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!!!!

1/15: Finally, she's done!!

Knock on wood but she finally appears to be through this episode (11:45pm, 2 1/2 days).  She hasn't gotten sick in two hours and we were able to give her a bath, get her in some fresh PJ's and start putting food in her belly.  We're trying something a bit different this time to reintroduce food. She's just getting MCT oil, amino acids, brown rice syrup and water (fat, protein and carbs, all in their easiest forms to digest).   Her 'recovery' (if that's what this truly is) was a bit different this time.  Normally she snaps out of it and is wide awake for8 hours. This time she was wide awake for an hour or two and then showed signs that she was ready to be put down to bed (the 'sign' actually reads "leave me the heck alone" but close enough.  We'll see what happens....  finally time to sleep!!!  Thanks again all for your thoughts and prayers.

1/15: Still going...

It let up from about 3:30 until 6:30 this morning and we thought she was through it but then she quickly fell back into her lethargic state and the vomiting continues...   What could this be..................... 

Here we go again

Anya started vomiting this morning. Let's pray this goes by quickly!

1/06: some weight gain..

I'm 17.3 lbs... yea!!

1/05 Weee!!!!!!!

12/30 Anya goes sledding

Anya went sledding today for her first time... More pics here

12/27 Good news / Bad news...

The good news is that Anya finally stopped vomiting. She snapped out of it and got her energy back around 3 this morning. Now she just appears to have a cold she's fighting.

Now for the bad news.. Unrelated to Anya but still a sad day for our family. Our dog, Summit (aka Sum-Bum or Summy), passed away this morning. He was a beautiful Great Pyrenees/ Golden mix who was great with our kids. He was white (when clean), fluffy and a great cuddler. We were blessed with Summit about eight years ago when we got him from the Denver Dumb Friends League (the pound). He loved going for walks or being off-leash and exploring, chasing rabbits (I'm proud to say the old man actually caught one last year. I think he was as shocked as we were when it happened). We enjoyed many adventures (pre-kids) with him like camping and snowshoeing. He had such a calm and patient demeanor, yet a zest for life (up until these past few months).

Summit had arthritis for the past few years but just last week we discovered he actually had MS. The Vet, whom is a brilliant man, suspected the MS was the result of Helicobacter Pyloris. We got the blood work back a few days ago that confirmed his suspicion, unfortunately it was too late. Summy had been going down hill quickly. Last week he could no longer get up or down a single stair. Yesterday he could no longer walk. He slept with us last night and this morning he was unable to even stand so we took him to the Vet to make the heartbreaking decision. As much a it hurt, Sum-Bum always walked with pride (it was cute how he would seem embarrassed if he tripped or missed catching a ball). This morning the pride was gone, he was ready to go... We love you Sum-Bum and we'll miss you dearly... for more pictures, click here.

Merry Christmas

I hope everyone is having a Merry Christmas! What a wonderful day to celebrate with friends and family. We are enjoying some family time as well, and busy playing with new toys! Anya is still sick, we are really trying to just keep her out if the ER. That is the last place I want to be today. So hopefully she will keep down some pedialyte.

 

Merry Christmas and Happy New Year!

Ugh Anya just started puking

Anya just started puking after a long 28 day stretch. I really didn't want Anders's B-day and X-mas to be consumed with this. I just wanted to celebrate all of God's Blessings without being worried for Anya's vomiting. We have so much to be grateful for yet when she starts vomiting I get so worried and can't think of anything else except for how scared I am. I pray she gets better in the next 24 hours so we can celebrate Christmas, Jesus, life and health!!

God Bless

 

12/19 Anya is doing well

Anya is doing really well. She has been smiling like crazy lately! She is truly a GOOD baby despite her health issues. She is such a blessing to this family and we are so thankful for her fighting spirit. Anya is starting to play with some of her push button toys. She really enjoys reading books and helping to turn the page. Very Cute! We got her a Jumparoo and she is doing surprisingly really well in it. She can practice weight bearing and head control as well as play with all the toys that are attached to it.

 

We are still working on gaining weight. She has a metabolism like Pete! Long and lanky!!!! We have started to give her coconut milk, we'll see if that helps for putting on some weight. If she could only have some yummy X-Mas treats. We have been seeing 2 new doctors which we really like and feel hopeful that they can help Anya in some way.

 

Anders will be five on X-Mas Eve. Crazy, I know, I can't believe I have a 5 year old. He's looking forward to his B-day, X-Mas and of course all the presents. Aksel is doing well and curious about this whole Santa thing :) Should be a fun Christmas!

NEW PICTURES!!!!!!

 

12/12 Back From Breckenridge

Just wanted to update quick. We are back from Breckenridge. We had a family vacation before we leave Colorado and can't get to the mountains as much as we would like to. We really like Breckenridge and will def. make it a regular winter visit! The kids had fun and Pete and I are ready for our own vaca:)!!! Funny how it never really seems like a vacation for the parents. So much work but so worth it. Anders and Pete had a great day of skiing while Aksel, Anya and I hung out at the house. So much snow and Anders is doing Blue runs like a champ. We did a little sledding, made a snow fort, went for walks and played lots of games! Anya did excellent, no vomiting and stayed out of the hospital! We are thankful for the time we had together and in such a beautiful atmosphere!!!! Pete and I miss the outdoors and look forward to more ski and camping vacations when it isn't so difficult with the kids :) I hope they grow up to love the outdoors as much as we do! That's it for now, there is unpacking that is calling my name.......

 

11/28: Back home now

Anya and I are home now.  They monitored her oxygen saturation levels at Children's and they remained in the 90's w/o supplemental oxygen.  When we first got there, her levels match what we were finding yesterday and this morning at the pediatricians (mid to low 80's) but once we got settled in to the ER they improved right away.  We'll go back in again tomorrow and check it again...  Overall she looks good and seems to have regained her energy. She hasn't vomited since around 9:30am and is now taking in food and acting more hungry.    I think she'll be fine but I also think we got extreamly lucky to just happen to catch it early. Pneumonia is probably my biggest fear with her as it can get out of control quickly. I said it before and will say it again, She's a fighter...  Thanks all, we appreciate your support, thoughts and prayers.   Time to see if that little bugger is going to sleep now.

Off to Children's

Pete took Anya down to Children's Hospital this afternoon. We went in for a doc. appointment this morning and found her oxygen saturation to not be very high. We need to do what's best for Anya as much as I hate to see her go to the hospital. They will probably be home tomorrow if all goes well. Please keep little Anya in your prayers!

11/27- Pneumonia :(

Anya continued to vomit through this morning so we decided to take her in for IV fluids. Fortunately so..  Routine vitals while being brought in to the ER found that her oxygen levels were fairly low (pulse-ox read 85 where she is typically 98%).  They ordered chest x-rays and found trace evidence of pneumonia developing.  She's now on antibiotics and we'll just watch her closely for fever or rapid breathing and take her back in tomorrow and for the next few days to re-check her pulse-ox.  

 

We also hate to report she now weighs only 15lbs.  We've started to reintroduce foods this evening but her digestion rate appears very slow. 

 

Well, if nothing else, she's by far the prettiest sick little girl we ever seen (I may be bias).

11/26 Anya's puking again

Anya woke up puking this morning. I will update when she is feeling better.

11/26 Sick again...

Greetings all.  I'm not sure if we just got lucky for that 38-day stretch she had but she has been vomiting again (once Satuday night, a few times last night, good through the night but then started again this morning).  Who knows... 

11/20 Doing well

Sorry I didn't get a chance to update sooner but Anya has been feeling much better. She stopped vomiting Sat. evening and has been doing well since. This last episode lasted a long time, 3 full days, but we were able to get some fluids in her each day. The really big problem is that she is losing so much weight which she can't afford to do. So we need to think of something soon to get some weight on her. We are trying to get into a clinic in Houston that specializes in ped. GI. Hopefully we can get her in to see that doc. sometime in the next couple weeks. He could hopefully give us insight as to why the malabsorption problem is happening.

 

Happy Thanksgiving!!

 

 

Nov.17 Still sick

Just a quick update, Anya is still sick. She's been vomiting since Thursday. If she doesn't start holding down pedialite today she is going in for an IV for some hydration. Ugh, what a bummer. Just when we thought we were done with this. We still are very concerned that she hasn't gained any weight on the avocado diet. There are def. malabsorption problems going on just not sure what to do about it.

We'll update later.

11/15

Well it happened, Anya started vomiting late last night. What a bummer. We could tell she wasn't doing well, her mucus started increasing and I knew it was just time before she got sick. We are so happy with the duration between episodes but not sure what triggered it. We will keep up with the avocado and see if it helps. Today she will just get some pedialyte and hopefully be able to hold it down.

11/03 Weight Gain!!!

Yahoo!!  Anya finally broke the 17lb mark.  As I think we mentioned in an earlier posting, out of frustration we changed her food base recently to our own concoction of avocados, brown rice syrup and a bunch of different oils.  Well we finally ramped up her volume of feeds to our goal of  900-1200 calories/day.  She's gotten the full feeds the past two days and is actually acting more hungry. Tomorrow will be 1 full month without vomiting.  The last time was on Katie's birthday, Oct 4th.  We started her new diet on Oct 5th but I'm sure her not vomiting is just a coincedence if you ask any of her old doc... (sorry, still bitter).  Last week Anya was still at her seemingly locked weight of 16.5lbs.  Today she was at 17.15.  This is her first gain since February.

 

We also had an interesting phone consult tonight with a Dr. we've connected with through Wisconsin Hyperbarics.  He explained some of her recent labs with great detail, finally providing a bit of clearity.  I don't want to get into to much of the details but it looks like we need to do a lot of celation (removing toxic metals) for quit some time (6-12+ months, who knows..).  We plan start celation once we have a good regemin in place and after she gains a bit more weight.  The process unfortunately also draws good minerals from her body as well so we need to be carefull.  We are hoping to start at 18months (Nov 22nd).

 

Thats all.  Good night.

 

Happy Halloween

Just a quick update. Anya is still going strong with her healthy cycle!!! No vomiting, I think the avocado "recipe" we made up is working so far. She is also doing awesome with her little tastes of oral feeds. Great job Anya, mommy's proud :) We will post Halloween pics soon. Anya is Piglet, Anders is a skeleton and Aksel is a lion. Also, today was Aksel's first day of preschool, he did great! I was a bit sad but able to get lots done around the house with out the boys, wow, nice!

 

 

October 24 We're back

Hi everyone, sorry it has been so long since our last post. We were in Madison WI getting Hyperbaric Treatment for Anya at Wisconsin Integrative Hyperbaric Center, that place is amazing. We had a wonderful experience. I just want to say Thank you to all the staff at the center, they were so wonderful. They made us feel at home and the treated us like family, we were so sad to say good bye. Anya did well in the chamber, we have noticed some good things with her muscles, she seems to be using her back muscles a bit more, and her head is getting better. She doesn't look to the left as much and she is grabbing at her toys so much more. The biggest thing, she seems so happy, she is always smiling and we can get giggles more than we used to. Any little bit, we will take, we are so proud of her accomplishments!!! Our home chamber will be here today, so we will resume dives this week.

 

One more huge improvement, Anya hasn't vomited in 23 days!!!!!!! She was vomiting every 7 days before we switched her diet, we are so pleased. We switched her diet and I think it is making a big difference. Hope all is well with everyone!

 

 

HBOT

Anya started HBOT this week and is doing really well. She is working really hard in her OT and PT sessions.

Pete took Anya this weekend to WI and the boys and myself are joining then today. We can't wait to see Anya and Pete!!

 

Here are some pictures of Anya.

 

http://picasaweb.google.com/katie.jacksonfamily/AnyaAtWisconsinHyperbarics

 

 

 

Thank You

Thank you for all the thoughts and prayers  We appreciate everyone's focus. Anya had a pretty good day and started vomiting around 6:00 this evening. We will update later.

 

God Bless.

 

 

Spoke to quick

Anya just threw up, UGH!!!! I think with this new formula we need to slow the rate and quantity way down. It has corn syrup in it (which I am totally against giving her) which takes a long time for her GI system to digest. Corn syrup for many is very hard on a gut and a huge allergen, why are we using it??? Sometimes you just need to explore every option even if it is one I don't like :) We will give her a couple weeks on this and see if her GI system can heal. Why can't there be any baby formula without added junk in it, babies don't need that stuff :) I'm a natural at heart:):) So we will hope that this vomiting won't last long.

 

9/6 A good day..

Fortunately Anya stopped vomiting pretty early yesterday afternoon and help down feeding through the rest of the day.  She just got done w/ her PT session and did the best I've ever seen.  She was able to hold her head up while laying with her belly across the therapist's leg for probably a full minute.  She was also able to apply pressure down with her hands and supporting her shoulders. It was awesome to see and a much needed (for us emotionally) step forward.

Back to it

Well Anya is throwing up again. This is really frustrating and depressing. I have no idea how long her body can continue to do this. She finally was back to regular feeds on Monday. So last weeks cycle took a long time for her to rebound from. She's had 2 days worth of full nutrition. She is so small and needs to gain weight so badly. We feel so alone in this quest to find answers. I wish a doctor could just find something wrong so we could fix it!! The days she is sick, we are by her side and the minute she gets better I am searching for answers to help her. I want so badly to just sit back and enjoy my daughter without trying to heal her. I want that "magic pill" or a miracle for her health. I am so tired of trying new things and for them to fail her. Her mind and body are lacking the nutrients she needs. Until we get her to gain weight and grow we can't work on the other things that she needs. (She has a ton of heavy metals in her body, mercury, arsenic, tin, lead.... that needs detoxing.)

 

I need to get back to my angel, we'll update later.

 

 

Happy Labor day

Hope everyone is enjoying their long weekend and getting some relaxation in!!! Anya is doing better. She is still very congested and snotty but at least no vomiting. She has not been sleeping well not sure why but I wish that would change. She's been up most days by 3:00 am, acting kinda bored. So we usually get up with her, seeing we really can't sleep if she's up. The boys are both sick with colds. Hopefully it's the cold she already had so we don't have to go through that as well. She's cutting a couple teeth as well which could be making her restless. I hate to give her Tylenol or Motrin seeing it's really not good for her GI tract. She clearly has some allergies going on, her eyes are very pink and she itches them constantly, so much that she makes them bleed. I can not figure what the allergen is. I've cleaned her bedding, toys, changed all of our cleaning products to natural cleansers, taken particular food out of her diet, tried Claritin, and still can't find what is the culprit. We have done tests for allergies and nothing shows up, so I'm pretty stumped. Just one more thing to worry about!

 

Well it's time for a cup of coffee!!! Thanks everyone for the thoughts, prayers and messages you have given us. We appreciate them all.

 

 

8/31 Good news & bad news

The good news is Anya snapped out of it and has her full energy back.
The bad news is that it is 2 a.m.

8/30 On the upswing??

Anya is sleeping now after a long rough day. She is very tired but seems to be holding down food now.

So we saw a new GI doc today. Not "The" GI doc we plan to see but just did a first available visit. It was exactly what we thought it would be. He is essentially writing it off as a mito thing. As predicted, he suggested a nissen redo.

Apparently I am missing something here. Now I admit I know very little about human anatomy compared to all the GI doc we've seen, but how in the hell can they believe this is a reflux issue. I think they just hear a few select words from Anya history, assume they have the answer and lock in to their solution. They hear Baby, Feeding Difficulty, Failure to Thrive and Vomiting. They must think 'No Brainer, it's reflux' and then tune everything else out.

If it was reflux it would happen more during or directly after feedings, it would happen more when she was feeding laying down vs sitting upright, prevacid would have helped, it would have shown up on her PH-probe study. None of these are true. It also wouldn't have such a cyclical nature. It wouldn't just randomly occur every 7-10 days. My understanding of reflux is that it is an anatomic issue like the sphincter between her esophagus and stomach does restrict tight enough or perhaps the stomach can't expand enough to hold the volume. It is unlikely that her anatomy is changing.

Fortunatley we went into the appointment today knowing we wouldn't get any answers. We went in to get an EGG (video scope down the esophagus, stomach and into the duodenum) and colonoscopy scheduled so we can look for ulcers or other damage from all her vomiting. She's had the EGG before but we just wanted to check on it again. We also decided to put her back on Previcad so when she does vomit it is not as acidic on her esophagus.

We also found out today that out pediatrician didn't get exactly what we had asked for and we've been wasting our time giving her B-12 injections for the past 5 weeks and not Methyl-B-12. Regular B-12 is a simply vitamin you get from normal nutritional intake or that you can get from a capsul suppliment. Mythl-B-12 is much different... but Anya's sleeping, it's late and I'm tired... Good night.

8/28 Sick again (I'm sick of writing that subject line...)

Anya started getting sick around 9am. Unlike the last two episodes, this one was more typical. She hasn't been able to hold anything down all day (and continues as I write this at 11pm), and she has been very lethargic. She was actually up all of last night with a continuously running nose and coughing but she held her food down fine through the night.

So now what... As you can imagine, we are getting more and more frustrated and concerned. We decided today to find a new GI doc that actually doesn't mind doing what he is paid for (sorry I'm a little bitter) Anya has seen countless GI docs at Childrens and they all seem to just give up and blame it on the Mito issue. They might be right but I don't want to assume so and someday have an autopsy prove them wrong.

Their last suggestion months ago, which is where we gave up on them, was to place a J-G tube (or is it G-J, I forget) which is basically like the g-tube she has now but place lower in the digestive track, in the juejunum. This would bypass the stomach altogether. Or to redo her Nissen (re-tighten her esophagus). Either option, in our minds, is not the way to handle it. Sure, we could perhaps even sew her lips shut to stop her vomiting but the underlying issue still remains. Anyway, we got the name of a good doc that reportedly digs and digs until he knows exactly what is wrong.

What else.. Oh yea, we got some of her lab work back for mineral testing in hair samples. We speak with her PCP next week for interpretation. I don't what to say much about it until we know more but the results were abnormal with several elevated heavy metals. This likely indicates her bodies normal function to excrete such metals (which we all do daily) has been compromised. This system of sulfation and methylation is what we been working on with supplements lately.

8/27 Update...

I just wanted to give a quick update here.  Since the last entry Anya did have one more episode last Wednesday (8/22).  It was different thought, she just puked once in the late morning but got herenergy back right away and seemed to do okay. Then around 4:30 she did it again...  No big deal I suppose. 

 

I appoligize for not offering more updates sooner. It's been a busy couple weeks with not much action as far as Anya's concern (no progress nor regression).  I do have a lot to say jut not the time to write it all.  I feel like we've learned a lot recently.  The USAAA (autism) conference was in denver a couple weeks ago and although we couldn't attend do to a lack of childcare we did get copies of several of the speakers presentations.  The was a lot on biomedicine and hyperbarics.  Very good stuff.. Now I just wish we had an autistic kid...

 

Anya had a swallow study done this morning that she did okay on (I'm being generous by giving it an "okay").  She asperated quite a bit and didn't show any good consistant swallows. She also unfortunately didn't cough with each aspiration which is not a good normal response.  On the bright side our speech therapist was there and felt Anya offer some good other clues on when she ishaving a hard time.

 

Other than that, all is well...

 

Much Better

Anya started feeling better Monday afternoon, so that was a very short to be sick!!!! She was able to hold food down by Monday night, which is great seeing she is very thin! Not sure why she bounced back so quick, but we are very grateful for the fast recovery. We are trying some new things with her diet, hoping to get her gut working properly which is one Anya's biggest problems. When the gut doesn't work, the brain can't work nearly as well so that is our first priority. I just ordered a new blender and am hoping to make most of Anya's food using natural, fresh, organic real food. I think that will really help her body.

 

My parents and grandparents are flying in today. We are so excited to see everyone and have the kids spend time with great grandma and grandpa! Have a Happy Friday, thank you for all your support!

8/12 Sick again

7 good days have passed and she started vomiting around 6:45 this evening. She had a good day, zero warning signs. One moment she was her normal self, seemingly happy and okay, and then boom it hit her. Vomiting every 10 minutes since then and completely wiped out, instantly... We immediately started her on zofran and pedialyte but it's 11pm now an hasn't let up.

Anya has long ago fallen well off the bottom of the charts in weight (she's stll only 15.4lbs). We continue to get more and more concerned of her malnourishment. We've got some leads on what to do. It's unfortunately not as simple as just feeding her more. We are learning of what may be one of the underlying issues from several different books and now it is a matter of implementing certain diets and see what happens.

Holding Food Down

Anya finally started holding feeds down last night around 8:00. She was up all night, which she usually is once she snaps out of these spells. Today she has been doing fine and is back to eating regular formula. Hopefully tonight will be the night we all get some rest!!!!

Doing Better

Anya has been doing a little better today. She has managed to keep down 400cc's of electrolyte water and some baby food via G-Tube. She stopped vomiting around 3:30 am and just seems very tired and lethargic. So hopefully we will get some rest tonight and start the week off better.

 

 

8/4 Sick again :(

After a couple of really good weeks Anya woke up vomiting again this morning.  We took her to the ER right away this time rather that waiting a few days to see if the rehydration would nip it in the butt.  Unfortunately it didn't make a difference and she has continued to get sick through out the day.  We did test her ammonia levels this time and they were normal.  Normal is a good thing but just adds to the confusion...

 

On a positive note, we met with a new pediatrician (Dr. Debby Hamilton, Holistic Pediatric Consulting in Boulder, www.holisticpediatric.com) on Thursday and are very excited.  She is awesome!!  She is extremely knowledgeable about the entire system, which is what we need with Anya's GI, Neurological and Immune system quarks.  She really seems ready, willing and VERY capable of taking the bull by the horns in helping us figure out what is going on with Anya. 

 

Our initial one-hour consult lasted three hours as we told of Anya's long history and current symptoms.  She educated us on a lot of biochemistry and Anya's previous lab work-ups and talked what she'll be looking for in her 'investigation'.  Although Katie and I have been reading a lot on such subjects, this is an overwhelmingly complex faulty system we are dealing with and we weren't even getting close to understanding. It was clear from our discussion that Dr. Hamilton has a firm understanding of this system as a whole. 

 

On another positive note, on 8/1 we started Anya's Methyl-B-12 injections...we'll see what happens..  

Just an update on Anya's ratings

Anya has been doing really well and I think she deserves a new grade for her smiles. She smiles so much throughout the day! I would give her at least 7. She smiles countless times throughout the day and is VERY happy while eating. Absolutely loves to eat!!!! Yay, Anya!!! Keep those beautiful smiles coming :)