Easter Goodies

I cannot believe I haven't blogged here since March 6th!

Not that I have nothing to say. Not at all!

Actually, it's been the opposite! There has been a little of this and a little of that happening but the biggest "happening" has been moving! We moved! Only five minutes away. Not even. But, somehow, it felt like we were moving to another state!

I started singing, "This is the move that never ends...!"

But, we're finally here and we've been here for a week now. It's a little more room to spread out for us and we're starting to make this our home.

Christian is doing really well. He's received some new equipment and toys but I'm saving that for another post.

Today I'd like to visit Easter!

We love Easter here. And I love putting together "baskets" for the kids. Christian's is always more of a challenge because I have to get really creative and find things that are fitting for him. Also, I don't know if you remember this about me but I don't like getting traditional baskets for Easter for the kids. My mom always tried to get something fun and functional so I try to do the same. Baskets just sit in the closet forever.

So this was what Christian got from the...ahem... Easter bunny!

So what was in the basket?

1. His "basket" was a sun hat with froggies on it. Totally dorky but so cute and keeps his pasty little head from burning. [Target Lawn and Garden Area]

2. Angry Birds toothbrush (This is kind of a tradition - new toothbrush for Easter. Appropriate?) [Walmart Toothbrush Area]

3. Silly Putty. Yes. THE Silly Putty. [Target Dollar Spot]

4. Wooden toy fire truck that's easily "grabbable." [Target Dollar Spot]

5. Bubbles! We've been working on pointer finger extension and we used pointer to pop bubbles today. [Target Outdoor Play Section]

6. A Hulk light up vibratey thing. [Walmart Toys Section]

7. Play dough. [Target Dollar Spot]

8. A Chocolate Bunny! [Walmart Easter Section]

This isn't a traditional chocolate bunny. It's a chocolate bunny for Christian! This means it smells like chocolate but it's soft and cuddly. Just perfect for Christian. And I got it at Walmart if you're interested.

Here's Christian with his froggy sun hat playing with his Easter toys. See how it's easy for him to grip and keep ahold of the toy truck?

"I'm tired but it's all mine!"

It was a great Easter and Christian even got a little taste of cream cheese frosting from the carrot cake. As I mentioned above, we worked on popping bubbles with his right pointer finger and he's been consistent enough that I might be able to get it on video!

I hope everyone had a wonderful Easter!

Blendy-Blends: Just do it!

Hello, everyone! What are you eating today?

I can tell you what Christian IS NOT eating.

Cans of formula.

And he's thriving! He's doing great!

I remember his former GI doctor trying to explain why formula was "perfect nutrition in a can."

My first response to that would be if it's so perfect why don't you feed it to your kids? In fact, if it's so awesome, why aren't you eating it for breakfast, lunch, and dinner?

I've never been able to understand why just because my son's brain is injured that means he doesn't need the same nutrients or the same foods as a typical four year old boy. He doesn't need a perfect food pyramid. He needs what I make him. And I aim to make him what I would make him if he could ask me for a snack himself.

Okay, I'm kind of rambling.

What I really want to do is update everyone about the fascinating world of the blended diet! Or what I affectionately refer to as blendy-blends.

It's actually not that exciting, really. But I get a lot of questions about Christian's blends and what I use and how I started so I thought I'd update.

For those thinking about a blended diet, just like anything in life, the hardest part is STARTING!

My Rules of Thumb:

1) Feed your g-tube fed child what you would feed them if they were a typical mouth eater. For example, I would feed Christian chocolate chip pancakes if that's what we have for breakfast. Which has been the case for the last three Sundays. So that gets tossed in the blender. I would feed him cheerios and almond milk. So that goes in the blender. Scrambled eggs? That goes in the blender. You get the idea.

2) If you are having trouble understanding calories, divide it out. If your kid is on 1000 calories a day, choose 10 things that are 100 calories each. Avocados are about 200-250 calories each. Well, that just means you now only have to choose 8 things. Keep it simple.

3) Don't be afraid! Would you be afraid to feed a typical child? What's the difference? Use your Momma or Daddy or Gramma or Grampa brain and just keep repeating to yourself - I'm feeding my child. What would he want to eat? Apple juice? Okay! Blueberries? Okay!

Those are my start out rules. Easy, peazy, right?

I know there is adjustment. I know it can be difficult finding the right foods, combinations, calories, volume, mode of feeding, pump, bolus, and everything else! I know! It's taken work for us, too. But it's totally and completely worth it.

And just for good measure, here's a typical menu for Christian:

1 cup of vanilla almond milk - 90
1 cup of 100% apple juice - 110
1 banana - 105
1 avocado - 200
1 Dannon Greek Yogurt - 120
1 Nutrigrain Bar - 120
1 cup sweetened cinnamon apple sauce - 200
1 cup of frozen blueberries - 90
2 scrambled eggs - 140
2 tablespoons of butter - 200
1/4 cup of MCT oil - 300

Total..........1675 calories.
This amount is for about a day and a half.

Before:

See? Seasonal fruit. Yes, that is a Cutie. And those are grapes and frozen blueberries.

After:

Before:

I didn't take an after because the meat and veggie blends don't look so appetizing. And besides, all that kale looks so pretty!

*Add seasonal fruit, cheerios, other cereals, orange juice, or whatever you had for breakfast!
*I add butter and MCT oil for added calories and low volume. Experiment with different oils if calories are an issue.
*For constipation add pumpkin, more water, dried fruit like raisins and apricots, prune and pear juice.

A meat and veggie blend would include tuna, chicken, pasta or rice, usually something we had for dinner, carrots, spinach or kale, apple juice, tomatoes, almond milk, butter, olive and MCT oil. Oh, and mac and cheese. Because he's four. And he would love that.

On expense:

In my opinion, there isn't a terribly significant increase in our grocery bill. Everything he eats can be found in our pantry or fridge and everything he eats, with the exception of kale, we eat, too. So we're not buying anything really "extra." And, again, it's money I would spend if he were to eat by mouth.

All of this may seem overwhelming but it's actually pretty awesome. I am making my son's food. He eats what we do. It seemed so confusing at first and now it makes perfect sense.

And best of all...no vomiting! I'm now 100% sure his vomiting is caused by allergies. He gets seasonal allergies and when more secretions and/or phlegm gets down into his throat it kicks off a gag reflex. But if I hadn't experimented with whole foods I don't think I would have ever figured it out! We'd just be on the acide reflux medication merry-go-round.

I can't say enough about the blended diet. It has been one of the biggest game changers for Christian and for those who want to transition to a blended diet and have questions, hit me up!

I'm happy to spread the blendy-blend love!

Christian Talks and Snowball Therapy

This post is brought to you from SNOWY ARIZONA!!!

(More on that later.)

I've been talking about how Christian has found his voice over the last six or seven months.

But first, let's review some history.

After the accident, everything went silent. Christian had his trache so at the time even if he was trying to make a sound, we wouldn't have heard it.

After getting his speaking valve he very slowly started making noises. Those noises eventually turned into crying and whining. At the time, we were grateful because he could tell us if he was sad or hurt. And he told us...and told us...and told us.

After a while I couldn't help but wonder if the only communication and vocalization Christian could make would be crying or of discontent. I wondered where the other sounds were - happy, interested, communicative, anything else.

Then, seemingly out of the blue, Christian started making noises. His whining calmed to soft moans and then turned into something else. What I refer to as his "talking."

Speech therapy has always been challenging because I'm not going too far in saying that most speech therapists don't really know what to do with Christian.

A while back I was discussing with Christian's OT about his communication. He has always done this eye roll thing that we've always brushed off as seizures or spasms. However, I started noticing that when I talked to him and asked him questions he would look up as if he was responding with an answer. Then his OT was working with him and mentioned the same thing I was thinking - Maybe that's his answer for YES.

So we've been testing it out and he's been really consistent with it. As I've mentioned, he has a new speech therapist that is so awesome. She's like the brain injured kid whisperer. And as she was asking him questions, he was responding with his YES.

So I got some of his talking on video along with his YES.

Listen closely because after I took the video I didn't realize you couldn't hear him very well.

And watch is eyes when I ask him a question.

We did always think they were seizures and sometimes his seizures look a lot like this. But his smiles started from seizures and turned into responsive smiles. So we're going with it.

I'm just amazed at how much is still possible with him. He is still learning and still growing. I can see him using his abilities and building on them in his way. I'm learning again and again to get rid of how I think things should be done and follow Christian in the direction he wants to go.

Oh, yeah, and the snow...

Christian had snowball therapy!

It was a little too cold for Christian outside so I brought him a snowball. He wanted to touch it but then pulled away, then went for it again, and then pulled away. He also watched the snow fall from the sliding glass door and talked away all afternoon.

Sister enjoyed it, too.

A Letter to Christian on Valentine's Day

To my Christian on Valentine's Day,

I was sitting here putting your classroom Valentines together and taping heart shaped lollipops to your wheelchair heart cards and I was thinking to myself - Mommy sure knows a lot about hearts.

The first time I heard your heartbeat, you were just a tiny baby in my belly. Hearing the woosh-woosh of a baby's first heart sounds is one of the best things I have ever experienced in my whole life. It's the beginning of life. It was the reassurance that you were in there, growing, and it was right then that I fell in love with you.

When you were born your heart rate dropped as you were coming into the world. You arrived quietly, unconscious with your cord wrapped around your neck two or three times, I forget. And all I could hear was my own heartbeat while listening for your sign of life. Finally, you whimpered. And you were ours.

And then there was the day. The day of the accident. When you were lying on the tile floor, not a breath left in you except for the gasp before your heart stopped. Mommy's heart stopped, too. There were panicked whispers in that room of no heartbeat and when we went to go be with you for what would have been your last moments your heart started to beat again. Mommy's did, too.

In those early days after the accident when you couldn't cry, you couldn't make a facial expression or even a single sound, your heartbeat was the only thing that talked to us. It let us know when you were upset, hurt, calm or agitated. Your heartbeat always told us.

I've studied and analyzed your heartbeat as you were hooked up to a monitor. I've been worried when your heart was beating too fast because you were sick or too slow because you were sleeping so peacefully.

Even though we rarely use a monitor anymore, when it's late at night and you're sleeping, I sneak into your room to check on you. You are off dreaming about running and playing, visiting your friends, I'm sure. You're so calm and still that sometimes I put my hand over your chest so I can feel your heartbeat and make sure you're okay.

And when I hold you close, chest to chest, I know you can feel Mommy's heart beat against yours, Baby Boy.

Expecting to "fix" you broke my heart a thousand times over. Accepting you healed it back together. Mommy's heart will always, always be a little broken for everything that wasn't, but Mommy's heart is so full for all that is.

My strong boy, I have felt sorrow and despair in my heart as deep as the ocean, but you have also given my heart joy and happiness to the moon and back.

The first time you smiled again, my heart couldn't believe it. And now every time you try to smile, my heart flutters.

I spun you around in circles in your chair the other day and you made happy noises while smiling a little and even your big brother, Gabe, started laughing watching you. Mommy's heart grew three sizes that day.

So, you see? Mommy knows a lot about hearts! And this Valentine's Day, along with Daddy, Gabe, and Lola, know that my heart is yours and I love you forever.

Happy Valentine's Day, Baby!

Love,

Mommy



Back to his old self.

In case you are wondering...

Christian is doing great!

{Insert huge sigh of relief.}

I am so happy he is (almost) back to himself again.

At least the pain isn't bad anymore. He only gets a little sensitive when I bend his knees. So we'll have to work on that a little more. But his scars are almost completely healed over! Oh, and he's not on pain meds anymore.

As if my little dude hadn't been through enough, as soon as he started feeling better he caught his sister's cold. Luckily, it wasn't terrible. It was just your average stuffy nose, cough, low grade fever, kid cold. After missing all that post surgery school, he had to be out again! I think he was so happy to get back to school yesterday. His teacher even said he was doing a lot better and seemed happy to be back. Of course he does! He's been stuck inside the past six weeks!

Anyway, when things go south for a little while it makes me so grateful for little things we take for granted like sleep. One of the best things about Christian feeling better is that he is pretty much sleeping through the night again. Thank you, Baby Jesus!

He was waking up several times a night, even with heavy duty pain meds. He would wake up moaning and crying. It was so difficult to get him comfortable. And I totally believe that six hours of solid sleep feels way better than eight hours of broken up sleep. We're back to solid sleep again!

Christian is also back to "talking" again. Not as much as he was immediately before the surgery but he's getting there. Yesterday I put him in his special tomato chair and spun him around in the kitchen over and over again. He started giving me his half smile and making happy sounds and it was almost like he was actually laughing. Gabe even saw it and started laughing himself! We're getting there, buddy!

We're also started evaluation paperwork for Christian's entry into kindergarten. What the what?! How are we talking about kindergarten?

For now we're getting ready for Valentine's Day and Christian will be sporting his red and special Valentines for all of his buddies!

Tonight, I'm just thankful for my peacefully sleeping boy and my old Christian back.

The Not So Great Communication Evaluation

What a week!

Christian started back at school this week but not without hiccups.

In fact, out of the four days a week that he goes to school, he only attended twice. And I got calls from the school both days.

The first call was about him being upset and that I needed a release for him to go back to school. So we skipped Tuesday and Wednesday when he finally did go back to school, he still had some irritability during school. We are definitely not back to normal yet, almost three weeks later.

Oh, why didn't Christian go to school yesterday? Well, let's go there.

Yesterday was Christian's big augmentative communication evaluation. People from out of town were going to come to visit and we've waited over six months to do have this done.

So there are two days available, Wednesday and Thursday. Our OT who has known Christian the longest, knows him inside and out, needed to be at the eval, I thought. It was essential as far as I was concerned. But she had a conference on Thursday so when do you think the evaluators wanted to do the appointment? THURSDAY!!!

When they called to confirm I asked three things:

1) Can we change the time? Christian has school that day and he hasn't gone much this week. I'd like him to go.

2) Can we reschedule? I really don't think he's at his best right now. And I'd like him to be feeling 100% to get the best evaluation. I mean, he had surgery three weeks ago!

3) Can we change the day? My OT can't come that day. Can we please take a Wednesday slot?

The answers were No. No. And No.

If we rescheduled we couldn't be evaluated until May. So we went ahead with the evaluation.

So, yesterday, the very nice PT and OT from Flagstaff came for the evaluation.

Two of their eye gaze devices are malfunctioning. It takes at least an hour to set everything up and to try and work out glitches. They finally offer a third device that's an older model. So we start working with it.

I notice Christian isn't activating anything. I also notice he is looking at things on the screen. Why isn't he activating anything? So because I'm behind him and the eye gaze talker can read anybody's eyes, I start looking at the screen to activate it.

It's not working for me either.

So I tell the OT I don't think it's working. She tests it with her eyes, drops her head, and says she's sorry. It's not working either.

By that time, I was tired. Christian was tired. It was not what I thought this evaluation would look like. Christian did manage to muster up the energy to activate a few things once they got one of the eye gaze devices to work. But I just think about him working so hard to try and activate the screen and...nothing. How frustrating! Why would he want to participate after that?

The verdict was that right now I just want some choice buttons so we can work on those again. The other ones we used were on loan and we had to give them back. I want more buttons for him so we can work with those again. Then he'll be evaluated again in six months. For some reason I thought six month meant May. Nope. That's three months. Six months away is a long time when we've already had to wait! Am I being unreasonable here? It was their fault their stuff wasn't working, right? So the evaluation should be done ASAP. I don't want to be a crazy, hell raising parent, but, seriously? After you wouldn't let me simply reschedule to a reasonable date?

The silver lining here is that today we had an appointment with a fabulous new speech therapist. Christian showed her all of his skills and she was really excited about the things he could do. He reached for toys and activated them, he vocalized, and she was impressed and excited! It was like a big, huge, deep breath coming from that appointment. Speech therapy can be hard with Christian because a lot of speech therapists just don't know what to do with him. But she was excited to dive in and she said he had so many great skills to build on. She also works closely with his two other OTs so it's all around awesome!

I'm just happy Christian was in the mood to be social today and show her that he can communicate, he can make choices, and he has something to say. Of course, he does! He's my kid!

Ten Days Out From Surgery

We are ten days out from surgery and things are getting better...slowly.

I failed to understand how painful this would be. I guess once I heard the words "out" and "patient" something in my head equated it to "easy."

That, paired with the experience we had with his VNS implant surgery left me feeling over confident and under prepared for how Christian might do.

His VNS surgery was a breeze. We had one afternoon of crying. Then he bounced back as if nothing had ever happened.

But this was different. We needed heavier pain killers and for longer.

Christian stayed out of school for the entire week and we went ahead and kept him out this week. He's had good days but there has been a lot of whining. And it's off and on. He'll have a really good day followed by a really hard night. And vice verse.

We had his follow up appointment today, which I was looking forward to because we ran out of the medication that would keep him comfortable. And we needed more!

Christian cried the whole 45 minute drive there and back. Luckily, he could show the doctor just how much he needed that prescription filled and we were on our way.

The thing is that when we discussed the surgery prior to going through with it, the doctor said it was a simple surgery. He said that turn around time was three or four days. He said people are usually weight baring right away. No big deal.

Today I told him Christian was having a hard time and he told me, "Yeah, it's a really painful surgery. It takes like two or three weeks for the pain to completely go away."

Okay. Well, that seems different than what we discussed before. What's done is done, I guess, but at least I could have better prepared myself and better prepared Christian.

I mean it's not horrible. He'll just wake up in the middle of the night whining so it's hard for him to get a good night's sleep. He also gets really upset when he wakes up for some reason. Maybe he's stiff? Crying fits are back again. We had come so far! But now they're back and I don't know if it's pain related or just that he is having a hard time calming himself down. He's also still very sensitive to positions and where his legs are at all times. I just want him to be okay again.

So it's ibuprofen around the clock with shots of the harder stuff (Lortab) when he's extra irritable.

All of this surgery stuff really makes me wonder - Isn't there a better way? There has to be a better way. Because I really don't want him to go through another surgery ever again.