See Christian and Lola's ISR video!

Thursday, January 24, 2013

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.

Wednesday, January 16, 2013

Surgery Update: How's Christian?

******SURGERY UPDATE*******

I've had a lot of people ask me about how Christian is doing and I'm so appreciative but I thought I'd give a summary about what went down yesterday. Nothing too dramatic, but I did learn some things that I can apply to future surgeries.

Of course, it takes longer to get into surgery and out of surgery to go home than the actual surgery. The actual surgery was only about forty-five minutes. It was very quick.

We brought Christian to the hospital in warm pajamas that he got for Christmas from his cousins. The pajamas are about four sizes too big but it worked great because it was easy to get them on and off.

We were taken to the pre-op room where we briefly spoke with the ortho doc and the anesthesiologist who was wearing a leather fanny pack.

Dude, you may know how to knock my kid out, but fanny pack? Really?

Anyway, we discussed pain meds and reactions. The fanny pack wearer said he would be giving Christian morphine. I wasn't entirely excited about that idea but I thought since they would actually be attaching something to his bone, it would probably be excessively painful. So I agreed to the morphine.

We all kissed him and I told him what was going to happen and that I would see him after he woke up. Before they wheeled him away Fanny Pack Wearer said, "I can tell you guys really care for him. That's great to see."

What the f?! Of course we care about him! We adore him and love him! He's our son! What an odd thing to say.

So they finished quickly and we spoke to the ortho doc who said everything went well but Christian's bones were really soft. No surprise there.

We were notified that he was already awake right away. But it took them a while to come get us. When we were finally taken to see him he was groggy but when he heard me talk to him he started to do his Christian "talk." So I thought he was doing great! But by the time we got back to the discharge/recovery room he was almost hysterical. The nurse told me he was crying when he woke up so he decided to top him off with some Demerol.

Christian was crying and crying and he would start to choke. He couldn't swallow or cough and his lungs seemed to literally fill with fluid. Every inhale and every exhale crackled. He cried and cried, and when it was time to swallow, there was this look of panic on his face like he didn't know what to do.

The discharge nurses were worried and asked about suction and if we regularly have to do that, which we don't. They didn't have anything ready for that so they were stumbling around trying to find suction equipment. The suctioning still didn't help. I asked if I could hold him. Yes, I asked because I didn't want to hurt him with his knees all wrapped up like a mummy. So I crawled into bed with him and held him. That helped him and he calmed a little bit.

We let some time go by. I know the nurse usually gets people discharged quickly but I wanted to give him time to settle down. I knew he would be fine. He just needed time. He was overmedicated and it completely shut down his swallowing and coughing. But he was aware of it! I'll never forget what his face looked like when he was trying to figure out what to do. He couldn't breath. He couldn't cough. So he just cried.

So some time passed and he was calming down in my arms. He finally gave us two big coughs, swallowed and completely cleared his lungs. I was so relieved! I knew he could do it. He just had to let that medicine settle out of his system a little. As soon as he cleared his lungs, he calmed and we could finally, safely take him home.

Last night and today he has gone in cycles. He'll be fine and then start crying and then go back to fine again. I have to be diligent with his pain meds so he stays comfortable. Last night he slept surprisingly well. I put the pulse ox on him just in case, due to the morphine, too much pain medication, and just everything. He did fine all night! In fact, he was setting off the alarm because he was satting at 100 for too long and the pulse ox is set to alarm because when people are on vents and oxygen, 100% could be toxic. That's what a nurse told me one time anyway.

Things I learned about future surgeries:

1. Research and discuss all pain and sedative meds AHEAD OF TIME. That way nobody can take it upon themselves to "top him off" with something we didn't discuss. If they would have come to get me first so I could be with him and see if he was crying out of pain or crying because he wants to be held (there is a difference and I KNOW the difference) we may have avoided all the dramatics that took place.

2. Prepare everyone with what Christian might need. Like suction!

3. Don't go to TMC. I was totally unimpressed by this hospital. We usually go to UMC and/or the Children's Hospital. It's like night and day. And UMC has a much better food court on top of having suction available.

Christian seems to be getting slowly better and he prefers to be on his tummy. It seems to be the most comfortable position. He also wasn't holding any food down initially so I had him on an apple juice and water combo drip over night and through the day just so he would stay hydrated with some calories. Today I made him a mild blend of apple juice, almond milk, avacado, banana, greek yogurt, and blueberries to get him started back on blends again and he has done great! Everything stayed down.

Here's to hoping we get another stellar night of rest for my little dude.

Thank you to everyone for your thoughts, prayers, and face book messages!

Sunday, January 13, 2013

Knee Surgery Tomorrow

It's surgery eve!

Nothing to be excited about, really.

But, yes, Christian has surgery tomorrow. It's that surgery I happily put off before Christmas. It's the surgery on his knees that I talked about here.

I guess I'm not really excited, but I am anxious to have it done and out of the way finally. And for some reason I'm not dreading it as much. I feel better about it and not as overly-nervous about going through with the procedure. He's in good health, we're all in good health (also, finally, after all of us BUT Christian got hit with a bad cold), so conditions are optimal for surgery.

I mean, of course, I'm a little worried. Who wouldn't be? They'll have to intubate him and he'll be under anesthesia. I'm just hoping he'll do as well as he did with his VNS surgery. That was a breeze! And so was recovery. I'm hoping for a repeat!

Otherwise, Christian has been really increasing his communication in more ways than one! He has been so vocal lately and I don't know where all this "talking" is coming from...four years later! Just goes to show you, progress is never done and new things can always happen. Even years down the road!

Now, let's talk about play dough. Remember the play dough from Christmas? Well, it has proven to be a a huge motivator for Christian. He loves it! And it's amazing to watch! He grabs at it, he tries to find it with his hands, he even did some raking with his PT, which is grabbing for the play dough, closing his hand around it and dragging it toward him. He also "talks" a lot while he's having play dough time. And will go on for like thirty minutes! He's done this at school for his team while playing with "clean mud," he's done it for his new OT, and he's done it for his PT. Just consistently talking and reaching when it comes to play dough.


And since we're on the subject of talking, the other night he was talking so much when I put him to bed, I had to go into his room and tell him:

"Christian. It's time for bed!"

I not so secretly love it.

So I'm only hoping there will be more of that, despite the surgery. The fear is always that with surgery or sickness all that progress will cease or take a break. But I'm a firm believer that if he's done it before, he'll do it again.

Please keep Christian in your thoughts and send up a little prayer for him that he is in and out without a hitch.

Love my little dude.
Monday, January 7, 2013

Get family photos done. Like, now.

This blog post can also be found a


What do you think about when you read those two words above?

I can tell you that, for me, images of toddler fits, sweaty moms, uncooperative kids, bored husbands, denim shirts, matchy-matchy, posed families, plastered smiles, snotty noses, and horrid backdrops all in an attempt to look happy to be taking photos as family are what I used to think about. Meanwhile, everyone really wants to punch everyone else, including the photographer, in the face.

I've partaken in a few family photo sessions in my time. To be completely honest it was not enjoyable. A lot of stress and scenarios like the above aforementioned situation with results that were disappointing.

However, in the last few years, portrait studios seem to have been traded in for a professional photographer. The professional family photos I've seen coming out of Facebookland are something to be envied. In fact, I appropriately call this envying of photos - get ready - Photo Envy.


I had major photo envy.

And after witnessing the magic that professional photographers are able to create, I started to regret not hiring a professional photographer for many of the most important events in my life.

The magic that's created in these still snap shops can never be recreated. I didn't want any altering of what I look like. I didn't want my children's eyes to be photo shopped beyond recognition. I just wanted photos of my family the way I see them - gorgeous, perfectly imperfect beings that rock my world every day and reach in to the depths of my soul. My heart beat on a page. That's all.

So how was I going to get that? And, a better was I going to sell the idea of a family photo session to my family photo session hating husband? And how was I going to convince him that not only would we have to attend and be the subject of this family photo session, but we also had to pay a good amount for it with no store coupons available?
Husband: "So what do you want for Christmas this year, Honey?"


Yeah, so this year all I wanted for Christmas was professional pictures. And that's what I got last Friday.


After spending a few weeks obsessing over coordinated outfits, colors, location, hair and makeup - all for me, of course - it was finally time.

I gave my husband and teenage son a lecture that went a little something like this. "Don't ruin this for me."

We arrived at the location and met with our fabulous photographer from Sobecki Photography after Facebook stalking her page for two years. We were all dressed up and the sun was to set in an hour. It was time.

There was no stress. There was no sweating. There was no arguing. There were no fake smiles. Everything was easy and effortless. In fact, we were so un-stressed that we decided we wanted to go to dinner because we still actually wanted to hang out with each other afterward.

And I think the whole experience may have converted my husband. Score!

So why are family photos important?
It's a snapshot in time that will never, ever happen again. Kids will grow up so fast. And you never know what tomorrow will bring. Capture now and have it forever. You never know what will change as life ebbs and flows. You never know what will be taken away or permanently gone.
But I can take them myself with my camera.

No, you can't. Not like this.
But I'm fat/I don't like my hair/my face is oily/I have big ears

Just do it. Don't wait to loose the extra twenty pounds. Don't wait because life can change so fast and you will always, always regret not capturing that moment.

But it's expensive.

The money held me back for a while, I admit. It is an investment. But, I'll tell you what, when we were finished and I saw the results, I thought I didn't pay nearly enough for the images I saw staring back at me. Not nearly. They're priceless. It was a steal, as far as I'm concerned.

So, all I'm saying is that this is probably the best Christmas present I have ever or will ever get in my whole entire life. I got exactly what I asked for - pictures of my family the way I see them through my eyes.

And heart beat in photos.

Hire her because she pretty much rocks.

Wednesday, January 2, 2013

3rd Annual Christmas Gift Recap: Gift ideas for kids with special needs.


But first look at our pretty Christmas tree after Santa arrived!

The purpose of these posts are to share what I get Christian for Christmas.

Why is that interesting?

Because it can be very difficult for friends, family members, and even parents to find gifts for children who have special needs and don't fit into a typical age-appropriate mold for gift giving.

So what do we do when we don't fit into a mold?

We break the mold! We find a box, and we think outside of it! Does that make sense?

Feel free to use this as your guide to gift buying!

Christian and Daddy opening this stocking.

He's a spoiled kid!

Our family has also been practicing a gift giving technique I adopted from one of my Moms' message boards years ago.

It goes like this:
1. Something you WANT.
2. Something you NEED.
3. Something to WEAR.
4. Something to READ.

It keeps Christmas organized and simple, it takes the stress out of buying and actually kind of makes it fun again.

So here is the rundown of what Christian got for Christmas. There are a ton of pics and even a special video! I could have split this into two or three posts but I'm annoying and late with this so it's all contained in one jam packed mega post! So keep reading!


It was suggested a while back that a train set would make a good gift because it can continuously run around and around. So I got a little Thomas starter train set thinking we'd adapt it with a switch. What I didn't realize is that the train, itself, is battery operated. But it kind of worked out.

Watch his hands.

This happened over and over again. And then Thomas was stuck. And it just so happened, he would swing his arm over as Thomas was coming around the bend.

Christian also got a "bonus want" because I scored this Chicken Dance Elmo from the local childrens' resale store, Rockin' Babies, for $8! We plan to adapt this with a switch and Christian really seems to like it!


Christian's CD player next to his bed broke and we used to use it quite often. We'd play music at night or in the early morning if he wasn't sleeping. Music is very important for the brain so he needed a new CD player.

We didn't intend to get him something this cool, honestly. But did you know cheap CD players are really hard to come by these days? When I found this at a reasonable price, I jumped on it!

Is it a treasure chest? Is it the heart of Davey Jones? Nope. It's a CD player!



I've wanted to get Christian one of these shirts forever!

It's sold through 3elove and it says, "That's How I Roll."

Coolest ever.


 We ordered some pretty awesome books from Usborne. I chose a book called Noisy Diggers. Christian can help push the buttons that add noisy sound effects to the story.

Lola is "helping" Christian choose each sound.

Stocking Stuffers:

Christian got a vibratey toy, a toothbrush, pajamas, and some play dough in his stocking to share with his sister.

This whole play dough idea was a shot in the dark as far as whether Christian would like it or not. What it turned into was thirty minutes of quiet from Lola and total concentration from Christian. And noises, too.

Keep in mind, Christian has a very difficult time looking and touching at the same time. It's one or the other for him.

Take a look at the video. (And if you listen carefully over my talking, you'll hear Christian being vocal about his play dough.)

This went on for thirty minutes. He just kept coming back to the play dough. And when he was done, he withdrew his hand.


Aunt Wendy got Christian these stacking towers for Christmas. In OT we've been working on Christian knocking things over that are stacked next to him. These boxes are really light weight and can be stacked at various heights.

See, he likes them!

We can also stack them on his tray.

This is what it looks like put away.

And stacked up high.


Of course, it wouldn't be a proper recap if I didn't share a fabulous picture of Lola and her new bike.

 I hope everyone had a wonderful Christmas and New Year!

2012 recap coming soon!

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