Time Flies...

I can't believe how quickly the time is passing us by.  I looked today and realized it had been over a month since I last posted.

Things are pretty much the same around here - I haven't got a lot of updates.  Miss Sunshine has been complaining increasingly of her legs hurting, especially at night.  She has been diagnosed in the past with growing pains, and we believe this is what we are again experiencing - she grew two inches between July and October!  In fact, when we went in October for a visit, she had broken 30 pounds (finally!) and was almost 31 pounds, and was 39 inches tall.  That has moved her up to the 22 and 47th percentiles, respectively.  Considering that she was in the 5th and 12th percentiles at her 3 year well child check - we are ECSTATIC!  She's FINALLY gaining ground.  Everything else has been business as usual with her - she had a fantastic report at the dentist office last week.  She will go back to our local ENT in February, along with her yearly physical and immunizations.  We hope that her tubes continue to function, and in absence of that, that she would test negative for fluid so that another surgery would not be necessary.  They are keeping a close eye on her tonsils, as they are anatomically enlarged (this is their natural size) and could cause problems down the road.  We of course do not want them to be removed unless necessary, but neither do we want to face possible breathing problems.  She has Daddy to thank for those huge tonsils - his are crazy big as well.

Monster Boy has been our health issue child lately!  I did get a referral to see a pediatric allergist when I took him in for his school physical in August.  He literally breaks out from everything.  I can't use any kind of fabric softener, and we are limited to two kinds of detergent, both of which are expensive.  He can't use any kind of sunscreen at all - he has a photoallergic reaction with them, meaning that while indoors the sunscreen has no effect on him, but once he gets in the sun, he has an allergic reaction to the chemical reaction that occurs when the sun is combined with the sunscreen.  We are thankful that he is dark complected so burns are less of  concern for us, and we use sunshirts instead of sunscreen to protect his skin as much as possible.  Well, when we went to the allergist, I was expecting to get a laundry list of allergies.  We didn't get that at all! He only had one reaction, to dust mites.  However, we did find out that he has asthma!  I felt badly about that - after all, he is almost eight years old - how did I miss that?  He has a very mild form of asthma, almost borderline.  He has been prescribed a rescue inhaler, along with a daily dose of Zyrtec.  Its likely that the dust mite allergy is the cause behind his asthma, and the hope is that the daily dose of Zyrtec will control the allergy enough to rid him of the asthma.  We go back later this month for a follow up test on that.  He is doing amazingly well at school - in fact, they wrote up an IEP for him to get advanced level work in all core areas!  He tested beyond END of year expectations in Reading, English, and Math at the BEGINNING of this school year.  He is reading at nearly a fifth grade level.  He is so incredibly smart, we are so very proud of him.  Discipline wise he has been doing much better at school this year as well, although we do need to work on his talking out of turn in class.  That is about the only thing he ever gets in trouble for, but it's on a pretty much daily basis. 

I got admitted to the nursing program, and will start my clinicals in January.  I am excited and nervous, and have a lot to get done between now and then.  Fingers crossed that I get everything handled I need to!  Other than that, things are going well for us now.  I will try to not shirk so much through the holidays, but I make no promises.  I will continue to update as we learn more on Miss Sunshine and where we go from here with her cleft.

I got accepted!

My acceptance letter for nursing school came this week! I'm so excited and nervous about it. I have a contract to sign, and paperwork to fill out for scholarship applications. And now I have to start checking out other scholarships online. But I made it in! My hard work has paid off and I'm so incredibly glad. It really makes the work of the last year worth it. And I am one step closer to where I feel I am supposed to be. I am also considering becoming a lactation consultant specializing in cleft infants. Because so few LCs have experience or are properly informed about breast feeding and cleft - but I have personal experience. I think that also helps when talking to new parents. I know it would have helped me immensely to have someone who could relate to what I was going through, and I would love to be that person for other people. I'm seriously considering it.

It's cold (and late!)

I am having studying-induced insomnia.  I bet you didn't even know there was such a thing.  I've been going so long reviewing for my upcoming exam that now my brain doesn't want to turn off.  In a way, it's nice, because it's allowed me to do a lot of studying tonight.  But it's also bad, because now I am going to be exhausted tomorrow, which will not be conducive to more studying.  Sigh.

We are having a major cold snap here today - and watching Monster Boy's soccer game this morning was torturous.  It was SO cold, and Miss Sunshine just kept yanking the blanket that I actually thought to take with us off as some sort of game, so it really didn't help much.  We probably looked hilarious - there was Monster Boy trying to run down the field with his hands in his pants pockets (Why boys can never find their gloves is beyond me - we purchased this child three pairs of gloves last year.  Do you know how many pairs of gloves he has now?  None.  He has three mismatched gloves.), me wrestling with Miss Sunshine to keep the blanket on both of us and her hood up on her head, and Daddy Mac zipping his jacket all the way up and jiggling his legs to keep them warm. 

We finally caved and turned on the heater tonight.  Tomorrow we will have to do more home improvement type things, as we found a leak from our master bath tub into the laundry room today.  Fun times.  It looks like the leak is around the drain, so I'm hoping that we just need to reseal it, perhaps replace the drain kit.  I'm praying that it isn't a crack in the tub itself - I don't see one, but you just never know.  The good news is that the ceiling in the laundry room is unfinished, which means we have an unobstructed access to the leaking drain.  The bad news is that it's going to require a ladder and over head work to get this done.  And neither of us have experience replacing or repairing a bathtub drain.  So this should be interesting. 

I know we are really over due for a picture update.  I will try my best to get some work done on that once I get through my exam this week - the coming weekend is fall break for me so I'm hoping that I can get a day or two of non-school related stuff done, including uploading the several hundred pictures currently hanging out on my camera.

Vision

I took Monster Boy and Miss Sunshine in for vision screenings yesterday.  Monster Boy has been complaining of headaches at school, and has been telling his teacher he can't see the screen.  So, in we went.  Since our state does a vision screening program for three year olds that our eye doctor participates in (meaning it's free for us!) I decided to kill two birds with one stone and just have Miss Sunshine checked out as well.

I was a bit nervous going in.  I myself have HORRENDOUS vision.  I've been in glasses since the third grade, and I went from perfect vision to blind as a bat in a summer's time.  Daddy Mac has also been in glasses since about that age, so we know the kid's risk of needing glasses is high.

Since we were taking Monster Boy in for his complaints, I figured our luck would be that either both kids would need glasses, or just Miss Sunshine would need them, because God has a sense of humor with our family on these things. 

Lucky for us, neither kiddo needed glasses this trip!  Monster Boy did have some slight degeneration in vision - at his last vision test he was 20/10 in both eyes, and right now he is about 20/25-20/30 - still within normal range, and nothing that the doctor felt corrective lenses were necessary for, but it does mean we need to keep an eye on him in the future - as it is likely he will at some point cross that line where he needs glasses.  Miss Sunshine has perfect vision, but is showing some signs of a very slight astigmatism in one eye.  That could also have been due to how fidgety she was during the exam, so again the eye doctor wasn't too concerned and said to just continue to have her screened yearly to make sure all is well.

Monster Boy did have to have his eyes dilated as one test came back strange, but once they were dilated everything tested normal.  Of course, he's been milking the "blurry, light hurts my eyes" thing since then - I wound up sending a note in to his teacher letting her know his vision is fine but that he may be complaining today due to the dilation.

Now to figure out why he is having headaches... I have a theory that it's either A) attention related or B) he's getting overheated during recess.  So we are going to try and watch what time the headaches happen and see if it's consistent with recess times.  He hasn't been complaining as much for the last 10 days or so, and it has been cooler here those days, so I'm fairly confident that it's the heat.

The ears have it.

Miss Sunshine had an ENT visit this week.  Our local ENT wants to see us every six months until she no longer needs the tubes, and possibly longer, depending.  So, in we went.

Her tubes are still in place - amazingly.  Her hearing is within normal range in both ears.  Her left ear was FULL of wax, which she would not let the ENT clean out.  He said we may at some point need to sedate her and clear it out, but for now, it's not interfering in hearing or tube function so we will just leave it.  He did say that he is not as optimistic as Shriners about her not needing anymore sets, but we will just keep watching and waiting.  He also said her tonsils are very enlarged, but he would not remove them because it could affect her palate repair and speech.  She has never had an infection in them, or strep throat, so they are just naturally large (thanks, Daddy!).  We will keep an eye on this as well.  It's ironic, really.  Likely the reason she has done so well with minimal nasal tones in her speech is because of the size of her tonsils!

So that's our cleft update for now.  We go back to the ENT in six months, won't see Shriners for two more years.  We are in the maintenance phase now.

I want to take a couple of minutes...

to discuss something with you.

I started this blog to talk about our journey with Miss Sunshine's cleft.  I know that as of late, it's been more about family life and less about cleft life.  But life is full of seasons, and right now it's not a cleft season for us.  Things may change soon, or they may not.  I will not have a lot of updates about cleft happenings until they do, as for right now, Miss Sunshine is considered successfully post-op with no further specialized treatment needed.

What I want to do today, instead, is talk about something else.  Something that most certainly can be counted as cleft related, but also is not.  Confused yet? 

I want to talk to you about depression.  If you have read some of my earliest posts, you may realize that I battled some pretty severe post-partum depression mainly brought on by finding out about Miss Sunshine's cleft.  However, this isn't my first time around the depression track.  I also had delayed onset PPD with Monster Boy.

Depression is that silent monster.  The skeleton in the closet.  The elephant in the room.  People see it, but they don't want to talk about it.  PPD is especially hard.  Because, as a mother, you are fed all this "You should be so happy!  This is the most special time of your life!  Enjoy this all!" mumbo jumbo, and it just leaves you feeling even more guilty when you don't feel that excitement, happiness, or joy. 

The reality is that depression exists.  It can be very hard for people to admit they are suffering from it.  It can be very hard for people to realize they are suffering from it.  With Monster Boy, I was ANGRY.  SO angry.  All the time.  Never at him - he was my joy, and I did find joy in being his mom.  But at the world in general, I was just angry.  And I reached a point when he was about 18 months old, that I said to myself, "This isn't normal.  You should not be mad all the time."  And so I went to see a counselor.  Imagine my surprise when I was told I was suffering from depression!  That was not the answer I thought I would hear.  But after several counseling sessions, it was decided that medications were in order.  I spent six months taking an antidepressant, and I finally felt back to my old self again!  After six months, I was able to stop using anti-depressants and regained my equilibrium.

When Miss Sunshine was born, depression set in almost immediately.  I really struggled with it.  I had the typical "baby blues" - crying, sleeplessness, lethargy, a general down feeling - only amplified about ten times.  I honestly think I cried at least once every day for the first three months of her life.  I had a very hard time bonding with her - something that still causes me grief to this day.  I blamed myself for her cleft - what had I done wrong?  I had failed her somehow, I was sure.  The truth is - I did nothing wrong.  It was not my fault.  It was just one of those things that happen, and we will probably never really know why.  But to a new mother, whose hormones are already crazy out of whack?  Those answers just aren't good enough.  After about six months of really struggling - with daily and weekly crying spells - I finally went to my doctor.  He told me that he was going to give me one more month to come to him before he came to me himself - and said he was surprised I made it as long as I had.  We started antidepressants that were safe for breastfeeding.  After about four months, they really weren't helping.  We switched to another antidepressant, and again, I didn't feel a change.  After the third antidepressant, I finally made the decision to just stop.  I was getting all of the side effects of antidepressants, and none of the benefits.  I am still operating under a diagnosis of depression, but I am unmedicated.  At this point, the depression is not significantly interfering with my life.  I more likely have a condition called PMDD than true depression now.  My levels of depression fluctuate with my monthly cycles.  I do have weeks where my temper is too short, where I get angry too easily, where I cry at the drop of a hat, where I just want to stay in bed all day long.  But, it is not continual, and I don't let it define me.  I make myself get out of bed (because honestly, I don't really have a choice), I try to seperate myself when I can feel that my temper is getting to a breaking point.  I have coping mechanisms and I struggle to use them.  I may, in the future, attempt the use of medication again - after all, I did have success with it the first time around.  It was truly life changing for me back then.  But for me, for now, simply admitting to my depression is working enough. 

I guess I just want to give a face to the concept.  So many women I know have struggled with depression, but are afraid to admit it or to seek help.  There is such a stigma surrounding depression - as if it is somehow our fault for being this way.  As if we are too weak to handle life.  The truth is that depression is a REAL illness - there is a physical reason for why we are depressed.  It is a chemical imbalance - our body either does not produce enough of a specific hormone, or does not accept enough of the specific hormone into receptors.  Depression is nobody's fault - it just is.  And having it does not mean that we are weak.  It means we are real.   We are human.  And sometimes, we just need a little understanding.

Nerves

I dropped off my application for the nursing program today.  Right now, I am pre-nursing.  This application was for the professional (read:clinicals) portion of the degree I am pursuing.  I feel like I have a good chance of getting admitted, but I won't know for sure until late October.  Talk about stress!  Even though I think I am at the top of the application pool, the reality is that in life there are no guarantees.  Just because I think I have a good chance of getting in does not guarantee that I will get admitted.  And that just keeps running through my head, over and over.  If I don't get admitted, I don't know what I will do.  The last year and a half will have been effort expended for nothing.  I can always apply to other schools, I suppose, or even this same school again.  But I've worked so hard to follow this pace, I really don't want a setback.  Ugh.  I am a worrier by nature so the next two months are going to be pretty long here in the Mac household.

Monster Boy is back at school!  So far he seems to be doing well.  We've had a couple hiccups - but, he's a seven year old boy.  I don't expect perfect behavior from him all the time - I just expect him to do his best.  Yesterday and today he hasn't been doing that, so we are going to have to revisit this issue.  We had a long talk this morning, but I'm not sure it made much impact.  I guess time will tell.

Miss Sunshine is as crazy as ever.  With my new work schedule, she's had some adjusting to do.  She's doing fairly well with it so far.  She cracks me up on a regular basis.  Tonight, I had some grapes after dinner.  After seeing the grapes on my plate, she promptly went to the fridge to make sure I hadn't eaten all of the grapes.  When she didn't see any grapes in the fridge (there was a whole bag in the crisper) she promptly ran to her daddy and fell to pieces because "Mommy ated all my gwapes!".  When Monster Boy informed her I hadn't, she immediately responded with "Well, you go look in the fwidge then, because I looked and I didn't saw any more gwapes!".  He wound up carrying the entire bag of grapes in to her room to prove to her that there were grapes left.  See?  A mess.   An awfully cute one, but a mess all the same.

I need to call and set up our follow up with the local ENT.  She's been complaining about her ears "itching" a lot lately - usually a sign of wax build up.  At least she isn't complaining that they hurt.  I know he will look at her ears, check the tube placement, clean out some wax and probably do another tympanogram and possibly a booth test.  I am always nervous about this because of our past difficulties with the tubes not wanting to stay in place.  And because she already had signs of scar tissue in her right ear, and that's the tube we've had the most issues with, I get nervous.  The ENT at Shriner's felt that she may not need any more sets of tubes, as when he replaced the last set there was no fluid in her ears - but that could have been an air bubble from anesthesia too.  The only way to know if she needs another set or not is to let these fall out and see what happens.  Part of me is hoping the tubes are no longer in place now, so we can monitor and see rather than waiting for them to come up.  The other downside is that because she's had the tubes for so long, there is a chance her eardrums have scarred around them, meaning once the tubes DO come out, the holes in her ear drums may not heal.  If that happens, she will need a graft surgery to correct that.  Of course, we had no choice but to risk that possibility because of her cleft.  Hearing is just such a touchy thing, anything to do with her ears makes me apprehensive.

So, that's where we are for now.  I'll update after we see the ENT.  September is Craniofacial Acceptance Month and I am hoping to have some good posts about our cleft journey to coincide with all of that. 

Where did the summer go?

Wow.  This summer flew past!  I don't know where all the time went.

Well, we were busy, that was for sure.  I took Microbiology this summer, and between classes every day and work every night, there was just no time.  This semester coming up will be the reverse - work in the morning and class in the evening.  I'm hoping it won't feel as hectic, though, since I'm only taking two classes this semester.  I turn in my nursing program application next week - and I'm praying I get accepted to start in January. 

Daddy Mac has been working hard, as always.  I am incredibly blessed to have his support in my schooling efforts, despite the stress it has to impart upon him.  Sometimes it feels like the last four years have been a trial by fire - but that's how the strongest steel is forged.  I am so grateful to have the love of  such a great man, for myself and for our children.  I look forward to the days when I can support him in following his dreams as he has done for me.

Monster Boy has done fairly well this summer.  He still struggles every time I start classes again.  I'm not sure where this fear comes from - he is paranoid about me going to school.  Each time I just try to reassure him that I am doing this for all of us.  I've gotten counseling information just in case.  Hopefully we won't need it and the transition will go better this time.  He is ready for school to start.  My big second grader this year!  I can't believe he is already that old - the time really does fly by.  Soccer starts again for him next week, Boy Scouts will start up as soon as the school year gets going, and he's also throwing around the idea of doing gymnastics, or karate, or piano lessons.  On top of the sacraments he will be recieving this year, it's going to be a BUSY BUSY year for him.  I've already told him he has to pick one thing and one thing only, because anything else is just going to be too much.

Miss Sunshine is as crazy as ever.  She's so smart.  I'm really disappointed we weren't able to get her in to preschool this year - she's absolutely ready for it.  Unfortunately, due to budget constraints, the kids school dropped their three year old preK program.  And the decision wasn't made until so late in the year that there weren't any openings at any other nearby programs for us to put her in.  And since Early Intervention has decided she doesn't need any further services (Yay!) she doesn't qualify for Head Start or any of the public preK programs for three year olds here.  So she won't start until next year.  Which is okay, but I would have liked to have her in school this year.  Such is life.  So instead, we will work on what she needs to know at home - she already knows the basics, all I need to work on her with is writing her name and knowing our phone number .  I'm hopeful that this will be an easy learning experience for her, and I've already stocked up on lettering pages and notepads. 


So, life is moving on in the Mac household.  I'll try to keep up more once we get settled into our routine.  Miss Sunshine will be having an ENT follow up sometime this month to check on her tubes, and probably clean her ears out again, as she has had a lot of wax buildup lately.  Other than that, it looks like it will be basic well child care for her for the next two years - I may request a speech evaluation once she starts preK, and we will do follow ups with the local ENT every six months until this current set of tubes come out or stop functioning.  Then they will monitor her for a couple of months to see if it's necessary to place a new set - her ENT at Shriner's thought she may not need more as there was little to no fluid in her ears when she placed the last set.  Of course, that's something we just won't know until the current tubes stop functioning and we can see if she has fluid build up or not.  Since every child differs, there is just no way to know.  At this point, it looks like she won't need addition palate procedures, but of course we can't know that until she grows more!  We are in a holding pattern for now - but she's doing everything as perfect as she can, so we can only pray that trend continues.

Busy bees

We've been crazy busy around here lately.  I'm sorry I've done so bad about updating. 

Monster Boy and his teeth are killing me.  Today was visit number four to the dentist in two months.  This time we walked away with a crown on one of his teeth.  Sigh.  I really thought Miss Sunshine would be our orthodontic nightmare, but it's turning out that Monster Boy is the one causing problems!  I was also informed that he will need braces soon - probably within the next two years.  The dentist said that they would need to go on as soon as his four front teeth came in.  He has a condition called "twinning" and as a result, his front teeth are almost twice the size they should be.  So, we have to get brackets on those teeth and get them moved out of the way so the rest of his permanent teeth can come in correctly.  Otherwise we will be running the risk of one (or more) of his permanent teeth eroding the roots of OTHER permanent teeth as they try to come in.  Sigh. 

Summer is in full swing at our house, and it is crazy busy.  Between classes for me every day, work for me nearly every night, baseball practice and games for Monster Boy, and family time in between, it feels like we are non stop running these days. 

Miss Sunshine is doing well.  I don't really have any new updates on her since we won't be seeing her cleft team for TWO MORE YEARS!  I am in complete awe over that still.

I guess that's about all the updates I have for now.  I'll try to get some more amusing anecdotes up soon - Miss Sunshine and Monster Boy have both been full of them lately...

Summertime...

It's the first full day for summer break for Monster Boy today.

Miss Sunshine and I are full on the throes of some massive allergy attacks.

I need to update about our dentist visit from Monday.  But that will wait for another day, because I don't feel like doing it today.

We are hiding inside in the air conditioning this afternoon since two of the three of us are not feeling well.  I hate that we've spent the whole day inside, but when you can't breathe, stop sneezing or stop coughing, 90+ degree weather is not where you want to spend your day.

Monster Boy is going camping with his Dad this weekend.  I'm nervous - he's never been to the lake without me, and there will be a billion people there since it's a Holiday weekend.  But, I don't get a say in whether or not he goes, so I've just gone over and over our safety rules with him and I have to trust that his Dad will watch after him.

We are not doing anything exciting for the holiday - Daddy Mac and I both work this weekend.  We will go to our family graves on Monday, to place flowers and such, and then have a small cookout at my grandmothers.  That is the extent of our plans for the weekend at this point.  So, I'll try to make it back here to give some real updates and posts, before the insanity of classes pick up again.

Some good news...

We made it home safe and sound from our Shriner's trip!  Miss Sunshine did so well on the plane, I was very proud of her.  She did okay in the hotel, but when it came time for bed, she cried and said she wanted to go home.  It took some convincing but I did finally manage to get her to sleep. She's a bit of a bed hog, so Mommy didn't get as much sleep, but that's okay!

Wednesday was a LONG day.  Team cleft visits always are - we saw 5 doctors (Dentist, Orthodontist, ENT, Plastic Surgeon, and Child Psychologist) in one day, plus a Medical Photographer, Social Worker, Nurse Practitioner, RN, Audiologist and Speech Therapist.  And they did dental X Rays for the first time this visit as well.  Phew!  Miss Sunshine is still a peanut, weighing in at 29 pounds, and 37 inches tall.  Long and skinny... just like Daddy.  Everyone was astounded by her.  They told us she could not be developing and recovering more perfectly!  The speech therapist agreed with our local speech team that she no longer needs speech therapy.  The child psychologist agreed with the cognitive assessment we had done here (despite Miss Sunshine deciding to talk in baby talk the entire time she was in the room - stinker!), the social worker gave us some paperwork for assistance with dental care down the road, as she will likely need extensive orthodontics, the dentist said her teeth look great and he has no major concerns - just to keep up with twice-yearly visits and keep an eye on her developing underbite.  The ENT said her ears look great, she passed her hearing tests with flying colors, and both tubes are still in place and functioning.  He even said he feels this may be the last set she needs - he wants us to follow up with our local ENT periodically to check hearing and function of the tubes, but if she loses one, he doesn't want to rush to replace it, he wants to give it a few months and see how she does without it - when they placed this last set, there was no fluid in the left ear at all, and he thinks it's a sign that her palatal muscles are beginning to do their job.  All in all, it was a fabulous (if tiring!) visit.  And the best news is - they don't need to see her back for TWO years!  Yes, we get a two year reprieve from visits unless something major comes up that our local doctors don't feel they can handle.  But at this point, she is a totally normal little girl who just happened to have a cleft palate at birth, but her surgery has been deemed a 100% success now that she is two years post-op.  I can't being to describe what a huge weight this is that has been lifted off our shoulders.  Even though all our local doctors have said she is doing well, you just never know until you get to a team visit - you can think things are going perfectly and then find out that really they aren't.  But they are going perfectly this time - and it's just the kind of break we needed!

Preschool.... or not.

We got some disappointing news this week about Miss Sunshine's preschool enrollment.  Without going in to a lot of detail, in the end, the school effectively eliminated the three year old preschool class.  While I understand the reasons, it does not lessen my disappointment in both the canceling of the class and the way the situation was handled.  I am trying to be understanding about the position the administrators have found themselves in, but the truth is, I felt disrespected.  And the fact that this was handled via a one page letter, and then at a meeting tonight, AFTER parents called and complained, found out that even the scenario the letter outline (which included a cost increase of more than double) wasn't even accurate due to licensing situations with the daycare they were planning to move the preschool program to, I do think that the situation could not have been handled more poorly had they tried.

We had our reasons for choosing to enroll Miss Sunshine in preschool now.  I know that three year old programs are not necessary, or even popular.  We did not feel that academically or socially she needed this program.  Our reasons for choosing to put her in the program centered around getting her used to the school environment and away from me.  Because she is with me, pretty much all the time, or family members, she is rather clingy.  Two days a week for a few hours seemed like a good way to transition her to the school environment, as she will have to go to school five days a week for half days next year.  Since the preschool option we enrolled her for is no longer available, she will not be attending preschool at all.

Disappointed barely begins to sum up my feelings on the matter, but it's all I've got right now.

Time flies...

I can't believe it's already May!  Where did this year go? 

We finally heard back from Shriner's last week - and we go there in two weeks!  Ack!  They had a cancellation for their next clinic, so we had the option of the clinic the second week of May, or waiting until OCTOBER.  So, I chose May.  It's going to make things a little crazy that week, and necessitate postponing our planned garage sale, but it's what we have to do.

I'm excited and nervous all at once for this visit.  In our opinions, Miss Sunshine is doing beyond phenomenal.  Her cognitive abilities are through the roof, her speech is fantastic, she passed her last hearing tests with flying colors.  On the other hand, we are not the medical professionals.  And it's entirely possible that all the things we think are going great are really not.  When you are dealing with something like cleft, things can change so rapidly as our children grow.  Things like scar tissue causing growth restriction on her palate.  We already know that she has a slight underbite, from her dental visits.  We know we are in for lots of (expensive) orthodontic work.  What we don't know is if, as she grows, the size of her palate will cause issues with speech, etc.  It's not something they can predict, they can only take a wait and see approach to it.  So every visit is a little tense for us because the truth is we just never know.  However, I'm choosing to expect that she'll pass everything with flying colors, as she has for the last year, and that our visit will turn out great, as usual.  The stress of traveling with a three year old is really higher on my concern list than anything else right now.  Although, we made so many trips up to now that I pretty much have it down to a science.  I'll be bringing some pullups as a backup, because even though she is potty trained, travel can be disruptive for a kiddo.  But I can pack everything we need into one backpack, with a small backpack for her filled with entertainment items for the flight.  We have the travel rack with wheels for her carseat (that's really the most difficult thing to maneuver on our trips) and typically I would put her seat on the plane since she now has her own seats on the flights.  I learned from experience last time, however, that the new airline they fly us in on has SMALL planes and it's a massive pain in the neck to lug that thing down those narrow aisles - so we will be gate checking the carseat - and I'll be taking my chances that they won't break the wheels and leaving it strapped to the rack so I'm not holding up people at the gate trying to get it reassembled.  This should be interesting, to say the least.  I will admit, I'm looking forward to the time when we can travel without a carseat at all, although that's at least 6 years into the future.  Oh well, you do what you have to in order to make sure your kids are safe.

Of teeth and other things...

So, Blogger changed their posting format.  Bear with me through any technical difficulties we may experience as I try to figure this out!

So, our trip to the dentist was last week.  Miss Sunshine did wonderfully well this go round - last time the most she would let them do was look in her mouth.  This time, she let them do everything (except xrays).  Now that her canines have made their appearances (although they do no seem to have come in fully, or else she has very tiny canines) the dentist was not so concerned with getting xrays and said we would wait until she was a bit older and less fidgety.  But her teeth look fabulous.

Monster Boy did not fare so well.  We are currently going through what I like to call the "dirty boy" phase - the one where they are allergic to water, it seems.  I don't struggle as much to get him to bathe, because he has to use special organic handmade soaps to help control skin issues and he now takes showers on his own, which is apparently a big sign of major adulthood (wink!).  But teeth brushing?  Yeah.  No matter how many times I remind him EVERY morning to brush his teeth (morning routine consists of four things - take a shower, get dressed, eat breakfast, brush your teeth), half the week he seems to leave the house without doing so.  I've told him time and time again the importance of brushing his teeth and how not only does his mouth smell bad when he doesn't, but he'll wind up with cavities.  Well.  Guess who wound up with cavities?  Yep.  Three of them.  Probably not the end of the world in the grand scheme of things, but for someone who has never had a cavity in their life (yes, you read that correctly!), it is very bothersome to me.  Not to mention the whole rabid fear of needles thing he has going on.  We go back the middle of May for his fillings, and I am definitely not looking forward to this experience.  Sigh.  Hopefully it will teach him his lesson about brushing his teeth and we won't have this issue going forward. 

Life is moving right along, as usual.  I have lots of cute pictures from the weekend and from getting to meet my beautiful nephew for the first time.  I have to check with my sister first and make sure she is okay with me posting pictures on here.  If not, I do have pictures of my kids, even if you are tired of seeing them!  I missed a call from Shriner's today about scheduling Miss Sunshine's appointment, so I will call them back tomorrow and hopefully have an update on that soon.  For some reason, these trips are always nerve racking to me, even when I expect good findings.  And it's looking likely that Daddy Mac will be the one taking the excursion with her again - and we all saw how well I did with that last time!  Only time will tell, but I will keep you posted.

We survived a tornado...

That sounds kind of dramatic. Given the fact that the damage to our home is minimal, and our neighborhood fared very well, it seems crazy to say we survived a tornado. But it's the truth. I believe by the time it got to us it was actually no longer on the ground, because it was half a mile wide (at a minimum), so the fact that we have minimal damage just doesn't seem possible. So, here are some photos for you guys of our area.

The Tornado as it first enters the city.  I did not take this photo, this is actually a screenshot from video shot by a storm chaser.  I am not sure where it originated, so I can't properly credit it, but want to make it clear I didn't take it, and am not claiming it as my own property

Damage about one and half blocks from our house - hardest hit area in our neighborhood.

Damage to the park located right next to our neighborhood.  This is directly across the street from the previous picture, and is also less than a mile from our house. 

Look closely, that tree is completely uprooted.  This is about half a block from our house. 

Damage to the gas station located at the nearest major intersection to us.  You can see them working on one of the three power lines that were taken out.

Apartment complex just up the street from the gas station.

Our backyard.  It's hard to tell from this angle, but the fence is leaning severely and is very wobbly in several places.  It also took out our window well cover - it was blown up against the fence at the back of this photo.

Our back porch the day after, before clean up.  That is our gas grill in the background.

Our gas grill, completely blown over.  This doesn't seem that impressive, but considering it's gone through 70-80 MPH straight line winds and hasn't moved an inch, something big got a hold of it.

(Sorry, Blogger decided it would not let me caption that last photo, no matter how hard I tried!)

I would have a taken pictures of the damage in our front yard, which mostly consisted of large branches belonging to trees that are not ours all over the yard and porch, but our fantastic neighbors cleaned all that up for us while we were taking our food to a working fridge.  We are without power and they are estimating 1-2 days before we get power back in our neighborhood.  We have one or two shingles missing off our roof, so we will call insurance and have them come inspect it to make sure that there is not additional damage we are not seeing, or don't know to look for.  Hopefully there is nothing.

We are incredibly thankful that we came through this as unscathed as we did.  We were hunkered down in our basement, as protected as we could make ourselves.  When it got to the point that the tornado was headed for us we put the dog in her kennel, pulled Miss Sunshine in with us (she was not pleased, and wanted to go to bed in her bed - upstairs) (Monster Boy was at his dad's house on the other side of town, out of the path of the tornado, thankfully) and covered up with cushions and watched as much as we could until the power went out.  Shortly after the power went out, we heard lots of loud hail and rain, and then sudden silence.  Daddy Mac and I looked at each other, and right at that moment heard a loud WHOOSH.  A lot of people talk about it sounding like a train, but that is not what we heard, but we definitely heard it.  It was probably one of the scariest experiences of my life, but we survived. 

Easter 2012

Just a quick post to say hi and share some pictures!  I'll get to updates later this week after I HOPEFULLY hear back from Shriner's regarding Miss Sunshine's next visit. 

But for now, I leave you with my rather pitiful attempts at getting good photos of my children.  What is it about kids that dictates that you cannot have all your children looking cute/pretty/not totally ridiculous all at the same time?  These are some quick shots with my phone - I haven't uploaded the pics I took with my camera yet, so I will post those later - I did get better shots with the camera, I think.

Miss Sunshine is starting to get into the silly face stage... This is now what "Cheese!" looks like.

I managed to snap this one prior to any smiles - right after telling Monster Boy to sit up straight because he kept slouching over.

This one would be adorable if Miss Sunshine didn't have that crazy look on her face...

Our pretty Easter eggs - Tie Dyed and glittery - because that's how we roll...

Spring

The weather has been crazy here the last few weeks.  We pretty much bypassed winter altogether and had upper 80's for temperatures last week.  It's going to be a long, hot summer it looks like.

Things are still crazy busy around here. Soccer has started back up for Monster Boy, and he's loving it. I am seeing vast improvement in his ability this go round as well. As long as he enjoys it, I'm happy to let him keep playing.

First practice of the season

His team has played two games so far, and it's obvious the boys have played together before.  All of his current teammates have been on his last two teams as well, and it shows.  Even though they've only had three practices, they play together like they've been practicing together all year. 

Monster Boy in white, heading down field

Miss Sunshine is crazy as usual as well.  We are (knocking on wood) finally successfully potty trained around here.  Even at night!  She has done very well lately, and we are very proud of that.  We also pre-enrolled her in preschool for next year!  I can't believe she is old enough to go to school.  But she is ready, we are confident at that, especially based on her evaluations in November.  She will attend the same private school that Monster Boy goes to, and even has to wear uniforms like Monster Boy does.  We came across some teeny tiny jumpers at the used uniform sale the school had during parent-teacher conferences last month, and we jumped on them.  She looks absolutely adorable and oh-so-grown-up in them.  I can't believe my baby is so big!

Oh so grown up!

We have also been spending lots of time at the park.  Miss Sunshine loves the swings.  Monster Boy is a blur from the second we get there until we leave - so, while I have gotten several cute photos of Miss Sunshine playing, I have zero of Monster Boy.  We have also taken Wonder Mutt, our dog, with us several times.  (The dog's name is actually NOT Wonder Mutt - it is Chloe!- but we frequently call her Wonder Mutt so that shall be her nickname here.)

Mommy playing with camera angles

Loving the swing, the sun - not so much.

Wonder Mutt hanging out by Monster Boy's bike while we play.

We are all looking forward to Easter this weekend - it's an important time for us.  And in two more weeks, we finally get to meet the newest member of our family - my nephew!  He was born at the end of February, and since my sister and brother in law live several thousand miles away from us, we have not gotten to meet him yet.  They will all be coming here to have him baptised, though, and we can't wait!

The next few weeks will be hectic as classes wind up for me and school comes to a close for Monster Boy.  We will have about a week and a half break before summer classes start up for me, but the end is getting nearer, and we are all looking forward to the short break.  I will try to stay up to date on here as we get our next Shriner's appointment for Miss Sunshine, as well as her ENT follow up.  We also have a dentist appointment coming up next week - and her last canine FINALLY decided to make it's appearance last month!  We shall see if we can successfully get a set of xrays to see just what all is going on in there.   For now, though, I'm going to head to bed - we have all sorts of busy-ness going on tomorrow, starting with work bright and early for all of us!

Spring Break

I remember a time when Spring Break meant doing NOTHING for an entire week.  Sleeping in, ignoring school work, hanging out with friends...

That is not what Spring Break is in our house these days!  My children, darling as they are, do not understand the concept of sleeping in.  In fact, they wake up EARLIER than normal for some strange reason!  There is tons of housework to be done - I will be honest here, and admit that I have overwhelmed myself with school, work and kids this semester, and my housework is paying the price for it.  I have laundry to catch up on - it seems never ending, even if it is half of what I was doing this time last year (since Miss Sunshine is now potty trained, no more washing cloth diapers.  Which makes me happy, and kind of sad, all at the same time).  The floors need mopped since it has been raining nonstop since Sunday and my dog simply doesn't understand the concept of wiping her feet (haha!).  I have a goal to finish one of my online classes this week so I don't have to worry about it for the rest of the semester.  I also have two papers I want to get written this week so I don't have to deal further with them as well.  And I need to catch up on listening to my online Nutrition class lectures as well as get to work on the massive project I have due in that class.  Add in to that the 23 hours I am working this week (including two shifts tomorrow - it's going to be a long day for all of us!) and it's just not the Spring Break I remember!

We are still waiting on a call back to schedule the date for our next clinic visit at Shriners.  We need to call and reserve a hotel room for our family reunion this summer.  We have to pay the balance to have our roof replaced.  The van needs a lot of work done to it.  I hate money.  And bills.  And being a grown up.  Sigh.  I just keep telling myself we just have to get through two more years, and then things will be a lot different.  Our income will more than double once I go back to work.  I think we won't know what to do with ourselves with that much money, hahaha!  It will be nice to be able to put money in savings instead of worrying about bills every paycheck, though.

This is turning into a novel of a post, so I'll come back with other posts later on updates on Miss Sunshine and Monster Boy.  They have enough news to have entire posts of their own too!

Wow

So time has totally slipped away from me!  It's amazing, really, how quickly things go these days.

I'm not sure if I updated on here or not, but we made a trip to the original ENT that Miss Sunshine saw for her cleft a while back.  At her 3 year well child check, I mentioned to our doctor that I was a bit concerned about the notes we had received from Shriner's classifying her with moderate hearing loss in her right ear.  Of course, this was all while she had a non-functioning tube in that ear, so I wanted to have her hearing evaluated again.  He was game to send me to an audiologist, but when he took a look in her ears, said he couldn't see ANYTHING but earwax! So off to the ENT it was, to get her ears checked out, see if the impacted wax could be removed and see if the tubes were still functional.  Miss Sunshine did beautifully at letting the ENT dig his little scoop into her ears, even though she was definitely not pleased about it.  He was able to get enough wax out to see her tubes, and they are both still in place!  This is now the longest a set of tubes has lasted in her ears.  So off he sent us to see if they are still functional, and they were.  Not only that, but she successfully passed a booth test for hearing in both ears.  It was pretty entertaining to watch her take it, but she did great.  He said normal range is between 5-15 decibels (I think that's what it was, maybe it was Mhz, I can't really remember now!).  Miss Sunshine tested at 10 in the left ear and 10-15 (because of her age, they do a range if there is some discrepancy, because children at this age are notoriously hard to get accurate readings on) in the right - so normal range in both ears!  Yay for good news on hearing - this is my major concern these days.  Her palate repair was so successful that we likely will not need further surgeries (although this is of course not a definite...) so most of my worry has been focused on the hearing.  Now that we have resolved that, I can relax a bit until our next trip to Shriner's sometime this summer... we will also have a follow up with our local ENT in six months as well, to make sure the tubes are still working as they should and we don't have further issues with the earwax impacting against the tubes.

That was pretty long and I do have more updates to make, so I will try to get back here soon to do that - I've had a post typed up since Miss Sunshine's birthday, I was just wanting to add pictures to it which I haven't loaded onto my computer yet, if that gives you any indication of how behind I am these days!

A mommy day

No, not a spa day or day off.  A Mommy day.  You know, one of those days where you realize your babies aren't really babies anymore?  Yeah, one of those days.

I spent the weekend reorganizing Miss Sunshine's bedroom.  In the process of doing that, I hauled out my storage tubs (one for each kid) of baby clothes in order to put a few of the items of Miss Sunshine's that I wanted to keep that were still in her room in them.  So, I decided to go through the tubs and see if there was anything I would be willing to part with.  I do this about once a year, trying to cut down on what I am saving.  Monster Boy's clothes have been pretty well cleared out - I don't keep much of his anymore, unless it has special meaning, like his soccer shirt (when he eventually outgrows it) or his school t-shirts.  I still keep quite a bit of Miss Sunshine's stuff, because it's so hard to part with things when they are little.  But I limit myself to one tub for each child so I don't keep too much.  The idea is that I have boy and girl items if we decide to have another baby.  And, once we decide we are truly done, I will keep only the most sentimental items, because I am going to make a memory blanket for each of the kids for their high school (or perhaps college, I may want to put some of their college shirts in there, who knows) graduations.

Anyway, back ot the topic at hand.  I was going through sleepers and onesies, and it hit me just how big my kids are now.  Monster Boy turned SEVEN in December, and Miss Sunshine will be THREE next week.  How did that happen?  Where did the time go?  It just doesn't seem possible!  I have baby fever in the worst way, and also have the knowledge that NOW would not be a good time to have another baby.  Which makes me a little bit sad.  But I know that it would be better to wait, until I am done with school, and we are in a better financial position, to have another child.  It puts a bit more space between kids than I really wanted to have, but it's what is best in the long run for our family.  So, we wait, and we see if time is ever really right to have another baby.  I pray that it is, as I know Daddy Mac does, because we both really feel our family is not complete.  But we will accept that this is our family and not love anyone any less even if we don't have another child.

It's amazing how reflective a tub of baby clothes can make you...

Still trying not to be angry.

I'm still frustrated over people.  Total strangers whom I would never meet in real life, but who, through words or pictures or illustrations or whatever, have impacted my life.  And not in a good way.

I guess my problem is that I just don't understand.  One can claim ignorance, I suppose, but sometimes that feels like a cop-out.  If you are going to make a public statement of one kind or another, one that you know will most likely be highly controversial (and I'm sorry, but you cannot tell me that you didn't know that making a statement regarding abortion, or drawing a picture involving a birth defect is not going to be controversial...), wouldn't you take the time to educate yourself about it first?  I mean, really?

I don't make what I consider controversial statements on here.  But even the statements I do make, come from information that I gathered, either through the course of our own personal experience with cleft, or by my own research as I search for answers to my questions.  I don't pull things out of my hat, or left field, or make things totally up and expect people to not question why I said what I did or did what I did.  I hope that makes sense. 

Perhaps the truth is that really I am just hurt.  My daughter is PERFECT.  She is exactly the way that she was meant to be.  It may not be the way I imagined she would be.  It may not be the "perfect" that most people would expect.  But she is perfect.  Now that we are (nearly) three years in to this journey, I just can't imagine her any other way.  She wouldn't be my Little Miss Sunshine.  It took me a very, very, very long time (nearly three years!) to reach this point.  I, out of all of our family probably, had a very hard time accepting and adjusting to the idea of her cleft.  I'm not really sure what that was.  I imagine it probably had a lot to do with not knowing about it until she was born.  I'm a planner.  I always have been.  And I had a plan for this little girl.  And when she came, that plan got thrown right out the window.  Because that plan would not work for her.  And I just had a very hard time dealing with that.  It really messed up my whole world.  For a long time, I felt like a bad mom for feeling that way.  I felt like something in ME must be really messed up to feel angry, and sad, and a whole host of other emotions.  I felt guilty.  I know now that those are normal feelings.  It is normal to feel a loss when your child is born with a defect of some kind.  Because you plan for one thing.  And you get another.  And it takes time to make up a new plan.  And you need time to let go of the old one.  It's NORMAL.  So maybe I'm hurt by the fact that these people don't even take that pain into consideration.  That they don't see my daughter as perfect, as a gift, the way I do.  Instead, they see her as a punishment.  Or a joke.  A caricature.  But the truth is:  She is none of those things.  She is just my daughter.  My perfectly beautiful, perfectly funny, perfectly cute, perfectly crazy, perfectly spoiled, perfectly loving, perfectly perfect little girl.  I just wish that those people would take the time to see her that way, the way I do.

One year, maybe, people will THINK before they speak...

Once again, I find myself in a position of anger.  Anger at a person in a public position who, aside from being woefully uninformed, has used said position and made statements that are beyond hurtful to those with any kind of disability.

This actually occurred nearly two years ago, apparently, although I just learned of it today.  And what I learned sickened me.  No, it beyond sickened me.

I have long avoided using this blog as a platform of any kind.  I share things regarding our family life, our journey through raising a child with cleft, things I find interesting.  I tend to steer away from hot button topics like politics, simply because I just don't feel that this is the place for those things.  I have my beliefs.  It doesn't matter to anyone but me what my personal beliefs are, and I feel no need to shove those beliefs down someone else's throat.  I know not all people feel the same way that I do about anything, and I respect that. 

Tonight, I find myself in a position to bring up politics on my blog.  But, this is something that I simply cannot avoid addressing. 

Apparently, in 2010, Virginia State Delegate Bob Marshall gave a speech at an event.  The speech was a call for Virginia to stop state funding to Planned Parenthood.  In his speech, he said that children with disabilities were God's punishment to women who had abortions.  Yes.  You read that correctly.

Here is his exact quote, from cbsnews.com, from THIS article:

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically," he reportedly said. "Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children."

"In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord," he added. "There's a special punishment Christians would suggest."

 

He later posted a statement saying that what he said was misinterpreted.  (This is also discussed in the above referenced article).  I fail to see HOW what he said could be misinterpreted.  It seems very clear to me.

 

As the mother of a child that has a disability (whether visible or not, her cleft is considered a disability), I am extremely offended by this statement.  Regardless of your view on abortion, this is reprehensible.  I have never had an abortion.  I certainly have never even considered an abortion.  In fact, I became a single mother rather than make that choice.  Yet my daughter was born with a disability.  She is my husband's first born child.  This whole idea makes me sick.  Simply sick.

 

I have long been taught that abortion is a sin, since I am Catholic.  Regardless of what my church teaches on abortion, my church also teaches that Christians forgive.  That Christians love unconditionally.  That Christians should not judge, but should rather preach God's love.  THIS, this entire situation, this is NOT being a Christian.  I feel that it only makes matters worse that this man is a political figure, who makes these statements to the masses. 

 

I find myself at a loss as to how to educate close minded individuals like this.  Whether he posted an apology, recanted, or whatever, the fact is that those words left his mouth.  IN PUBLIC.  In a forum that was later spread worldwide courtesy of the internet.  And that there are people out there who will believe what he said.  The fact that he said it in any context is a true example of his ignorance.  The fact that he is spreading this ignorance is even more sickening.  How do you truly educate someone who says and thinks things like this?  I don't know that you can.  But, I can and will certainly let this man know, in no uncertain terms, how wrong I know he is.  He has recently announced that he will seek national office.  I hope that any of you who feel so compelled will reach out with me to let him know that this is not okay.

 

God does not punish his people for their sins.  God loves all his people, and forgives them their sins.  My daughter, with her disability, birth defect, whatever label you want to put on it, is NOT a punishment.  She is a GIFT.  A wonderful gift that we were blessed to have, not because God felt the need to punish us, but because he felt we were strong enough to care for her the way she should be cared for. 

Two years!

It's been two years to the day (today!) that Miss Sunshine had her palate repair.  I can so clearly remember that day like it just happened this morning.  The worrying, the stress, the waiting, the fear.  In the end, it was all worth it, and we came away lucky.  Miss Sunshine had what I would term an easy recovery compared to most.  She was drinking breast milk within two hours of coming out of anesthesia, and by the next morning was eating more than she had eaten in her entire life.  Her healing was picture perfect, no fistulas, she didn't fight the arm restraints, she did well with the syringe feeding.  All in all, we were so very lucky.  I have no doubt that the wonderful, amazing staff at Shriner's Hospital had much to do with that.

Miss Sunshine with Memaw immediately after surgery.

Not happy about being awake.

Miss Sunshine the day after surgery, asleep after breakfast.

Looking back, it's a wonder how well she did.  We flew home less than 48 hours after surgery.  Her restraints got lots of stares for a few weeks, as did her syringe feedings out in public.  But, in the end, we were blessed.  Now we have an almost-three-year-old who no longer needs speech therapy or any other services.  She is being released from care by Early Intervention, and she tested higher than any child has ever tested at her age on the cognitive portion of her evaluations.  She is developmentally delayed in the r/w speech pattern, but that is the only one that she tested beyond normal in, and the speech therapist believes that it is really already starting to resolve itself and she needs no further assistance with it.  

The weight on our shoulders has been great these last three years.  The tears, the fear, the acceptance, the searching, the surgeries, the worries... but now.  Now I look at my daughter, and I am so grateful for all we have been through.  It makes me appreciate things so much more.  I can't help but look forward to what the future brings. 

Miss Sunshine with her special cleft palate bear from Monte's Bears for Clefts

(If you are interested in donating for a child to receive a cleft bear of their very own - personalized with their specific cleft (whether lip or palate), go to Monte's Bears for Clefts to see how, or to sign up your child for a spot on the sponsorship list.  *I was not in any way compensated for this referral.  Miss Sunshine received her cleft bear from a generous sponsor several months ago.  I just personally think it is a wonderful thing that the team at Monte's Bears for Clefts does.)