a new challenge... part 2

Let me start "Part 2" by saying that as a follow up to my previous post, I really am in an okay place with this... it just generally sucks. I know that there are other families who go through oh-so-much more. They have far more devastating things with which to deal. So know that I am not complaining, but I am just sharing how I genuinely feel.

The basic growth pattern for a child's face is that the lower jaw grows down and forward, then the upper portion of the skull follows, down and forward. Since Beebo's lower jaw on the left is not growing adequately, the upper portion of his skull cannot grow adequately either (even though it has the ability to do so). So, basically, the entire left side of his face is staying the same size while the right side grows... hence, the more noticeable changes to the structure of his face over the last year or so. 

Like I said before, it's hard to predict the future, but a basic plan of action for Beebo is this:

• This summer, we will remove at least one impacted molar. His "6 year" molar on the lower left has not erupted, because it can't - it's trapped under his "12 year" molar. We need to sacrifice at a minimum the "12 year" molar to see if the "6 year" will come in. We may need to sacrifice both of them, but we won't know until the oral surgeon gets in there. 
• Once the molars are out of there, the mandible can fill in with bone and give us a more solid, stable place to affix any type of treatment. We'll wait 6 months for it to fill in completely with bone after the extraction.
• In March, we'll go back to Iowa and get a third Cone Beam CT Scan. This will give the doctor several scans over a 15 month period to assess how much growth is happening on the left side of the face. 
• Next summer (2014) at age 9, the plan is to do a rib graft surgery to replace the deformed/missing portion of his condyle and mandible. They will remove either his 5th or 7th rib on the right side, shape it, and secure it onto the mandible. His jaw will be splinted and then wired shut for about 3 weeks. The hope is that the rib will continue to grow, allowing the upper face to grow as well, slowing down or, best case scenario, stopping the rate of deformity.
• Braces will follow, somewhere around age 12. 
• IF the graft does not grow significantly or enough, he will be facing another surgery around age 15 - a mandibular distraction. His mandible will be separated into 2 pieces, then a distraction device will be secured to it and the split will be slowly increased over the course of a couple weeks. When it is in the right place, it will be secured and new bone will fill in the gap. This process takes about 3 months. 
• IF, when he is finished growing around age 19, he is not happy with his appearance, he can opt for a final orthognathic surgery. This surgery would be pretty much cosmetic in nature and this will be his choice.  

a new challenge... part 1

This post has been in draft status for a while. I keep coming back to it but have never completed it to share. I don't know why - I was probably digesting. I know I was praying. But I'm also a reader; a study-er. I crave knowledge and I'm sure I was so intent on knowing as much as possible that it encompassed the situation. But now, we've seen 3 doctors since August, most recently yesterday, and people are asking, so I guess it's time. 

You probably all know that my Beebo has always had the cutest little crooked smile. 

Well, apparently that crooked smile was indicative of a bigger problem. After being sent from dentist to orthodontist to oral surgeon to a local craniofacial doc to a top craniofacial team out of state, we have a confirmed diagnosis of Hemifacial Microsomia. HFM is a birth defect that occurs during the first 6-8 weeks of pregnancy (interestingly enough, at the same time as inner ear structures form... coincidence for Beebo and Sis? Hostile uterus, party of 1.). 

With HFM, basically, 1/2 of the face, typically the lower face, is underdeveloped and does not grow normally. It often affects jaws, teeth, cheek tissue, orbital size, ears, and facial nerves. A commonly accepted range of severity regarding the mandible (jaw) is the Pruzansky classification. In this system, Beebo has been diagnosed as a IIB (moderate) severity. He has a full lower mandible, but it is very small and deformed. 

Pruzansky Classification

Beebo's face

What we know so far about Beebs' HFM:

• His lower left mandible is not fully developed and is not growing adequately or in proportion to the rest of his face
• His left eye socket is smaller
• His left upper mandible is misshapen
• Some adult teeth are unable to erupt because they are not in the right places and there is not enough bone to support them
• He has less fatty tissue and bone structure in his left cheek
• His left ear is folded

BUT, let's talk about the positives in this, because they are there! His left eye has perfect vision and his left ear is present (many kids are missing an ear) and hears just fine. He has no facial nerve involvement and thus no paralysis. He does not have any involvement of the soft tissue of the mouth, throat, or trachea that impairs his speech, swallowing, or breathing. These are all things that are common issues with his level of severity, so we are grateful. So very grateful!!

As he continues to grow, his appearance will continue to change, as will the functionality of his jaw, his bite, possibly his speech. We have to medically intervene and that's where this momma begins to shudder. I'm trying to see the big picture. I'm trying to feel blessed in my life. I'm trying to cling to those positives listed up there. But, right now, I feel sick. I feel cheated. I feel sad and angry, then little bits of relief that it's not worse. Mostly, I feel like stomping my feet and shaking my fist and shouting "This is NOT fair! Haven't my kids been through enough? Why does my body fail these kids?"

I've been in the midst of these feelings before. They will leave and then out of the blue, they will try to come back. They aren't welcome here. They aren't my friends, but realistically I'll let them in to stay for a while before I kick them out. I know this cycle well.

I'll update on the plan of action in my next post. It's difficult to have anything definitive yet, but we do have a straw man outline of the next few years. 

Wordless Wednesday

The difference a year makes...

Easter 2012

Easter 2013

 

Recent Musings

• My dog eats cardboard. Really any type of cardboard, she's not picky and it just recently started. We thought it was a fluke but apparently, not so. It really doesn't matter to her what's inside the box, that's collateral damage! Gifts from Gramma A in Minnesota, a pair of Aero dress pants, a case of Diet Mt. Dew (ugh - gag anyway!), stored Christmas lights, pajamas from Vickie's Secret, a Coach purse - all's fair when you are craving fiber!
• WyGuy is going to high school. I'm a struggling momma and I'm certainly not old enough to have a high school student. This is much harder than those milestone birthdays. This is literally just a blink away from him becoming a man. Please, please, please reassure me that a grown man still needs his mom!!!
• I love having chickens! In fact, 33 more of them are on their way to our house in a few weeks. 3 layers and 30 broilers. 
• It's almost garden time and I can't decide what I want to plant this year. My staples are eggplant, zucchini, tomatoes and spinach, but what should my wild card produce be this year? 
• I love my big car and I would love to fill it up with more cute little noggins... that's what all those open seats are for, right? 
• I hate painting. If I weren't such a fru-gal (like that? I just thought of it!), I would pay someone to do it. I LOVE the change a fresh color brings, but I hate that I felt like I had no weekend because I was elbow deep in Lyndhurst Timber, satin finish. 
• Less than 4 weeks until we head to the University of Iowa to see a craniofacial team for Beebs. Prayers are welcome. We'll likely have some decisions to make as we've already seen two local doctors and we have an idea of what's coming. 
• I don't drink enough. Never have. I can, and often do, go from my morning 2 cups of coffee until dinner without anything to drink. Today, I resolved to start forcing myself to drink. I've successfully ingested over 1/2 liter of water (hey, look here, that's almost 20 oz!!), however, I've been to the bathroom 4 times - ugh. Does that get better or am I doomed to pee every 15 minutes if I actually get to my goal of 1 liter in a day? 
• My blog title is stupid. 

Here's to my life!

Here's to today! 
Here's to waking up early and spending some time alone with my Bible. 
Here's to keeping my voice down and my spirits raised. 
Here's to acknowledging that there is more work to do in me, than in my house. 
Here's to realizing that cleaning up my heart is more important than cleaning the toilet or examining the faults of my family. 
Here is to holding my children more, and my tongue even more. 
And here is to learning, every day.

 

Decisions

Changed. I am changed. So many things about the way I think, the perceptions I have, the actions I take were changed in 2010. I'm grateful. I knew I would be. I wanted to be. Nearly 3 years later, that experience still weighs on my heart. Photos still sit on my desk. Reminders of my blessings and my change. 

For a couple of months that experience has taken a louder voice... it's no longer sitting quietly in the back of my mind as a daily reminder. It's at the forefront. It's on my mind when I wake. It's in my prayer time. It's appearing in pretty random places around me. So I ask you to pray earnestly with me that I would hear what He has to say, not what I desire. Pray for my family that He would speak as clearly to them. I want no decision within our life to be without Him in the center. 

Today, the verse in my reading was Proverbs 24:11-12

Rescue those who are being taken away to death;

hold back those who are stumbling to the slaughter.

you say, "Behold, we did not know this,"

does not he who weighs the heart perceive it?

Does not he who keeps watch over your soul know it,

and will he not repay man according to his work? 

Yikes! I can't say I haven't seen or heard, because I have. So I need to make sure I'm doing what He wants, humbly and gratefully, because I do know... and He knows. 

Consequences - a different look

Since the beginning, I've tried to teach my kids about consequences. That ALL actions and decisions have consequences. We often associate the word "consequence" with something bad, but truthfully, a consequence, by definition is simply something produced by a cause. Our actions and decisions are the cause and the result is the consequence. I want them to understand the word fully. Consequences can be bad, but they can also be good. 

It's a hard lesson to learn and even harder to watch it be learned. As a mom, you want to comfort, shelter, and protect them from things happening, but there are so many times when they learn so much more by experiencing a direct consequence for what they have chosen. Ugh, this parenting thing is a gut-wrencher sometimes!

In our house, the roughest part of this road is consequences that involve others, particularly others in the same said house. I think complicating teaching this lesson is my difficulty in grasping the concept of sibling relationships. I've got one brother who was in 2nd grade when I moved out of the house. I was more of a second mom to him than a sister. I spent a LOT of time around adults as a child too and so this whole sibling rivalry/friendship thing is completely foreign territory to me! 

So, in an attempt to nurture this among the Simpson kids, I've been reading about the idea of restitution consequences. The goal behind restitution consequences is to find ways to help “right the wrongs” while restoring the relationship. The message is: Relationships are valuable. When you mess them up, and you will, it’s important to reconnect. 

Having a child "say you're sorry" is smart and courteous, but it doesn't right the wrong. It doesn't teach remorse and reconciliation. Kids are smart, especially mine :-) They'll figure out what to say that they think will get them out of trouble! So, how do I try to implement restitution consequences? By having the child who is at fault (or both if it's mutual) reconcile the offense by doing a specific kindness for the other person - a note, making a mug of hot cocoa to share, taking over a chore... any small act of kindness or sacrifice. 

Brilliant, right? Yep, it will be even more so if it works! We're going to give it a try and see. With a 14 year old... yep, he's 14... I'm a little behind the game, but like I said, they're smart kids so I think it'll all turn out in the end.