Appointments and Evaluations

Since my last update Felix has had 4 more appointments: a sedated MRI, a feeding/speech evaluation, and intakes for physical therapy and occupational therapy.

The MRI was on September 5th. Jarrod and I both went with Felix that day, and we were scheduled to arrive at 8:30 AM. Felix was to be without food or milk for 4+ hours at the time of his test, which was scheduled to begin at 10:00 AM. We arrived on time, got checked in, and things went very smoothly.

Tired and hungry, just waiting for his MRI.

Once Felix was taken back to the nurses, things went pretty quick. He got examined, prepped and an IV started, just in time for the MRI to be ready. Just before they took him back, they injected the sedation med. it was weird and unsettling to see him go from active, happy baby to asleep in mere moments. But I knew he was in good hands. The test took about an hour, and when they brought him back in he was just barely starting to wake up. Jarrod and I were there talking to him as he regained consciousness. Within about 30-45 minutes he was back to being happy (once he was able to have some mommy milk). We were told it would be a couple days before we got his results, but before the business day was over we got the phone call. Everything looked normal! Big sigh of relief!

For Felix’s feeding/speech evaluation, I took him and Evan came along. Jarrod was working. I took Felix in hungry, knowing they would want to see him eat. She sat him in a high chair and used the puréed food I brought to feed him on a spoon. He was very attentive, happy, and eager to eat. He leaned forward with his mouth open for bites, and ate very well. The therapist listened to his swallowing sounds, watched his mouth movements and body language, and told me that his feeding skills are right on track with his gross motor skills. She had no concerns, and did not recommend continued therapy at this time.

For Felix’s physical and occupational therapy appointments I took him alone. I am very thorough on keeping Jarrod, who is an amazing provider, in the loop with all the details of the appointments. For his physical therapy, the therapist evaluated Felix and said his Hypotonia is mild, and really Felix’s muscle tone is on the low end of average. He said it takes more work than the average person for Felix to move his body, but physical therapy will certainly help. He wants to see him weekly for now, with exercises to do 4-5x per day at home.

For his occupational therapy, the therapist played with him a little and said anything she wanted to do for Felix at this point would overlap with physical therapy. Since insurance won’t cover anything overlapping in 2 therapies, she said she didn’t have a reason to continue therapy at this time. However she’s leaving it open-ended and “as needed” just in case he needs help with small motor skills in the future, which hopefully he won’t.

It’s only been 2 days since we started doing the physical therapy exercises at home, and already Felix is showing signs of improvement. He’s using his arms a lot more already.

Holding himself up on his arms!

Beyond the tests and therapy, Felix also has really become a lot more aware of the world, interactive, social, and communicative. I don’t know exactly what has changed for him, but Jarrod and I are both extremely thankful for it. He’s so much more happy and fun, and it’s amazing to watch him thrive and grow. We have a much more positive outlook for our little guy now.

Still to come: an EEG and neurology consultation, GI consultation, blood/genetic test results, ear exam and eye exam. It’s a wait to get in with all the specialists so it will be a couple more months for GI and neurology.

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. 🙂

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.

Year By Year

I came across this Instagram photo the other day and it got me thinking about all the changes I’ve gone through in the last few years.

2016 (April): In the pic on the left I had just started on my journey to becoming healthier, and had already lost about 25 lbs. In this picture, we were in Florida (with my ex-husband) as a family on vacation. It was the first time the boys or I had experienced the ocean or even gone on a family vacation, ever. I thought my life was going well, even though my relationship was on the rocks. I figured we’d work it out. I was working full-time, as was my husband. We were financially stable for the first time in over a decade. We were renting a house, and after we were done on this vacation we went home and bought a new vehicle. I had no idea what was in store for me in the future.

2017 (May): A year later, in the pic on the right, I had lost 60 lbs. and had a Panniculectomy (surgery to remove loose skin on my belly). Pictured here, I’m showing off my new, leaner body. My husband and I had split up and divorced. I had moved twice since the beach pic. At this time I was dating a life-long friends but he was incredibly verbally, mentally and emotionally abusive. I was trying to give him the benefit of the doubt because of our history, and I wasn’t thinking much about myself. I had been fired from my full-time job due to performance issues, which, looking back, probably had a lot to do with that abusive relationship. I wanted to be home a lot because not only was I worried about being cheated on, but I was worried about the safety of my children.

2018 (April): Jarrod and I had traveled to NC and I got a tubal ligation reversal. During that year, I started a new job delivering pizza at Pizza Hut, I kicked my abusive boyfriend to the curb for the sake of my kids, Jarrod and I found each other (at work) and fell head over heels for each other in a matter of days, we ran off to Colorado and got married, I got a panniculectomy revision and breast reduction, we merged our families into one home, and we decided to expand our family.

2019 (April): The final picture in this series… Jarrod and I and our new baby, Felix. In the course of the year, Jarrod had a vasectomy reversal, my middle teenage boy, Evan, had some serious mental health issues that needed to be addressed throughout the year, two of Jarrod’s girls went to live with their mom, I fought a serious infection from my breast reduction resulting and 2 extra surgeries to clean out the infection and a lot of antibiotics for several months. I went through an entire pregnancy resulting in a healthy baby. Jarrod lost his job at Pizza Hut after Felix was born, and I’ve been staying home with Felix, which has caused us financial turmoil. But he has since found a couple new jobs and things are finally starting to look brighter.

So many changes year-by-year, it really makes me not take anything for granted. I never imagined back in 2016, that I would be where I am now in 2019. In fact, if anyone would have told me, I would have thought they were a fool. I am so very grateful for what I have now, who I have become, for my amazing best friend and husband, and for my growing family. Here’s to seeing where we are in another year.

Mental Illness Is A Bitch

Evan came home from Orchard Place, an inpatient psychiatric facility for kids, on April 1st. He was there for nine months after attempting to kill me. He freely admits that. When he came home, he’d been home nearly full-time for a few weeks prior to that and seemed to be adjusting quite well. He was doing very well in school, managing emotions well at home, and overall seemed to have gotten quite a lot of anger control and beneficial results from being at Orchard Place. Once he was completely discharged from their program, things started slowing going downhill.

The first time he had a blowup, he threw an end table before running out the door and walking off his anger. The second time it was just yelling (mind you, when he yells it’s “f*ck this, f*ck that” etc). Then he started staying with friends of mine because he was becoming unmanageable in my home and refused to go to school anymore. The couple he was staying with are experienced with troubled kids, and used to be foster parents. That went somewhat okay for a few days until Evan adjusted and decided to behave the same for them. And the third time Evan had a blowup was last Thursday.

One week ago today, Thursday, Evan was upset over school and the friends who were graciously helping with him. So she brought him home to stay for the afternoon (after he decided to act up in school resulting in his expulsion for the rest of the school year). Once he was home, and I told him video games would not be played that day, so he stormed out the door to go for a walk. I was okay with that and left him alone. When he came back around the block he was swearing and screaming at the neighbors. So much so that someone down the street called the police. While the police were talking to the neighbors and myself, Evan found a piece of fence and threw it towards the neighbors house, hitting very close to a window. The police then decided to stop him, but he fought the police and ended up being arrested. While in the back of the police car, Evan was trying to hurt himself, and talking of suicide. He was taken to the local ER for psychiatric treatment.

While he was getting settled at the hospital, my mom and I were at the courthouse filling out paperwork for Evan’s committal. Once we got that completed and filed, I went to the hospital to sign forms for Evan‘s treatment. While I was there, Evan had a teleconference with a psychiatrist over a computer (Skype-style). She was saying stuff to him that he didn’t like, such as the fact he had to help himself and get the treatment he needs, and agreeing with him that he may be in a treatment facility for a very long time. Since he didn’t like that, he destroyed the computer. The police had to come to the hospital and file a report for destruction of property.

Evan being goofy once the anger passed.

Four days passed, and the hospital staff could still not find Evan a bed in a psychiatric facility. He had remained calm after that first day, so they decided to send him home. I explained to them that he could not be in my home with the baby and other children coming and going. But they refused to keep him there or continue to look for a facility, though a judge agreed that was what he needed. I spoke with the psychiatrist about him, and she agreed he had to go home as well. She told me that as a last resort I could relinquish my parental rights to DHS and they could help him. So I told the hospital staff to call DHS.

When the social worker showed up he told me he was investigating me for child abuse for denial of critical care. I sat down with him and explained the whole story, and while he claimed to understand my concerns about Evan being in our home, he explained to me that by leaving Evan in the hospital and not taking him home, I would be charged with child abuse. He also told me that even if Evan was in state custody, there was nothing more they could do for Evan than I was already doing.

So I was left with no option, I was to bring Evan, who was clearly unstable and unsafe, back home with the rest of the family. While Evan was calm before I brought him home, I explained to him that anymore blowups or temper outbursts would not be tolerated whatsoever. And that the next time it happened, I would find him a shelter to stay in rather than staying in our home and putting other people or himself in danger. He understood and agreed.

Then today, he had a moderate temper outburst again. The Mobile Crisis unit would not help because Evan was beating against the wall. The police would not help because Evan is a minor. I was advised to make sure everyone was out of the house until Evan calmed down. So I called Evan’s dad, who has not been involved in Evan’s life much over the last seven years or so. I told him that he needed to take custody of him. As of this evening, Evan is with his dad. I will help his dad set Evan up for success by continuing therapy and medication management, and then I’m leaving it up to him.

I can no longer care for a teenager (or anyone for that matter) that does not want my help and does not want to help themselves. Especially when that person can be violent to those who love them the most. I have tried for a decade to get Evan the help he needs, and now that he has gotten well into puberty, his mood disorder is so severe that I can no longer handle the behaviors that go along with it. I have been struggling with this emotionally for a very long time, and I finally had to put my emotions aside and do what was best for the rest of the family. I love all of my kids very much, including Evan. But his dad doesn’t have any other kids around, and I think being an only child and having that one on one attention just may help Evan. I hope.

These last few months in particular have been some of the most challenging I have ever experienced as a parent. I would not wish it on anyone. Evan is bipolar, even though he’s too young to have the official diagnosis. And every day is a struggle for him. I can only hope and pray that he can find what it is that helps him, the coping skills that he needs, and the wake up call that he needs, to want to help himself.

Also, this is in no way the entire story. This is a very short and trimmed down version of everything that has happened recently, and lacks a lot of details. So before you start judging Evan or myself or anyone else in the story, don’t.