CHD Awareness Week

This week is Congenital Heart Defect awareness week. And while we know what caused Princess' heart condition, you can't help but bond with other Heart Families when you are seeing a pediatric cardiologist. As it stands right now, I personally know 2 Heart Mammas with Heart Babies. I have come to know others online through various other ways: blogs, support groups, etc. CHDs affect 1 in 100 children! And while surgery can repair a broken heart in a child, it isn't a cure. And while some children require heart transplants, it means a lifetime of medication and doctors visits for them.

So what can you do? Well, there are simple things:

• DONATE BLOOD: This is simple and easy to do. Anyone healthy over 18 and 110lbs can donate blood. It doesn't take long and they give you free cookies afterward! Many children with CHDs require blood transfusions. Princess almost did.

• ORGAN DONATION: While this may be a simple box to check on your driver's license, please don't take it lightly. Talk to your family about it. Let them know you are an organ donor. And if, by some chance, your child earns their angel wings at some point and their organs are healthy, please donate them. There are children who are waiting for a donation too. Organ donors can save many lives.

• PULSE OX MONITORING: This is SO SIMPLE. If you or someone you know is pregnant or just had a baby, tell them to ask for pulse ox monitoring. It's a simple, non-invasive test. Both my children were monitored after their birth. Princess, obviously, but Little Man was as well. He was born with the cord wrapped around his neck, so the hospital thought it was important to put him on the monitor. It can be the first indicator of a CHD.

• ECHOCARDIOGRAMS FOR SPORTS PHYSICALS: This one is near and dear to my heart. When Princess was first diagnosed with cardiomyopathy, I Googled it. And what came up were young people having heart attacks and dying on the sports fields. This is something that is easily preventable. Just ask that your child have an echocardiogram (ECG or heart echo) as part of their sports physicals. It is another non-invasive test. It's an ultrasound of your heart. One of my Heart Mamma friends just found out that her oldest has a CHD because the youngest was at his cardiology appointment and they were curious. It wasn't required as part of his sports physical and he's a wrestler.

• AWARENESS: This is why I'm doing this post. Whereas Princess will, hopefully, no longer have her left ventricular hypertrophy because it will be such a small part of her heart that is damaged, there are kids out there who will always have a heart defect. They will always have the scars of their heart defect. They will always have to take medication, see specialists, have tests and procedures done. CHDs affect 1 in 100 children.

So, while Princess doesn't have a true CHD, it was caused by her PHA2, we still are aware that 1 in 100 babies are born with congenital heart defects and many of those are preemies. Princess was a preemie and she very well could have had a hole in her heart. There were many babies in the NICU that did. So please hug your children tight today and make sure other parents out there know the simple things they can do to help their children. And while surgery will fix many CHDs, it isn't a cure. More research is needed to find out if there will be a cure. Lots of love today on Heart Day.

Learning What to Eat

So now that Princess is eating food as well as her formula, things have gotten a little difficult. Even before we went back to the nephrologist after we got the diagnosis from the endocrinologist, I came to the realization that Princess probably shouldn't have any high potassium foods. I mean, yes, she is on medication to help with her potassium levels, but we probably shouldn't be just giving her foods that excessively high in potassium. I mean, she is still growing and the medication level is adjusted about every couple of months for that reason. She is also have labs done to check her potassium about every 2-3 months now. I know that also factors into her dosage of the medication. I just worry that if she isn't on the correct dosage and I give her something high in potassium, we may end up in the hospital.

So we met with the nutritionist after we met with the nephrologist in November. At that point, I was already doing what she would recommend: read labels and watch portion sizes. Yeah, I've become really good at reading labels. Unfortunately, potassium isn't usually listed on the label. Thankfully, my mom found a website that will give full nutritional information on almost everything. So that's our go to if we have questions about what Princess can and cannot have. I started making my own baby food at that point too. I asked WIC to quit giving me the baby food vouchers because there's only like 6 different baby food fruits and veggies that Princess can have. She was able to have more food if I just took what she could have and pureed it in the food processor.

So, as a result of Princess's condition, we have decided to give up high potassium foods as well. I say "we" because I don't want Princess to feel that she is different. I know, eventually, I'm going to have to tell her when she's older. I mean, she's going to ask why she has to keep taking medication, why she has to go doctors all the time, why she has to continually get labs done, etc. So, yeah, I'm not looking forward to that conversation, but it will come. Well, initially, I thought we'd just be giving up bananas. But then I looked up "low potassium diet" online. (This was before we met with the nephrologist and nutritionist.) Oh was I surprised! Here's the short list:

• Bananas
• Tomatoes and tomato based products (ketchup, pasta sauce, salsa, etc)
• Potatoes and potato based products (French fries, mashed potatoes, etc)
• Nuts (almonds, walnuts, pistachios, etc)
• Beans
• Melons (except watermelon)
• Kiwi
• Avocado
• Fresh Pears
• Fresh Peaches
• Oranges and orange juice
• Raisins
• Raw Carrots
• Sweet Potatoes
• Winter Squash
• Chocolate
• Yogurt
• Milk

Well, we go back to the nephrologist next week and I am definitely asking about the milk. I mean, Princess is almost a year old. She'll be coming off the formula soon. That's typically when you transition to whole milk. But milk is considered high in potassium. So I don't know what we're going to do. Are we going to limit her milk intake? Are we going to increase her medication? That's for the doc to decide.

I know I just shared this photo the other day, but I wanted to share it here too. I just kind of works!

This of course is going to follow us the rest of her life. In fact, in talking with J, our developmental therapist, he says that though we may not need PT/OT/Speech past 3 years of age, it would probably be a good idea to keep her on an IEP due to the medical issues. I don't know what that will look like. We've still got a year and a half before we transition from IFSP to IEP, so we'll have to see. But if it will make talking to the schools about her disorder and what she can and cannot have easier, I'm all for it!

So, if I ever get to go out with people without Princess or Little Man, don't be surprised if I order a side of mashed potatoes or sliced tomatoes! It's because we are trying our best to keep Princess healthy.

Schedules and Routines

Little Man is now 4 years old. He is crazy smart. He is really into numbers and time.

Since his dad and I are going through the Big Crazy Mess (i.e. Divorce), he has had some issues adjusting to things. Apparently, the house rules I hung a couple months before we left are still up at the house. I don't know how well Little Man's dad follows them. But I recreated the rule chart for our house.

I got most of these rules, in some way, from the Duggar Family's House Guidelines. Granted, they have 22 different guidelines and we only have 10, I think ours work for our family. We even adapted some of these for our Sunday School class! (You can see them here along with our other bulletin boards.) For Little Man, if he breaks one of the rules, he loses a toy. His favorite toys right now are Legos. So you can imagine that this makes the most impact if he loses his Legos.

Because Little Man is so fascinated with time right now, his schedule goes beyond a typical picture schedule like you might use with a typical 4 year old. Little Man can read a lot of words and has a very good memory. And since kids need a schedule and routine, this is Little Man's schedule:

We've also started doing chores. I've been really bad about remembering to do things like a sticker chart or something like that. So I went looking. I found Kid's Chore Chart Cards at Confessions of a Homeschooler. I liked them, but I didn't have a pocket chart and I only have one kid. Thankfully at the bottom of that post, she linked to Shining Our Light's Chore Chart. I liked what she did. The only thing I didn't like was the prize box. Yes, I'm one of those mom's who is against an allowance. Well, not really. But in our house, a chore is something you do to help others. (It goes with #9 on our rules.)

Well, I had set it up very similar to Shining Our Light's except I didn't have the "Little Man needs ___ tickets today." Initially, I had them all being "chores" but just recently, we realized that some of them are more "routine" and should be done daily and not "chores."

So we have the following:

This is Little Man's Routine. They are things he needs to do EVERY DAY. He has 4 things in the morning and 3 things in the afternoon/evening. And even though he is 4 and working on getting rid of his nap, he still needs one. If he doesn't have one, he gets CRANKY in the evening! The "Clean Play Room" means he has to pick up ALL of his TOYS wherever they are, his room, the living room, the playroom. When he does his routine he gets tickets:

That last spot is for his "Best Bee-havior." If he is on his best behavior all day and doesn't back talk, fuss, argue, and basically follows all of the rules, then he gets this last card. If he gets all of his tickets, he gets a sticker:

When he gets all his stickers he can have tablet time.

Now, he does have other chores. Remember when I said earlier that if he misbehaves he gets a toy taken away? Well, he has the chance to "earn" those toys back by doing chores. Right now, he only has 3. We are going to eventually do 4. When we have no more toys that he has lost, he will just have to do them. Maybe there will be an allowance or a reward or something. I don't know yet. So this is what we have to track those chores:

He has things like:

Empty the Dishwasher (the things he can: silverware, cups, etc)

Set Table (put the silverware out, butter, things he can)

Clear Table (what he can)

Put Dirty Clothes in Laundry (this is actually help put them in the washer)

Fold Laundry

Put Laundry Away 

Take Trash Out (help with bathroom trash cans)

Clean Bathrooms (he has to help wipe down the surfaces)

Dust Living Room (this could be his room, play room, etc)

So far this system has been working. I know it will need tweaking as he gets older, but it's a start for right now.

Milestone Monday: Teeth and Spaghetti

So the past month has been kind of rough. After we had our crisis of the stomach flu, Princess cut her first tooth! Actually, I probably should have known she wasn't feeling well because I noticed the tooth had finally popped through the day she got sick and she wasn't fussing about it. But then, right after that first bottom tooth, the one beside it popped through too! So it was like 2 to 3 weeks STRAIGHT of teething pain! And because of her PHA2 and the medication she's on she can ONLY have Tylenol. Glad I got an updated dosage at the pediatrician's when we went in at the beginning of January for her Synagis shot.

One of the other things that may not seem like a milestone to everyone else, but is kind of a big deal to me, is that Princess got to have spaghetti! (I'm working on a post about her dietary restrictions.) One of the things she can't have a lot of is tomatoes. This includes things like ketchup and spaghetti sauce. Well, we managed to find ONE spaghetti sauce that is lower in potassium. And the way we mix it all in with spaghetti noodles, she really doesn't get THAT MUCH sauce. And now that she is really getting good at feeding herself, she got to have spaghetti with us for the first time! Like any other child, she wore most of it. Fortunately, we took her clothes off and let her eat it that way. Then she went STRAIGHT into the bathtub!

Princess is sitting up well by herself. Feeding herself well and we are working on crawling. She may be 10 months old, but we're not really close to the point of crawling yet. Her therapist comes out once a week, and we play. She loves the toys he brings (as does Little Man) and we are trying to find new ways to get her on all fours without her screaming at us. She is generally a happy little girl, but she does have a temper. She's curious and into everything. She sometimes gets frustrated because I think her brain tells her that she needs to get to something, but she just can't figure out how to get there. She'll figure it out soon enough!

WOW! A Month?

How did  a whole month go by and I didn't update this blog? Wow!

A lot has happened in the past month. I'm going to do a Milestone Monday tomorrow and some other updates this week, hopefully, as well.

Princess had her big developmental clinic appointment last week. I'll be doing a post on that.

She sees the nephrologist next week. There will undoubtedly be a post on that.

I've been having issues getting her formula. Yeah, probably a rant post on that when it ever gets accomplished.

Little Man has been having infrequent schooling due to some of Princess's appointments, but we get to have a full on week this week! So there will be a school update.

There will also be an update about our routines. I have to go in and redo our calendar board as it's kind of not liking the constant weather change of our sun room. Eh. I guess it was to be expected!

Oh, and we ordered me a new bed! So yeah, in a couple weeks, after we paint my room, there will be a post on that. And we are planning on going to the coast for the three day holiday weekend. So there will be a post on that! As you can see, I've got a lot coming up, I've just got to sit down and do it! Okay, off to upload and update pictures for the blog!