This week was Jake’s “Fall Break” so we took advantage of the down time and made a quick trip to Ohio. Jake was able to golf in a tournament with his family and I was able to make some stops to visit family! Traveling with Malachi can be difficult, so I found myself hesitating even two hours prior to leaving for Ohio, but I keep reminding myself that Malachi will only get bigger and more difficult to manage in new places so we need to take advantage of these opportunities while he is still small.
Malachi has actually handled this trip better than the other attempts, and couldn’t wait to arrive. He was all giggles on the trip up and I am hoping our return trip today will be just as pleasant! We have been making use of his cot in the car for diaper/outfit changes so I took a picture to give you a visual of his fun new setup.
On Saturday we ventured out to a wheelchair accessible playground nearby to see how he would do. The sun was his enemy as always (kids with vision impairments have a hard time handling the sun), but he did seem to enjoy himself.
As far as seizures are concerned we have been very pleased that this trip has gone so smoothly. Our last trip up set him off a bit and he had a major increase in seizure activity. We saw a slight spike and had some car vomiting incidents, but overall nothing compared to last time.
Prior to our Ohio trip, we had a very productive week. My biggest report is letting you know that Malachi is now obsessed with table foods! Lately he has shown interest in what we are eating and will move his mouth as if to ask for some. We desperately try to reward any type of communication so I have been offering him some of my soft foods by putting a tiny smear in his mouth. But one afterno0n we were eating sandwiches and I found myself not able to give him a taste of anything soft. I did however have a dill pickle so I figured I would let him taste the bitter juices. HE LOVED IT! He even let me put it in his mouth and tried to take a massive bite causing me to panic haha…if those front teeth had been in he would have succeeded.
Now he is hooked! This week alone he has tried: cantaloupe, banana bread (a BIG hit), beef stroganoff (with chunks of meat in it), broccoli cheese casserole, potatoes, ranch dressing, nacho cheese, cupcake icing, and some mum teething bites. We have started trying to introduce some baby food snacks, like the dissolve able cheese puffs. We just cannot get past how much progress he has made! We met with the speech/feeding therapist who absolutely agreed that he is ready to start some solids.
Here is our party animal after some cupcake icing at a birthday party. Sugar!!!
With Jake off this week, we have been able to make some major progress on house cleaning and repairs. We are planning to list the cabin a week from Wednesday and have been praying fervently for the potential buyers that God may send our way. We were also able to take some time this week to meet with a mom who has two beautiful twin daughters with CP. They are both in power wheelchairs when out in public, and the family recently built a house that is fully accessible for the girls (they are college age). It was such a needed meeting, as she was able to share some of her suggestions with us for when Malachi is older. We are still analyzing and probably over-analyzing house plans and features to make sure we do this right!
Malachi even went to church nursery for the first time this Wednesday! The teacher sent me a short clip, and you can just see his fascination with his friend.
Malachi’s sleeping schedule is back on the fritz- this happened prior to Ohio but traveling has not helped. He is oddly consistent with his routines, falling asleep around 11 and waking up again at 2ish. He will stay up for a few hours and go to bed around 5:00 for another hour and a half and then wake up for the day. That means we are running on between 4-5 hours of low quality sleep. In fact, right now it is 4am and I am contemplating packing up and heading for TN!
This week has been such a blessing for me as I have been able to see some major changes with Malachi cognitively. The anticipation on his face as we made a 7 hour drive to Ohio was just precious, and he literally squealed with joy when he heard his grandpa’s voice. Every morning he has been waking up with pure excitement as he strains to listen and see if any of the other children in the house are awake yet. I have seen so much recognition and remembrance as we have made our rounds to see relatives and it is so encouraging. God is good.
As much as I wanted to type a devotional, my legs are now officially numb from trying to hold this food loving chubby kid and type on a laptop, so maybe we will try for next week! Thank you for taking the time to check in on Malachi and as always, thank you for keeping him in your prayers.
Jake, Leah, and Malachi