Sunday, January 26, 2014

Five years

Miss Sunshine turns five years old next week.  I can't believe she is FIVE already.  This also means that we just passed the four year mark on her palate repair surgery.  Four years since the longest, scariest day of my life.

I know that we are incredibly blessed in so many ways.  For one, we had the amazing fortune to be referred to Shriner's Hospitals for this surgery.  Two, we live in a country where healthcare is (in general) available, so she had the opportunity for the surgery even if Shriner's hadn't taken her on as a patient.  Three, she is an amazingly resilient child who came through surgery with flying colors.  Four, her first surgical repair was a success and she has not needed subsequent surgeries.  Five, she is a healthy child, so we did not face other issues post-repair.  The list goes on and on and on. 

I say all this, not to brag, but to point out all the potentials for problems that could have happened along the way.  I have friends in the cleft community whose children are on palate repair five or six.  There are multiple reasons repairs can fail, and sometimes (much like the occurrence of cleft itself) it just happens, and they don't know why.  There can be other health issues, such as autism, sensory disorders, learning disorders, and so on. 

This is not to say we have not faced our share of problems.  Had Shriner's not accepted Miss Sunshine, for example, our insurance did not cover a cleft team.  We would have had to contact each needed specialist individually, and had multiple out of pocket costs for such visits.  Our bill would have been in the tens of thousands by the time all was said and done, between copays, deductibles and out of pocket maxes.  Miss Sunshine STILL struggles with her ears (in fact, we are headed back to the ENT soon), and does have hearing loss in one ear, which has progressed with each visit to the ENT.  While we are still hopeful that it may be related to that impact tube and not permanent, there is always the likely possibility that it is permanent, and that it may continue to progress.  Miss Sunshine spent three years in speech therapy.  There is still the possibility that she may require more therapy, as she does still have some negative speech habits and difficulties with pronouncing certain letters and sounds (for example, she loses a lot of air when saying the SH sound - a common problem in cleft children.  It does not make her speech unrecognizable at this point, and since she really doesn't have vasopharangeal insufficiency in other speech patterns, not something that would need to be surgically corrected at this time).  She does have some texture issues, which I believe to be residual from having baby food go up her nose.  She will not eat anything that resembles baby food except apple sauce and yogurt.  Mashed potatoes, or anything soft or pureed, will not pass the child's lips without a major fight.  She is a terribly picky eater, and we have a hard time getting her to try new foods. She is still underweight for her age (though no longer failure to thrive!), and will likely always be that way - a residual of her struggle to gain weight in the first year of life due to her cleft.

But as I look back over the last five years, over the struggles and the successes, all I can do is be thankful.  Thankful for the experiences we have had that have made us stronger as a family.  Thankful for the opportunity to get the word out about cleft, about how it affects us in the real world.  Thankful that people want to hear and listen.  Thankful for the amazing support we have found within the cleft community. Thankful for our beautiful, amazing, perfect daughter.  

Friday, November 22, 2013

An open letter to The League

To whom it may concern,

I am sure that you have been bombarded with outraged emails, comments, and contacts in the last day.  I suppose you can add this one to your list.

I am the parent of a cleft-affected child.  I do not watch your show.  My husband, however, does.  I understand that the basis for your show is crass humor, with crude comments highlighting poor behavior.  Regardless of the basis for your show, there is a line between crass and flat out wrong.  I have heard about your comment regarding cleft children.  I understand you called them ugly.  Let me assure you, ugliness lies not with outward appearance.  I can see ugly, and it is not my child. 

Were you aware that cleft occurs in roughly 1 in every 700 births?  That it is one of the most common birth defects in the US?  I did the math for you - congratulations, you managed to insult roughly 453,012 people with your comment yesterday.  That number includes only the number of people living in the US with cleft.  It does not include their family members, friends, and others who may have found your comment offensive. 

I think sometimes we forget that there are real people out there living with disfiguring conditions every day.  I'd like to educate you a little bit about cleft.  Children with cleft face multiple surgeries in their lifetime, beginning when they are only a few months old and continuing through adulthood.  Each of these surgeries are extremely painful and require weeks to months of recovery time.  While cleft can sometimes be linked genetically, whether through a syndrome (and there are numerous syndromes that can cause cleft) or through family history, quite often there is no known cause for cleft.  This is the case with our daughter.  There is no reason.  It just is.  She can't help it, I can't help it, her dad couldn't help it.  This is not some thing that she made a decision to have.  YOU, however, made a decision to ridicule her for it.  I fail to see where the humor lies when an adult (in a script or otherwise) makes derogatory comments about an innocent child or children.  I have spent the past nine years teaching my children that words hurt, and that making fun of others, especially their appearance, is never okay.  Your show just told all of it's viewers that it is okay to make fun of other's appearances.  I hope that makes you proud.

Here is a list of famous people who are cleft affected for you:  Cheech Marin, Tom Brokaw, Jesse Jackson, Mark Hamill, Carmit Bachar (of the Pussycat Dolls), Stacy Keach, Annie Lennox, and the one you might recognize the most, Peyton Manning.  Are these people ugly?

Shame on the writers who wrote the line, the actor who said the line, the director who filmed the line, the producers who backed the line, and FX for airing the line. 

You may never read this letter - and that is your decision.  However, rest assured that the thousands of people I have contact with through social media, public blogging, and news stations I am sending this letter to, will.  I hope you never have to face the possibility of a loved one with a defect.  But if you do, I hope you remember this moment.  Maybe then you may feel some remorse. 

an offended parent.
My beautiful, cleft-affected daughter. 

Tuesday, November 5, 2013

Catch up

I started off the summer with the best of intentions about keeping up on here, but as you can tell, I failed miserably at that! 

I've started a new job (in my new career field) and between that and school, I meeting myself coming and going.  I just keep telling myself it will be worth it in the end. 

So, catch up. 

Monster Boy is nearly nine now.  Time truly flies.  He is amazingly smart, and astounds us on a regular basis with what he can do.  We found out at parent teacher conferences that he is testing at a fifth grade level in math - without any lessons on the material he tested on.  The kid figured out basic algebra ON HIS OWN!  He is definitely too smart for his own good.  Unfortunately, my insane schedule is starting to take it's toll as well, and he is struggling behavior wise in school right now.  I think there is also some teasing and such going on at school (he is the shortest kid in his class, for one thing).  I wish I knew a good way to address it.  He complains about it a lot, and we've spoken with the teacher regarding it, but she either doesn't see it happening or isn't taking it the same way he is when it does, because she doesn't seem to think it's a problem.  His acting out in the classroom is rapidly becoming a major issue, however.  We are racking our brains trying to come up with ideas to deal with that. 

Miss Sunshine is doing well.  She love, love, loves preschool.  She is so excited to go every day.  Her teacher says she is doing great, and learning just as quickly as Monster Boy seemed to do.  We took her to the ENT last month, and it was a mix of good and bad news there.  I dread these visits - her ears and hearing are my biggest worry right now.  There is always that looming specter of more surgery hiding in the background, but it's only a possibility, not a given.  But her ears - this is an ongoing concern.  And hearing loss is often not correctable.  So, the good news first.  That ear tube that was already out and in the ear canal finally came out of her ear.  And that eardrum healed on it's own (this is always a concern when you have ear tubes for an extended period of time) and there is NO fluid in that ear!  Hooray!  This means her palate is functioning, and keeping the fluid out of her Eustachian tubes.  And that the tube doesn't need to be replaced.  Now, for the bad news.  The tube in the other ear is impacted in her ear drum.  It is completely encased in wax, which is pressing against her ear drum and likely causing the itching she frequently complains about.  The ENT really wants the tube out, but he's giving it six more months in the hopes that it will come out on it's own.  If it comes out on it's own, there is a much better chance that her eardrum will heal on it's own as well.  The ENT thinks it is likely she is going to need reconstructive surgery on that ear, though.  Some type of patch, probably, for her ear drum.  This is not optimal because it can cause further hearing loss.  But even worse than that - the mild hearing loss she was already diagnosed with in that ear has progressed.  It could be due to the wax around her tube causing pressure, it could be due to more scar tissue inside the ear, it could be a lot of things.  On the one hand, if she has to have surgery to get this tube out, they can go in and potentially clear out some of that scar tissue, perhaps restoring some of her hearing, but at the same time risking not being able to save it.  On the other hand, if the tube comes out on it's own and the eardrum heals, this hearing loss will likely be permanent.  This was not news I was wanting to hear.  But, it is what it is, and she can still hear, so we just deal with needing to use a louder voice when talking to her.  I have also noticed that she is developing some negative speech habits, which I have to wonder if it's related to the hearing loss.  We will likely have her reevaluated during her Kindergarten screening to see if she needs to resume speech therapy.

So, that was a long update.  I've been kind of avoiding it, but now it's done. 

Friday, July 5, 2013

It's July.

Normally in July I'd be complaining about how ridiculously hot it is out.

Only, it's not right now.  It has been beautiful here.

This year, I'm focusing on Cleft Awareness.

Did you know that cleft is one of the most common birth defects in the US?  It occurs in roughly 1 in every 600 births.  They have no idea what causes cleft.  It could be environmental, it could be genetic.  They just don't know.

Cleft occurs when, during the formation of the facial structures, the lip, palate or other facial structures do not "meet" to fuse together. 

Miss Sunshine's cleft is commonly associated with a syndrome called Pierre-Robin's.  Miss Sunshine does not have Pierre-Robin.  We have no family history of cleft.  (We have family history of a lot of other medical issues.  But not cleft). I did not take any medications commonly thought to cause cleft during pregnancy.  I took prenatal vitamins, did not consume any "forbidden" foods, was not exposed to radiation, or any other "toxins" during my pregnancy.  We really do not know why she has a cleft.  She just does.

You learn a lot when you have a child with a birth defect.  (I'm not going to get on my soapbox right now.  Maybe later).  Things you never had any concept of before that happens.  I had no idea how common cleft was.  I had no idea there were different kinds of cleft.  In fact, I remember when we were in the delivery room and the nurse announced she had a cleft palate.  I had a C-section, so I was pretty much tied to a table.  I told Daddy Mac to go look at her and see what was wrong.  He came back to my said and told me "I don't see anything different about her.  I don't know what the nurse is talking about.  Her lips are fine."  It wasn't until we were in the recovery room, and I was holding her that I realized what the nurse meant.  It wasn't until she cried for the first time that I saw something was different than with Monster Boy.

But she was still beautiful and perfect to me. 

Tuesday, July 2, 2013

Crazy Summer Days

It's been a beautiful summer around these parts.  I had planned to spend a little time updating, but we've been running non-stop since school let out, and it just hasn't happened.

However - July is Cleft Awareness month, so I'm going to attempt to write at least one post a week (hoping to maybe get something short up each day) about cleft and our journey.

For my first post - I'd like to talk a little bit about Miss Sunshine's cleft.  She was born with an incomplete cleft of the soft palate and bifid uvula.  Her type of cleft is not visible unless she opens her mouth wide.  It does have a great impact on her ability to eat, however.  Because the roof of her mouth was completely open into her nasal passages, she could not create suction in her mouth.  So she had to use a special type of bottle - in her case, a Haberman (also called a Medela Special Needs Nurser) - which didn't require as much suction.  In fact, her bottle had an elongated nipple with a chamber that we actually squeezed to help her eat until she was big enough to have a little bit of suction and eat on her own.  She also had many ear infections and persistent fluid in her ears because her Eustachian tubes were completely open.  In fact, she failed four different hearing tests before her first set of tubes were placed, and does have minor hearing loss in one ear due to scarring.  Her overall hearing still tests within normal range, but monitoring her ear tubes is an important part of her care, as she made need them for several more years.

Miss Sunshine has had a total of four surgeries - including five sets of ear tubes and her palate repair.  When her palate repair was performed, the surgeon cut along her gumline on the inside of her palate, as well as along the cleft.  He then pulled the loosened tissue together in the middle with sutures, and the rest of her mouth was packed but left open to heal on it's own.  The muscles in the roof of her mouth also had to be repositioned during this surgery.  In a normal palate, the muscles cross the roof of the mouth from side to side.  Due to her cleft, Miss Sunshine's muscles actually ran front to back, with a gap in the middle where her cleft was.  So all those muscles had to be cut, and turned and repositioned so that they ran across the roof of her mouth like they were supposed to.  That is a necessary part of the procedure, as it allows for proper speech, and also helps to protect her Eustachian tubes, meaning eventually she will no longer need tubes in her ears.

Miss Sunshine spent three years in speech therapy, before being released.  Prior to her palate repair she was not able to make any hard consonant sounds.  She could make MMMM and NNNN sounds.  So, her first word was Mama, because it was one of the few sounds she could successfully make without a repaired palate. She wasn't much of a babbler, and I think a lot of that had to do with her inability to form certain sounds. 

That's the basics behind her cleft.  There is much more detail, which I will be sure to make posts about as the month progresses, but that's the beginning of our story.


Miss Sunshine's palate - before repair

What her special bottle looked like.

Her palate one week post op - kind of blurry but you can see where they opened the roof of her mouth to get the needed tissue for the closure of the cleft.

Miss Sunshine's palate three years post-op.  Unless you know what you are looking for you can't even see the scarring.

Tuesday, April 9, 2013

Catch up

So, life has been crazy here. School is a lot of pressure this semester - but I am loving it (not the pressure, but everything I am learning). Monster Boy has been doing really well at school lately. Miss Sunshine is as spoiled as ever, and just graduated to a "real" bed. Daddy Mac is as busy as ever with work and school board meetings and Boy Scouts and life in general.

Both the kids want to play baseball this summer. This will be Monster Boy's third year, and Miss Sunshine's first. I was surprised she wanted to play, since she is the epitome of a girlie girl, but she was insistent that she wanted to do it. So we signed her up. This should be interesting.

Here are some recent pictures of the kids from a trip to the zoo over Spring Break, Easter, and one of our many crazy snowstorms this year!

Saturday, March 2, 2013


So, the last two months have been something of a blur.  We have been so busy around here that nothing much has gotten done - if that makes sense.

We did get a week long break between the end of last week and beginning of this week, thanks to two major snowfalls hitting our city.  14+ inches on the first round, and nearly 7 on the second.  Craziness!  So, the kids and I enjoyed some playtime outside, and nobody got anything done around the house during the six day weekend (eight for me, since I don't have classes on Wednesdays) that we had.  It was well worth it, though, to have some good family time together. 

And now, pictures!

Of course we had to build snowmen - it's not snow without snowmen!

Monster Boy (Yeah, he's definitely going to need braces...)

Miss Sunshine! (We are officially in the wierd faces instead of smiling phase)

Snowfall #1 - this is about 12 inches of snow - we got another 2 inches before the end of the day!

Snowfall number one - somewhere between the single tree and the set of two trees is where our street is normally located.

Snowfall #2 - it was a much wetter snow that stuck to EVERYTHING!