Tag Archives: therapy

A Felix Update

As of this month, September, we FINALLY have all our services on track for Felix back here in Iowa. It feels like it took forever, but we’re finally there!

• He has been evaluated and approved for physical therapy and speech therapy. He started PT this week, twice per week. The therapies will be done in “shifts,” such as a couple months of one, then a couple months of another. So he’s not overwhelmed with everything at once.

• He has an occupational therapy evaluation later this month, for which he will also be approved.

• I have the AEA/Early Access (Area Education Agency) involved, also helping with therapies at home, including feeding therapy, and eventually getting him evaluated and set up with an IEP for school.

• He will be eligible for preschool in February when he turns 3, but Jarrod and I are thinking he will start with the next school year in September 2022 instead. We want to give him more of a chance to gain more skills in his therapies first, since there’s been such a disruption due to our move.

He saw his developmental specialist yesterday, and he got a bunch of referrals for more testing:

• He has a sacral dimple that will be imaged to make sure it’s not affecting the function of his spinal cord.

• He will be getting another eye exam because I’m truly convinced he has issues with distance, still.

• He is going to get a swallow study done because his inability to chew and swallow properly is getting in the way of his ability to properly learn to feed himself.

• And finally, he has an appointment for genetic testing and counseling early next year (long wait on that one, it was scheduled in April).

Also with the appointment yesterday came a new diagnosis: Autism Spectrum Disorder. It was bittersweet for me, because I have suspected this from the moment Felix came home from the hospital at birth. With the diagnosis I felt heard and confirmed. But the flip side of that… all the hope I had that he could grow and develop and come out of his delays has now been crushed. This is a permanent state for Felix. I’m not scared or intimidated by this diagnosis. I just know it’s going to be a lot of work. Then again it already has been. We’ve all adjusted to the therapy and appointment schedule. We already know tests will keep coming until we find answers.

The specialist said ASD is secondary to the real issue, and he believes the genetic testing will hold the real answer. Personally, my only concern in the genetic realm is finding something degenerative. That’s my fear. But I’m hoping for the best, and we will cross whatever bridge is laid in front of us when we get to it.

No matter what, this little boy is a blessing. I couldn’t ask for a better toddler. He’s sweet and cuddly, curious and strong, determined and stubborn. He’s growing and learning on his own time, and that’s perfectly okay. I love him unconditionally.

Snapshot Of Our Lives

Life is ever-changing. Tastes change, circumstances change, people grow and change. I know where I am now, and what I do on a daily basis is far different today than it was a year ago. Or the year before that. So I’m going to make this post once or twice per year. This is a snapshot of what my life looks like today.

Today Felix woke me around 10:30am, which has gotten earlier over the past couple weeks. He was sleeping in until noon. He cuddles me for a few minutes before he goes to play, a morning tradition I cherish. He and I woke Jarrod, and then Felix played for a while while Jarrod and I checked our phone notifications.

Felix and Scout, just starting the day.

Then Jarrod cooked some eggs for the three of us, and I got our drinks. Today we had cold cereal with our eggs, other days we have toast with peanut butter, bacon, or oatmeal. While we have breakfast we watch something on the iPad. News, game shows, reality shows, or sitcoms. Today it was Big Bang Theory. Once we were done eating, around 11:45am, Jarrod left for work. He works noon til 9:00pm right now.

Today we had no appointments. So we didn’t have much to do. I took a shower while Cory hung out in the living room with Felix. Felix played with his toys in the living room and rode his horsey all over the house. Cory played on my computer for a while and had a show playing on the TV. I chatted with him and cruised social media. I also did some light cleaning, and watched our kittens play. Around 3, Felix crawled up into my lap and passed out for a nap. He naps on me, Jarrod or Cory when he naps. Typically he sleeps for about 30 minutes, but today it was about an hour and a half.

Sleepy boy!

Other days Felix may have a checkup or therapy, we may have friends to hang out with, or shopping to do. Sometimes my mom or Jarrod’s will visit, Evan or one of the girls will hang out for a while, or we will go out to eat. If Jarrod has a day off we usually find something to do outside of the house.

Once Felix woke up from his nap, I fed him lunch. After lunch he watched a couple episodes of the cartoons Pablo and Simon on Netflix while I placed an order online at Walmart for pickup, like I do a couple times per week. As of right now, COVID and RSV are quite common amongst children, and though everyone else in the house is vaccinated against COVID, I’m doing my part to protect Felix by reducing my contact with the public. So currently (again) I’m not taking him into stores much. So our trips to the store for pickup are regular outings as well.

When we got back from the store we had a snack, and I put on some music on YouTube for Felix. He LOVES Billy Strings, so I just put some videos on and he will watch and dance. That has bought me a little time to write this blog post. Even though Andy just decided to emerge from his room for the first time since I’ve been awake today. Nevertheless, I’m continuing to write because I’ve already had too many distractions over the last couple days. Once I’m done, I’ll get supper started.

Felix on his horsey, Billy Strings videos playing.

We will eat late, once Jarrod gets home from work. Usually around 9:30-10pm. He will take a shower before he eats, and bathe Felix once supper is over. That’s their bonding time, since he’s gone for most of Felix’s waking hours. While that’s going on, I’ll get the kitchen cleaned up, and maybe tidy up a few other things. Lately I’ve been playing a lot of Sims 4 in the evenings before bed. Jarrod will have Friends or some other sitcom playing on the TV and will play with Felix or look at his phone if Felix is busy playing. We will talk about the day and update each other on anything important or entertaining that happened, or anything coming up either of us should be aware of.

Felix is usually ready to sleep around 12:30-ish. So we will head to the bedroom, read Felix a couple stories, and he and I will brush our teeth. And then we will get into bed. I hold Felix until he falls asleep, and then lay him down on his mattress, which is right up against ours. Jarrod and I both stay in bed at that point too. And the day is over.

The therapies Felix has are Physical Therapy, Occupational Therapy, and Speech Therapy. He currently has referrals to get his vision and hearing checked again, and has an upcoming appointment with the Developmental Specialist, and Genetics.

Today was a mellow, rather boring day. Not all days are like today. In fact, often we have so much to do that we’re all exhausted by the end of the day. But right now, I love where we are. I love how Felix is my best friend, and is so much fun to play with and go to appointments with. He enjoys therapy and all of our outings. There are times I feel overwhelmed by my lack of alone time, but then I just take a step back and remember these days won’t last forever. In fact, these days will be short and sweet, and someday not too far into the future I will miss my little boy and our fun times together.

Not today, but adorable anyway. 💕

This is a snapshot of now. I know things will change so much, so it will be nice to have this post as a little reminder of today.