We slipped back into our normal this week and attempted to re-establish our routines. We made it back to therapies with the exception of horse therapy; I was afraid the barn dust might aggravate Malachi’s breathing.
Levi is continuing to improve in his feeding therapy sessions, especially with his sensory issues. Mommy spends the hour trying to not focus on the crazy mess we make in each session.
He is also improving with his speech. His voice is very quiet due to the vocal cords not moving but we are just so grateful to be able to hear him at all! He is progressing with his sign language too and relies on his signs for many things. I took a video of one of his new words for you to hear his sweet voice:
Malachi stayed home from school with me this week as he still isn’t fully back to himself. His oxygen levels are still solidly safe but he is tiring easily and still having a few big seizures that wipe him out. We have been making the most of it and watching lots of movies, especially when he and Levi come to work with me. Recently we decided to let Malachi transition from little kid cartoon shows to movies with themes and plot lines. He has been loving the variety but he is SO opinionated!
He loved the Little Rascals.
He liked the first 30 minutes of Sound of Music then got bored. That was disappointing as it is my all time favorite movie! When Jake and I went to Europe in college we even went on the Sound of Music tour haha…and it was the highlight of our trip!
He really liked Home Alone but cried the second time I played it because he didn’t want to watch it again. I think it may have been just a little too intense for his soft heart.
And then there is Frozen which we watched 4 times in 2 days, and the Jungle Book which was another surprise hit.
We are trying really hard to treat Malachi like the six year old boy that he is and letting him do big boy stuff that Levi can’t yet do. We want him to recognize his individuality and savor those moments, because it won’t be long before Levi’s skill set surpasses Malachi’s and we won’t be able to make things so special for him.
So we decided to let Malachi shoot a cap rifle off the back deck! He liked the first two shots but the third one was a bit too loud and made him really really mad. I told him we were practicing shooting at the bears to scare them and he started crying…I guess he loves our bear friends.
Jake even got a snow day this week! This makes us sound like fatties, but one of our favorite things to do as a family is eat out. We hoard any and all gift cards that come our way throughout the year and cash them in on surprise snow days and breaks. I can’t really explain it well, but when we go to a restaurant together and eat as a family I feel so normal…there aren’t many activities we can do that don’t add a lot of stress/planning to our lives. Eating out is one of them, although Levi’s attention span seems to be amping the stress level up a bit.
We attempted the impossible this afternoon…family photos. It is not easy to capture flattering photos of Malachi but we managed to get some great ones! My friend came over and we spent an hour in the side yard then spent some time sorting through the thousands of photos and choosing our favorites.
Malachi thought the whole session was a hoot…
And little Levi was a trooper, giving us all the facial expressions we could have asked for…
Levi has been quite the ham lately and is doing some pretty silly things. When he gets awkward and uncomfortable he walks around, swinging his hands aimlessly and clapping. It is something that he picked up from Jake who does it quite often when he is in certain social settings:
I can’t help but flash back 17 years ago to teenage Jake asking me to prom. He was swinging his hands just like Levi, snapping his fingers in between each clap.
“Hey, uh Leah, uhhh want to go to prom with me?”
When I said yes he smiled and continued swinging, then slowed down and said “High Five?” raising his hand in anticipation. We high fived and he left the house. I laughed at how awkward the whole scene was, and still do to this day. So seeing Levi do the same thing really makes me smile.
Never did we imagine the road that God would take us down as a couple.
As we get closer and closer to Christmas Eve the stacks of our NICU donated items keeps getting larger. Jake and I have been speechless this week as we have watched so much love be sent our way. You all are amazing.
As of now we have received nearly $7,000 worth of donated items!!! Just process that number!!! When we started this project my aim was to raise enough for every mom to get something nice, so $1300-$1500 total. The amount of love we are going to be able to shower on them is so beautiful to me.
I have been in communication with a contact at the hospital who will be helping prep the area for our shopping event. Each mom will be given a ticket to trade in for a shopping trip through our items. We have sorted them into categories by price and each mom will be able to choose one item from each group.
I have also been in prayer over the notes I would like to include with each gift bag and God has prodded me into a direction! THIS is the highlight of the project for me- being able to share God with these moms. The presents are just a bonus.
What an opportunity we have been given to plant seeds in a ground that has already been tilled.
I was reminded of a verse this morning from Ephesians that says “For we are God’s workmanship created in Christ Jesus to do good works which God prepared in advance for us to do.”
We have been CREATED to do good works. And we don’t have to work really hard to find those opportunities…God has prepared them in advance for us!
So many times we see good works as something exceptional and special, something rare and unique. But if we all are being sensitive to God’s callings and follow through with the good works God places on our hearts then this world would be such a different place.
May we all eagerly seek after the things God has prepared in advance for us to do.
Please pray for me this week as I am having some major flare ups with my memory and PTSD. Two years ago to the day is when Levi was transferred to Cincinnati and almost didn’t survive the night due to a botched transfer process.
Every time I closed my eyes last night I flashed back to the image of the doctor standing next to Levi’s lifeless body and bagging him, his chest rising and falling with each pump of his hand. His chin was tilted up at such an unnatural angle and his skin was so white. I can remember the night and the scenes so vividly…my phone call to Jake, the eyes of the doctors, the tension in the room. All those emotions have been flooding back and frankly they have been overwhelming me.
Please pray with me that I am able to release these burdensome memories and hand them over to God.
I am also starting to get very anxious about our upcoming hospital tests for Levi- his sleep study and his MRI. I am not confident if the outcomes of these will bring good news or bad and the uncertainty tends to consume my thoughts.
Please also pray that both of the boys stay germ free and healthy, particularly through the holidays. We intend to include them in our Christmas Eve service project but obviously would never subject those NICU babies to big germs should they accidentally contract something between now and then.
Thank you for checking in on our family and for showering us with love and blessings with our NICU project.
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Merry Christmas to your family Leah. I’ve so enjoyed getting to share your lives with you- you’re a gifted writer and your heart and ability to power through tough situations gives me such inspiration. I think the world of you all and when you share good news, I am full of thankfulness. Your pictures are beautiful and the other 980 pictures that you took are equally as amazing, I’m sure. BIG hugs from Seattle, and an avid reader and lover of your sweet family. All of your boys are the luckiest, because they have YOU.