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.


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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!!