Annie update

Well, its been awhile so I thought I'd give an update.  Unfortunatly it's not a great one.  Annie has been having a very difficult time lately.  She was back in the hospital on Good Friday with more seizures.  This time they lasted from 1pm to 11:30pm.  Stopping them was an issue since Annie is no longer able to have Ativan (what they typically give in the hospital to stop seizures) since last time her blood pressure dropped to scary numbers.  Thankfully we had our wonderful Rett Specialist, Dr. Sasha, via phone and she was able to tell the residents how to proceed with our sweet Annie.  We only spent 1 night in the PICU and were able to be home late Saturday night just in time to get ready for our Sunday Easter Brunch
.

With seizures continuing we have increased Annie's meds.  It looks as though Annie is following a trend of having seizures every 3 months and once she has 1 her body is unable to stop having them.  Our plan now is to wait until there is another one (likely in July) and stop them immediatly with our rescue med.  I feel a little more at ease now that there's a plan.

Since this last hospital stay and really since about January Annie has just not really been herself.  She is much weaker these days, some days not able to stand at all and other days her legs give out after just a few minutes of being upright.  Screaming fits are at an all time high (OK, not regression high but high!).  We aren't sure of the reason for this but Annie is screaming for multiple hours a day every day now.  Her hips also seem to be giving her trouble, when she is standing she tends to guard her right leg (which has the hip that's subluxated 30%).  She has also taken a couple tumbles in the past few days, both on my watch (Great job Super mom).  Breath holding spells are also getting out of hand and her circulation is especially poor and is causing her pain. Lately we have also noticed what we can only describe as "crazy eyes" - she will wake from a nap or in the middle of the night, her eyes will open super wide and will dart around the room in a circle over and over and over again, sometimes her eyes will be in sequence and other times her right eye will look right and her left eye will look left - see, crazy eyes.  We aren't sure what this is, likely just a "rett episode" which rett parents will understand but possibly seizures in her sleep.

spent

Sleeping has been greatly increased as well which is a side effect of the medication.  This is both good and bad - the good is that Annie is sleeping through the night most nights and we have completely cut out benedryl (YAY!) and are decreasing her melatonin, which we were previously using to get her to sleep.  The bad is that she is sleepy all through out the day and when Annie gets sleepy she can only nap when circumstances are perfect which means we are at home, she is on the couch, no one can make a sound and depending on her mood that day she either needs to be left completly alone or she needs Scott or I to hold her and snuggle until she falls asleep, you also can't wait too long to put her down because then she's over tired but you can't put her down too soon because then she will just get restless and start to move around and won't be able to settle. Guess how often we can make circumstances perfect for Annie - Yep, hardly ever - guess what Annie does when she's tired but can't sleep - scream!  This is likely the reason for the crazy hours of screaming she is doing now.  Annie's weight and appetite have also increased, another side effect of the medication, which is also good and bad.  Good because Annie needed to gain some weight and an increased appetite means increased nourishment.  Bad because it is getting harder and harder for me to lift her, get her in and out of the car and up and down the stairs.  She is stll very tiny - only about 36 pounds but she is long and fluctuates between being stiff as a board and limp as a wet noodle - both are very hard to carry.

Look at those cheeks

Most of our days now revolve around making Annie comfortable, trying to figure out why she is screaming, feeding her and meeting her basic needs.  There's not much time left over for therapy, school work or spending as much time with James and Grace which just breaks my heart.

We are blessed that we have people around us that are always there to help, our wonderful Miss Lauren has been amazing, she loves Annie and takes great care of her, it's so refreshing to get a break twice a week to spend time with Grace or work in James's classroom and not feel anxious about Annie because she is in such great hands.  Of course my mom is always there helping out when she can and Miss Bev gives us a beak on Sunday mornings by taking Annie to bible school.  I don't know what we would do without this amazing support.

 Through it all we have not lost hope.  When Annie has a particularly rough day I hold her and tell her again and again about the amazing research that has just come out.  We have faith that this too shall pass and that brighter days are around the corner.  We know our cure is coming but it can't come fast enough for Annie's sake and for all of us.  The kids want their sister back, they want to play with her, Annie is just desperate to have some form of independence and Scott and I can't bear to watch our sweet daughter continue to suffer.  We are praying for a cure every chance we can and will be seeing some of our specialists over the next few weeks to see if there is anything else going on - ortho for her hips, neuro for possible VMR and GI because GI is always a concern.  Please pray that we get through this season quickly and that Annie bounces back to her strong, happy self.  Hopefully our next update will be about all the accomplishments our sweet girl has made!

"For I WILL restore health to you and heal you of your wounds, said the Lord".