Felix is 1!

We made it!  Felix is a year old!  He has grown and changed so much since he was born.  For the first six months of his life I didn’t think we’d make it to this day, but we sure did.  Nowadays, Felix is a very busy boy.  He is working very hard in physical therapy, building up those muscles that it takes to crawl and eventually walk.  He crawls a little bit at a time once or twice per day, so he DOES know how.  But he finds it easier and faster to army crawl on his belly to get to what he wants.  He likes to use his walker toys to pull himself up onto his knees or his feet.  But he’s not at all steady on his feet yet.  I am excited for him to learn how to use his body in these ways, but I am in no hurry.  He’s moving on his own timeline and I’ve finally come to a place of acceptance with that.  He’s healthy and happy and that’s what matters the very most.

Felix is still breastfeeding, though less these days.  He eats breakfast, lunch and supper with the family, mostly eating what we eat.  He still has some purees and softer foods because with his motor delays, he has some delays in how he eats as well.  But its getting better every day.  He loves bath time…. in fact I think anything involving water is his favorite!  He splashes and crawls around in the tub.  And when I take him to the pool at the local YMCA, he is very excited and kicks and splashes the whole time!  His other favorite part of the day is breakfast time with mommy and daddy before work.

I don’t want to jinx anything and say everything is on track with sleep… because nothing is perfect.  But for the time being things have improved.  In general he’s sleeping more at night, but still never took up napping.  I’ve accepted that as well, and quite enjoy him being awake and keeping me company during our days.  He’s so fun, smiley, and really likes helping me do household chores and having me play with him in his playroom.  He also has a couple of friends for play dates now.

Some things coming up for Felix: he had an eye exam and they found he needs glasses.  Hopefully that will help inspire him to keep working on crawling.  We’re hoping if he can see further and more clearly, he will want to explore his surroundings more.  Also, when he stands, he has a tendency to turn his feet over and stand on his toes and the tops of his feet with his toes curled under.  The PT says that is what some kiddos do for stability, though it is terribly counter-productive.  So he’s getting SureSteps (braces) for his feet that will go with shoes and help create the habit of standing on his feet properly.  He is expected to need them for only about 6 months, since he’s so young.  Also, since we’ve been working so hard on large motor skills, we’re going to get new evaluations for fine motor skills and feeding.  He’s making wonderful progress, so we expect a little extra help will help him get caught up all the quicker.

This has been a challenging, but exciting year.  I’m very happy with how far we’ve come, and where we are now.  I’m excited to see what the next year brings and beyond.  Felix has become such a wonderful little boy.  I don’t know what I’d do without him.

Felix is 10 Months Old!

Felix is 10 months old today. He is so happy these days, and is a delight to spend our days with.

We are doing better with routines now, and I think that has helped him understand when bedtime is. Sleeping remains a struggle, and naps are nearly nonexistent, but we’re going to continue to work on it.

The developmental specialist said we should try to re-introduce dairy into Felix‘s diet, and so far it’s going well in small quantities. He is eating a pretty wide variety of foods now, and is finally starting to try and feed himself.

He is not crawling yet, though he is getting closer every day. His physical therapist reduced his visits to every other week rather than every week because he’s making such wonderful progress. She said she anticipates him being caught up with his peers by age 2. We are just all so happy that he is getting caught up, and that he has passed his fussy first several months.

I can’t believe we are nearing one year old! Onward and upward!

Bonding

When I was pregnant with Felix, I had certain beliefs and expectations of becoming a new mom again.  I knew I would be tired and sleep deprived for a while, and sore from the c-section.  I knew I wanted to breastfeed, and I knew the baby would sleep in our bed at least part of the time.  I knew we had family and friends who were looking forward to not only meeting our baby, but helping with him for babysitting and such. And I knew I wanted to stay at home with the baby for about the first year or so, at least.

From the first day Felix was born, he gave me hell about breastfeeding, which continues today.  He has found new and unique ways to make nursing challenging just about every week.  From refusing, to not latching right, to blood sugars requiring supplementation, to LOTS of biting.  Its been crazy!

My expectations about sleep deprivation were very inaccurate.  It’s been nothing like I thought it would be.  Felix does not have typical sleep patterns.  For one, he doesn’t really nap.  He sleeps 20-30 minutes, 2-3 times per day while laying on one of us.  If he gets put down, he wakes up.  And at night, for the longest time he didn’t sleep much.  He was awake for 2-3 hours in the middle of the night, and nursed several times overnight.  He would be wide awake and happy, playing in the dark and keeping us awake.  I was getting 3-4 hours of sleep per night for months.  It has evolved a little over time.  Now he generally sleeps well overnight, but still wakes to eat 2-3 times, occasionally staying awake for an hour or two, or occasionally having a night where he doesn’t sleep much at all. On the flipside of that, he occasionally has nights where he sleeps 10 hours straight.  But its more on the sleeping side now.  Even though he’s still challenging to get to go to sleep.

Friends and family have been few and far between as far as visits.  No one babysits except Felix’s big sister Zoey.  And that’s only been a couple times.  But some of that is just because Felix had CMV and was grumpy and colicky until he was about 6 months old.

And that’s where the point of this post comes into play: illness and colic, and bonding with my baby. For the very tough, colicky period, I loved Felix of course, but I didn’t like him. I hated all the crying, particularly because there was nothing I could do to soothe him. I couldn’t make him feel better. He would look directly into my face and scream frantically as if pleading for me to make it better. It broke my heart every day, and I sobbed right along with him.

And after a while the helplessness made me feel like a shitty mom. It made me angry, not at Felix, but at the universe for making my poor innocent baby so uncomfortable and upset. It also made me angry with myself for being so completely unable to make it better. I didn’t understand why it was happening. I started to have feelings of regret and resentment towards myself and Jarrod for deciding to have another baby in the first place. I was desperately missing the time I had spent with my husband, my older kids, my other family, my friends, and even working. I was entirely consumed with the fact that I now had to take care of this little, helpless, miserable, screaming human that I could not comfort or make feel better. I knew it would be a temporary phase in the bigger picture, but every day felt like an eternity. I didn’t see a light at the end of the tunnel.

Then, as more time passed and Felix wasn’t improving, wasn’t getting past his colic, and now had obvious developmental delays… my already sleep-deprived, depressed and anxiety-ridden brain absolutely ran away with ideas of serious illness and disabilities. He wasn’t physically moving right, seemingly wasn’t seeing or hearing well, wasn’t responding to anything or looking at us at all, had no interest in toys or really anything. Our family doctor really didn’t know what to tell us, so he sent us onto specialists. But before we could meet with the specialists, I couldn’t help but worry myself sick. My brain just would not shut off, thinking he had some severe life-altering condition or issue.

When we met with the developmental specialist the first time, Felix had improved only slightly. That was in August. Genetic tests, body system function tests, and many imaging tests were ordered. Physical, occupational and speech/feeding therapy was ordered. The doc said he wanted to be super aggressive for the best outcome. But while we were waiting for all of these appointments, Felix started to improve on his own.

The only test that came back without a normal result was the one for CMV antibodies. Meaning at some point in Felix’s short life, he had been exposed to CMV and had gotten an infection. CMV is like mono, and it effects everyone differently. Apparently it had a very strong, long lasting effect on Felix in a very important developmental period of his life. So he felt like he had a cold/flu for likely 2-3 months, and that is what was delaying everything.

In October, Felix had his follow up, and by then he was like a whole new baby. And since then he has improved even more. He is babbling, playing, social, happy, communicative, and a complete joy to have in our lives. Physical therapy is helping him learn how to move his body the ways he should have learned when he was sick with CMV. It’s giving him the awareness and confidence to try new things and he’s really blossoming.

His illness and delays really drove a stake into my heart at first, and made me question our decision to have another baby. It was extremely tough, and looking back I’m not sure how we survived it. But now that things are coming closer to “normal,” speaking for myself, there’s an overwhelming sense of relief and joy in my life. Felix is an amazing little guy. I’m so incredibly grateful and blessed to be his mommy. He has taught me so very much already, and I’m sure he will continue to teach me more. The bond is strong now, as I feared it would never be. Thank goodness.

I’m so lucky to have been able to stay home with him and support his extra needs. If I’d had to work or if I wasn’t as involved as I am with him, we may have missed the issues and it could have had much more lasting effects on him overall.

I’m even luckier to have an amazing husband supporting not only Felix’s needs, but me, my needs, and my dedication to helping our son. Jarrod and I make a pretty phenomenal parenting team. There’s no one in the world I’d rather have as my partner in life. He has supported me through all the struggles, listened to all of my venting, and done everything he could do to help in every way. He’s shared in all the joys and triumphs, with just as much excitement. He’s the best husband, father, and man I’ve ever known.

Now the regret and resentment is completely gone, as it has transformed into bliss. We made the right decision to have a baby. Felix makes the most perfect addition to our family. All the older kids adore him, and I feel like his presence is bringing us closer as a family as well. Something we all have in common. I am enjoying watching his personality develop and shine, and I am hopeful and excited for the future with Felix in it.

Felix is 9 Months Old!

He’s trying to crawl! In this photo he’s on his hands and knees. He bounces like that. He also sits up with his back straight and can balance much better.

He’s been using his walker to stand but doesn’t have very good balance on his feet yet.

He’s also been eating what we eat in tiny bites rather than purées most of the time. He loves being included in whatever we are doing.

He likes being sung to and listening to mother goose songs on Apple Music. He also likes a few minutes of a time of Sesame Street.

He’s sleeping better most nights, and we’ve given up on naps. He will sleep for 15-30 minutes on me or Jarrod a couple times per day. That’s all.

He is enjoying more and more play time on the floor. We anticipate Felix will be mobile very shortly. I believe by his ten-month update he will be crawling. Stay tuned.

Step 2?

Felix had his follow-up with his developmental specialist last week. All genetic tests came back normal. Imaging and other tests were normal except reflux, which we already knew. Great and consistent progress and improvement during physical therapy. So Dr. Noble said unless we wanted to chase any genetic anomalies, he wouldn’t see him back for another 6 months. Which we chose not to do since he seemed very optimistic and not at all worried any longer.

Things Felix has left to do in November:

• Othamologist

• Audiologist

• GI Specialist

• Neurologist and EEG

• Continued physical therapy

No new specialists beyond November at this point. We may have follow-ups, and of course continued physical therapy, but nothing more referred by Dr. Noble. We’re making progress!

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:

• 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!

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 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.

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 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.