Friday, June 1, 2012

A busy morning

It's Friday morning and I do believe someone said it's June already!  Amazing.  I stayed up with Cayla last night just holding her between her 10pm and 1am feedings.  Then after pumping I went to sleep.  We all woke up at 4am when the nurse came in to feed her through the pump.  I thought since I was up I'd pump again too.  So about 4:30am or so I went back to sleep.  I was awakened by Dr. Gurd tapping my shoulder at 6am ready to put her cast back on.  So the day started.  They put her new cast on and it's much bigger than the last two, but oh well.  I got Cayla's 7am feeding ready and started that when the nurse came in and said cardiology was ready for her ecocardiogram... I must have missed that memo.  :o)  So, we took off to her eco and finished eating while there.  At 8am, the sonographer said she was done and would go get the doctor to see if he wanted to look at anything.  Well, about 8:15 I asked them if the doctor was coming because I had another appointment with Dr. Freedman the neurologist at 9am.  She said Dr. Lorber was the opening lecturer this morning and hadn't come back yet.  I told her I really needed to get back since I hadn't eaten and wasn't willing to be late for the next appt.  Plus, an eco with Dr. Lorber is not quick.  They said that was fine and he'd just look over what was done by the sonographer. 

We had just got back to our room, sat down and started 2 bites of my breakfast when they said transport was here to take us to our next appt.  I asked if they could wait 5 minutes and they said to just call for transport again.  Well, that would take forever, so Misty the nurse's aid took us over.  This was a first... to arrive and see a doctor standing in the lobby waiting for the patient!  Dr. Freedman check her out from head to toe with all her nerve endings and reflexes and who knows what.  Very nice man and explained some of the genetic reports that I hadn't known about.  They've pretty much put Cayla in the DiGeorge Syndrome category even though she has the 22 Q 11.  She might have a slight deletion on that particular piece at another level down in the chromosome chain.  I really don't understand it all. 

Then he said the occupational therapist was ready to see her now.  Missed the memo on that appt. too.  Oh well.  She took out all her books and charts and started testing Cayla's responses and abilities on her charts.  She said she'd send me her report in the mail.  Cayla did well for the most part, but if you're going to work with a baby who's only wearing a diaper then turn the heat up... Anyways. :o)

We finally got back to our room and the cardiologists spotted us back and said they  missed "rounding" on Cayla, so they all gathered around.  Not much to say, but I asked about needing oxygen at home... No, and if there's any other signs to look for to let us know if we need to bring her in again.  No, we did good bringing her in this time.  We discussed future doctor appts that they want Cayla to have and as long as I don't have to set them up, I'm good.  I'm so tired right now.  Cayla's sleeping and I came down for a minute to check the internet before going back up to eat lunch, pump and feed Cayla and the cycle continues... 

Well, just a quick update.  Looking forward to seeing my mother-in-law around 4pm to pick us up!  :o)  God is going to have to keep me going because I can't think straight anymore.  He's done it before, He can do it now.  A verse that just came to mind is:

"Fear thou not, for I am with thee.
Be not afraid, for I am Thy God.
I will strengthen thee, yea I will help thee.
Yea, I will uphold thee, with the right hand of my righteousness."
Isaiah 41:13 maybe?  I can't remember the reference at the moment.  :o}

1 comment:

  1. Praying for extraordinary strength for you today, Linda.
    Love you,