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... 

11/29 Website back online... and baby-doll sick today :(

Hi all!!  Sorry for the website disruption.  Sometime in the next few weeks I'll try to get it all back together again.  I was able to archive all the guestbook items but I just need to figure out how to transfer them over to this new website's format... 

Anya woke up sick this morning around 3 am...  same old story.. never saw it coming.  Unfortunately it came during the weekend when the two oldest boys are at Grandma and Grandpa's and we were going to try to get some x-mas shopping done.  Oh well, the piece and quiet (funny how we now consider only two kids crying as being quiet) is very nice.   Anya appears to be snapping out of it and may be ready to start eating again soon.  She goes through a very (VERY!!) annoying stage of teeth grinding as she gets her energy back.

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11/9 Thanks for the visit

Thanks for the visit Uncle Andy, Aunt Crystal, Aunt Pam, Emma, Cassie and Caroline!!!
It was so great to see all of you.

10/31 Happy Halloween

Tinker Bell had a great Halloween!!! Unfortunately Skittles clog her g-tube...

10/29 Anya's baby brother

This is my new baby brother, Bodie Jon Jackson, born 10/22. He is such a little show-off. He can sleep really well, eat by mouth, and all sorts of cool stuff...

10/24 Pumkin Patch Picks..

Link to new baby photos....

http://picasaweb.google.com/katie.jacksonfamily/NewBaby#

10/22 Everyone is healthy!!!!

10/22 Back in the Hospital

Well we are back in the hospital but this time it is not for Anya.  It is for her brand new BABY BROTHER!!!!!!!!!!!!!  That's right!!  I know it is a suprize to many of you.  we just wanted to keep that a bit private for a while.  Any way, the stats are 20inches 8lbs 5oz. born at 2:30am.  He didn't come with a name tag so we are not sure on that part yet but we'll figure that our eventually.  Bottom line is that he is healthy and perfect.  Mom is doing just awesome.  She was absolutely amazing.  We'll get pictures on soon....

8/13 All is well again

It was a relatively short episode only lasting from around 9am until 6pm last night.  She slept well last night which is unusual following an episode.  She's been back to her happy self all day.

10/12 Sick Again

Anya is sick today. Wow, was it nice when she made it 34 days without getting sick. It seems we may be back to every 7 days again. Bummer. The frustrating thing is we have no idea what made her get to 34 days, it must have been chance. Hopefully she will be back to her smiling self in no time!

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10/11 Anya had a fun day!

But Aksel had a better one...

New record!! but sick again.

Well she had a good run.  Actually broke her old record of days not getting sick.  I believe she went 34-days but then was sick most of the day Thursday, was good yesterday and then sick again all day today (two years in a row she pulled this stunt on her mom's birthday).  We may have a few ideas on what worked this past month.  We'll see...

October 1 Great News

Anya weighs over 20 lbs. This is great news. It has taken us 2 years to get her over 16 lbs. and in the last 4 months she has put on 4 lbs. this is awesome!!!!!! She looks so much healthier and actually has chub on her thighs. Her ribs do not stick out and her arms have some weight as well. I also think it might be time to move to size 3 diaper. WOW -we have been at a size 2 forever:) Great job Anya. We are so proud of you!

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9/18 All is well...

Tickle Torture

Waahoo!!

Look Ma! No Hands..

Puking Again

Anya has started puking again early this morning. She was sick on Saturday as well. She is starting to loose weight, these last couple episodes have lasted long and not much time for food in between. We continue to look for answers EVERY day. We'll see if that day comes......

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August 25 Not great....

I know it's been a while since the last post but there hasn't been much to post. After writing that Anya was really doing well of course she started to get sick. The last 3 weeks have been awful! She has been sick more than healthy and it's really taking a toll on our emotions. I can't imagine what her little body must feel when she starts vomiting. My little princess just looks at me with these big blue eyes as if saying "mommy do something, take this vomiting away". I feel so bad when there isn't anything I can do for her, it is such a helpless feeling. I have never been so sad, mad, hopeless, frustrated, angry........ To see your child so sick is that absolute worst.

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8/1 Stander.

Anya finally got her stander last week. She started out going in it about 4 times/day 10 minutes each. She's been tolerating it very well so we're slowly increasing time. We are firm believers in following a natural developemental sequence of stages, i.e. creep, crawl, stand, walk, run, fly (we aim high). This stander is not really intended to teach her how to stand but rather to get her hip sockets to grow appropriately. When the bones don't experience that normal upward stress, the socket doesn't know to grow around/over the ball. Hopefully this will prevent future hip dislocations and potential surgeries. Plus it's pink. The boys love pushing her around the house (away from the stairs).

We're all about safety!!

8/1: Just saying Hi!

7/31/08 Lots of new stuff...

And in this corner, weighting in at 18 POUNDS!!!!!! Anya Jackson!!!  (in the pink shorts of course).  That's right, Anya now weighs 18lbs.  She is definitely heading in the right direction again..

She has been doing really well lately.  Katie and I recently returned from a two week trip to Arizona where we took Anya for some "intensive" therapy.  Not so much intensive with respect to effort on Anya's part but more intensive in time and sensory input.  We took her to a place called Futures Unlimited (www.futuresaz.com) where they practice CCDT (Chronologically Controlled Developmental Therapy).  We've said time and time again that we'll try anything within reason (and as some of you know, not-so much within reason).  We were referred to Futures from Dr. Klinghart in Seattle, and after learning more about it and speaking with James and Susan Snapp, siblings who's father Ed Snapp developed the CCDT protocol, we just felt it was a fit for Anya and worth a try.

We are very happy with the results we've seen.  The biggest breakthrough for us is that Anya now tolerates being placed in prone position (on her belly).  She used to just HATE this.  We'd been trying to get her to do this for two years.  She would cry, twist, squirm and ferociously bite her hands (it's an Anya thing) the minute you placed her in that position.  Today, she will hang out in that position for 30 minutes (perhaps more if we tried) with out fuss.  No only is she not fussing but she is bringing her head up, looking around, smiling.  I wouldn't say she loves it but it is night and day from where she was at. 

She also no longer bites her hands like she used to.  She's been known to draw blood (her own or any one brave or stupid enough to get their fingers near that mouth).  One improvement that we'd seen recently, even before the therapy, is that she would appropriately respond to us telling her to get her hands out of her mouth.  It took her a moment but she would pull it away.  Although sometimes, if we weren't watching or if she was acting like her brothers and not listening to us, she would get a hold of a hand an just chomp.  She would just let out a huge scream and cry with a confused and frustrated look on her face with tears streaming down her cheeks.  After the therapy we've noticed she doesn't bring her hands to her mouth nearly as much (perhaps 10% of what she used to do).  And now when she does, she just mouths it a little.  She hasn't bitten since we've returned.

We actually planned on going to Arizona several months ago but canceled because she was sick and puking so much.  We finally just decided that if we don't do it just because she is puking, we may never get to do it.  Prior to the therapy she was getting sick nearly every 3-4 days.  She was pretty sick the first day of therapy but then each of the days following that she would maybe vomit once or twice throughout the day but never fell into her typical episode where she was completely lethargic.  Since we've returned I think she's only had two very mild episodes that where over within a few hours compared to a few days.

So much more to add to this... we've been doing a lot with her and just haven't had much time to write about it.  We had a couple great appointments today actually that could offer us much more potential.  Just know, Anya is doing better than ever.  She has a long, long, long way to go but SHE WILL GET IT!!  We really feel we are finally on the right track...

July 12 All is good.....

 
I know it has been a really long time since I have last updated so I wanted to quick add an entry. Everything is going really well. Anya, Pete and I just got back from Arizona where we did a 2 week intensive therapy treatment that was very interesting. I will update later about the treatment but it went really well. We missed the boys like crazy but was nice to spend 2 weeks with just Anya, giving her our full attention:) She continues to vomit every couple days but at least we are able to get most of her feeds in.
 
We will update later about her treatment and new pictures but I wanted to let you all know she is doing fine!
 

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June 22 Not a lot going on.....

Anya is doing fairly well these days, she continues to vomit every
couple days ( about 4 days in between) but the episodes are not as
severe as they had been. She actaully hasn't missed a full days
nutrition in a couple weeks. That has helped a lot with keeping her
weight at a steady 17.9 lbs. I think if the episodes continue like
this we may see some more weight gain, I'm optomisitic! Last week
saturaday her J-tube (goes into the small intestine) got out of place
and was pointed straight up her esophogus. So for the whole night her
tube was going straight up her throat, needless to say, she was
vomiting the whole time. We figured it out and took her to the ER and
it was put back in the correct location, she immediatly stopped
vomiting! Always something........ It's a miracle she didn't aspirate
and get pneumonia.

Anya is sick today but doing quite well. I think we may start food
later this evening. Anders is now camped out in the bathroom for the
night, he just woke up out of a sleep, vomiting all over. Ugh....... I
have seen enough vomit to last me a life time :) So, off to clean!

6/6 First bike ride

Anya was LOVING this!!!! It took a lot of trunk support but her head control was great and she grabbed and held the handlebars right away.

6/8 Sick again

Little pumpkin is sick again. Started around 8:30 last night w/ zero warning.

For our own records, also sick on..
Thursday, May 22nd starting 9pm lasting until Sunday, May 25th
Thursday, May 29th starting around 11am lasting until Sunday, June 1st
June 2nd, Quit EleCare and started Similac Organic
May 30 began 7.5ml (5mg) Periactin /day (tripling previous dosage)

See Birthday Party Pictures here...

Click this link: http://picasaweb.google.com/katie.jacksonfamily/AnyaS2ndBirthday

p.s. Anya weighed in at 17lbs 2.8oz... Go chubalub!

5/22: It was a very happy birthday!!!

Happy Birthday to Anya!

Happy 2nd Birthday baby girl! What a 2 years you have had. Mom and dad are so extremely proud of you and feel so grateful to have you as a daughter. You are a blessing! Anya has been healthy this week and more importantly is healthy today!!! Praise the Lord! Thank you for all your prayers and thoughts these last two years. Pete and I are very thankful for the amazing support we have received over these last 2 years. THANK YOU!!!!!!!

Last week we found out Anya needed to have an echocardiogram done because an EKG came back with abnormal results. Needless to say we were very concerned. Well, yesterday we found out her heart is healthy and her EKG and Echocardiogram looked normal. Good job baby girl, that's a good test to pass:) We also found out that Anya is almost 17 lbs. That is great success. She has gained 1 pound in a week. (She hasn't gained a pound in 18 months so we are very happy).

All I can say today as we are celebrate her life is, Hallelujah!!!!!!!!!!!!!!!!!!
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5/20 Update

Anya has had a great couple days recently. Happy, smiling and
giggling. We started her on Zyrtec (per Dr. Mom's request) and it
really seems to have helped with her allergy symptoms. We're tried
other antihistamines in the past with out success but this one seems
to be helping.

As some of you know, we had some nerve racking news last week where
are new pediatrician thought she noticed cataract developing in both
of Anya's eyes. The good news is we have a very observant and
thorough pediatrician. The bad new is she was right. We went to a
pediatric ophthamologist today that confirmed it.

Here again there is good and bad news. The good news is that he does
not believe it is currently affecting her vision although we will find
out for sure next Tuesday when they do a PEV exam
(http://en.wikipedia.org/wiki/Visual_evoked_potential ). The bad
news it that the cataract is located in the worst possible spot,
center posterior. Being located here disrupts the vision the most.
If they get any larger or if we find out on Tuesday her vision is
impaired, she will likely require surgery.

These pics are a few weeks old, but just wanted to share...

Sort of a rough day around here, emotionally. Anya is down to a mear 15lbs and there are a few other issues that arose today that we'll get into at a later date

Sick Again

Baby girl is sick again. This is crazy, she was sick last wednesday and Thursday, so she has had only 3 days in between this spell. I am ready to loose my mind. I can't imagine what is causing this but we need to find out soon, she is so skinny. I can't even imagine what the inside of her esophagus must look like. Please keep Anya in your prayers, we need a solution for this vomiting.

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5/8 All is well

Anya is doing great again. She snapped out of it around 12:00 noon.
Full energy and ready to eat. Hopefully she'll sleep tonight.

5/8 spoke to soon

Long night of vomiting every 5-20 minutes...  far from over this episode this morning.

5/7: Another sick day;

Six days from the last episode.  That's two weeks in a row they were only six days apart. This following about 7 weeks of seven days apart.  Prior to that they fluctuated from 7-12 days apart.  We are obviously hoping this is not a trend of her getting worse.  She entered her episode around 6:30am.  We decided to take her into the ER around 4 this afternoon per the advice of a much more proactive group of docs we are working with now.  She got the basic IV fluids + zofran.  We are home now and although she is still definitely in an "episode", her vomiting seems to have lessened in volume and frequency.  Well see how tonight goes.

5/1 Sick day..

Anya decided to change it up a bit and get sick a day early this week.  Same old story... 

 

The boys had a great time today to see Great Grandma and Grandpa and Great Aunt Sue.  Thanks for lunch!! Sorry Anya couldn't attend :(

 

 

 

4/26: Sick again..

Anya started vomiting again yesterday late afternoon.  Just like last Friday (4/18) and the one before (4/11), etc...  we started her again on Carnintine last night. 

 

We recently met and have been very happy with many of Anya's new docs here in Wisconsin.  It has been quite a refreshing change to see the greater level of care and communication between the specialties, as well as there much more rapid response and sense of urgency.  No revelations yet as far as a diagnosis goes but at least we now feel like she is finally being looked at seriously. 

oops

oops.  I just notice Katie just updated yesterday... Oh well.  A two-fer.

4/11: Update

Hello all.  Sorry it's been so long since any updates.  Not really much too report I suppose.  Same old story. Anya's sick right now, just like last Friday, just like the Friday before that.  She is still about 16lbs despite getting a consistent 1200 calories /day for several weeks now.  We aren't able to continue feeding her during the episodes like we thought we may be able to. So those few days of vomiting each week continue to take their toll on her weight gain.  She is getting so long.  Funny how I would normally say "tall", but when she can't stand it become "long".  What ever you want to call it, it's getting to be quite a distance from head to toe.  She is still as cute as ever. Still smiles. Still occasionally giggles. Still brings us to tears. Still humbles us. Still breaks our hearts. Still fills our lives...            We're still hoping. Still fighting. Still praying...         Still working on a full recovery.

Sorry for not updating sooner!

I know we have been terrible at updating since the move. Not sure where the last couple weeks have gone! The boys are still not in preschool so much of our day involves entertaining! Still trying to get settled. We were actually suppose to be enjoying a family vacation in mexico this week but unfortunately we're still in Wisconsin. We made it to the airport and check in only to find out Pete's passport had expired!!! Needless to say we had a disappointed family, boy did we need that vacation:)
 
Anya is doing well. She still continues her 7 day cycles. So frustrating, we haven't gotten too far with her new doctors here in Madison but we are going to see a couple more in May. I keep holding out hope that someone can help us with this vomiting issue. Poor little peanut is just so skinny! The vomiting is def. the worst part of her illness for me to handle emotionally. I just feel so bad to see her little body retching, puking and lethargic. Well, I hope we can do little bit better with the updates in the next couple weeks. Thanks so much for the continued love and support.
 
 

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3/19 Update

Hello all.   Anya had her 1st EEG when she was about 2 weeks old. It was normal.  Her 2nd, at around 2-1/2 months, showed very slow signalling w/ continuous spikes representing all her neurons firing at once.  Although that did not mean she was having seizures, it did indicate she was at high risk to do so.  Her 3rd EEG, at around 5 months, showed the sames spikes but the signaling was slightly faster (but still markedly slow). Which meant things were improving...  Anya's had her 4th EEG done last week.  In the 1/2-hour long procedure she had only 1 spike occur and the background signalling speed was "Normal".   YEEE  HAAAA!!!  That's my girl!!!!!  We are trying to schedule her MRI next.

 

This past week has been a really good one for Anya.  Happier than ever and doing well with her playing and misc therapies.  We made it a whole 12 days between vomiting cycles (she's sick again now, started yesterday).  With her new J-tube she's been consistently getting near 1000calories/day (excluding yesterday and today).  Although her sleep patterns have regressed, at least she is happy when she is up.  For the past few weeks she's been waking at around 3am and just wants attention.  Anything for the princes... 

 

I remember writing about a year ago that she just needs DESIRE in order to thrive.  Happy to say 'She now has it...'  She desires attention. She desires play.  She's got the desire we prayed for. She going to do it....  

3/8: Seattle Doc went well

We felt our trip to Seattle to see Dr. Klinghart was well worth it (but time will tell).  He seemed very knowledgeable, caring, proactive and offered much hope.  We finally, after so long, have a solid plan of attack and protocol to follow to address Anya's issues from multiple angles.  We won't get into it too much until we know if we're on the right track.

 

As many of you know we recently moved to the Madison area.  Aside from getting burglarized on Wednesday afternoon the neighborhood is very nice.  That's right...  I (Pete) was with Anya at her Neurology appointment while Katie stayed home to give the boys a nap.  She decided to take a nap her self and awoke to find two guys robbing us.  They fled when they saw somebody was home but Kate was pretty shaken up as you can imagine.  We are just thankful nobody got hurt.  I don't want to get into too much detail because I'm not sure if this website (babyanya.org) was the homepage on the computer they stole, so they potentially could be reading this.  If so, please find a safer hobby and sorry if our attack dog licked your hand too sloppily.

 

Oh yea, the point of this website.. Anya...  She has been having more frequent vomiting spells (every 4-5 days) and is down to 15.5 lbs.  On Wednesday (the morning of the robbery) we had Anya's G-tube replace with a J-G tube.  This will allow us to continue feeding Anya directly into her small intestine and by-pass her stomach while she is sick.  With this she can continue caloric intake even while sick which may be huge for her. EEG on Monday and MRI coming soon.  Fingers crossed.

 

Feb. 25

Good News, we made is safe to our new house! The kids traveled great and the roads were good. The weather is a bit cold for us, won't take long before we get used to it!! We like our new house, and so far the area seems to be very nice! No complaints.

 

Bad news is Anya started her vomiting cycle this week! Poor baby girl. All the kids are sick, the boys have a bad cold and I'm sure Anya picked that up as well. So between moving boxes, unpacking, blowing sick little noses and giving extra hugs we are a busy household! We have a very important dr.'s appointment this Friday in Seattle WA. Please say an extra prayer that Anya gets healthy and is able to travel safely. This doctor appointment could really give us some much needed answers. Thank you.

 

2/18: Better now.

Anya snapped out of it last night and has been able to hold food down throught the night.  Time to pack in as many calories as we can in the next 7 days until she starts it all again....

 

Poems

I just wanted to share a couple poems I came across today.  We, as parents, can only guess what Anya is feeling.  I couldn't help but assume it is in these words...

 

 

source:

http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/lauren_poems.html

please check out her website as well...  I think Lauren is about 18yrs old and is suffering from Porphyria/

 

With courage and strength we fight the good fight, all day, everyday, through day into night. Our battles are lonely, confusing and trying, all the time we're determined not to think about dying. But we fight the good fight, and we know we can win, for our will to survive really does lie within. We hold our heads high and we live for today, we always are trying to keep our illnesses at bay. Through good times and bad, we keep our futures in sight, for we will not give up, we fight the good fight. Lauren

Dark, it's dark. The light runs away from me. Not alone, but lonely. Scared. Anticipating. Angry. However, a bleak light shines through,  making it past the cold wall that surrounds me. Sad, but hopeful,  for the light that shines through  renews my faith in something. Something. As long as there is something, I have hope. Lauren

  

Dominic suffers from Cyclic Vomiting Syndrome (CVS), just like Anya. Oh wait, I forgot, Anya doesn't have CVS according to one of her doctors because CVS is not a real disease. It is just something teenage girls make up to avoid going to school... (what a Jack-ass)...

 

From: http://www.cvsaonline.org/CVSAKidsZone_files/CVSAKidsZone.htm

 

I Wait

By Dominic Gallardi

 

I know it's always there,

Waiting to strike;

I know you all care,

But, this is my fight.

 

I count down the days,

Wishing it not to come;

I feel the first faze,

But, know I know I can't run.

 

I hope for a cure,

To this ugly disorder;

Until then I pray,

Each occurrence will get shorter.

 

Thank you for listening,

To my feelings and fears,

Thank you for helping,

Dry the children's tears.

2/15 Sick again

Again sounding like a broken record but she is puking again... Morning started great, happy as can be and then around 9:30 she started.

2/24 Happy V-day

We are so happy to report Anya is doing GREAT! She has been so happy these past several days.  She is smiling a lot and giggling consistantly and appropriately when being tickled.  Her breathing has been great as she is still getting over pneumonia.

Discharged!

Settled in.

Anya made it to childrens okay and is all settled in. Its a brand new hospital w/ nice big rooms and a beautiful view of the snow covered city from our 8th floor, corner room. Too bad nice views don't cure pnuemonia. She's getting a couple more xrays later tonight to reconfirm pnuemonia. She is still requiring oxygen, has labored breathing and weezing....

There goes my baby......

We're finally in route (6pm). Snow storm making the drive long.

3/4 pnuemonia again

We're back in the er and anya again has pnuemonia, a lttle worse this time. She will be transported to Childrens Hospital to be admitted shortly. On top of that she began vomiting again.

2/2: Still going..

We thought she was going to snap out of it a few times yesterday but unfortunately she did not.  She held down water from around 11pm until about 4 this morning and slept really well but then slipped back down hill.  After finding a few articles dating back to the early 1900's we had reason to suspect her Uric Acid levels to be elevated.  We began testing on Thursday (pre-episode) and sure enough, they were. We tested again yesterday during the episode and they were elevated even higher.  We plan to test again after she recuperates.  Uric acid levels are essentially dependent on how our body breaks down proteins, so hopeful this will be a valuable piece to her very confusing puzzle.

2/1: Spoke to soon again

Baby-doll seemed great this morning. Couple more smiles and just normal energy level.  But then around 8:30am she fell into another episode. Again, 7 days from the start of her last episode..

1/31 Doing Great...

Anya has been doing so well these past couple days. She is smiling a ton. Smiling when she's tickled, smiling for books, she smiled after a taste of tea, smiling while playing with toys. It has been awesome... (see video above or on Video/Pictures page). She is getting the hang of reaching for objects and seems to be driven to successfully do so... We're so happy and proud of her...

Home now

CT and Xrays where fine. We are home now. Anya is still lethargic but hasn't vomited in 2 hours...

1/25 back in the ER...

Anya's currently in the er getting dehydrated, chest x-rays and head CT scan. Nothing new, so not to worry. Just want to be thorough. I'll update when I hear anything.

1/25 Off to the Hospital

Anya is going to the hospital for some IV's. Not sure if she will be admitted.

1/24: Sick again

I hate to sound like a skipping record but here we go again...  She had a great couple days, smiling alot and seemed well but she woke this morning completely wiped-out and vomiting.  As we continue to research and try to figure this girl out....

Go Pack, Go!!!!