Tag Archives: love

Felix is 8 Months Old!

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:

โ€ข Looks at faces, makes eye contact, smiles, and has stranger anxiety.

โ€ข Rolls front to back, back to front.

โ€ข Reaches up and out with his hands to grabs objects.

โ€ข Sits for a few moments at a time, with improvement every day.

โ€ข Stays on hands and knees for a few moments with help.

โ€ข Squeals, babbles, and razzes all the time.

โ€ข Enjoys bath time (and swimming at the Y).

โ€ข Likes playing games and singing, like โ€œPat-A-Cakeโ€ and โ€œItsy Bitsy Spider.โ€

โ€ข Actively and happily participates in physical therapy at appointments and at home.

โ€ข Drinks breastmilk on demand, and eats purรฉed baby food twice a day.

โ€ข Sleeps in his crib (no longer his bassinet) for longer stretches of time at night. But still doesnโ€™t nap well.

โ€ข Still prefers the outdoors.

Iโ€™m sure there are a few things Iโ€™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!

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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 Felixโ€™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 purรฉed 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 Felixโ€™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 Felixโ€™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 wonโ€™t cover anything overlapping in 2 therapies, she said she didnโ€™t have a reason to continue therapy at this time. However sheโ€™s leaving it open-ended and โ€œas neededโ€ just in case he needs help with small motor skills in the future, which hopefully he wonโ€™t.

Itโ€™s only been 2 days since we started doing the physical therapy exercises at home, and already Felix is showing signs of improvement. Heโ€™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 donโ€™t know exactly what has changed for him, but Jarrod and I are both extremely thankful for it. Heโ€™s so much more happy and fun, and itโ€™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.

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.

Social Media Anxiety

In July, I left Facebook for a while.ย  The only reason I don’t leave permanently is because I have friends and family on there that I do not otherwise connect with, and I don’t want to lose touch.ย  But anyway, here’s why I took the break: social media induced anxiety.ย  Comparisons to others’ lives, mostly surrounding Felix.ย  As I’ve mentioned before, we have some concerns about his developmental milestones, and possible delays.ย  I’m a member of a few support groups of people with babies born around the same time as Felix, and for a while it felt like all of those babies were growing in leaps and bounds while Felix was lagging back fairly drastically.ย  He had “colic” or tummy pains for what seemed like forever, and still continues to have more mild pains occasionally, at 6 months old.ย  He wasn’t making eye contact, reaching for toys, or using his hands much for a long time either.ย  Seeing all the other babies around the same age doing all of their typical age-appropriate behaviors was making me feel like not only a bad parent, but extremely worried for the future of our baby.ย  What if he is handicapped?ย  What if we have a child who will not have a normal life?ย  What if he will require assistance beyond what I ever imagined?ย  And I went further and further down that spiral.

Once I broke free of those groups, and realized I needed to quit comparing Felix to the rest of the world, I started to accept our reality rather quickly.ย  I started to gain some clarity, and ease back from the severe and dark anxiety cloud that was looming over my head.ย  And I started to come to terms with the fact that Felix is not every other baby.ย  He is his own very unique person.ย  And that’s NOT a bad, scary thing.

Once I got that clarity, I started doing things to help him out.ย  I downloaded BabySparks (app), and have been working with Felix every day that he feels up to it.ย  I found more ways to entertain and soothe him, and haven’t always been distracted by my phone.ย  I have accepted him for who he is instead of trying to gain control over something that is not controllable.ย  And after all of that, I know now he’s not as delayed as I thought he was.ย  Now that he’s feeling better and is over most of the tummy issues, he is catching up.ย  He’s making more eye contact.ย  He’s smiling and giggling more.ย  He’s babbling, playing, and interacting much more.

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Spending time in nature, just the 2 of us.

We do still have appointments with developmental specialists just in case there is more we need to do.ย  But after breaking free of social media for a while, and connecting with Felix on a deeper level, one-on-one, without comparisons to other babies, I believe we are in a much better place.ย  *I* am in a much better place, with less anxiety and more happiness and joy for my baby, which makes him a happier boy too.

Felix will have his 6-month checkup on Friday the 9th, and I will post an update on his measurements and all that he can do after that appointment.ย  He has grown and changed so much in the last month.ย  And Jarrod and I are so proud of him.