Friday, May 25, 2012


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.

Friday, May 18, 2012

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!

Tuesday, May 8, 2012

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.

Friday, May 4, 2012

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.