3/30 We're leaving for Telluride

Anya is doing really well this week, even though she did start vomiting Monday evening. She started around 7:00 pm and let up around 8:00 am Tuesday morning. That is one of the shortest cycles she has had so we were very pleased. She seemed to recover very quickly from the lethargy. This week therapy went really well, both OT and PT were very happy with the progress she is making. Yeah Anya!!!!

 

We leave for Telluride this morning and will be back next Friday. The boys are really looking forward to the trip, Anders is excited to ski.

I'll update when we get back. Have a great week.

3/23: Keep it up!!!

I really think Anya is turning the corner.  We are finally noticing a real spark happening 'upstairs'.  She is beginning to track objects and faces much more consistently (far from perfect but much better).  For months we had tried to get her to watch a Baby Einstein video just to get her to view all the colors and associated noises. We would have to place her pretty close to a big screen TV so she would be forced to look at it.  Even though she was 'looking at it' she definitely wasn't 'watching' it. It was like she was starring off in the distance and day dreaming.  Since she started to do well looking and tracking the small flash light in the dark bathroom we decided to try having her watch a video in there on a small 5" portable DVD player.  She did awesome!!  As we slowly moved the screen around she followed it with her eyes and head movements.  Even turning from her right to her left, which has always been difficult for her.  We then set the DVD player down and she WATCHED it intently.  She was even smiling occasionally.  It was an incredible feeling for us.  You could almost see the neurons firing in her head. 

 

She will now turn towards my (dad) voice and smile when she sees me.  When she cries I can give her my hand to hold, she squeezes tight and immediately calms and seams happy.  Again, an incredible feeling.  Last night we rocked in her chair and she watched me as I sang countless repetitions of "You are my Sunshine" and I just had this overwhelming feeling, saying 'welcome home Anya, welcome home'.

 

Bottom-line, Anya is getting better.  You can just feel it.  And we wanted to thank all of you from the bottom of our hearts for your prayers.  They're working.  Anya's getting better. Keep it up...

3/19 Nothing New

Nothing new to report but that is GOOD. It's been so nice to have everyone healthy and staying out of hospitals! Just thought I would give a quick Hello. Hope everyone had a nice weekend. We played outside all weekend, it's been in the 70's here!!!!! Love Love Love this weather, Sunshine!!!!

 

 

3/12 update

Anya is doing great (knock on wood).  She has had several good days in a row now and is gaining weight again.  The 'good days' are not only good for the obvious reasons of her being happier but good because we can offer physical, visual and other therapy to help stimulate brain function and development.  When she is sick she is so lethargic and 'out of it' that there is really nothing we can do and it usually takes a day or so to recover.  These days missed are so valuable.  Fortunately she's not regressing during these sick spells but still, an infant should be making progress everyday. So developmental stagnation is almost just as bad.

 

Every slight advancement she has nearly brings tears to our eyes.  Although I know we don't do it nearly enough, we try to work on her visual sensory by going in to a dark room (bathroom w/ towel covering light under the door) and using a small flashlight we try to get her to track the light or at least just look at it a bit.  We turn it on for 30sec, then off, then move it to a new location and turn it on again for 30 seconds and see if she can locate it in her peripheral vision and turn towards it.  She is far from good at this but she sometimes does get it with a long delay of about 20 seconds.  The other day we had her holding a pen that had a small Lava-Lamp built into the end.  I think this worked really well as it gave her direct feedback from her own hand movements without surrounding distraction.  She seemed to do great with it.  She definetly had INTREST which is exactly what she needs and lacks.

 

Something seems to be 'sparking' in her brain and that is absolutely huge!! 

She's home

Anya is home and is topped off with IV fluids. She had two bags if IV fluids and was released yesterday. Her labs were actually pretty descent and didn't show much dehydration but we figured we would get her some fluids seeing she was there. We also got some antimigraine medicine to see if it helps with the Cyclical Vomiting Syndrome, some kids have really good success with the medicine. That would be wonderful if we were able to control these episodes or at least get them spaced farther apart. Then hopefully we will see big gains in her weight.

Back to the Hospital

Anya is going back to the hospital today to get some IV fluids. She started vomiting last night and continued through the night. I really hope some liquids is all she needs and she will be able to come back home. She didn't seem to fully recover (energy wise) from last weeks episode, so I think it's what she needs to get some energy back.

Here we go again!

Well, it's Thursday and she's puking. It's been 7 days since the last episode. Hopefully this will just be a 24hr thing, otherwise we will probably go to the hospital for fluids. We'll see.........