Tag Archives: normal

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.

Advertisements

Felix is 6 Months Old!

Felix is six months old! He had his six month check up today, and updated his vaccines. He was running a little behind on vaccines because for his four month check up he was fighting quite the virus. It turns out he had CMV. If you don’t know what CMV is, I very strongly suggest that you research it. I knew nothing about it before Felix was diagnosed as having had it. I believe he contracted it after he was born rather than in utero, so we have that working in our favor. However, since the symptoms last so long, his development is delayed a bit. That would be why he wasn’t meeting his milestones or doing much of anything for a couple of months earlier in his life.

However, as of today, the doctor and nurse both are not concerned with the way Felix behaves or appears in the doctor’s office. The nurse has been doing her job for well over 20 years, and said Felix seems like a pretty average six month old baby now. As of today, Felix is 16 lbs. 10 oz., and 26 1/2 inches long. He is in the 30th-40th percentile for baby boys of his age. It seems odd to me that he is so small on the percentile chart now, when he was so huge when he was born. But he’s been growing on that path all along, so that is clearly the size he was meant to be. There is no concern there.

Developmentally, when it comes to his milestones, he is a little behind still. I truly believe it was because he was feeling crummy for so long, however he does still have an AEA evaluation and developmental specialist evaluation next week. We want to cover all of our bases so that if there is an issue, we can address it early so Felix has the best chance at having a typical childhood.

As of yesterday, Felix started rolling front to back a little, and understands how to roll back to front with help. When he gets put into a bouncer seat, he scoots his butt forward until his feet touch the ground, and then he scoots out of it. He sits up without support for a few moments at a time, but likes to throw himself backwards so we have to be careful. He still isn’t good about eye contact, but he is looking at things and tracking movements much better. and he absolutely loves playing around with our new piano. I swear he’s going to be a piano star when he gets older. Lol. Other things he likes are going swimming, taking baths, and most of all, the porch smoking. When he is having a bad day, and is the most upset, we can sit on the porch swing together and he’s happy for the time we’re there. He has also started solids, and really loves meal times. He is still breast-fed for the rest of the time.

Overall Felix is a pretty happy, good spirited young man. But when he’s having a bad day, everyone knows it, and there’s not a whole lot we can do to get him past it besides just get through the day. I’m hoping with time, the bad days are fewer and further between, filled in by many more happy days. He is such a joy to be around when he is in a good mood.

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.

img_1267
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.