It has been a crazy 9 months since Mia was born. She was in the NICU for 2 weeks and we've been in and out of the hospital ever since. (If you just joined us and want to know why click here).
This Christmas season I have found myself deeply reflecting back on all the kind words, service, and prayers we have received from friends, family and complete strangers on behalf of our family. The care we have received at the hospital has been amazing. There have been some pretty stressful and emotionally draining days and we have felt loved and supported all year. Thank you!
Every time we go to Primary Children's I think of all the families that are there. The ones that I see at the cafeteria and the ones I don't get to see. This holiday season, there are going to be families at the NICU experiencing grief, worry and emotional, mental and physical exhaustion. I know we can't take that away and we can't take away what their babies have. But we can help them feel loved and supported and that their babies are being thought of, loved and well taken care of.
I was thinking of helping the hospital with things that they need in order to help these families feel less stressed and like their babies are being thought of. When I called them they gave me a list of the things that they need. Here is the list:
-Newborn sleepers with snaps
-New board books
-New Rattles
-New non-latex teethers
We personally have been able to receive some of these things. For example, Mia didn't have any clothes at the hospital because we didn't know how long she was going to be there and she couldn't lay on her back. She was covered in I.Vs and cables, we didn't even know if we could touch her let alone what she could wear. One day, I came in to see my baby girl and the nurse had dressed her up for me. Mia was wearing a headband and a onesie. ALL donated items and she looked beautiful. Seeing her in clothes made me forget for an instant that Mia was in the hospital.
I know they give the parents board books so they can read to their babies and their babies can hear their voice. I loved that. It made me feel better to know that even though I couldn't hold my baby to comfort her, I could read to her and she could hear my voice and know I was there.
The rattles and teethers are used for either pain control or distraction. As Mia has become more aware of the world around her, C.T scans and X-rays, and getting blood drawn gets more difficult to do. They have these buckets with toys to distract your baby. Mia loves this rattle that lights up when she's getting a C.T scan.
These are just a few of the many ways we have benefited from donations at the hospital. These donations have completely changed our hospital experience. We can do that for other parents during the holidays!
Please donate!
Join our page on Facebook called, A Better NICU Christmas.
Send donations to:
A Better NICU Christmas
Lizbeth Camarillo
P.O. Box 1332
Bountiful, Utah 84011
If you wish to send money instead, please donate to our GoFundMe account:
www.gofundme.com/32uvt28
We will be collecting these items up until the 22nd of December. We want to have everything ready to be delivered by December 23rd so they can hand it out on the 24th.
Thank you for helping us make these families' Christmas more bearable!
Tuesday, December 6, 2016
Thursday, December 1, 2016
Our San Diego Getaway!
We drove from Utah to San Diego with two kids under 2...
I took the kids on a walk around the park by the cliffs. I took Bret out to look at the waves, and that kid almost launched himself into the ocean. I had to use all my strength to hold him back and put him back in the stroller.
and WE SURVIVED!!!
I don't even know why I worried so much about everyone's clothes and packing snacks for the ride. What I should've worried about was entertainment for the little ones. Especially Mr. Bret (Flash). We thought maybe listening to some Roald Dahl would do the trick, but I don't know what we were thinking. I think sometimes we forget how old our kids really are...
This parenting thing...we're really just winging it.
For the 12 hours in the car, there was a lot of screaming and crying and me swearing off having any more children. Heath was as calm as a summer breeze though. We left at 3am and he drove the whole way. The kids and I slept here and there, so there were some quiet times. He and I both agreed we aren't doing another long road trip until the kids are older.
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Whenever we go anywhere, we have to pack our essentials. Even if it is only for a night, we pack A TON! Babies need LOTS of gear.
-2 pack and plays
-2 pack and plays
-Mia's bumbo seat so that she can actually sit and enjoy the view.
-Boppy pillow to feed Mia or to just sleep with (It's WAY comfortable in the car!)
-Our handy-dandy double umbrella stroller. (I was surprised at how many people asked us if Bret and Mia were twins haha).
- And of course all the diapers and wipes we can fit in the car.
- And of course all the diapers and wipes we can fit in the car.
I'm kind of glad Mia is not eating solids because we don't have to pack any extra solid food, just her formula and thickener. Also, all her medical supplies. We were so grateful we only had to cath her twice this time around! It would've been harder to have to stop every 3-4 hours to cath, like we were doing once before.
We were also so very grateful that Bret isn't potty-trained yet. Flash is super smart and I betcha that if he were potty-trained, he would've asked to go pee just so he could get out of the car and not necessarily because he had to go.
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Our hotel was in downtown San Diego and we arrived on Thanksgiving day. We decided to stay in that day and rest from our travels. We attempted going out to eat, but there was nowhere to park, so we just ordered pizza and watched Toy Story.
Friday
Friday
We drove to the beach
A friend recommended the cliffs at La Jolla, so we went and had breakfast there. It was magical! I was in heaven! (Even if Bret was throwing a tantrum and Heath had to take him on a walk until they brought our order). I just felt like I was in a movie without a care in the world!
I loved the pots hanging off the wood panels. The people having conversations in different accents and languages. The bohemian-looking lady that showed us to our table. The fact that we were a block away from the ocean and that we were going to spend the rest of our morning at the beach.
It was EXACTLY what we needed. A break from the hustle and bustle of every day, a break from hospitals and therapy. A BREAK!
-Bret had chocolate-chip pancakes for breakfast. He gobbled that down ( I tried a piece, and let me tell you, it was divine!)
-I had chilaquiles. You guys I can NOT tell you how happy it made me that they actually tasted legit! They were served on top of black beans, with a fried egg on top and queso fresco!!
-Heath had the all American breakfast and had little to say about it...
I took the kids on a walk around the park by the cliffs. I took Bret out to look at the waves, and that kid almost launched himself into the ocean. I had to use all my strength to hold him back and put him back in the stroller.
When we finally made it to the beach, Bret was in heaven. We jumped waves and I taught him to stand still, as the tide went back in, and let the sand slide right underneath him. He thought it tickled. Heath "taught" him how to skim board, but he didn't care much for it. He liked it better when him and his dad would run into the waves! We also collected shells!
That water was cold! But Bret didn't care! He was shivering and his lips were trembling and he still wanted to go in!
Once we convinced him to stay by us and play in the sand, he loved it. But the little stinker would crawl backwards and totally think he was being sneaky. Once he was a few feet away from us, he would stand up and book it to the water! It was hilarious.
Mia was also in heaven. She would laugh or giggle randomly and squeal and just bounce her feet up and down in pure delight. That girl was having the time of her life!! She discovered the sand and loved playing with it!
For the two plus hours we were there, she never put the sand in her mouth. Until... I turned around to give Bret the selfie stick to take pictures before we left, and boom! She put it in her mouth! She threw up immediately and I was trying to get all the sand out before she threw up more. We made it through that and took our pictures and left.
We walked on the trail that goes right along the beach and just talked. Bret was throwing a tantrum, but I didn't even care. I was at the beach and no tantrum was going to ruin my mood. He eventually stopped and enjoyed the ride as well.
Later on that night, we walked around downtown and went to Sea Port Village. There was a shop with cute little wooden toys! I was able to get some stocking stuffers for the kids. There was live music and Bret loved running around and the panda glow- stick we got him.
Saturday
We went to the temple first. We thought there would be a visitor's center, but they don't have one. Flash needed to let some energy out and so he ran around the grounds as we walked. Probably NOT the most reverent thing ever... But he needed it?
We then headed out to Old Town San Diego. I felt like I was in Mexico and I was in my own heaven. There was a little market with people selling handmade stuff and Mexican candy, decorations, clothes. It was beautiful. There were ladies selling churros and tortillas they were making right in front of you!!
Up a hill, is the Mormon Battalion exhibition. We thoroughly enjoyed it and at the end Bret got to mine for some gold! I think that was his favorite part.
Then, we had dinner...Best. Dinner. Ever!! The corn tortillas were to die for! The meat was all delicious and the rice wasn't crunchy! I met a really nice lady that have us a discount.
It was getting really windy so, we headed back to the car. We wanted to go back to the temple to see the lights. But it was getting chilly and the kids needed some jackets. We were at the perfect place to get some! A vendor was selling these,
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So, to the temple we went! But it started to pour!! Bret was so mad because we got there and took him out, then had to put him back in the car it was raining like it was monsoon season or something.
After 20 minutes, the rain let up. We got to go back and walk around. I love the peace that's felt on temple grounds. The nativity is life-size. I just imagined the burden and gratitude Mary must have felt as she was called to be the mother of Jesus. My heart was full of gratitude for her and for Joseph for staying with her. Then, as I told Bret, "Look, this is Jesus. He is just a baby here, but he died for you and me so we could be happy in this life and the next." Tears weld up in my eyes.
How did Mary really feel as the mother of our Savior? Did she feel inadequate as I sometimes do with my own children? How can I become a better mother? He came into the world as a baby... How can I be more grateful for the sacrifice He made for me?
I have been carried by Him so many times. Especially through the hard moments in motherhood and with Mia's diagnosis. I know He lives. He is our Savior.
Bret turned into the Flash again and ran away. He kept playing with the selfie stick and counting to three pretending he took pictures of himself. I wondered if anything I said to him stuck. I hope he can learn who his Savior is. I hope he can turn to him when things get hard. And I hope I can have the spiritual strength as the years go by to teach him and Mia about Heavenly Father and Jesus Christ.
Great trip over all. The way back wasn't as bad as the ride there. We woke up at 2am and got home at 4pm. Three days of some very needed family quality time. Now back to the hustle and bustle of life and hospital visits and therapies! So grateful for my little family!
Once we convinced him to stay by us and play in the sand, he loved it. But the little stinker would crawl backwards and totally think he was being sneaky. Once he was a few feet away from us, he would stand up and book it to the water! It was hilarious.
Mia was also in heaven. She would laugh or giggle randomly and squeal and just bounce her feet up and down in pure delight. That girl was having the time of her life!! She discovered the sand and loved playing with it!
For the two plus hours we were there, she never put the sand in her mouth. Until... I turned around to give Bret the selfie stick to take pictures before we left, and boom! She put it in her mouth! She threw up immediately and I was trying to get all the sand out before she threw up more. We made it through that and took our pictures and left.
We walked on the trail that goes right along the beach and just talked. Bret was throwing a tantrum, but I didn't even care. I was at the beach and no tantrum was going to ruin my mood. He eventually stopped and enjoyed the ride as well.
Later on that night, we walked around downtown and went to Sea Port Village. There was a shop with cute little wooden toys! I was able to get some stocking stuffers for the kids. There was live music and Bret loved running around and the panda glow- stick we got him.
Saturday
We went to the temple first. We thought there would be a visitor's center, but they don't have one. Flash needed to let some energy out and so he ran around the grounds as we walked. Probably NOT the most reverent thing ever... But he needed it?
We then headed out to Old Town San Diego. I felt like I was in Mexico and I was in my own heaven. There was a little market with people selling handmade stuff and Mexican candy, decorations, clothes. It was beautiful. There were ladies selling churros and tortillas they were making right in front of you!!
Enjoying a delicious Mexican fruit cup |
It was getting really windy so, we headed back to the car. We wanted to go back to the temple to see the lights. But it was getting chilly and the kids needed some jackets. We were at the perfect place to get some! A vendor was selling these,
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How Bret feels about me making goofy faces to make them smile |
----
So, to the temple we went! But it started to pour!! Bret was so mad because we got there and took him out, then had to put him back in the car it was raining like it was monsoon season or something.
After 20 minutes, the rain let up. We got to go back and walk around. I love the peace that's felt on temple grounds. The nativity is life-size. I just imagined the burden and gratitude Mary must have felt as she was called to be the mother of Jesus. My heart was full of gratitude for her and for Joseph for staying with her. Then, as I told Bret, "Look, this is Jesus. He is just a baby here, but he died for you and me so we could be happy in this life and the next." Tears weld up in my eyes.
How did Mary really feel as the mother of our Savior? Did she feel inadequate as I sometimes do with my own children? How can I become a better mother? He came into the world as a baby... How can I be more grateful for the sacrifice He made for me?
I have been carried by Him so many times. Especially through the hard moments in motherhood and with Mia's diagnosis. I know He lives. He is our Savior.
Bret turned into the Flash again and ran away. He kept playing with the selfie stick and counting to three pretending he took pictures of himself. I wondered if anything I said to him stuck. I hope he can learn who his Savior is. I hope he can turn to him when things get hard. And I hope I can have the spiritual strength as the years go by to teach him and Mia about Heavenly Father and Jesus Christ.
Great trip over all. The way back wasn't as bad as the ride there. We woke up at 2am and got home at 4pm. Three days of some very needed family quality time. Now back to the hustle and bustle of life and hospital visits and therapies! So grateful for my little family!
Wednesday, November 16, 2016
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!!!!
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.
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.
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!!!!
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My sweet girl slouching because she was bored. She only smiled because I smiled at her. I love her smile! |
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Bret and I are behind this wall. The Speech Therapist and Nurse are in there with 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.
Tuesday, November 8, 2016
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.
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.
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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!!
Tuesday, October 25, 2016
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)
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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!
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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.
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.
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Normal Brain (I got this from the Internet by the way) |
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Mia's last MRI scan |
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!
Wednesday, October 12, 2016
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.
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!
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.
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!
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Here's my friend Anai pulling the wagon and wearing her baby Sophie. Mia is in the back there somewhere in the stroller! |
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Tiny hands. Tiny pumpkins. Perfect! |
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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!
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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. |
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!
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