Miles' Surgery Update

This little guy could be the next superman! He always amazes me with his happy demeanor, kind nature and fighter spirit. We were supposed to go into surgery at 9:15 AM, however, we did not enter our room into well after 10:30 AM. He was exhausted, agitated and hungry, but he just kept rolling over, watching cartoons and smiling at everyone until he fell asleep for a bit. It may have been because I don't allow him to watch any T.V. at home, but I'll take it!

Miles had eye surgery to correct a strabismus in one or both eyes. The misalignment in his eyes has caused him to see double, he has developed Ocular Torticollis. We would have liked to have the surgery earlier to avoid this situation, however, it really wasn't an option until recently due to COVID19. We felt comfortable with this decision because we were at a top hospital (St. Pete All Children's John Hopkins Hospital) with an amazing doctor (Dr. Lopez at Hess Pediatric Ophthalmology). I also had one of my dearest friends (Miles' Godmother) with me to help me along the way, as my husband had to work. She really was my rock that day and I thank God for putting people like her in our lives to tackle these obstacles.

After our wait, they took Miles back to the room and we waiting together in the cafe. We both realized it was after noon and we hadn't eaten a single thing. So we grabbed some pretzel bites and salad, as we were waiting I received a page from the doctor. Immediately, I feared that it was too quick and they ran into another obstacle while opening up the eyes and needed my approval, so I literally ran out of the cafe with the pretzel bites in hand, luckily Christine paid for them. I got to the room and Dr. Lopez had pretty good news. They went in to cut the eye muscle, but when he tugged on the left eye something popped and the left eye had much better movement/rotation (they don't expect perfection). They wouldn't do any surgical cuts now, but allow for that eye to reacclimatize and check back in a couple weeks to assess whether or not we needed more surgery.

This was exhilarating!! They took me directly back to Miles who at the time was screaming and rolling around in hunger and pain. After a quick bottle, Miles seemed content and we left planning our celebration. Miles fell asleep in the back and after a few checks seemed pretty good, just tired. As we arrived home and pulled him out of the carseat I immediately noticed that he has become puffy and swollen everywhere. I knew it was an allergic reaction, however, he had already endured anesthesia and so I knew it probably wasn't the cause, I assumed it was the Tylenol. We went to the emergency room and were taken directly back, people were asking about his head markings. Did he get ahold of a marker? I thought to myself, that would be awesome if he walked and got a marker. Does he have a sibling that drew on him? I was thinking...really? My child's hospital band is so tight that I can't remove it!?!? After taking his vitals and administering a steroid and Benadryl he quickly returned to normal color and size. Our doctor was extremely kind and found Miles to be quite the charmer-he must know that his mother feels the same way!:)

So, no tylenol for the little guy, but his progress with vision and both fine/gross motor has been tremendous. He is able to grasp puffs, hold is head at midline and he began missionary crawling this week. We will return to the eye doctor next week to see if he needs more surgery or not. Either way, he won't have any Tylenol in the after care this time.

I will keep you updated on his journey. We have his first birthday coming up on September 4th and my dream is for him to 4-point crawl and stand, maybe say mama and dada. I feel so optimistic about these goals. We have started PT and OT three times a week now, before you know it this guy is going to be on the move and I couldn't be happier to chase him around and allow him to get into things he shouldn't! haha! Stay tuned for videos and pics!!!

Til' next time, Mighty Miles will be conquering his goals, one mini-milestone at a time.

Mighty Miles

"Finding joy in the journey"

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Our sweet baby Miles, he came into this world quickly, with the sweetest disposition. We just knew he was a perfect fit for our family. He has truly made us better in every way possible. Our boys are our greatest blessings and our life is complete, now finally being their parents. Miles arrived on September 4th in the early morning, with a near perfect APGAR score and a natural birth, thriving and quickly released into the world after a couple days hospital stay.

He seemed quiet and fragile, once home. Unlike his brother who, after a month, looked like the incredible hulk, Miles was thin and frail, did not like the cold, loved being cuddled in your arms and would feed frequently and slowly. He seemed exhausted and would gaze intensely at you while sipping his bottle and closing his eyes for rest often. His eyes, piercing blue, and his hair, dark black with the most delicate facial features, he looked almost doll-like. Every single time I held him, I felt the need to protect him, he needed me and I needed him. As a mom, it seems that we are the first to notice things about our children that some others may not notice. Well, I could see his sheer beauty and I knew that he was different.

I worried that I had may have caused his "difference." I ate something wrong or exercised too often, too long or allowed myself to get too overheated. He is going to suffer because of me. I probably didn't take enough supplements or I shouldn't have been working which allowed me to get into a car accident where someone rear ended me. I couldn't seem to fully grasp that this wasn't a problem, but a difference and we would find out how to address it as a family.

Fast forward to his three month check-up and our pediatrician confirmed what I had feared, something was different as he was delayed (gross motor), vision issues, difficulty with tracking and neck strength. So, as a teacher and mother, I wanted to get ahead of this and get him into physical therapy and any specialists that would take us. I started my research and off I went. In the meantime, I took a year leave from my profession as a teacher and spent the next several months in and out of doctor appointments searching for answers and treatments. There is no fight like a mother's fight for her child.

I should also let you know that I suffer from anxiety and I feared having a child with unique needs. Why? I am not sure because I had obstacles to overcome growing up and it gave me strength and empathy for others. I guess I just wanted better for my own children. Just like all mothers, I didn't want my child to "suffer." I wanted my boy's lives to be better than mine, but really who are we if we aren't challenged and learn to persevere. We are the very make-up of our triumphs and failures. These experiences shape us into the unique individuals that we are today. I wanted to protect Miles, but I also want him to experience life. I want him to take a leap of faith and know that we are here to always support him with any outcome. So my idea of "perfection" dramatically changed. One quote that resonated with me from Heath Ledger during this experience was...

This changed my way of thinking. I often a question if my choice of activity or plan is making our lives happier or better. I have learned that true happiness differs for each individual and finding joy is so important in life. The most valuable lesson I have learned during this experience is that you need to go after your goals, take chances, celebrate small victories and love as many and as much as possible. There is no better time than the current time so start LIVING! This, I will say, has lead me to live a much fuller and happier life.

After I researched, consulted with several doctors and reached out to many friends and family. I concluded that he had the symptom of hypotonia, which is often a caused by something else, however I couldn't pin-point a cause. Miles was a natural birth, at 38 weeks and he didn't have any signs of neurological issues, so I started pushing for more tests and therapies. I went to PT twice a week and met with an Early Steps Early Interventionist once a week. After taking in all the information, both my husband and I believed he had Benign Congenital Hypotonia. We prayed on it and put every effort into building his gross motor skills.

We were told at our first Physical Therapy appointment when Miles was three months old that his gross motor abilities were that of a one month old and the PT wrote in his documents that the "mother was visibly upset and cried." They assured us that there would be no way to know if he would be able to walk or talk at some point. I left feeling defeated and angry. That was not an answer I could or would accept. My child would do everything he was capable of and we would make sure of it! My husband, the sweetest man on Earth, said we could find a new PT and we did. It was the best decision of my life. When I walked into my new PT's session I felt comforted, optimistic, cared for and secure in her knowledge and abilities. Her strength motivated me and that day I knew that together we would get Miles where he needed to be. Isabel was honestly an angel sent to us by God. I truly believe that Miles connected immediately with her delicate touch and guidance. He started to make unbelievable strides right away with Isabel and now we both look forward to every visit with her. We also drive 40 minutes to see her because she is life-changing. If you live in the area and need information please PM me. She has changed our lives for the better!!! :)

Photo: PT with Isabel, Neurology appointments and Eye Appointments

After a month of therapy, the test results started to come in. The EEG was normal and the blood tests came back completely normal. So, we went to both the Geneticist and Neurologist to suggest more tests, which my incredible physician agreed were appropriate and got us into the right hands immediately. Dr. Piedrahita is also someone placed into our lives to make our situation positive. She cares for each family as if they were her very own. She worked diligently to get us a Geneticist (Dr. Sanchez) and immediately were given a micro -chromosomal array order (along with a plethora of others but that was the most important) and we were to see those results before moving forward with an MRI of the brain. As parents, it was so difficult to watch our infant go through all these tests and as we navigated our new norm, when COVID hit with a vengeance! Now, we have a compromised infant (we don't know the cause yet) and our world in a global pandemic. Our PT sessions were cut and our doctors appointments were now virtual. Our entire team was taken away in one clean swipe. You can imagine that both Dad and Mom had to pull it together and pray for love and guidance.

Photo: Head tilt due to Occular Torticolis (our next obstacle to conquer-eye surgery)

After having my child poked a prodded we received the results from the doctor, COMPLETELY NORMAL again! We celebrated! We cried, hugged and cheered. We cheered so loud that the entire neighborhood could hear us. (the meeting was virtual at this point). Now, we faced the most difficult decision up to date, do we take our now seven month old infant to the hospital for an MRI of the brain? COVID19 was rampant, we have another son to think about and of course, the anesthesia. We decided to take all precautions and go ahead with the MRI. Watching your son go limp in several seconds was terrifying, but we knew that we had the best doctors and team to help us navigate this journey. We needed to get him all the care he needed to thrive.

Photo: MRI at St. Joe Hospital (kindest staff and cutest kiddo:)

A day later, we received the news...NORMAL again! So, his diagnosis was as we originally surmised, Benign Congenital Hypotonia which reads "provided there are no other underlying problems, this should gradually improve and the baby develops and gets older." We were elated! Again, we celebrated and thanked God for our blessings. Some of the built up anxiety lifted and life went on. So, why explain all that to you, because there is an end in sight. There are answers. You are not alone. You can get help and it is scary, isolating and difficult to navigate but now Miles is thriving and so are we. Support is necessary and you, as a parent, are making the right decisions for YOUR child. I know that your child may not have hypotonia but they will face challenges and you will need some support, guidance and love too. I followed many blogs, "Instagramers" and developed my own little community to help me and I hope that this reaches someone who may need the support.

How has this changed me? This is the best part. It has given me unwavering courage. It has tested my strength and devotion. It has taught me to choose FAITH over Fear. It has made me happier and more connected with others. My marriage with my husband is stronger and more full than ever. As a family, we are ALWAYS hopeful and we find the the joy in the journey.

My favorite picture to date, this boy is always smiling and laughing.

We celebrate each mini-milestone. I can vividly remember the first smile, first laugh, the first time he lifted his head from tummy-time, the first time he rolled over and back, and the first time he tried to crawl. He is so happy and he is always smiling! He adores his brother. The shrill of his laughter makes my heart skip a beat. Miles is perfectly imperfect, just like all of us. I just love him so much. A friend of mine told me, "each child you have doesn't make your have less love to give, it makes you grow another heart!" She is so right, I know that I have a HUGE heart for each one of my boys and I find myself often stopping and thanking God that he gave me a little extra time for you to be reliant on me. Time is so fleeting so hold on to each moment.

All in all, I have learned that being a mother challenges you. It challenges you to be better, love harder, live fuller and continue to grow and learn throughout your journey. Mamas out there, you are tougher than you ever imagined and being a mother is the most special and rewarding gig out there. We need to lift and empower one another! I share this story to connect and reach other mamas out there. We are in this together. Find something positive in each other, life each other up, find your tribe and love them hard!

Photo: #foreverbesties #brothers

One of my dearest friends said the most perfect thing to me. She said" God chose you to be Miles' mother because he saw the fire in you." I will forever and always live by this quote and I will continue to thank God for putting wonderful friends and family in my life that drive and support me on this journey. Today, find the joy in the moment and hug your family a little tighter. And watch out because Miles is going to do BIG things for this world of ours, I can feel it it! Stay tuned to find out more on his journey...next stop is eye surgery and I have no doubt that he will conquer this!

"Strength comes from struggle, when you learn to see your struggles as opportunities to become stronger, better, wiser, then your thinking shifts from "I can't do this" to "I must do this."

-Toni Sorenson

Stay tuned...we have more conquering to do.

#mightymiles #hypotoniaawareness

COVID Birthday Celebration

Celebrating in quarantine after unexpected COVID exposure.

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Photo: Lights | Pillows | Blanket| Jumpsuit use code: Happiness30 (30% off entire order) |

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We can all agree that 2020 has had it's challenges. We could easily throw in the towel and wish for 2021 because this has been HARD, really hard, but I refuse to give up. I will not let the difficulties overshadow the important events and triumphs that have occurred this year. Two weeks ago Monday, we found out that our nanny, one amazing woman that has become part of our family, was exposed to COVID19 and she found out 6 days later that she was positive. She did everything according to protocol and she was so upset that she contracted this highly contagious virus from visiting one friend. I assured her that this is not her fault, we will get through this together. And that is just what we did. This birthday for us was quarantine style, even though I was negative for COVID19 and the boys showed no symptoms of the virus we decided that 14 days was necessary to be safe. So this birthday will be celebratory of all things positive in our own home with my people! Here we go, my list of 2020 things that I am grateful for...

1. More time with family (my immediate and my parents)

2. Our health (COVID free after direct exposure and Miles' clear MRI)

3. Miles' diagnosis and perseverance

4. Parker's progression with learning/love/acceptance

5. Blogging journey with my SIL

6. Zoom Happy Hours with my best girls (connecting with those out of state)

7. Learning to live in the moment

8. Updates on our home

9. Time to reflect and plan for our future

10. Enlightening myself on racial justice in our country and how to be part of the solution

My birthday was different and small, but still just as perfect as any other birthday. We usually spend the day with our friend couples and another day with my girls. I love spending the entire week celebrating because I LOVE being with people, socializing, dressing up and dancing. This year we got expensive Starbucks coffees, drove around looking at beautiful homes, napped, and we planed to get take-out Mexican food to eat in the park. Well, it rained so we made a "fort" as Parker would call it and ate Mexican food and drank delicious margaritas. My friend stopped by to drop gifts and her presence was so needed. I talked her ear off. When she left, the four of us snuggled in to watch a movie. It was a pretty nice day overall, but the best present of all was given to me near the end of our day. Our sweet Miles was holding himself up on his forearms for some 15 minutes with the head control of a champion...miracles happen, God is great, and sometimes when you least expect it He shows you that He will take care of you. I am so grateful for those 15 minutes, they made my year, 2020! I will look forward to my next blessing, in 2020. (check the video)

Tips for COVID celebration:

Wear comfy but stylish clothing

Add LIGHTS

Order food locally

Write letters and gratitude lists

Laugh, LOVE and Lounge

Photo: Necklace | Earrings | Jumpsuit use code: Happiness30 (30% off entire order) | Stack |

I wore this super fun and comfy jumpsuit from Boutique OZ, use our code to get a discount. I also always wear this Faith/Fear necklace because the quote means so much to my family and it was a gift from my best friend.

Keep those lights up to enjoy for the week.

Love,

S