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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.

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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.

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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.

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.

Milestone Concerns

Anxiety is not my friend, never has been. Nor is sitting at home with Felix day after day being totally immersed in his fussiness while Jarrod works to support our family. I see other babies in my birth month group on Facebook doing all the typical milestones for Felixโ€™s age either on time or ahead, smiling, giggling, going out and doing fun things with their families. I look at Felix… and heโ€™s behind. Not behind by far, but enough that I tend to dwell on it. And his fussiness generally keeps us home, making me feel trapped. Iโ€™ve spent many hours (most days) trying to keep him appeased. Usually with little success, until this past week. This past week I decided two things.

First of all, rather than be frustrated and resisting the reality of Felixโ€™s temperament, I decided to accept and embrace it. This is who he is and it wonโ€™t be changed. Heโ€™s my buddy anyway, no matter what. So Iโ€™m doing my best to go with the flow.

Second, rather than dwell on all my anxiety over his milestones, I downloaded an app on my phone called BabySparks. Iโ€™ve been using it to do developmental activities with Felix every day. Iโ€™m putting my worries to work by working with him to develop the skills in which he is behind. Just in the last five or six days Iโ€™ve already begun to see improvements. Which is keeping him active and happy with the benefit of also easing some of my fears.

Tummy time, cuddles, a popsicle, and a Bumbo seat!

I never really thought about milestones or any such thing with my older boys when they were babies. Iโ€™m not sure why Iโ€™m so worried about it now. Back then I just went with what they could do at the time and we were all happy. They all reached their milestones when they were ready and are all perfectly fine teenagers now. I think maybe all the online comparisons are getting to me, not sure. But Iโ€™m tired of being worried. In a few months it will be a distant memory and Felix will be just where heโ€™s supposed to be, after reaching those milestones on his own terms, when HE is ready.

As for some of the fussiness and tummy pains Felix still has lingering on, we have been referred to a specialist by his doctor. He sees the specialist in a couple weeks. Iโ€™m not terribly worried that something is wrong, but there are still things Iโ€™d like answers for. And hopefully it will makes Felixโ€™s life a little easier to have those answers and potential solutions.

But as for this and everything else, weโ€™re just taking things one day at a time.