Category Archives: Health Concerns

Cars, Kids and the Concert

I just wanted to follow up my previous posts with some updates. First of all, it turns out we were fully insured. Insurance deemed the car a total loss and paid us out. We were able to find a minivan at a reasonable price and are getting some repairs done Friday to make it last us a while. Felix continues to do amazing at physical therapy except for the last couple days, when he just wants to be held all the time. I’m sure a big part of that is the fact that he’s teething. He’s gotten one tooth and the second one isn’t far behind.But anyway, Felix can roll front to back and back to front now, and when he does the exercise when he’s on his tummy on his boppy, he’s getting strong enough to push himself off and over it. He’s also really been studying faces lately. I’m so proud of his progress.

Andy got his braces off today! He had them for 3.5-4 years, with a jaw surgery during that time. He said it feels weird and a little sore. But he’s happy.

Evan had court today to review his court ordered outpatient committal. The judge dismissed the case, saying Evan was no longer a threat to himself or others. But he’s gotten 2 criminal charges and has violated his probation (recently). I told him the ruling may seem like a good thing, but what it really means is that now when he decides to act a fool, he can’t hide behind mental health. He will just be treated like a criminal. He faces a judge about his second criminal charge soon.

Jarrod had a really good time at Riot Fest despite his shitty adventure on the way home. He got to see a couple bands in particular he was very excited to see: Guided By Voices and Ween. I’m glad he was able to go and enjoy himself, even if I was unable to join him. Hopefully I get so fortunate as to be able to go to a concert soon.

Left: Guided By Voices โ€” Right: Ween, photos by Jarrod

I finally saw a doctor about a few things I had been avoiding and/or putting off. Nothing too serious. I’m not going to go into any of that right now because Felix is starting to wake up from his mini nap and I don’t have time to type about it. I’ll update again soon.

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Felix Began Physical Therapy

This is a video update about Felix’s first day in physical therapy. I will do a more detailed update at the end of the week. Thanks for watching.

Step 1

Felix had his developmental specialist appointment. Dr Noble examined him, talked about our concerns, and was very attentive and professional. He did express some concerns about Felix, but in a rather non-specific way. He diagnosed him with hypotonia, but said his muscle tone was good, saying he thought he would really benefit from physical therapy, occupational therapy, and speech therapy (for feeding concerns, at his age). He wants to be really aggressive with therapy in hopes that we can come out ahead of it.

Dr Noble also referred Felix to neurology, gastroenterology, optometry, audiology, and ordered genetic tests, an upper GI, and a sedated brain MRI. It’s a lot to take in all at once. And I have no idea what the doctor is thinking may be the overall issue, but he said he has to rule a lot of things out before we will know what it IS.

Jarrod really has been my rock through all of this. He worries, but nothing like I do. He has a more “take it as it comes” attitude, which is good for me. I tend to sit and stew, and wonder about Felix’s every little new behavior. I’m so anxious about test results or what the future may hold for our boy. I truly just want the best for him. I’m so scared he’s going to have big challenges and… well my mind tends to wander to worst case scenario. I hate that about myself. I just want to shut off that part of my brain and focus more on Felix’s strengths. I’m working on it.

Almost kinda sitting up. ๐Ÿ™‚

The first tests Felix was able to get done were a few basic blood tests and an upper GI. All of those have come back normal so far except for some reflux seen in the upper GI. But that has already been being treated, so nothing new there. His next test is the sedated MRI of his brain. I’m more nervous about that just because he has to be asleep for it, and I’m a little worried about what they may find. I know during his many ultrasounds while I was still pregnant, they always looked at his brain and organs and they were always perfect. So I guess we will see if anything has changed.

We are also waiting on results of blood and cheek swab genetic tests. But those take several weeks.

There’s so much going on so quickly, and it’s overwhelming. But I feel very grateful to have doctors taking things seriously and getting him figured out while he’s very young so he can have the best possible outcome and future.

I’ll continue to update here as test results come back to us.

We NEED Help

WE NEED HELP. PLEASE CHECK OUT OUR GOFUNDME PAGE.

Felix has seen a specialist and is in need of lots of therapy. Details on the campaign page. Please help. And share, share, share, far and wide. Thank you for your help.

Productive Day

Weโ€™ve had an extremely productive day. We had Felixโ€™s AEA assessment, and they said heโ€™s doing very well except for things pertaining to sight. Then Jarrod went to work, and Felix and I had a typical morning. When Jarrod went on break, he and Felix and I all went out to lunch with my mom. We discussed the AEAโ€˜s findings. It got me to thinking maybe Felix just needs a brighter environment in which to play.

So later in the day, after he played with his daddy and went with mommy to the farmerโ€™s market, I took him outside on his play mat and let him play – not in direct sunlight – but in the brightness of the sun. He started reaching for dangling toys which he had not previously done. He was very happy to do so. Then, I made sure the kitchen was as bright as I could make it to feed him solids, and he was playing with the bowl and the spoon, along with his food. After that, I gave him a bottle of breast milk, and he held the bottle himself. All of these things are things he did not previously do. Jarrod and are are so impressed and amazed by this young man every day.

Then we went for a walk and he had a nice nap in his Snuggly. Next is bathtime and time to unwind for the day. Tomorrow he will have a developmental specialist appointment and a GI appointment. Good vibes for positive findings and simple solutions!