Keep moving...

The last three weeks have been insanely busy around our household. 

I finished up my final hours of my capstone experience, cramming half of the hours I had to complete into less than ten days.  Phew - it was crazy, but I got it done!  Last Friday was my pinning ceremony, and Sunday was graduation day.  I have officially completed my BSN!  Now on to the NCLEX, the licensing exam I have to take to get my nursing license and start working as a registered nurse. 

I mentioned in my last post that I received a job offer.  I will be working on a Labor and Deliver/Postpartum unit at one of our local hospitals, pending my passing my licensing exam.  I am very excited about this - it's what I've wanted to do since I went back to school.  I'm hoping to have everything completed and ready to go in early January so that as soon as I receive my license I can get moving.

The kids had their Christmas concert yesterday, and it was adorable as always.  Miss Sunshine has been terribly worried about this concert and was continually talking about what if she messed up.  Well, I kind of expected her to have a major case of stage fright and freeze up based on that.  I couldn't have been more wrong!  She got out there and gave quite the performance.  Monster Boy was a ham, as usual, and rocked his duet again.  He has had a solo or duet in every concert he has been in since the second grade (when they start auditioning for the parts).  He loves performing and has a beautiful voice (I realize I may be biased, but he really does sing well).  Hopefully now that things will be slowing down since I am finished with school, we will be able to get him in to music lessons.  I can't wait to see where he goes with it.

Daddy Mac and I are slowly working on healing.  I still find myself tearing up and crying at random times.  It's been emotionally very difficult.  I'm nearly fully recovered physically (hopefully I gave my last donation of blood to the vampires, er, lab technicians, yesterday), but emotionally is of course another story, as I expected.  One of the few things I had ordered in preparation for a new baby arrived last week, and that was a hard day for sure.  I know it will get better with time, but little reminders here and there can make it hard to get through the day without crying.  I just have to keep working on my feelings and eventually it will get better. 

For now, it's time to look to the future and all the changes it will bring to our family. 

An Elephant in the room

There are things nobody talks about.  I don't know if it's the stigma associated, if people feel it's some kind of bad karma, or if it's simply one of those subjects that is considered taboo.

Today, I decided I'm going to talk about it.  Because I'm living it right now, and it hurts and I feel like this isn't something I should feel the need to hide.

Daddy Mac and I decided a few months ago that we would like a third child.  We made the decision that we were just going to take prevention out of the equation and see what happened - not trying to get pregnant, but not trying NOT to get pregnant either.  So we were happy and bit scared when we discovered that the first month we did this resulted in a pregnancy. 

The first few weeks went as normal - I felt sick to my stomach all the time, and all those other fun pregnancy symptoms.  And then, the not so normal stuff started happening.  I started spotting.  It was light, and my lab levels that the doctor ran came back all normal.  So, we were told it was likely normal and to keep going about things as usual.  And then I spotted again.  I spent a weekend on bedrest, putting me behind on my Capstone experience for graduation, and went back in for more lab work.  And we found out that it was not normal. 

I miscarried this past week.  It was the most physically and emotionally painful experience I've ever had.  I don't know why, but since I was only 7 weeks pregnant I just didn't expect that much physical pain.   I wound up missing another Capstone day because I was literally in so much pain that I was shaking and couldn't stand up.  Daddy Mac had to stand pretty much helplessly by as we watched our hopes and dreams shatter. 

I don't know what the future holds for our family, and I can't pretend to understand why we would lose this baby.  I know that in some way, there is a reason for everything.  At least, that is what I keep telling myself.  To be honest, that doesn't really help.  I still ache, I still cry, I still wonder.  I know eventually the pain will lessen, but that it will never go away.  That I will always wonder what if.  That if we decide to try again, I will spend the beginning of my pregnancy, if not my entire pregnancy, in endless worry.  That there is a risk this could happen again, and that I may not be able to ever have another baby.   I think that probably scares me the most. 

For now, I'm focusing on one day at a time.  I graduate in two weeks.  I have to complete my Capstone experience in those two weeks, and it's going to take pretty much every day I have left because of the days I missed while fruitlessly hoping that I would get to keep this baby, and again while I was dealing with the physical pain of losing this baby.  Then I graduate.  Then comes the holidays, then taking my licensing exam and hopefully passing the first time so I can start at the job whose offer I accepted (more on that later, once I can officially say I have the job!).  It's going to be a busy few weeks, especially when you throw in kids birthdays and family holiday time and work and all that fun stuff.  And maybe sometime soon we will feel ready to try again.  Or maybe we won't.  One day at a time.

http://www.sayinggoodbye.org/

Let it fall...

Life has been crazy the last few weeks.  Oh, who am I kidding?  It's been crazy for years now.

Like so many others, I am a stress eater.  And I think it's safe to say that I have been through a lot of stress the past few years.  As a result, I had a number pop up on my scale a few weeks ago that I never thought I would see.  It was a bit of a wake up call for me.  How can I be a good mom, a good wife and a good nurse if I don't feel good about myself?  I can't.  After years of blaming every situation in my life, of making excuses, of making plans and failing to follow through, I decided to take a leap.  I have watched several friends start a new diet program with astounding results.  After months of sitting on the fence, I bit the bullet and started it up myself this week.

Yesterday was the first day of my first eight day challenge.  It's a very restrictive diet for the first eight days, and I won't pretend it's been easy these first two.  I really wanted to join in on the sub sandwich fest the rest of my family enjoyed this afternoon, and Daddy Mac is planning a slow cooked homemade chili for dinner tomorrow that I won't get to partake in.  But if I can get the results my friends have gotten, this sacrifice will be worth it.  I'm ready to get back to me - the healthy, happy me.  I promise to post periodic updates as a way to keep myself on track, but hopefully also as proof that this really does work.  And, if you are interested in knowing more about what I am doing to lose weight and get into shape - leave me a comment with your email address.  This is a no pressure kind of deal for me, so I'm not running around telling everyone "You should do this!".  But if it works for me, I'm happy to share it with everyone else, too!

Reading

So, a few months ago I got an app by Hooked on Phonics for Miss Sunshine.  I can't say enough fantastic things about this app.  Miss Sunshine loves getting to "play" on the tablet, and I love that she's learning while playing.

She has begun reading short books within the app on her own, and is learning the principles of sounding out and joining sounds to read words.  One thing I have noticed, though, is that she struggles with letter sounds that are similar on some of the activities where she has to listen for a sound or word.  It concerns me, because I don't know if it is her not giving her full attention, or if it is a result of her hearing loss.  Or even if it is a sign that the hearing loss has progressed more.  I tend to torture myself with worrying about it, which is not good for anyone.

I wish I knew what the answers were, but this is just another uncertain part of our journey, I suppose. It is hard, as a parent, to not have all the answers.  It is hard for me, the control freak, especially.  Just one more thing I can't automatically fix for her.  I hate the fear and uncertainty that surrounds every visit to the ENT, every time she complains of an ear ache, every time she answers "What." When I say something to her.  That insidious little voice in the back of my head whispering that maybe this time it will be too far gone, that this time will be the time we have to order that hearing aid.

I have to make sure to tell her new teacher that she needs to position Miss Sunshine so that her left side faces the teacher, so she can hear her more clearly.  To let her know that if Miss Sunshine is not looking at her and focused on the conversation, she may not respond.  Not beaches she is ignoring, but because she honestly cannot hear her.  I hate it, but it's a conversation that must be had.

The hearing aspect is something most people never think about when it comes to cleft.  So often I have heard "You know, our child had lots of ear infections and we opted not to do tubes.  They hear just fine."  It's different for a child with cleft.  It's not about infections.  It's about persistent fluid in the ears because the palate doesn't function properly.  It's about scarring, and loss of movement, and the possibility of permanent hearing loss.  Yes, there can be infections.  And these things are all risks of infections as well, but for Miss Sunshine it's different.  It's not about infections for her.  It's just another round of surgeries she has to face in the list of surgeries she has.  One more thing about her cleft that We have to compensate for, deal with the best we can.

Princess fever

Miss Sunshine is obsessed with princesses.  If she's not in her school uniform, she's in a princess dress.  In fact, she was reduced to tears earlier today when Daddy Mac informed her she needed to take her princess dress off so he could wash it.


I have to be honest - the whole princess thing drives me CRAZY.  I don't want my daughter growing up thinking that the way someone looks is more important that what is on the inside.  I don't want her thinking she needs a man to solve her problems.  I want her to love herself for who she is, to be strong and independent and ready to face the world.  I worry that this obsession with princesses and all things pretty is setting up a level of abnormal expectation in her eyes.  At the same time, it makes her so incredibly happy, and she is so incredibly confident in herself, that I just can't bring myself to take that away.  Because isn't that what we all want, in reality?  A happy child who loves themselves?
And the truth is - she is beautiful. 

Surgery number 6 (or is it 7? I've lost track...)

Wow, it's been a terribly long time since I've been on here, hasn't it?  I suppose that comes with the territory of working, going to nursing school and raising two kids.

So, updates.  It's summer break here.  The kids are crazy, and I think we are all about ready for school to start back up.  We went to Disney World in May, and it was AMAZING!  Seriously, it was the best experience we could have hoped for.  The kids are already talking about when we can go back.

Miss Sunshine had another surgery after we came back.  This time, she had the impacted tube removed, and the ENT did a patch on her eardrum.  Because her last several tests have showed no fluid in her left ear (where the eardrum is intact), the ENT felt it was time to repair the right ear.  Surgery went well although recovery was a bit nerve wracking.  She did not want to wake up, and then didn't want to drink anything post op.  And they wouldn't let us leave until she had something to eat or drink and kept it down.  She finally sucked on enough of a Popsicle for us to go home.  Then it was on to the daunting task of keeping a five year old from doing any gymnastics type activity, and getting no water in the ear of a child who has hair down to their butt.  Not stressful at all.  We had our initial post operative follow up three weeks after surgery - so far so good!  Her eardrum even had some movement, which the ENT said was unexpected.  Her hearing is still down, but that is normal with this surgery.  We go back at the beginning of August for a hearing test to see where she is at.  This surgery was necessary, so we had little choice in regards to doing it, but it does carry the risk of hearing loss.  And since it was on the ear that already has hearing loss, that was a bit scary.  In addition, prior to the surgery, she was borderline for needing a hearing aid in that ear, so if she does have hearing loss as a result we will be dealing with that as well.  Obviously, Mommy is a bit of a mess with this next appointment looming over us.  Happy thoughts would be great about now.

Monster Boy has struggled a lot this year.  We began having major issues with his behavior at school back in October.  It got very bad very fast, and we were at our wits end.  He was finally diagnosed ADHD in December, and after much reluctance, we started medication in January.  I believe medication has a purpose, and I am not against using medications when necessary.  That said, I do try to avoid using medication unless it is 100% needed.  I don't medicate for low fevers, coughs, etc.  so putting him on a daily controlled substance he will likely need at least through school, if not life long, was intimidating to me.  It was a difficult decision, but it was absolutely the right thing to do for our child.  After starting the meds, it was like I had my son back.  I am not naive.  I realize my children can be difficult, handfuls. And downright crazy at times.  But his behavior was so far beyond that, that he really wasn't the kid I knew anymore.  Since starting the meds, he brought his grade in behavior from an F to an A!  I couldn't be more proud of the strides he has made, and I look forward to the new school year rather than dreading it.

Things have been difficult for us as a family the first half of this year, and the road ahead is sure to have more twists and turns as we go along.  But I'm beginning to see a nice, straight, clear stretch of highway in the distance, and I know we can make it to the easy point of our journey if we just keep on moving forward.

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.