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.