12/31 Happy New Year from the chamber...

12/30 update

Hello.  Anya is still doing great.  She is sleeping so well lately.  I think she has actually slept through the night every day this week!!!!  Normally I'd be thrilled if we got two nights in a row, let alone 7.  And she sleeping long hours too, like 9pm until 7am.  Plus an hour or two nap during the day.  This has got to be so good for her.  I'd like to add that it appears a healthy sleep pattern, as apposed to a lethargic, tired all the time, sleep.  During her awake times she is very much alert.

Her ability to reach for and accurately grab toys continues to improve.  She has been caught a few times recently swapping an object from one hand to another.  This morning in the hyperbaric chamber I noticed her look at a toy on a retractable draw-string hanging up near her left shoulder, reach for it with her left hand and at the same time as she grabbed it she brought her right hand in toward midline and immediately brought that toy to her right hand, perfectly.

12/28 Anya doing great..

Hi all!  ANya is doing very very well.  Has been sinse x-mas eve when she finally offered up her first smile in some time.  She had an excellent x-mas with a visit from nana and papa G.  Loads and loads of smiles on that day.   RIght now Katie (mom) is at the Packer game with her girl friends and grandpa J is here helping me out for the day/night.  Grandpa J is currently experiencing his first dive in the hyperbaric chamber w/ Anya.  So far so good...

12/22 Doing okay...

Baby-Doll is doing okay this evening.  Not great, not terrible, just okay..  We almost took her back in to the ER this morning, not necessarily for more IV fluids but just as a way to possibly get her Admitted.  We decided instead to take her in to her PCP (Primary Care Physician) to discuss what more could be done even if she were admitted.  Unfortunately there is really nothing more they can do.  She is now down to 19lbs 4oz and looks skinnier than ever.  She is still vomiting periodically this evening, although not as much nor as frequent. 

We did decide today to go ahead with the muscle biopsy but to just have it done here in Madison rather than going to see Dr. Schoffner in Atlanta.  It is a bit of a gamble though because in Atlanta they can perform a fresh muscle biopsy and be able rule out (or in) a broader spectrum of mito conditions then a frozen biopsy performed here. Logistically (and for insurance reasons) we are just finding the Atlanta option to be too prohibitive.  Madison is a great facility and we have confidence in them here.  In the rare but quite possible event they don't fine anything here, we can always reconsider Atlanta in the future...  There have also apparently been some recent improvements made to a mito DNA blood test that we had done in the past, that justified retesting.  So that will be the first step.  We are going to try to see the Geneticist sometime in January to schedule the biopsy.

12/22 Sick again.

Anya slept pretty well last night until around 4am.  Then started puking and slipped back in to her lethargic state... another full episode..

12/21 All is well.

Anya is doing fine now.  Not a great day for her but at least she isn't sick any longer. She is back to taking full feeds.She slept great last night from around 10 until 5am and then 6:30 until 8.  She was unfortunately in her crazy state where her hand biting is uncontrollable (she broke through her hand cuffs).  She was in her seat at the table tonight playing with her new switch (while handcuffed).  I had to go down stairs for a minute and by the time I got back up she had bitten her hand and smeared blood all over her face.  She looked like she just went a few rounds with Mike Tyson (except the bites where on her hands, not her ears).  After that we ended up putting her leg splints on her arms to lock her elbows straight so she can't get her hands to her mouth.  She tolerates it extremely well and it doesn't appear as torturous as her baby-cuffs.  She is sleeping now, as are the remained of the liter so I think I'll follow suit.   I'm sure she'll be back to her happy self tomorrow but I sure miss her smiles when its been a few days like this.  Tomorrow's agenda calls for a new G-J button placed at 9 and Physical Therapy at 11.   Oh yea, Anders had his birthday party today with all his kindergarten friends at Pump-It-Up..  It went well...   Good night.

12/20 surprise..

Big surprise... she started puking again at 7:15...    7:05 Looked great, 7:10 Looked questionable.... 7:14 Looked inevitable..

8:20 get the boys to sleep.  8:40 get Aksel back to sleep.  9:00 repeat  9:20 repeat.  10:30 get Anya to sleep in her bed.  10:35 get Katie to sleep in her bed.  10:37 get self to sleep in Anya's spare bed.  10:38 Smile, kick bare feet around on cold sheets and enjoy the anticipation of finally getting to go to sleep after two very long nights.  10:40 "Woof, Woof"  Rylie has to go outside to go potty....  

She's Home!

Anya and Daddy are home from the hospital. She got 2 bolus IV's and is topped off with liquids. She looks a lot better. Now hopefully we can start her feeds soon and get some calories in her.

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12/20 At the ER

Hi all.  We are at the ER just waiting to be brought back for an IV.  Anya was so pathetically cute on the drive in.  Picture looking in the back seat and seeing her in her toddler car seat, wearing pink zip-up long underwear suit, pink socks covering her little feet as they dangle way down from those long long legs of hers.  Her body lathargic and clearly drained of all energy.  A pink and white striped cotton sock on one hand and a green and purple wool sock on the other (clearly just grabbed first available out of the sock drawer late at night).  Red, blue and yellow plastic chain links and makeshift handcuffs keeping her hands down to her side and away from that ferocious chomper of hers.  A dark pink bid Velcro around her little neck with a burp-rag tucked into that catching her occasional foamy spit up and vomit.  Her big blue eyes with heavy, dark eyelids drooping down as she stares vacantly out the car window.   Her little mouth mustering up enough energy to softly grind her teeth like a cow chewing his cud.  Top all this off with a light-pink rabbit hat with two little ears sticking up, a little bunny nose on the forehead and pink fury flaps dangling down covering her ears, keeping them warm in the cold car.

 

This little kid is just dangerously cute...  I love her so much it's frustrating..

 

I'll update after the IV..

12/20 Still sick :(

Anya is still actively puking.  She finally slept from about 5:30 until 7:45 w/ a few pukes in between.  She is currently diving in the hyperbaric chamber while I get Anya's things ready to take in to the ER.  She is showing signs of dehydration; sunken in eyes, dry lips and mouth and needs IV fluids.  Despite the slow drip of pedialyte into her J-tube, all that fluid still finds it's way back up the jejunum, through the stomach, up the esophagus and into the burp-rag (or suction machine or towel or our hands or on the floor).  As I've stated before, her whole GI tract just goes in reverse.

This is a long episode and is taking it's toll on all of us.  Anya's hand biting has been so bad. She has open wounds on both hands despite our efforts in keeping her hands away from her mouth.  We keep socks on her hands to help keep those sharp teeth off her shin but she is still able to either bite right though the socks and/or pull the sock off and bite again.  I finally ended up making her a little pair of handcuffs out of pipe cleaners and plastic chain links.  In her red jumpsuit and restrains, Anya looks like a little convict.

12/20 Almost done..

Anya finally stopped puking around 8 or 9 last night.  Now she's in her irritable, hand biting, ear scratching, nothing makes me happy stage.  She's been holding down 15ml/hr pedialyte through the night and now we are finally starting to give a little food (~1oz formula).  Deciding when to give her food is always a touchy situation.  She acts hungry but if you give it too soon she starts back in to her puking episode.  She (and therefore we) was finally able to sleep from around 9:30 until 1am but now, even though she's acting tired, she just won't shut off.  Hopefully food will calm her down.

12/19 Little pip-squeak still sick

Anya is still sick. Still vomiting at least twice/hour and still very lethargic.  Katie and her are back in the hyperbaric chamber tonight.  It has been a long time since we used it and have been talking about giving it another shot as we just keep finding more and more research data supporting its potential effectiveness (plus we have it, might as well use it).  We also decided to get Anya back on CoQ10 and L-Carnitine.  It's standard procedure for mito kids but we've tried it a few times over the past couple years for a few months each trial without noticing any difference (still getting sick at regular intervals).  Again, after finding more and more data to support it, if Anya has mitochondrial dysfunction it should be helping her.  We'll give it a good 6 month trial and reassess then.

On a diffent note, Anya new switches (http://www.ablenetinc.com/Home/Products/Switches/tabid/57/Default.aspx) arrived in the mail just now.  We've played with a few diffent styles of switches w/ her therapists lately and found a couple that she can activate fairly well.  She'll be able to use these switches to turn on toys and potentially begin a form of communication.  New toys, Yea! 

Hopefully the princess will actually sleep tonight....

12/19 Our little angel is sick again

Another sick day. Anya started around 3:15 yesterday (Thursday). Same old story.. not sure what triggered it. Anya and I are just laying here in bed tonight, just like we've done so many times these past two years, waking about every 15 minutes to the sound of her coughing or retching to tilt her head forward and help clear out the mucus and vomit. These past several weeks have been hard on her. She has surely been loosing all that weight she so proudly gained. I have absolutely no doubt she'll gain it back again.. She will be fine.

Anya is doing well.

FYI: She likes pistachio pudding..

12/9 Snow day

Wow, this is the boys first snow day from school, they are loving it! Anders thinks it's great and Aksel's just excited because Anders is so excited!! Not sure what to think about the weather, must say I miss Colorado's winters.

Anya is sick again, this is only 6 days after her last episode. So discouraging, she had gone 30 days twice in between episodes and put on some weight. Needless to say her weight has dropped! Hopefully this will be over soon, until then back to suctioning!

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12/3 Baby-back..

I got my.. baby-back, baby-back, baby-back...   

12/3 That's enough...

Okay, that's enough Mom!  I'm really starting to miss my little girl.  If she's gone in the middle of the night, I stole her back. 

Good night Sunshine!!!  Feel better!  See you tomorrow night..

Dad

12/1 My day at Nana's...

12/01 Anya's at Nana G's

We are missing our little girl today as she is staying at Nana G's for a few days to give us a little break...