4/28 We got giggles!!!

Just a quick update. Anya has been doing very well. She actually giggled
today when I was tickling her armpits!!! It was awesome! She gave four
quick, cute purposeful giggles. We're so proud.

April 23 Feeling Better

Anya is doing better. She started to hold pedialyte down Sunday morning. She did get dehydrated but we were able to quickly replenish fluids once the vomiting stopped. I'm hoping today she has her energy back and gives us some of those beautiful smiles.

April 21 Baby Girl is sick again

Anya started vomiting this morning after her first feed. She has had a ton of congestion. I don't understand why mito kids have so much congestion, I would love an explanation. It is so hard to watch her sick especially when only 5 days have gone passed since the last spell. I worry so much for her. Her tiny little body working so hard to cough up this mucus. We'll see what tomorrow brings....

April 19th Anya is feeling better

Anya is doing much better. She stopped vomiting Tuesday afternoon and has been able to keep pedialyte and formula down. She's been in a lot of pain from her teeth, she has at least 2 or 3 teeth coming in. She has been grinding her teeth a lot, I know she is in a lot of discomfort. Plus she also has a cold which could have caused the vomiting. Who knows! This illness is so unpredictable. Today she has PT and OT, hopefully she'll have the energy to work on head control and some swallowing exercises.

 

Today Papa K and Uncle David come to visit. The boys can't wait, should be a great weekend.

Have a good day!!

 

 

April 17 Still sick

Well I thought Anya was on the up swing, she was looking good and seemed like her energy was back. Then around 10:00am she started vomiting again. She managed to keep most of her feeding last night, so she has had some formula and lots of pedialyte yesterday. We are not too concerned about dehydration but we will really watch for any signs and take her in if we need to. It's stressful just watching her, should we take her in, should we start pedialyte, did she have a wet diaper, do her lips and mouth look dry, does she seem lethargic?? Ugh!!! I get pretty stressed out the days she is sick, so many things to take into consideration. Please Lord help Anya to feel better soon, keep down her food and bounce back quickly from this vomiting spell.

4/15 Not doing so well today...

Anya was having such a good week (10 days since her last vomiting spell),
but around 3:00 this afternoon she went down hill pretty quick. We should
have seen it coming as she did give us her warning signs of being unusually
tired and had two good naps. It was unusual however for it to be so late in
the day. Typically she starts this around 8 or 9am. Hmmm. This girl just
will not give us a pattern to help us figure her out... All we got is every
7 to 10 days it hits the fan. She's still tough as nails though and will
bounce back.

On a good note, she made a huge leap forward a couple days ago while Katie
was working with her doing some therapy. While lying on her belly she
pushed her elbows down into the ground and was able to lift her chest up off
the floor for a moment. Katie was just screaming with joy. I love those
moments, they are our driving force...(well, one of many driving forces).

Had to share this...

 

Aksel's potty training isn't going so well...

April 11 and all is good

Just a quick update. Anya seems to be getting over her cold and the congestion is getting better. She is doing much better than last week. Still doing really well in her PT and OT therapies and we hope to start speech soon! We continue to do cranio and acupuncture which I think are helping enormously!!! I am so grateful for these two doc.'s, they have given us so much hope and have helped us to remain really positive for Anya's future.

 

 

April 6 Good Friday!

We're back from Telluride. We had to cut our vacation a little short and head back Wed. Our trip didn't go as planned but at least it made coming home feel really good!!!! Anya got really sick Monday morning which of course lead into her vomiting. She continued to get sick until Wed. afternoon. This was a long spell for her. I really think it was more of a cold that made her vomit instead of her usual cyclical vomiting spells. Aksel, Anders and myself have colds and I'm sure she picked up the bug from us. The car ride home seemed so long! I was so worried about Anya being dehydrated, she was not looking good. Then about 30 minutes into our trip back Aksel threw up in the car. Ugh! What a trip. We did have to stop at the ER in Breckenridge so we could re-hydrate her for the rest of the car ride home. I think we learned our lesson, not to vacation 7 hours away from home :):)

 

Anders and Pete did manage to ski a bit on Tuesday. Anders did great, he can do blue runs and Aksel did awesome on the magic carpet!!! The boys had a great time. 

 

We are all doing much better and happy to be home!

 

Happy Easter. 

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.........

 

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.