Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, and yes I realize this post is about 17 days past due. But life gets crazy, and that’s what its been like around here, just pure fu@#&*g chaos. But it’s here now, so please read, enjoy and then share, so others can enjoy it too!

So anywhooo..

We have several fun things going on, which, please feel free to get involved in. We love having new friends and old friends, and sometimes friends contact us and say hi.

Actually, we just like having friends in general.

 

 

We’re currently putting a massive amount of our free time into fundraising for the Down Syndrome Association of Miami, in hopes of reaching our goal to donate $2,000 to the Miracle Walk happening in Coral Gables, FL on November 3rd. Our link for more information is listed below.

https://www.gofundme.com/f/downsyndromeawarenessfundraiser

 

 

We’re also inviting local members of our community, family, and friends to sign up for the Miracle Walk and to join our team. Logan’s Loud Loonies! You can sign up directly on the DSAOM website and choose our team.

OR!

You can buy tickets on our Eventbrite page, linked through our Facebook. Join our team, and the day of the walk you receive an official team t-shirt (as well as the official walk t-shirt), and the chance to add to our donation goal. Our link for more information is listed below.

https://www.facebook.com/events/336893087097040/

 

Anddddd Finally…

the bake sale!

In an extra attempt to really reach our donation goal we will be selling mom’s home-baked, with real love and real ingredients cakes and cheesecakes.

The proceeds of each cake will be put towards our GoFundMe goals!

Current favorite flavors:

Golden Oreo Funfetti cheesecake with homemade whipped topping
Dulce de Leche topped brown sugar cheesecake with Oreo crust
Jack Daniels Tennesee Honey with a buttery graham cracker crust
White Chocolate Raspberry with homemade whipped topping and a buttery graham cracker crust
Plain cheesecake with homemade strawberry topping and a buttery graham cracker crust

We are also accepting custom flavor requests, and offer size variations in: 4″, 6″, or 11″ options!

Simply Text (305) 490-9461 or email us jroque810@gmail.com

with your name and cake request for more information!

Don’t be shy about asking for details on how to get involved, and don’t pass on the chance of meeting this beautiful soul, and getting involved in our beautiful community.

Join us, and lets spread kindness around like confetti….

 

♥JG

Starting Feeding Therapy

Starting Feeding Therapy

Sooo.. let’s talk about how much fun we have been having in feeding therapy. I mean, I knew Logan was going to like it because duhhhh.. FAT GUY loves everything! But oh.em.gee my friends: logan in feeding therapy, discovering food, is the most magical thing my momma heart has ever seen.

Through Cindy’s (linked here @talk.eat.play ) careful tutelage we’ve discovered so many new types of food! Plus we have experimented with so many new textures, messes, and flavors. And you wanna know what the best part of this is?

He likes to eat my cooking

You have no idea how much that satisfies my momma soul.

Considering how little (to practically nothing) Evan eats, the fact that Logan LOVES to eat every soft steamed whatever I put in front of him is amazing! And what’s more… you best believe its flavorful, and full of spices and seasoning! Because the kitchen is my happy place. I love that he loves what I love. You know?

And honestly, Cindy is amazing in how she encourages both me and Logan to discover new things in the kitchen and in our diets. The other day… I cooked with vegetables (ugh! it disgusts me just to say the word!) made them into a soup, pureed that sh*t, and BAM! guess who ate pureed broccoli and cheddar cheese soup.

This momma and son duo.

Dude, it had onions, carrots, broccoli, and potatoes. Things I would never eat! Never in a million years.. but within 30 or so minutes we were both three bowls deep. And loving every veggie-filled bite. 

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So. Much. Fun.

 

-JG♥

Sorry for our absence…

Sorry for our absence…

Things have been like super hella crazy around here, and thus our site has been eerily silent. I don’t even know where to begin to describe what our life has been like for the past two months. Sooooo much has happened that it’s impossible to think of just where to start. We hit milestones, we went through extreme lows, and then we came out the other end better people.

The biggest milestone?

Logan turned One.

Over the last few months, he’s grown and learned so much, and yet I still feel like with him time stands still, and he’s going to be my baby forever. The way he crawls all over the house makes me so proud, I laugh when my mom calls him “una cucaracha mala”. He can now come up to a tall knee position and is crushing every obstacle course Diana builds for him. We’ve discovered how to bang maracas together, and honestly,  it is the most magical thing I’ve ever seen.

Over the last few months, we’ve also discovered so many new things such as bathtubs, the beach, and plenty of new public outings like aquariums and brunches. We’ve learned how to say da da da, to hold our own bottle, we’ve made so many new friends, and we’re beginning to experiment with soft solids.

Making huge progress.

In so many ways I feel like each day is the same and we are getting nowhere. Still no clapping, still no waving, still no walking. But then I think of how far he has come, how he can now respond to simple words such as “up” and “come”, how he loves playing with his brother, how he can successfully bang items together… and don’t even get me started on his feeding accomplishments!

The more days go by, the prouder I become of my little wolverine. He’s accomplished so much, and likewise given me so much to learn and grow from. He’s quite possibly the best decision I have ever made, and the most fun I have ever had.

Mom

Speech Therapy Evaluation

Speech Therapy Evaluation

I feel like lately, it’s just one doctor, and one evaluation, and another doctor, and another evaluation… referrals, prescriptions, and doctor visits. Round and round we go. I’m drowning in them. But that’s what this stage of my life is going to be like, right? I knew to expect this and I knew that at this stage, I would be dedicating myself to this sole purpose. For his betterment, because at the end of the day, when you’re a mom, everything you do is for your kids, and to put them forward.

Speech therapy, but my kid doesn’t even speak? I didn’t get it? I didn’t understand how he could already have a delay in an area I didn’t even know to begin practicing. But then I think back to Evan, and what that was like. How he communicated with me at this stage, and the radical difference I see in the development of both my sons.

Logan turns 1 at the end of this month, and there are many areas within his communication skills that he’s falling behind on. There was so much information I absorbed in the 60 minutes that Logan was evaluated.

At first, came the usual onslaught of questions about Logan, from pre-birth to birth, to first months… and so on until where we are today. We’ve been working hard with Logan’s ITDS to have him combine consonant syllable sounds repeatedly, for months, and so far we have no success.

And yes, we know how to tell what Logan wants when he wants it because we know how to distinguish his cry, but that’s about it. Otherwise, his communication skills with us are very minimal or like nil to none.

But I didn’t think anything of this. Why? Sometimes, I forget Logan is turning one because his milestones are telling me my baby is 6 or 7mo. old. He’s just learned to crawl, were just beginning to explore solids, and we can finally sit unassisted on our own. But we still have a long way to go in terms of keeping up with the delay.

He has begun to have exploratory skills in the 6-9mo. levels. However, in his own range, he scored very minimal scattered skills. There are certain areas and skills where he does have full competency, like in the 0-3mo. range.

Well, thank god!

But ask me if Logan can point out his momma?

-Nope.

Or does he understand simple words?

-Nope.

He also has difficulty bringing his arms together repeatedly at mid-line. In other words, no matter how hard we practice, he still doesn’t clap. And listen, I practice that clap…. every. day.

Every. Damn. Day.

We continue to practice all kinds of skills daily, as we incorporate books, photos, and images to help him start recognizing the language. We encourage hand signals like “up” and “bye-bye”, and what’s most important is that we continue to work as a unit, making sure Logan gets the daily stimulation he needs.

But, hey, were working on it! And eventually, as with all things, he will get there.

And that’s the most important thing that I have to keep reminding myself, and telling myself… repeatedly.

He will get there.

All things in life are a phase, and this too shall pass.

After our evaluation, the therapist is suggesting we go full steam ahead and do 30 minute sessions, 3x a week.

We are currently doing PT & OT for a combined total of 3 hours a week, with our latest recommendations for feeding and speech, we’ll be doubling that number to 6 hours a week.

But this is for him, his betterment, and his benefit, and really there isn’t anywhere else I’d rather be.

 

-JG

 

 

Feeding Therapy Evaluation

Feeding Therapy Evaluation

I like to joke that you would never guess Logan ate from a feeding tube for the first 5 days of his life. He’s a chunky monkey that likes to eat everything and anything you put in front of him. And if you’re eating something, you best believe, that yep you’re going to learn to share! So naturally, when feeding therapy was suggested, I was a little confused?

 

This fat guy?

He’s a champ at taking down his bottles lightning fast, which has come to require that we cut open the nipples (old Cuban traditions) — so that he can huff down the liquid mud we make his formula into. He’s basically drinking his oatmeal out of a bottle.

We even, maybe occasionally put his compota’s in there as well.

Cuban traditions die hard.

He also eats a whole bowl of Abuela Milly’s homemade purees, which contains all kinds of delicious goodness. Beans, meat, chicken, potatoes, rice, vegetables, spinach… you name it, he eats it.

Apparently, cutting the nipples is frowned upon by health professionals, and it’s time I let Logan learn to play with his food. Yes, it’s great that he eats well, and is of a healthy weight. But no, there are certain milestones he should be meeting which he is not. Primarily, we need to build the strength of the muscles within his jaw and cheeks, to give him the correct stamina he needs to chew. Right now, he’s a bit lax in that department.

Ask me if Logan can hold his bottle?

-Nope.

Can he chew soft solids?

-Nope.

Does he chew on puff cereal or children’s teething cookies?

-Nope.

-Can he drink thin liquids from a bottle?

-Again, nope.

These were things which were worrisome, but I didn’t think too much on. After his Feeding Therapy Evaluation, though, there are a few changes we’ll need to start making to his eating routine. Starting with new bottles, {eye roll here}. Ask me how many times I’ve heard this schpeel lol

The recommendation: we’ll be doing feeding therapy 2x for 45 minutes sessions.

 

Follow along to get updates on how he does!

Physical Therapy, 6mo. later

Physical Therapy, 6mo. later

We started physical therapy when Logan was about 5 months old. At the time, I thought Logan was rockin’ it when it came to meeting his milestones. He was doing tummy time great, and he was rolling from prone to supine (I’ve picked up a few terms over these sessions lol), holding his head up like a champ and all! However, after the initial evaluation, I quickly learned just how mislead I was.

Whhaaaa?

Yes, Logan was doing great in meeting his milestones, but he was cheating and using disorganized body movement. Something I was completely unaware of, as I had no clue what to look for. Diana, his physical torturer {ahem!} I mean… therapist, quickly filled us in on how Logan was overcompensating his movements by using extension to accomplish most of his actions.

tsk. tsk. tsk.

Not like that little Logan.

We came into physical therapy doing 3 sessions a week for 30-minute sessions. When we first started, Logan was using his shoulders to hold up his head and neck (looking like the Uncle Fester all day) and was preferring to utilize extension to accomplish his rolling. These were the first movements we corrected, as Diana began to work with him, and cue-ing him towards the correct movements.

We experienced A LOT of crying during these first initial sessions.

But we worked at it. Every day. We worked not only at therapy 3x a week, but we also worked as a unit at home, intermittently taking turns, ensuring little Logan was practicing correct movements. All. The. Time.

I began to ask excessive questions during our sessions with Diana. I wanted to know as much as I could about what he was learning to do, with what muscles, and how it would help him further his development.

“And what was that word you used?” “How can I do this at home” What if he does this?” “How do I correct this movement?” “What if he does this movement?” “He does this a lot, is that normal?”

I feel like that is my number one question:

Is that normal?

but what’s normal?

Because I’m not, and with him I only see perfection. 

Today, at the 6mo. PT re-evaluation I was able to show Diana how I’m learning to crawl on my own. I came into therapy 6 short months ago, unable to hold my own head up properly. But with constant support and dedication from my family and the amazing people at  Nicklaus Children’s Outpatient Therapy center, now? Now I can sit completely unassisted, I can roll all over the place like a crazy animal, and I’m finally beginning to learn to crawl.

Mommy is so proud! Not only of the progress I’ve made, but also of the way I continuously learn. The way I can pick up cues quickly, and continuously work at these movements, even when no one is helping me. Sometimes, mommy catches me in my play pen practicing weight baring, and she can’t help but laugh.

Physical therapy is quickly becoming one our favorite ways to start the moring. ♥

 

 

 

Here we are, 10mo. later…

I didn’t originally want another baby. I was satisfied with just Evan and content enough to raise just him. However, my husband (sneaky bastard who knows me so well), appealed to the younger me who dreamed of a large family — similar to the one she grew up in.

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We tried one time, a random day on my ovulation cycle, exactly 2 weeks off the pill. When we woke up the next morning, we second-guessed that decision and said:                    “maybe we should wait” | “maybe we’re not ready” | “maybe in another year”

But guess what?

You don’t get to choose.

I knew instantly I was pregnant with Logan (which is probably why I felt like it was the longest 9mo. ever). The vomiting began just 2 weeks into gestation, and it would never stop. I’m not saying I gagged a little in the mornings, had a bit of nausea, or threw up a bit of stomach acid.

No, my friend. I. THREW. UP. All the time. ALL THE TIME.

It’s called hyperemesis gravidarum, which translated online means “severe vomiting”. Severe vomiting?! During my first trimester, I lost 30 pounds and was seen in the ER 12 times for severe dehydration. I couldn’t even hold down water. Add to that my loose bladder from Evan’s pregnancy, resulting in tons of amounts of pee coming involuntarily out, therefore making me smell homeless. Real attractive pregnancy glow [cue sarcasm].

I couldn’t leave the house without vomiting and pissing everywhere. On myself, down my pants, in the car, in the chairs I sat on, in the beds I laid in, in the stores I went to. EVERYWHERE. I felt disgusted with myself and spent most of the day at home changing my clothes, vomiting, and crying myself into hysterics.

I want to say it got better, but it didn’t. -_-

They gave me my first ultrasound at week 20, 5 weeks behind schedule. At the initial ultrasound, I was advised that something didn’t quite look right, in a very nonchalant, this is of no importance kind of manner, and that there were some images which the doctor felt might reflect Down Syndrome. They referred me to further testing, but otherwise, I was shrugged off and no other information was given.

At week 22 sequential blood work through the Harmony Blood Testing exam revealed a possible positive marker of Trisomy 21 for our little Logan. They would like me to come in to discuss our chances and other options for testing.

But, our little Logan, who already had a name, who already had a brother waiting for him, and with which whom I had already fallen hopelessly in love — might be, what? defective? No one had even told me what Trisomy21 was, nor did they even bother to explain it.

Google became my friend.

Shortly afterward, we opted for the amniocentesis, and I have to say — as a mom who has birthed naturally twice using an epidural… nothing compares to the pain of that needle piercing through the skin, then the abdomen, then the uterus, then the placenta. You feel, each. and. every. puncture.

And when you have a hyperactive fetus (like Logan), you get to ride that ride twice.

Fun times.  😉

Not.

In less than 2 weeks we got a call from Dr. Q at Maternal Fetal Medicine, that he would like to see me. Today. Within the next hour if possible. At that moment, I felt my heart sink. We were seen immediately upon arriving at the office and given another full work up ultrasound. Shortly after we were given the results, and asked very nicely about whether we had thought of how we wanted to proceed with the pregnancy?

I was so confused in this moment, as termination was never an option, no matter the results of the amnio. Hearing the doctor voice this question aloud, gave me uncertainty for one moment. One. Split. Moment. that I thought I was not meant to have this baby.

But I loved him. I loved him so much already, and I had faith that the universe knows why it does what it does. What’s meant to happen will happen. Have faith in your destiny. All that other horse shit.

So of course, we were confident in our choice to keep Logan, and raise him just like the other savages kids being raised in our house. Dr. Q was nothing short of magical as he followed our case. Through him we found the initial strength we needed, to know that our baby was going to be ok. And he was the most perfect thing we would ever lay our eyes on.

“The world needs more parents like you”

-Dr. Q

And now 10mo. after being with Logan I am ashamed at that feeling of overwhelming loss I had at the moment they told us we had a positive diagnosis. After all, an amnio has a 99.2%. accuracy rate. At that moment I just felt loss, for the life I had begun to envision with my two boys, which now seemed to be so unclear, so tumultuous, and so uncertain.

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I’ve never met an individual with Down Syndrome, and now I was about to be the mother of one. To say I was sadly unprepared is an understatement. But now? Now the only thing I know is that Logan is the biggest blessing we have ever received, and the universe truly does know what you need when you need it.

I spent the remainder of my pregnancy fighting all kinds of emotions as I processed an immense amount of information, and struggled with daily anxieties and fears… all while being unmedicated for the first time in 15 years. To say that my Bipolar Mind had reared her ugly head is the understatement of all these understatements. So, the Support System stepped in, and 2 weeks before giving birth to Logan, I moved back home with mom and dad. Half my stuff in one place, half my stuff in another. But it was the best decision I made. Not only for my own mental health and sanity but for the health of my children and family as well.

Now? Now Logan is 10 months, and in just two shorts months, he’ll turn 1. I don’t even know where the last ten months have gone as I have been through some crazy moments. I’ve lost my mind and my cool on more than one occasion, and there have been some hella crazy times. But motherhood is quite possibly the scariest hood I have ever been through. And I’ve seen some {bat shit} crazy stuff in my day.

At 10mo. my little wolverine has made huge leaps in overcoming any obstacles put before him. His “delay” is considered within “normal” (someone please define normal for me) limits and considered on par for someone who does not even have a disability.

He does have a delay in his fine and gross motor movements, so we go to physical and occupational therapy 3x a week, for 30 minutes each. We call it our “gym time”. We have upcoming therapy evaluations for speech and feeding, in hopes that we can get in front of the delay, rather than behind it.

I’ve learned so much from Logan over the past ten months. So much on motherhood, life, perspective, outlook, and love. I’ve learned to be quieter (which if you know me, is a difficult feat in and of itself), I’ve learned to be more patient and open-minded. I’ve learned compassion and strength. And I’ve learned, ultimately, that moms really can do it all, and then some!

♥JessG.