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.

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!