Anya's Doing good!

It's been a while since I have updated. That is usually a good sign that things are going well, which they are. We are starting to see some really good things with Anya. Her head control while laying on her belly has improved so much in the last month and she actually enjoys being on her tummy! Her eye control and tracking objects is getting better week by week, she's just not consistent. And best of all, she is smiling a ton! She seems to be so happy, which makes me so grateful after seeming as if she was in pain for so many months! She did throw up last Thursday all day, but hey, at least it wasn't 21 days straight!!!! She did loose a lot of weight so we are making her formula more concentrated and hopefully that will help. 

What is a Seizure?

-Following Anya's consistent abnormal EEG's we are considering starting her
on an anti-seizure med call Keppra (or levetiracetam). While doing research
on this drug I came across this presentation on Seizures and How
<http://www.epilepsy.com/web/animation.php?swf=what_is> the Brain works.
It's pretty good if you're interested and want to check it out.

-I tried feeding Anya water again yesterday and we were unsuccessful. She
didn't get anything and when she did manage to suck, she coughed it up right
away. It's amazing how inconsistent she is. We'll cautiously keep
trying...

-Anya had been doing so well sleeping lately but last night was a blast from
her past. She was all fired up and finally fell asleep around 2am. But
actually, in hindsight that's pretty good. The old Anya would have stayed
up ALL Night.

2/17 Quick update

Anya has been doing well and hasn't gotten sick since she was release from
children's on Fed 2nd. We've backed off a lot on her feeding volumes from
155cc's to 110cc. This is essentially the bare minimum recommended caloric
intake at her age/weight but she is clearly getting more food this way than
puking up a larger feed. I thing she lost about 1-1/2 lbs during those
rough 3 weeks. We haven't weighed her lately but I'm guessing she's gaining
again.

We did get her EEG results. Unfortunately it was the same as last time,
displaying epileptiform patterns. We were very surprised as she was so
relaxed and sleeping during the test we thought it would have been better.
For her last EEG she was squirming, wiggling and crying. hmmmm We meet
with our Nerologist on the 27th to discuss what this means.

oh yea...

She drank 60cc of thickened water yesterday!!!! It was over the course of a
few hours but she didn't gag or cough once! That is huge for her. It's
been a month or so since we've tried any oral feeds. She has never done so
well, not even close.

Happy Valentine's Day

Happy Valentines Day! We send hugs and kisses to all our friends and family. Thank you for all the love and support you have given us in the last couple months, we appreciate all the prayers. Today was a good day. Anya went to see our dear friend Dr. Mary Ann. She is Anya's cranio-sacralist who has helped Anya so much and given us so much hope! We love you Mary Ann! Anders started ski-school today. He goes to Eldora a local mountain (45 minute drive) and is part of the Eldorables. He learned to stop today, which I am happy about! Aksel got out on his skies today as well, thanks to dad! Tomorrow the boys have gymnastics which they both like. We have to get Anders flexible for the tricks he'll be doing on his snowboard ;) Not much news but wanted to wish everyone a Happy Valentines Day.

 

Love

Pete and Katie

2/9 Really good week

Well we are back from our vacation in Breckenridge. It was wonderful to get away and spend sometime outdoors! No doctors appointments, this is one of the first weeks we have not had one doc. appointment in months, how refreshing! Anya did excellent. She did not puke at all while in Breckenridge but did on the way home today, hmmmmm.... Is she trying to tell me something:) There really isn't any new news to report on her which is good, I think. The boys had so much fun playing in the snow. Anders went snowboarding, and Aksel got up on skies!!!! Aksel is only 21 months and on skies! So cool but kinda sad! They are growing up so fast. Anders did awesome on his skies but needs to learn how to stop, scares me!  These kids have no fear. The weather was excellent, even came home with a little tan. It was a great week but really nice to be home.

 

Anya's coming home

Anya is coming home from the hospital. We are still not sure why she is vomiting.The upper GI test today did not reveal any reflux or obstruction. They said that mito just shows differently in all kids and this is how it is presenting in Anya. So I'm not sure if we will have to go weekly for an IV to replenish her liquids or if she will eventually stop throwing up. I'm just glad my baby is coming home!!!! We have missed her. Also, papa Jack is in town visiting and the boys are so excited for the visit. Hopefully, it will be a good weekend!

 

Thank you for all the prayers!

 

 

2/1- Hurry up and wait...

We were told at 1:30 yesterday to come in to the hospital as soon as possible so they could start getting some work done on Anya. We checked in to the ED at 3:30 and were finally seen at 5:30. After several attempts to place her IV, they finally got it in about 45 minutes later. Then we waited another couple hours in the ER and finally got a room upstairs at around 9:30. Even though she was rehydrated with the IV, they wanted to keep her overnight so they could do an Upper GI first thing in the morning.

Well first thing in the morning has come and gone and at around 11:15 we're told they can't fit her in the schedule today, so it will be first thing tomorrow morning... just hang out here for while... The good news is we may get to see Anya's metabolic docs a month early when they do rounds.

So now we have the upper GI scheduled for 8:30am. It is likely they will find her Nissen (tightened esophagus surgery she had done when she was 5 days old) had slipped and they will need to redo it. This doen't really explain why she is vomiting but it will explain why she can vomit. With a Nissen you shouldn't be able to vomit at all.

They also mentioned doing a PH probe study to check for reflux. I'm not sure if they just weren't aware that she's already had that or if they wanted to repeat it. Last time it showed 'no reflux'.

All in all, she's doing well and she'll be fine.