If I had to come up with one word to characterize this week, it would be “laughter”. Malachi has had a serious case of the giggles all week long- so much so that we had to step out of service at church today because Malachi kept laughing at the word “God”. His laughter is absolutely contagious. Don’t believe me? Here is a little video:
He has laughed at so many things this week that I would bore you with the list. Here is another video from today as I took off his leg braces…he loves that velcro:
Truthfully, it has been a great week! While Malachi loved our trip north last week, he was visibly excited to be back in his environment and routine. His sleeping routine has been rough, but everything else seems to be running smoothly!
Malachi has been eating like a champ and trying at least one new food a day. If he hears me chewing, he immediately gets my attention and opens his mouth for a bite. I now understand what all those mom’s of toddlers are talking about when they say they have to hide in the bathroom to eat a cookie in peace! His favorite new food of the week is bananas mixed with peanut butter. He is still learning, so it is definitely a messy process but he loves every second of it.
We are also seeing less seizures than normal, which is so refreshing. In fact, just a few minutes ago Jake and I were discussing how Malachi had not had any today, and I cannot remember the last time I could say that. As we discussed the rare but wonderful change, we remembered that he had a massive bowel movement this morning around 4am, and we can’t help but assume that this has something to do with his seizure free day.
We have a very exciting appointment this week as we will get to meet with the new epileptologist at our nearest children’s hospital. I know it sounds strange to be excited about a neurology appointment but it is always nice to get a fresh set of eyes on Malachi. He is such a complicated case, and I would love to get some new perspectives on how to stay as seizure free as possible while also limiting the amount of medications we give him. In an attempt to help the new doctor get a full view of Malachi, I have filmed his seizures this week. I have been back and forth about sharing the video with you, but the more I have thought about it the more I feel led to do so.
There are so many types of different seizures, but most people only have one mental image of what one looks like (typical convulsing). Malachi has several different types but his most common one is his asymmetrical tonic type. He always rotates his head to the hard left and will bend his right arm inward. When he does this, his arm and head are literally impossible to move or unbend. He has the strength of an ox during these episodes. His seizures typically last less than 10 seconds, and if they go longer we say it was a “bad one” and will exhaust him tremendously.
The most frustrating thing about these seizures is that they are triggered by discomfort- mainly trapped burps, and will happen over and over again (several in one minute) until we alleviate the discomfort. It is for this very reason that we don’t leave him alone with others. He will literally have seizure after seizure until we get his burp out (very hard to do when he is toned like this) and make him comfortable again. Our date nights are not worth his continual seizures and discomfort. Maybe one day, but not right now.
On a typical day Malachi will have 4-6 of these episodes and they are more common in the evenings. I can hear him seizing from a room away just by the change in his breathing. He has them in the car frequently, requiring me to pull over and try to get his burps out. If he seizes for longer than 30 seconds, you can almost bank on him vomiting and possibly cutting off his air supply during the vomiting.
So all that being said, here is a video of his seizure. DO NOT FEEL COMPELLED TO WATCH THIS as it is not pleasant to witness, but if you are in his circle it may be good to become educated. So often we hear people giggle and laugh saying “Oh I must have scared him” when he goes into a seizure, not understanding that he isn’t jumping in fright…he is having a neurological episode. If you do watch note his breathing, his post-seizure aura, and his susceptibility to pop right back into another episode.
Changing gears completely…
This week has been a great one! If you remember, about a year ago I connected with a mom in Chattanooga with twin boys- one of which also has cerebral palsy. We got the boys together yesterday and went to a local apple festival followed by some time at a handicap accessible playground.
Malachi got to ride the smallest pony I have ever seen! He also got to pet a llama, donkey, and a goat.
This was my first visit to our local accessible playground, and I have to say that I was so impressed- it was even better than the one we visited in Ohio. There were lots of noisy things on Malachi’s level for him to hit and move. His absolute favorite was a contraption that made a noise that sounded like a toot. Such a boy! He laughed for a solid five minutes at the silly noise. When he is truly belly laughing he can barely keep his eyes open.
Jake and I have been able to accomplish so much this week in regards to prepping the house to be sold! Last night we were overcome by the stinky smell of a skunk close by. It was a little too close for comfort, so Jake went and checked the crawl space today and found droppings. In all honesty, it is just too ironic to be mad about haha! We are listing the house on Wednesday with the realtor, and it just so happens that for the first time in 7 years a skunk has moved in underneath our gem of a home. Lovely. And truly comedic timing!
If you knew me pre-Malachi or if you know me now then you are fully aware that I love being busy. Now the word “busy” takes on a whole new meaning now with Malachi, but I crave the feeling of contributing to my worlds. For the last 3 years, I have been very much in survival mode and not able to participate as much as I would like, which has been a hard thing for me. Slowly we have been able to add some of our busy-ness back…coaching the soccer team, continuing as youth ministers at the church. With soccer ending this week, Jake and I have found ourselves with some more free time than normal and have taken on leading an 8 week Bible studies on Sunday evening for adults and teens.
I know what you are thinking…we are crazy. But to be be completely transparent, I have a difficult time making time to get into God’s word throughout the week. By taking on this class, I have a responsibility to dig into His word and share it with others. Tonight was the first lesson, and I am feeling so incredibly refreshed to be able to spend time talking to people about God.
Fittingly enough, this week’s lesson was titled “I am worn out” as we talked about the many ways we create anxious toil for ourselves. It was such a needed reminder for me this week that as humans we are going to wear down and become weary- physically, mentally, emotionally, and spiritually. But the Bible makes many references to finding rest for our souls in Christ.
We talked about how even Christ needed rest in his ministry, and how we are instructed in Hebrews 4:9-11 that the Sabbath Rest is God’s gift to us, and we must be diligent to enter that rest. We also talked about how Jesus did not heal EVERYONE and go EVERYWHERE…he simply followed the leading of His Father.
Sometimes we forget to ask God to lead us daily in our tasks and appointments. Our scripture for the week is Isaiah 40:28-31. I encourage you to look it up and see if it speaks to you specifically!
Please keep Malachi in your prayers as it seems like God is working wonders in him. We will never stop believing in a miracle for our boy.
Jake, Leah, and Malachi