Rough Start

To say the least March has been on the rough side so far. We are just now recouping and recovering. Cameran and Mom have been home from the hospital for a week or so now. Catching up on sleep and housework is the biggest challenge at this point.

The montage covers Peanut from before her trip to the ER/bronchiolitis/RSV diagnosis to coming home and recovering. Phew. I hope not to return to the hospital prior to delivering this baby unless it is for my mother's kidney transplant!

**Update to clarify** I have been a terrible blogger between catching up at home and at work grading papers, etc, blogging has gone by the wayside.  After they did a chest x-ray of Cameran prior to being admitted to the ER, it showed bronchiolitis, we were given antibiotics, a nebulizer treatment and sent home.  The next day she was worse coupled with a high fever...They didn't bother testing for RSV,just quarantined her and assumed that is what it was and then began treating for pneumonia.  At the same time we were admitted, my mom was taken to the ER for what felt like kidney pain, and wound up needing to begin dialysis. **

Speaking of transplants...Mom found out on Friday, the day which was to be her transplant prior to being hospitalized for kidney pain, that her new transplant date is Tuesday, March 29th.  Talk about the circle of life/destiny/God being in control...For us, this date is way more memorable then Friday, March 11th, because on 3/29/04 my grandfather passed away due to complications from kidney failure and being on dialysis for 7+ years.  Even though my mom is bummed about having to start dialysis (at the hospital they discovered her creatinine levels had gone up significantly), now she has an end in sight which makes it all worthwhile.  She's a fighter and has waited all too long for that special person to come along and make the selfless sacrifice of giving up a kidney so my mom can be healthy, and to BA we are eternally grateful.

March: In like a lion, out like a lamb...

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123 ABC ASD ...PFO

Confused already?

My life is filled with acronyms.  Between life as an educator and life as a Down syndrome parent, there are more acronyms than spaces in my memory to store them. 

Luckily there will be some overlap in Cameran's future, so I have a head start over parents who perhaps are not in education or psychology job fields.

SDI, DI, IEP, IFSP, LRE, PLC, RTI...

IFSP, PT, OT, SI, SLP (wish that one stood for sleep)

And then there's the added medical jargon, also chock-full 'o acronyms...

MRI, EEG, ECHO, EKG, ENT, MO, GI, BP, PA, ASD, PFO, BPS...

It's a wonder I don't go crazy with all of these abbreviated terms!

Anyway, Cameran is feeling a little better.  Her fever topped out at 101.6 on Monday night.  I was hoping and praying that we wouldn't need to cancel the cardiology appointment.  Thankfully, Cameran slept through the night and woke up all smiles and fever-free.

I was able to leave work in order to backtrack to C's daycare and then turn back around to trek to Harrisburg for the appointment.  Traffic was horrendous along the main roads in H-burg, and we arrived a few minutes late.  Luckily they didn't mind, and we went back within ten minutes of our 2:00 appointment.

From there, Cameran was weighed (19.6 lbs..the kid won't gain weight) and measured (21 1/4 inches...at least she's getting longer).  We then went back for an ECHO-ultrasoundy kinda thing.  The tech was awesome, and he sang to Cameran while he did his thing.  You know how techs are not allowed to "interpret" images?? Well, this dude rocked.  After singing Cameran's praises for cuteness factor (I agree) and mellowness (a word??) despite feeling sick, he said that things looked good, and things were small enough that he couldn't get a measurement.  We then proceeded to wait for what seemed like an eternity before Cameran was hooked up to her EKG.  Overall she did well, only crying when the sticky tabs were pulled off.  We ended with a blood pressure check and the wait...

We waited and waited.  A PA came to speak with us while we continued to wait for the doctor.  She explained that everything looked fine, and that Cameran does not have an ASD like they first suspected, but instead has a PFO.  Her Branch Pulmonary Stenosis has resolved itself. 

So instead of this...

where an actual piece of tissue is missing and needs to grow shut....

Cameran has this instead...

...which is actually pretty sweet because it was so small (less than 4 mm) that they could not even measure it!

Apparently 1 in 4 people has a PFO, and they often resolve themselves, or cause pretty much benign irregular heartbeats and sometimes mild murmurs.  In any case, it is continuing to improve, and it is AWESOME news that it is a PFO.  Even if they were still thinking it was an ASD, it still would be just a case of monitoring. 

We are very blessed.  This was an excellent early Christmas present!

Sayonara Cardiologist (until next December)!

Sick but thankful

Cameran is sick.  No surprise here.  She has had a nasty lingering cold for a month now.  It seems to be going deeper into her chest, culminating today with the dreaded 100.2 temperature.  Thank you daycare, for not calling me after she vomited due to a coughing jog.  Thank you Lord that her temperature did not climb to 100.4 where I would be called from work to come rescue my child.

Tomorrow she has her annual cardiology appointment where they will check to see that the hole in her heart is still closing.  I fear that they will not be able to hear because of her chest congestion.  Hopefully the EKG? EEG? (You'd think I'd know by now, but she gets EKGs, EEGs, MRIs, and Xrays like they are a common occurence) will show that there is still improvement. 

Even if they cannot tell for sure, I am grateful that Cameran is not in the range where surgery appears to be needed.  For that I am thankful.  My prayer is that the former is true, and also that Cami does not have pneumonia.  She went to bed at 6 after a not-so-constructive PT/SI session.  She has been asleep since.  I have a strange suspicion that she will be waking up in the middle of the night once again, therefore bedtime for me needs to happen ASAP.  Three hours last night was not nearly enough.  If when she wakes up, Vicks Vapor Rub is getting slathered on, followed by Motrin going down the hatch.

Tomorrow morning-repeat procedure-and hope and pray to make it until it is time for the cardiologist!

Seizure-Free!!! A post from August 23rd...

Today was my first day back to work (just like every August in the life of a teacher). I needed a refresher in just how long it takes to get myself motivated to get up and ready after 4+ snooze button pushes plus getting Cameran ready for daycare aka Snot Haven. Needless to say we were pushing the envelope today. Tomorrow we have to do better. Wednesday is a must. In any case, it went. I didn't get to stay and get my room ready for a little longer because Cami had her EEG follow-up...

As the title gives away...she is seizure free!!! Her brain waves are completely normal, and now we are just beginning a slow decrease of the topamax. Three weeks from now Cami will be drug free!!! (Okay, I lied. There's still Zantac to be had...)

We are so thankful. Cameran is smiley and giggley again!

Finally...

...a bit of good news!  We got rid of the opthamologist for 6 months! Woo hoo! I will take what we can get!  I told the opthamologist all about the seizure diagnosis, tubes in her ears, and basically admitted to not putting on her glasses for the better part of a month.  At any rate, her eyes have indeed stopped crossing, other than an occasional fluttering inward of her right eye!  We are going to wear the glasses occasionally for the next 6 months and go from there, but for now...NO MORE EYE DOCTOR!!

Goodbye Sanity...Hello Lent!

            Goodbye Love Affair...

I am not actually kidding when I say I am going to lose my mind for the next 40 days.  These coffees are what bridges the gap between waking up insanely early to let the crazy dogs out, to going back to bed for an hour, to waking up and getting ready for work, getting the baby ready for daycare, dropping her off at daycare and driving to work.  I go into the local Sheetz and they sometimes will start making it before I program it in their computer.  40 days of withdrawal.  40 days of no frappaccino.  What will I do? I assume I will survive.  It is going to be a sheer test of willpower.  Kind of like saying that at least one meal a day is going to involve salad of some sort.  It's like if I type it on here and there is the possibility of someone reading this, then I will actually possibly be held accountable....

On another note. Cameran's PT has only been going on for about a week now and already she has gone from not sitting up to sitting up for about a minute.  In our world this is huge!!! I am so proud of her.  Per recommendation of the PT we purchased a First Years portable high chair.  Not to use to eat from (although it works quite well) but instead, to practice sitting up in.  Cameran still does not have much motivation to reach out and grab for toys.  We are working on placing different textured toys on the tray within her reach.  So far she is reaching out and touching some of the toys, now we just need to work on grasping.  But like the PT said, gross motor before fine motor.  AKA: a test of patience (in a good way).  All of her accomplishments are that much sweeter when they finally do come.  We were so excited by her amount of progress that we went out and bought two more portable high chairs!  One for daycare and one for Pappy and Nanny's house!

ENT appointment on Thursday.... until then....

Appointments

Appointments are always a good time. I say that somewhat seriously and sarcastically. When we go to one of Cameran's many appointments, be it pediatric, cardiology, Ear Nose and Throat, or opthamology (today's appointment) we always leave learning a little more about Cameran's development. It also leaves me with worry.

Case in point--we left the opthamologist, who by all accounts said Cami's glasses are working and she likes the progress that has been made. Just to be followed by Has she ever had an MRI or seen a neurologist? Hello!!! Way to freak out a mother who has to drive home in the beginning of snowstorm! Now rationally I know that she can not see inside Cameran's eye so it makes sense that the neurologist is the specialist who does this. And then she talked about how it wasn't necessary yet because Cameran would have to most likely be "put under" since she is so wiggley. (She is VERY VERY EXTRAORDINARILY WIGGLEY!!!)

Anyway, overall thumbs up to this appointment. Now we need to make it through another 12-18 inches and brace ourselves for the upcoming Ear Nose and Throat appointment. The fun never ends!