Sunday, August 2, 2015

Change is in the air

So, I have failed miserably at keeping active on this blog.  One of the main reasons is that I rarely use my laptop these days, and the mobile user interface I find a little less than user friendly.  But I'm trying!

Lots of updates for you all - many of you probably already know this but I'm writing the updates anyway...

Miss Sunshine had her yearly cleft clinic at Shriner's, and it went beautifully.  At this point, her cleft repair is perfect, her hearing is about the same and there is not much to do until it comes time for her to start orthodontics.  Since we don't have any loose teeth yet and likely won't for another six months to a year based on her panoramic dental xrays, it's going to be a while for that.  In fact, they said they really only need to see her every two years until that time instead of yearly.  We will be continuing to go yearly, however, because she is now also being followed by their orthopedics team.  I'm not sure if I have mentioned it on here before, but Miss Sunshine is a pronounced toe walker.  It's really gotten considerably worse in the past year, so we were happy to have the Shriner's team take a look at her.  We did get some unexpected diagnoses during her evaluation with them, however.  For one, they diagnosed her with Sensory Processing Disorder.  Basically, her body is constantly seeking physical stimulation, and they believe that the toe walking is a partial response to that sensory seeking.  Another issue they found is that her core muscles are very weak, while her back muscles are very strong.  This is also contributing to the toe walking because it is compromising her posture and balance.  Third is basically a matter of the chicken or the egg.  Miss Sunshine's Achilles' tendons are extremely tight, causing compromised range of motion in her ankles.  Most people can achieve a greater than 90 degree flexion in their ankles.  Miss Sunshine doesn't even come close.  They didn't give us exact numbers, but for sure she can't get to 90 degrees at all.  What they couldn't tell us is if the tightness in her ankles came first, causing the other issues, or if the tightness is a result of the other issues.  We lean toward believe that the tightness came first, mainly because Daddy Mac also has tight Achilles tendons and restricted range of motion, although not to the degree that Miss Sunshine does.  So, what does all this mean in the long run?  Well, for now it means physical and occupational therapy to address the tightness and underlying causes.  She also wears splints at night to keep her ankles flexed and try to help with the tightness.  We now have an orthopedic team here locally as well as the Shriner's team, and our local team has agreed 100% with Shriner's assessment of everything.  If PT and OT have not made significant progress in the next two months, then we move on to what is called serial casting.  Basically, they will cast her ankles at progressive angles weekly or bi-weekly until they are able to achieve a normal range of flexion in her ankles, and that will likely be followed by orthotic braces.  Due to the degree of progression in her toe walking, we are all expecting this to happen, although we will be pleasantly surprised if the PT works.  The last, and most extreme option, is tendon lengthening surgery.  Everyone is hoping to avoid that!  Our orthopedist here feels that we should be able to achieve what we want without surgery, so we are naturally clinging to that hope.  It has been a lot to take in, but we are hopeful that we will see improvement soon.

I also have updates on myself.  I know I wrote a post last fall talking about our miscarriage.  Well, we found out in early February that we have another baby on the way!  Last week we got some scary news.  I have developed pre-eclampsia.  This is a dangerous condition affecting the mother and the only true cure is to deliver the baby.  I also had this condition with Monster Boy, and it was so severe that he was delivered as soon as they discovered it at 36 weeks.  This time it started much earlier.  Right now, I am stable.  My blood pressure is elevated and my kidneys are spilling protein, but all of my other labwork is fine.  So, I have been put on blood pressure medication and modified bedrest, taken off of work and am being monitored weekly, because I am so early in my pregnancy still (30 weeks tomorrow!).  The hope is that I will remain stable until 37 weeks, when we have scheduled a C-section for delivery.  Our most immediate goal is to get me to 34 weeks.  It has been a little bit scare and overwhelming, but I have faith in our medical team, and they are being very proactive in taking care of me because of my history, so we are hopeful that we will make it to 37 weeks before we meet our new baby girl.  (She still does not have a name!).  I rarely ask for prayers or good thoughts, but if you could keep us in mind that we will safely make it to delivery, both me and the baby, it would be greatly appreciated.

Tuesday, January 27, 2015

Perpetually late

Being late is one of my biggest pet peeves.  And yet, I don't think I ever manage to be on time for anything except flights and doctors appointments.  I'm so frequently late that I'm overly worried about missing a flight or an appointment so I'm always terribly early and stuck dealing with annoyed kids as a result. 

All this is a lead up to say that I'm late, again.  I missed the five year anniversary of Miss Sunshine's cleft repair.  It seems so crazy to me that it has already been five years - but it has.  Miss Sunshine is doing remarkably well these days.  We have a few minor speech issues, that may be cleft related, but are more likely age typical mispronunciations and errors.  S's are still a bit unclear, and R's still come out as W's more often than not, but overall she has no need for speech therapy.  I have to schedule a follow up hearing test for her after our Shriner's visit, where she tested significant loss in her right ear.  They said it could be due to the plane ride, though, so we are crossing our fingers that is the case.  She is still toe walking 95% of the time, and even though we try to get her to do stretches and walk heels to the floor, she is losing flexibility almost daily it seems like.  We do meet with the orthopedics team at Shriner's at our next cleft team visit (I can't sing the praises of this organization enough, seriously.  The things they have done for our family alone, much less the thousands of others they help daily...), and I'm anxious to see what they have to say.  I'm praying it's something that will be correctable with therapy or braces or something along those lines, and not require surgery.  Only time will tell, I suppose.

Waiting in the airport before our last Shriner's trip


We went to the eye doctor this week.  Miss Sunshine has perfect vision.  Monster Boy really, REALLY tried to fail his vision test because he wants glasses!  He did come up slightly far sighted, so he now has reading glasses. He is beyond excited about them and really tries to find any excuse to wear them as much as possible.  It's rather amusing.  He looks absolutely adorable in them, though.

So handsome in his new glasses - that he picked out all on his own

I finally graduated!  I have taken the NCLEX (my licensing exam), and passed.  I am officially an RN!  I have a license number, and a JOB. I am so excited about the job!  I have officially accepted a position in the labor and delivery/postpartum unit at one of our local hospitals.  It is a very exciting opportunity and I am thrilled - it's my dream job and I couldn't be more excited to start.  I feel very hopeful that the past six years of struggles and worries are moving behind us, and the future is looking very bright for us all.  I am hoping that now that school is done, I may find more time to update and bring more cleft awareness here.  I make no promises on that front, mind you.  But I can dream!

Tuesday, December 16, 2014

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. 

Sunday, November 30, 2014

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.

Saturday, September 13, 2014

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!

Friday, July 18, 2014


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.

Monday, July 14, 2014

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.