New Pictures

New Pictures have been added to Anya's recent pics (see slideshow labeled Recent Pictures) on bottom of main page). New ones of Bodie... he looks a lot like Anders and Aksel! Anya likes to look at him!

1/28 Update..

I guess I'll start with the gossip..  We got a call today from the detective covering our home break-in from last February.  The burglar is behind bars today.  They were able to pickup DNA off the cigarette butt he left in our driveway and link it to his prison record. He was apparently involved in gang activity (whatever that is) and has a history of crimes involving shootings.  From that they were able to link his mug shots to two bank robberies he had done a few weeks after our house.  He apparently skipped town to Chicago after the bank robberies, and while there got involved in a drug deal gone bad and ended up getting shot. He is now paralyzed and will spent the rest of his life in a wheelchair.  The federal courts will take care of the sentencing first for the bank robberies. They're guessing 20-30 years.  Not sure if they'll even do anything regarding our break-in.    Again, we are so very luck and thankful nothing happened to Katie and that the boys stayed sleeping through the whole thing. 

Now regarding the princes.. She is doing great (sitting in my lap right now).  I'm not sure if I mentioned it before but we decided to go ahead with the muscle biopsy.  We will be doing it here in Madison on Feb 9th as well as a skin biopsy and endoscopy.  We met with the surgeon yesterday to go over the details.  Result should follow about two months after the surgery.

Today we drove to Milwaukee to see Dr. Li, the 'greatest Cyclic Vomiting Syndrome specialist in the world' (paraphrasing his actual title).  We had a nice long discussion about the next few things we can try to get this little girl to break this cycle.  We'll see how it goes..

1/21 Oh Beautiful...

 

1/17 Here we go again...

Sick again... Started about an hour ago (3:15). She was having a good day until now.

1/14 Update

We got home yesterday around 1:30.  A fairly good visit overall.  Although we obviously never like to see Anya (or "Onion" as a guy in the elevator thought I call her) get sick but at least it happened while we were there.  We were able to try out Dr. Li's IV protocol (additional dextrose, potassium and zofran) to abort the cycle.  It will probably take a few occurrences to say for sure if it is effective but at this point I can say it may have helped.  She had actually stopped vomiting by the time she received the IV fluids but we'll never know if the cycle was truly over or if was just taking an intermission as it likes to do sometimes. Regardless her episode only lasted from about 11am to 5pm. 

Her EEG went well. We haven't gotten the official report yet but preliminary report shows zero seizure activity, random spikes and no apparent slowing in the waveforms.  Another improvement as far as we are concerned. The option to put Anya on anti-seizure meds was given but we feel confident in her stability. 

1/12 24hr EEG

Anya is getting a 24hr eeg done today. So we will be spending the night at Children's tonight.  Unfortunately she entered into an episode just as we got here.  I guess we saw it coming as she slept until 10;30 this morn.  Note the little pig-tails poking through the bandages.

1/11 Doing well

Anya is doing well today and had an okay day yesterday. She wasn't sick but not very happy. We order new softer/lighter splints for her arms to keep them straight and prevent her from biting her hands. She has a pair now but they are relatively heavy and make it too hard for her to even lift her arms.

And again..

Another pukey day today.  Anya had a great day yesterday as were getting smiles and giggles out of her.  She had a hard time getting to sleep last night however.  She just couldn't seem to shut down the engines until around 12:30 or 1am.  Even then she was doing a lot of twitching and choreaform movements.  She then awoke around 4:30 and I noticed she had either stopped or slow digesting.  I shut off her slow drip feed and put her in her chair so she could sit upright to potentially have gravity help digestion continue and hold food down.  By 7:00 her belly was empty and she looked fine but ten minutes later she turned white, closed her eyes halfway and started puking.  and its been every ten minutes since.

She's back!! She's smiling!!

1/7 Extra sleep..

Anya has been sleeping an awful lot lately.  Not really sure if we need to be worried or if she is just catching up on lost sleep.  She slept very well last night.  She was only awake for 8 hours today and seems ready for bed again now.  Very hand-bitey but at least she's eating and not vomiting..

A side note: Katie came across a protocol for some Cyclic Vomiting kids where they take a Mt. Dew or Red Bull the moment they feel an episode starting and it seems to give them just enough energy to abort the issue... hmmm

1/7 Doing better

Started eating again, slowly.

1/6 Sick again

Well I thought Anya would have been done puking for a couple days and that I would have been safe sleeping in my own bed, but nope..  We woke up this morning to find Anya covered in her mucus and vomit (yea, we feel awful).  We have a baby monitor w/ video on her but sometimes we turn down the volume because the static noise keeps us up.  Most of the times we can hear her retching but apparently not last night.  So we gave her a shower to clean her up and afterward noticed she was having some labored breathing.  I got her dress quick and started off in the car heading toward either her pediatrician or ER, making phone calls on the way. We'd seen her breathing looking much worse so decided to just go to her peds office.  By the time we got there her breathing looked much better and her lungs and oxygen saturation levels were all normal.  We're back home now and Anya continues to vomit every once in a while.  She was so not ready to do this again. She's had one day of full nutrition this week...

1/4 All better

We are still in the hospital but the are working on her discharge now (I think).  Her electrolytes are back within range and she handled her feeds great through the night so they pulled out her IV this a.am. .Heart rate down from 160's to 120's and fever completely resolved.  After her IV was taken out we did a few laps walking around the pediatrics corridor which she definitely enjoyed. You can tell she is sick of laying around here and wants a change of scenery. 

 I spoke too soon last night when I said she was sleeping.  She ended up waking a few moments later and I'm not sure if she slept at all last night.  Ended up just putting in a video for her to watch at around 2am.  She was up still at 3 and 4. Sleeping at 5 but up again at 6.  I'm sure she will crash good when we get her in her crib at home.  She actually just fell asleep a few minutes ago on my pullout sofa-bed. She looks very good now and peacefully sleeping.

 

1/3 She sleeps..

Anya is sleeping now and doing very well. She is still taking iv fluids w/ antibiotics and potassium at a very slow rate. She is also finally taking formula at 30ml/hr. She has not vomited since we got here at 7:30am. Her color and energy is back. Her eyes look good. She still has a slight fever of 100F. She gave a couple small smiles when hearing Mom and Nana's voices on speaker phone. She is such a trooper. Ought to be out tomorrow. and we'll play this game again in a few days...

1/3 A message from Anya's brothers...

1/3 In hospital tonight...

Anya is spending the night in the hospital tonight. She was admitted after I brought her in to the ER this morning for IV fluids. Normal I fight getting admitted because it is a waste of time but not this morning, she was in rough shape and I was admittedly nervous. She is doing much better now but this A.M. was a totally different story. Just extremely dehydrated and a fever of 103.7.. She is now on IV fluids with antibiotics (although I am sure the blood cultures will be negative and it is just her dysautonomia causing her fever but better safe than sorry). Anyway, we are here and she is doing much better. Thanks Laura for helping out this afternoon. Hi kids! Hi honey!! Check out Anya's crazy hair on this video (you may need to click on View full Journal to view the video...

1/2 Not looking so good :(

Anya is still deep in her vomiting episode. She has been extremely lethargic all day long and just looks terrible tonight. She is still hand biting occasionally but it appears as though her bite is so weak that it doesn't even hurt her. We haven't felt yet that she'll be able to hold down any fluids yet so we haven't given any but pretty soon I just do it anyway and let her puke it up. Hopefully at least a little will stay down and get absorbed. I actually just gave her 10cc's of a new food supplement we've been adding to her formula in to her J-tube. It is a highly concentrated calorie supplement made by Nestle's medical food dept. I'm pretty sure it is actually just an overpriced blenderized Wopper from Burger King. Obviously fluids are the most important factor here but we've already tried rehydration (on several occations) to snap her out of these episodes to no prevail. Perhaps a shot of high cal formula will give her the energy she needs to pull through. (don't tell anyone :) but I even tried giving her a little Red Bull energy drink onetime last year. No apparent affect, perhaps she needed an espresso chaser next time)

1/2 Anya's still sick.. but here is something to cheer us up anyway...

From the movie Elf w/ Will Farrel../.

1/1/2009 Pukey day :(

I think we did this last new years day as well.  Anya started puking around 1 this afternoon.  She slept, napped and ate well all week.  She looked questionably pale early around 9am but not too bad...   Oh well.. Happy New Year!! We wish you all the best in '09.  It is bound be an interesting year for sure...