On Monday we tackled the boy’s pediatrician visits like a bull in a china shop. We tried to prepare for every worst case scenario with extra food for each boy, extra tanks for oxygen, plenty of outfits for both boys and parents. In the hour and a half appointment poor Jake had to run out to the car at least 6 times to grab something we had forgotten to bring in. But WE DID IT! Small successes.
One of the things I have always dreaded the most is filling out paperwork at doctor’s offices for Malachi. They give you one page and expect it to be suffice for the answers to the 25 questions they ask…previous hospitalizations, previous surgeries, specialists, current medications, etc. It takes tiny handwriting and at least 30 minutes to fill them out for Malachi so several years ago I started printing out a summary of this information on one sheet. When we go to appointments I simply hand them an updated copy and they put it in his file.
I took the time to go ahead and create one for Levi as well, and boy am I glad I did! The chaos of managing both children in a public waiting area is enough stress, let alone having to remember and record 28 procedures, numerous hospitals stays, and 14 medications between the two of them.
The visit went decently. Levi weighed in at 10 pounds 2 ounces and Malachi at 25 pounds 8 ounces. Malachi has significantly lost weight over the last several months, something that I am really feeling guilty about. The GI doctor is the one who calls the shots on his weight and feeding goals, so I didn’t get lectured at the pediatrician but am expecting to at the end of the month with GI.
We have officially been approved for nursing hours for Levi! This is huge news as they have allotted us the maximum amount (500 hours a year). We are working to find an agency that will come out to our area and help, and we are thinking through how to best make that work for our family.
Based on this week it seems that having the nurse come at night would be the biggest help! Jake went back to work and I started the midnight tango with the two boys. When one would go to bed the other would be wide awake. The few times I could get both of them to sleep at the same time would last about 20 minutes. Most nights I couldn’t help but laugh out loud and the chaos. Malachi would be seizing, Levi would be screaming. Or Levi would be throwing up and Malachi would be having a full fledged meltdown. Or we would all three just be wide awake in the bed, laughing and smiling…the boy’s realizing that together they had conquered this whole bedtime plan mom had sheepishly thought she could pull off.
Each morning around 9:30 I would have both boys fed, ready, and out the door to take Malachi to school. That process went oddly smooth, a small victory for mom! Malachi has been SO THRILLED to be back at school with his friends and teachers. It is all he wants to talk about at home. And it makes me feel better to know he is back in his therapies and routines. He also got to ride his horse again this week while little brother watched! We also got him fitted for some much needed equipment, like a new bath chair and special needs car seat.
Levi is still a wild man who loves to move. If you watch this video you will see exactly what I am talking about haha:
Malachi picked out a dinosaur for Levi in Ohio and he has been snuggling it all week. He especially likes to rub his eyes against it when he is sleepy.
Unfortunately Malachi woke up this morning with a runny nose and all the signs of a cold. When he gets sick his seizures increase in intensity and frequency and he cannot control mucus so he throws up his feeds. We fight through sicknesses, trying desperately to keep him from getting pneumonia and requiring a hospital stay. So far this one seems to be mild, but we are watching him extremely closely.
It is a constant discussion at our house whether risks outweigh benefits for things with Malachi. School is something he looks forwards to and he is also able to receive almost all his therapies while he is there. They put him in his stander to work on weight-bearing and help him with fine motor tasks. There is also the social aspect, which he craves! Yes, it is a risk sending him but we take precautions like taking him in later so they have time to evaluate the health of the classroom and call if there is any sickness. They are also keeping him in the classroom instead of taking him into public places like the cafeteria.
Decisions when parenting a special needs child can be so difficult. We want to give him the best quality of life possible.
Things we are grateful for this week: friends that have brought meals and adult conversation, the diaper chute we built into the new house, caffeine….lots of caffeine, laundry machines, tile floors that can be sanitized easily, the Laundry Doo service, and of course being together under the same roof!
I even had some clothing needs and two very kind friends went out as my “personal shoppers” and filled those needs for me.
We even had a visit from Hank, the neighbor pig. Yep- you read that right- welcome to Tennessee!
This week Levi and mom will be headed to Cincinnati for another throat scope procedure, which will require at least a one night stay. We are praying over little Levi that he doesn’t catch whatever Malachi seems to have and we are practicing insanely good hand washing to attempt to not cross contaminate the boys.
Even before the sickness we had decided that it is best to leave Malachi with Jake in Tennessee since he wouldn’t be allowed to stay overnight in the hospital with Levi and I. And now that Levi is just learning what having a full time mom is like, I just can’t bear the thought of leaving him again to go to a hotel. It looks like they have blocked off the operating room for him around noon on Wednesday, and since we don’t sleep anyway I am aiming to leave in the middle of the night and make the drive straight there Wednesday morning, and come back as soon as we get discharge papers on Thursday.
I am expecting them to have to do a balloon dilation to his airway. He is much louder this week which tells me that his airway has healed closed a bit smaller than before. His retractions still look mild and his oxygen saturation levels are still good.
This week I was able to jump right back into teaching our youth group and it refreshed my soul. If you are new to the blog, Jake and I are youth directors at our church; being away from our teens these last several months has been so difficult. God has laid some things on my heart that He wants to share with them, and there is nothing more exciting than watching them grow closer to God.
I missed my church family more than I realized and being back with them has been one of the highlights. Attending church does not make you a Christian. But as a Christian I desire to be around others that share the same hope in Christ that I do- it is just so refreshing! If you aren’t involved in a church family I want to encourage you to shop around to find the right one for you, and then plug yourself in. It is easy to be a Sunday morning only type person, or a twice a year for holidays attendee, but you are missing out on so many blessings!
This week I have been struggling with fear. My sweet family has been under attack and I just can’t shake the thought that we will be attacked yet again. There is a constant lingering fear that something bad it going to happen with Malachi’s health, or we will be in a life threatening car accident as we head to Cincinnati, or Levi’s airway will close too tight before we are able to get him somewhere for lifesaving help. The fear is finding its way into my thoughts almost hourly.
Nothing can cripple faith more than fear.
But we are still choosing faith over fear as I have to remind myself multiple times a day. In those moments that cripple me, I have to take a deep breath and pray protection over my family. I also have had to remind myself this week that for every mountain we have faced, there is an innumerable amount of mountains God has lovingly directed us around.
So my prayer this week comes from Isaiah 45 when God told Cyrus: “I will go before you and will level the mountains.”
Please pray with me that God levels any mountains that we will face this week, including Malachi’s sickness. Pray that my faith can be greater than my fear. Pray for traveling safety for Levi and I, and a great report from his surgeon.