Dysphagia and other Shenanigans

Okay, so I just realized the past few post have all been about Mia or Spina Bifida or hospital stuff. Let me just say, I do do other stuff than just hang out at the hospital. And I do  have another child who needs me just as much, and we have so much fun with all the crazy things he comes up with. If you follow me on Instagram, you know I'm not always at the hospital. Oh, and we do fun things.

I guess I just really want to raise awareness of Mia's condition and all the things that come with it. Maybe to help somebody out who has an SB child. Maybe to help those around Mia understand her better. And maybe, it's just therapeutic for me and I like explaining these things because when I do, I understand them better myself.

I haven't even written about Halloween!!! I had a great blog post planned. But I think it's too late.


******

SO DYSPHAGIA!!!!

Bret colored for a good 10 seconds during our 45 minute wait in the waiting room.
Good thing there was a tiny aquarium that entertained him for a solid 2 minutes.
Monster's University did another 5 minutes.
And the colored chairs, carpeted floors, me and some mints did the rest 38 minutes

My sweet girl slouching because she was bored.
She only smiled because I smiled at her. I love her smile!

Mia had a "swallow test" yesterday. They basically take an x-ray of her while eating. They put a chemical that colors the food she's eating so they can see it on x-ray. They also slowly thicken whatever it is they are giving her to see how she swallows different thickness of food.

Bret and I are behind this wall. The Speech Therapist and Nurse are in there with Mia. 

This took about 20 minutes and then the Speech Therapist talked to me... and Bret, about Mia.

I learned that the Epiglottis closes when we eat. It lowers as we swallow to keep the food from going into our lungs. The difference in Mia is that her epiglottis takes a little longer to close especially when what she is eating is a liquid. The epiglottis doesn't close fast enough and some of the fluid goes into her lungs.

She has had a lot of the symptoms
- Coughing, choking when eating or drinking
-Frequent respiratory illnesses (she has had a cold since March people!!!)
-"Wet" or gurgly voice (very Mia. I think it's cute. But I have always known there was something "not right" about her voice"
-Vomiting of liquids and solids!! (Hallelujah! We figured out what's been causing the vomit!)

New Things We Have to Do:

1. Thicken her formula: We now have to use a thickener every time we feed her. It has to be to a certain consistency that the Dr's ordered. For a year (at least), until they repeat the test, she has to use this to thicken any liquid.
The downside is that this is basically corn starch. She already has problems with constipation due to the SB and the nerve damage it caused on her bowels. But now, this is going to make her more constipated. Thank goodness for Miralax.

2. Feeding Therapy: Besides having dysphagia, she has a big sensitivity to textures. We need to help her overcome these sensitivities and be able to eat other foods besides formula. Or else, she will have to have a feeding tube put in.

3. No watery foods. We got a big list of "watery foods" that she can't have. I was surprised of all the things that were considered watery. There's a bunch of fruits and ICE CREAM GUYS!! Oh and popsicles, and all these things Bret has had that she won't be able to have for at least one year.

What are her chances of getting over this?

According to the Dr. She has three strikes against her:
1.Spina Bifida
2.Hydrocephalus
3.Chiari II Malformation

These all cause problems with swallowing, but there is a chance that she can overcome it!

I hope so. I am not liking the thought of Mia having a feeding tube or getting her food thickened and not being able to have popsicles, or jell-o or mandarin oranges, or WATERMELON (my favorite fruit!).

But meanwhile we be chubby, cute, and happy!

*Update: As of January 2019, she is still on thickened liquids.
We use a brand called Simply Thick and we love it! (Not sponsored). You get your own on Amazon, or through your insurance.

Post 8 Month Miracle

More than two weeks ago Mia turned 8 months old. I didn't write a milestone post because we were having a hard time. She wasn't progressing at all. In fact, she was regressing. A lot.

It's hard to explain my feelings towards my daughter having Spina Bifida. Basically, I hate it, but I love her. My choices were,
1. Not having Mia at all
2. Having Mia with Spina Bifida and all the challenges that come with it

I am so glad I chose option 2. It can be so hard sometimes, but I would never give her up. She brightens up my day! I would do it all over again, even when it's hard.

My cute little Wonder Woman!

For the past month Mia has been regressing baaaad! She had the upper-body strength of a newborn or a 3 month old. She could not hold her head up for longer than a minute. Could not do tummy-time for a minute either and any position was just too uncomfortable and hard. 

Also, for the life of her, she could not eat solids. Any time we tried, she would throw up a ton! It wouldn't even go all the way in her mouth. As soon as it touched her tongue it was, see ya later food!

So, when 8 months came along, there was nothing good to report and I just wanted to enjoy her smiles, and giggles. Also, I was trying to come to terms with everything that is coming and I just couldn't bring myself to write about it. 

During Spina Bifida clinic, she was seen by the Neurologist, Neurosurgeon, Physical Therapist and Occupational Therapist. Like always, the Neurosurgeon acted like a robot and left. But everybody else was concerned with Mia's lack of movement in her upper body and lack of interest in eating solids. She also wouldn't put any toys in her mouth. When doctors get as concerned about something Mia has as I am, I get even more concerned because I knew something was wrong. 

They ordered a sleeping study, a swallow study and a sedated full-body MRI. These will be done in November and beginning of December and we'll get better results then. 

This past weekend though, we've been seeing miracle after miracle! I felt like I needed to write about it.

Friday November 4th: Mia played with a pretzel licked it with her tongue AND didn't throw up!!

Saturday November 5th: Mia put a toy in her mouth for the first time EVER!! She didn't touch it just with the tip of her tongue, NO! She full on put it in her mouth and played with it!

Monday November 7th: Our physical therapist came over to our house. Mia lasted the whole hour!! She didn't even cry! We worked on rolling, tummy time, and sitting! The therapist evaluated her and she is now at a 6 month level in upper body strength AND working on some 5 month motor skills!! 

I am SO happy! I mean, going from 3 month old strength to 6 month old strength in a few weeks, it's a big deal. She still can't hold her head for super long. But she can do it longer than before and that is fine by me! 

She is almost rolling over. She is getting better at grabbing toys! Her hands are opening up a little bit more, she's not as fisted as before. 

We also worked on a new move. Going from her side to sitting! The therapist led her through the entire thing. But, she loved that exercise. 

Also, her language is almost at 8 months! WAH-BAM!

Sometime this weekend, she started screaming! I feel like her personality is finally coming out! She now gets frustrated because she can't move how she wants to. So, if she's laying, sitting, or facing the same direction for longer than she wants, she complains and screams. It's hilarious and annoying. But I am so proud of her!! Is it weird that I like her screaming because it's annoying? That's a "regular baby" thing and I am so happy! 

Watch my sweet baby roll! Way to go Mia!!

Our Journey with Spina Bifida (FAQs and Facts)

Did you know, Spina Bifida is actually an umbrella term to define different neural tube defects?! Crazy huh?! So, no two Spina Bifida patients are actually alike, because they all have different "types" and the lesion or affected area is actually different on every person! 

Due to the fact that this month is Spina Bifida Awareness month, I will address a lot of the questions we get asked about Mia and tackle some myths about this birth defect. 

*This post was updated January 2019 because some medical diagnoses changed*

Our Journey with Spina Bifida (FAQs)

Mia looks so healthy! How does Spina Bifida Affect Mia? 

Just because Mia has this birth defect, it doesn't mean she is "sick" all the time! She is actually quite "healthy". She is more susceptible to allergies and UTI's and those are our main problems. I will explain the latter in questions below.  

Instead of Spina Bifida, let's call it by what Mia actually has: 

Myelomeningocele (pronounced my-e-lo-MENING-o-seal). Basically, before birth, (around 8 weeks of gestation) the baby's backbone, spinal cord and the structure they float in (spinal canal) did not close normally. A myelomeningocele is the most serious form of Spina Bifida. It also causes the baby to have a lot of fluid in the brain called, Hydrocephalus. (For more information click here)

I did it in black and white so people can stomach the image. But if you can't feel free to scroll down. 

In Mia's case, she was born with a sack. This sack had her spinal cord floating around in spinal cerebral fluid. The doctors had to dissect it, take the spinal cord out and put it in place, then stretch the muscles, and skin over it so she would be able to lay flat on her back without causing a major infection. This surgery was done the day after she was born and is now all healed up! 

Her lesion, or affected area is in the L4-S2 region. Which means, the bottom part of the spine. She has some weakness from the knees down, but a few months after turning two and a half, she started walking!

haha! Her cute face!! 

She also has nerve damage that affects her bladder (called, Neurogenic Bladder) and her bowels. So we have to straight catheter her. You've seen me post about me having to "cath" Mia in the morning or if we hang out in person you've heard me say things like, "I have to go! Gotta go cath Mia."  A lot of you are probably like,

Yeah, I know. I'm probably using it wrong. HECK probably all SB parents use it wrong. But it's easier than saying "I have to straight catheter her" every time!

What do you mean by that? How long will you have to do it for?

We currently cath Mia every day every 3 hours. This makes it more likely for her to get a UTI. Last time she was hospitalized in 2018 was due to a pretty nasty kidney infection. And it just comes on. We try to do it super clean, but the catheter introduces bacteria regardless. 

To cath Mia we need: The catheter, swabsticks (to disinfect the area)
and lubricant, to put on the catheter so it can go in easily.
Then, we insert the catheter in the urethra and empty the pee out in a sample cup or diaper (not pictured). 

Does it hurt her?
According to what the doctors have said, and how she acts, she can't feel it because she doesn't have feeling there. It doesn't bother her one bit. Except when she has a UTI, then it bothers her when I press on her bladder.

This is how she's going to learn to potty train! So, she might not be potty trained for a while.

As for her bowels: She also has neurogenic bowels, which means, the whole process of emptying for a b.m is quite difficult for her body. As of the summer of 2018, we started her on something called, The Enema Program. I will go into more detail on another post that I will tag here. 

She will always have bladder and bowel incontinence.


Finally, myelomeningocele caused her to have a Chiari II malformation.

Normal Brain (I got this from the Internet by the way)

Mia's last MRI scan

A Chirari II malformation means that the cerebellum part of the brain, got sucked in to the spinal cord during gestation when the spinal cord didn't finish forming. In other words, she has some part of her brain in the spinal cord.
This causes problems when the shunt isn't working, and pressure builds up in her brain, it squeezes the malformation more into her spinal cord, causing muscle weakness or loss of movement in the upper body. She has dysphagia and hypotonia due to this malformation.

In conclusion, hydrocephalus and the neurogenic bladder is what causes most of the "health issues" and hospital stays. If we don't treat the hydrocephalus, she gets brain damage. If we don't take care of the cathing, she gets kidney damage. The "extra" things we do for Mia are so that she can have the best quality of life possible.

2. Well, did you take Folic Acid while you were pregnant?
A lot of people asked me this question when I was pregnant with Mia and they learned she had Spina Bifida. Some still ask me now.
Let me tell you what my doctor told me, "It IS NOT your fault!" It hurts when people tell me how I "could've prevented" it. Trust me, I couldn't.
I took folic acid religiously, but I was also really sick during my first trimester. Turns out, doctors don't even really know why people are born with Spina Bifida. They think it might be for these reasons. But since it's not in my husband's family or mine, and I always took my folic acid, then it was just how it was meant to be.
Mia is perfect in every way! It's not something we need to point fingers at and assign "blame" to. It's just the life she was given and we are going to make the best out of it.
So, if you ever meet someone who is expecting a baby with Spina Bifida, hug them, be kind, and don't look for a culprit. Then, tell them to contact me because I'd love to become friends with them.

3. Will her brain get better and nerve damage "heal" as she grows?
Nope. There's no cure. There's no special pill to make it "go away". She will have it for the rest of her life and it will affect her differently as she grows. However, she can grow up and have quite a normal life!
Isn't that great?!

That's it!
Three major questions with a lot of information!

I'm so grateful for modern medicine! Her chances of living and succeeding in life have grown exponentially because of it.
If you have any more questions, please feel free to ask. Hope I was able to tackle some myths and answer your questions.

If you want to learn more you can visit:
http://spinabifidaassociation.org/
or
join the group: Redifining Spina Bifida on Facebook, it truly gives a new outlook and it has given me a lot of hope.

Please feel free to share this post so we can raise awareness about Spina Bifida.

Thank you for reading and praying, for us and Mia! We really appreciate it!

Fall Activities in Utah for Kids under 3: Muller Park

The beauty of the outdoors! Muller Park Trail is a gorgeous trail in Bountiful Utah. Kids LOVE the outdoors and the magic that comes with it.
You can park off on the road close to the houses. You walk up the road for about 2 minutes until you hit a bridge. Keep the kids close during this part because there are cars going up the mountain and down the mountain. There are also bikers that come around the corner. After you get to the bridge, the only thing you have to watch out for are the bikes that come and go. But, the kids are free to roam around.

Five minutes into our hike, the kids were tired and wanted to snack. We found this area off the road to have our snacks and water. Mia was the most uncomfortable one of us all, because she was in the hiking back pack.

They loved every dog that passed by them and said hi to all of them. There were some really nice dogs on the trail that day.

The hike is kind of steep, but totally doable for the little ones .You don't even have to go all the way up, we didn't. Emma and Nelson had fun collecting leaves of all colors.

Bret felt free to be and he ran most of the time. Mia liked it better when I was walking, I think she was really uncomfortable in the hiking back pack.

Next time, I think I'll just bring her in the kangaroo pack. But I like that I can pack snacks on this back pack. So, who knows, we'll see.

At the end, we went to the river that's by the road. Our goal was to throw rocks in the river and let the kids get the rest of the energy out. But Bret of course, likes to be an adventurer and go the extra mile and become part of the river. Didn't even matter that the water was freezing cold, he got in the water and then sat in the river. No prob.

We give this park/trail **** (4 stars)

1- Easy access
2- Safety- You have to keep a watchful eye on the kids. Don't stress out, but know there's incoming cars, bikes, dogs. In my son's case, I have to keep him away from the river. Especially the deeper parts. Because he will most likely go in. The trail is kind of narrow. We herded the kids away from the edge and it was fine. They were obedient. Bring extra clothes!
3- Entertainment- It was fun! The kids really enjoyed themselves. They loved to explore and just be outdoors.
4- Great place to have a snack with kids younger than 3 months and old enough to sit by themselves. I think Mia would have been more comfortable if she was able to sit on her own.

All in all, it was a great trip. We would do it again.

Fall Activities in Utah for Kids Under 3: Kuwahara Farms

I have made it my goal to try and get out as much as I can, while the weather is still nice. There are so many benefits to us leaving the apartment.  For starters, the apartment isn't as messy! I love being able to walk through my home! We also decrease screen time. And my most favorite is...Bret doesn't scream or throw tantrums as much/ as often... YAY!

This week's adventure took us to Kuwahara Farms in Draper

It was beautiful! They had three green houses filled with different kids of pumpkins and Halloween decorations. The kids loved the dragon in the first tent (Just in case you were wondering what we were looking at in the picture below). 

My favorite were the pink/blush pumpkins, like the one on the bottom right hand corner of this picture:

The kids are free to walk around and touch the pumpkins, sit on them, or play with the hay. Bret is usually the first to run away and venture off to more exciting parts, but this time around he stayed close. He was so entertained by all the pumpkins. 

They have these wagons there that you can put the kids in. Or the pumpkins. Or both! You can also bring a stroller! 

Here's my friend Anai pulling the wagon and wearing her baby Sophie.
Mia is in the back there somewhere in the stroller!

Tiny hands. Tiny pumpkins. Perfect!

So many gourds so little time!

Finally, the famous corn pit and the bounce houses. Bret LOVED the corn pit. Emma, not so much, but the bounce houses were a hit. Nelsito loved both the corn pit and the bounce houses, but he was more into the inflatable minions. Mia, well...she grabbed corn for the first time and her feetsies couldn't get enough! 

I wasn't very good at taking pictures of the bounce houses or inflatable characters.
 But you can see one of the bounce slides in the background.

We give Kuwahara Farms ***** (5 stars) for:
1- Easy access- Parking, Strollers, wagons...wheelchairs.
2- Entertainment- You can spend 2 hours there and the kids will be happy and ready to nap.
3- Food- They have yummy churros to snack on! We got 5, but I think next time 3 would have been enough for all 5 of us.

4- Bathrooms- They only have one porta-potty. With not a lot of space inside, so plan accordingly.

Happy Fall everyone!

Mia is 7 months!

Photo Credit: Jhonattan Villalobos

Is this year flying by or what?! My baby girl is 7 months!! She's a warrior.

I want to title this month, "The Fight of the Infections". She had an ear infection in both ears and she had a Urinary Tract Infection (UTI) called, pseudomonas aeruginosa. It's a pretty bad UTI and we had to start straight cathing her 4 times a day, instead of 2 because she wasn't peeing on her own anymore. Thankfully she started peeing on her own and we're down to just 3 times a day. This type of UTI is not very common in regular babies, but it's pretty common in Spina Bifida babies because they have to be cathed daily and that introduces bacteria (no matter how clean or sterile you do it).

After she got over that, the swelling alongside the shunt started going down and we were able to breathe for like, two days. She then started throwing up at least once a day. When I felt along the shunt, I felt a really hard ball right behind her ear next to the shunt. It almost fell like a bone growth. I called neurosurgery and they got me in to clinic the next day. When they saw her, they told me she had two lymph nodes that were swollen. 

Yes. I totally made a cartoon of what's going on inside of Mia

Basically, the lymph nodes next to the shunt became swollen because they are fighting off an infection. Since she was better from the UTI and from the infection in her ears I asked the Neurosurgeon, what infection are the lymph nodes fighting? He said that they weren't sure, but that they were pretty certain it was the shunt. 

A shunt infection is probably the worst thing that could happen to her because it could cause some permanent brain damage and we won't know exactly what part of the brain it affected until she's older. 

Her body however, is trying so hard to fight the infection, so she hasn't gotten super sick yet. We're still on surgery watch with Mia. If her body is able to fight off the infection, great! If not, she'll be in the hospital for a couple of weeks and they'll go in, take out the shunt, then have the fluid drain outside of her body until the infection clears. Then, they'll go back in and put the shunt in. 

When I asked if we could check to see for sure if she has a shunt infection, they told me that they couldn't do that. They can and there is a way to know, but it's too risky and it can introduce infection and make things worse. So, we'll just let her fight it off on her own. 

So while we wait for the infection to take its course, we celebrate other things:

Mia now JUMPS!! I am so proud of her! She loves bouncing up and down and loves doing it to the rhythm of music. This is great because it means her legs are getting stronger. She's working hard on her lower body strength and doing amazing!

She can sit without help for about 10 seconds! She either falls over to the side or she folds in like a sandwich (hahaha). But, she's using her hands for support so much more and her glutes are getting stronger! 

We have come so far mobility wise. I can't believe how much she can do! She is kicking hydrocephalus' butt! Telling it who's boss! 

She grabs her feet! She was first doing it only with her left hand, but now her right hand realized there's also a right foot she can grab! So, she's opening up her right hand more than before and grabbing her feet!

They love watching "Brother Bear" and "Kung Fu Panda"

She loves her brother and when he plays with her

My #1 companions

They even came to my mission reunion with me

All in all, I'm so grateful for my baby girl and the strength she has. I love her so much!

Happy 7 months Mia Grace!