Felix is 8 months old today! In the last month he has really blossomed. Whatever funk he was in for the first 6 months of his life has definitely passed.
Things he does now:
• Looks at faces, makes eye contact, smiles, and has stranger anxiety.
• Rolls front to back, back to front.
• Reaches up and out with his hands to grabs objects.
• Sits for a few moments at a time, with improvement every day.
• Stays on hands and knees for a few moments with help.
• Squeals, babbles, and razzes all the time.
• Enjoys bath time (and swimming at the Y).
• Likes playing games and singing, like “Pat-A-Cake” and “Itsy Bitsy Spider.”
• Actively and happily participates in physical therapy at appointments and at home.
• Drinks breastmilk on demand, and eats puréed baby food twice a day.
• Sleeps in his crib (no longer his bassinet) for longer stretches of time at night. But still doesn’t nap well.
• Still prefers the outdoors.
I’m sure there are a few things I’m missing. But these are all big changes that came all at once. He also got his 6 month shots today since he was on a delayed schedule due to his previous CMV infection. At his appointment he weighed 18 lbs 1 oz, and was 27 inches tall.
Now if I could just get him to smile for a picture, it would be really helpful for these monthly updates. Haha!
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.
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.
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.
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.
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 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.
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 are still struggling, but I think we have things under control. Many of you made very generous contributions, not only on GoFundMe, but in person, in supplies, and in support. I cannot express the deep gratitude Jarrod and I both have. Thank you so much to everyone, from the bottom of our hearts.
We’ve had an extremely productive day. We had Felix’s AEA assessment, and they said he’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 AEA‘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 farmer’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!