Tag Archives: Miracle baby

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.

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.

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.

Year By Year

I came across this Instagram photo the other day and it got me thinking about all the changes Iโ€™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 weโ€™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, Iโ€™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 wasnโ€™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 seriesโ€ฆ 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 Jarrodโ€™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 Iโ€™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. Hereโ€™s to seeing where we are in another year.