has been awesome although tough mentally on me. We were able to get out on Sunday and also on Tuesday evening for Lucas’ first play! Lucas did so great too! He had a speaking part and looked awesome in his green shirt πŸ™‚ Logan did great both times.

Through all this, I was reminded we don’t know how much time we have with him. He is on so many meds it seems like, but when we go through the list and see what they do, they are all for comfort. He has managed to take his cannula off a few times. I felt it off once when he did this, to see how he was doing. His oxygen went down to 66 and he lost a lot of color. He didn’t panic though. He was trying to put the cannula back up to his face and started to panic when it wouldn’t stay. A few seconds after I taped it back on him, he was fine and carried on like usual.

He has been super chatty the past few days. I will stop whatever I am doing to talk with him and ask what he thinks. I love hearing his voice. He only says vowels, “eh” ah” and such, but he lets you know what he is thinking through his eyes. He has been doing great at eye contact once again. His new favorite toy is a penguin we got a St Louis Zoo. It is very soft. He likes to grab its wing and stroke it.

I’m finding it harder to stay in the moment. Brett says I have officially hit the stress limit for myself. Well…its been almost exactly six months since diagnosis so I think I have done a pretty good job lasting as long as I have. My headaches are back and I feel drained if I’m not occupied by something for Logan. His smile helps bring me back though. Sleep doesn’t seem to help, or else my body isn’t allowing me to sleep deeply. I have been so drained the past week, I barely replied to any texts. I have read everything though. I feel this down period will soon pass as well though. I will become accustomed to a “new normal”. Or at least I hope so. I need to go back through the bucket list and find easy/simple things we can accomplish. I don’t want to forget any moment with my baby boy ❀

Good morning!

Good morning!

2013-04-21 11.44.30

Rollercoaster- part two

Picking up where I left off…On Sunday Logan was only awake maybe a total of 4 hours. 2 of those was around noon when we did a garden stone with him. He was alert, more alert than Saturday, even though he wasn’t awake much. We talked with our doctors and decided maybe it was the medicine doing this. Especially since it was like he wanted to wake up but just couldn’t. So we took him off the Ativan (anti-anxiety) and lowered his dose of gabbapentin (nerve pain). His heartrate was also very high on Saturday, even while resting. It was still high Sunday as well but now we questioned the role of the medicine. We had a bit more hope compared to Saturday, but we were still very cautious.

Brett stayed home today and yesterday. Yesterday Logan slept until late in the morning but did much better. He was awake a lot more, but started to cry out in the evening. We did get some smiles though!!! We have started to use a pain med around the clock to try and keep him comfortable. Also trying to find a balance with the gabbapentin.

Logan decided to wake up at 1:45am this morning. I turned on Little Einsteins because he was wide awake. He smiled so big! ❀ It made my heart so happy! 2013-04-16 01.39.04

He slept in until 10am again this morning. Its thrown off his feeds a little bit, but he is tolerating them better. He has been awake a couple of times and has given us some smiles. And!!! He let Brett hold him while I ate some lunch!!!!!!!!!!!!!!!! Now, that may not seem like much. But, a little over a week ago, Logan decided no one (and I mean absolutely no one) was allowed to hold or touch him except for me. He is still sleeping more than usual, but his heart rate looks a lot better.

He is still on oxygen and we have had to adjust it almost everyday, but for now he is still sitting at .5 liter. We have come to terms that he will probably not be coming off of it. However, as long as he is still comfortable (and hopefully happy) we are not bothered by it. In the midst of everything, I was in tears talking to our nurse saying how he didn’t seem happy and it was like he wasn’t here. She said we may have traded happy for content and comfortable, but that it was still good. He wasn’t in pain. That thought had never occurred to me. Logan is my happy baby…the thought of him not smiling never crossed my mind, but it happened. Its made me really think about everything.

This morning I got a beautiful smile though πŸ™‚ Not as big as some, but he is still smiling. 2013-04-16 12.03.00

On the part one post, a Facebook comment said it sounds like this is coming from a weary mom. That is absolutely right. I do sleep at a night when he does, but my body must not be getting a deep sleep because I am exhausted. We went from doing ok, to fearing we didn’t have 48 hours, to now being cautiously optimistic he is ok right now and learning to cherish every moment that much more. Brett goes back to work tomorrow as long as the rest of today and tonight goes well. I am nervous because I am so tired and Logan doesn’t want me to leave his side. I’ll have to be sure everything is within arms reach.

Minor progression of the weekend:

Friday afternoon

Friday afternoon

Saturday early morning

Saturday early morning

Saturday mid morning

Saturday mid morning

Sunday - little bit more hand movment

Sunday – little bit more hand movment

The garden stone we did Sunday <3

The garden stone we did Sunday ❀

Thinker pose Monday morning

Thinker pose Monday morning

Rollercoaster – Part one

Well, Thursday was eventful. All day. I posted about the morning scare we had. The rest of the day was ok until around 6pm. Our hospice nurse was coming over to help me figure out how to “unclog” Logan. He hasn’t had a bowel movement in 48 hours so we were wondering if that was contributing to everything. No joke, she walked through the door and Logan vomited through his nose. We spent the next 30 minutes suctioning him. We then found the cough assist wasn’t working. I’m not sure when that happened, but we had a new one delivered that evening. Thankfully, the suctioning helped him to stop coughing. We finally went to sleep about an hour later than usually.

He woke up at 3:30am with a slight fever. I called our hospice nurse to be sure I could give a dose of morphine with a dose of Tylenol. She confirmed I could and he seemed to rest really well until the morning.

Friday doesn’t stand out to me like the rest of the weekend. I remember being worried about him because he started sleeping more. His oxygen levels were all over the place. Late afternoon and we kept encouraging Lucas to sit and watch Little Einsteins with him. His cry had became very weak. I sent a text out in the evening to close friends and family saying he had declined on Thursday and hadn’t made a full recovery.

Saturday is a different story. A good friend stopped by that morning to see him while Brett and Lucas went to a friend’s birthday party. Logan slept over 12 hours. We woke him for a bit, but he went right back to sleep. It was rough after she left. It was like Logan wanted to wake up but just couldn’t. He finally woke around 1pm. He was awake for less than 30 min but I was able to leave the room so Brett could have some alone time with him. We all had this feel of dread that he wasn’t going to be here this time next weekend. He wasn’t happy Logan, he wasn’t really here with us when he was awake. It was so heartbreaking and I think I cried almost the entire day. I didn’t want to post anything in hopes we were wrong.

Saturday night, Logan and I slept on our couch. It has a chaise attachment I picked out for this purpose (thank you Ashley Furniture for have a crazy awesome sale with no interest for 5 years). We slept the entire night. And then he kept sleeping through the morning. 15 hours in total.

Logan just woke up and is cranky. Part two during next nap time