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 :)

 

 

Still Doing well

Anya has been doing really well. Last week my mom was visiting and was able to get some really good PT Sessions in (my mom is a Physical Therapist that works with children 0-3 with special needs). She was very encouraged with some of the things Anya was doing. She practiced head control, weight bearing on her legs, sitting and rolling and using her core muscles. Anya has been doing great at hitting a ball and watching it roll. She is getting cause and effect. And all the smiles were awesome!

 

We will be going to a new pediatrician this Thursday. She is a holistic pediatrician and we are very excited for Anya to be getting most of her needs taken care of there. Our last MD just didn't seem interested in all the Alternative stuff we wanted to try and were very much going with the traditional approach. Much of the meds they have suggested in the past never made a difference and am done with trying meds that she doesn't need. ex. reflux, seizure and formula that has awful indigestible ingredients. I am really thinking Anya never had a Mitochondria disorder. I think her surgery done the 5th day of life was done way too quickly and her body started to downward spiral from there. Then to add her vaccines on top of her overworked immune system really seemed to push her over the edge, In my heart I feel much of Anya's problems could have been avoided. Therefore, we are trying to "undo" everything that has caused problems. I wouldn't be surprised if her Mitochondria was compromised by much of the events that took place in her first 3 months of life, but I don't believe she was born with any genetic disorder.

 

So for now, we will take all the great days she has as blessings and work on diminishing all the bad days. She is one of the strongest little girls I know and God is taking care of her.

 

 

7/21: Update

Anya is still doing well.  She slept great last night.  The night we got home from the E.R. she did not sleep a wink.  She finally went down at 10:30 yesterday morning.  Man, this girls got some stamina..

 

Katie and I are getting increasingly frustrated as we see time slipping by and Anya's window of neurological development close a little bit each day.  Anya will be 14 months old tomorrow and she has really only made extremely mild progress at best.  Here is a subject/qualitative assessment of her developmental status.  We will redo this list every few months to see were she's at:

 

Scale of 1-10 (10 being the best or age appropriate)

• Head Control: 2/10 Although there are certain time she can hold her head up decently, they are few and far between.  Sometimes when she is laying on your shoulder she'll pick her head up and look up for maybe 20 seconds but that will be about it for that day, and even that is maybe twice a week tops.  Generally speaking her neck remains limp the rest of the time.
• Eye Control: 7/10 This has by far been her greatest progress.  6 months ago I would have given her a 1 or 2.  Her eyes where extremely slow to respond to light (dilating) and she couldn't/didn't track object much at all.  We did a lot of dark-room exercises w/ her to allow her to focus on a lit object and she progress with that nicely.  Today she can and does track any object even in an open area where there are outside distractions.  She doesn't do so 100% of the time though so I think it is more just a lack of interest than inability to do it.
• Hand Dexterity: 2/10 She has made some progress here as she would have probably been 0 or 1 6-months ago.  You can see her now at least try to reach for or hit a toy on occasion but it seems to take a lot of focus to do so.  She will stare at the object and frustratingly try to bring her hands together for better stability (her movement disorder is preventing her from any fluid, direct movements), she then holds her hands together and slowly and jerkingly straightens her elbows until her fists hit the object.  She does seem to show a little excitement when successful by giving a couple quick kicks with her legs.  She can momentarily hold an object (10 seconds perhaps) if we place it in her hand firmly.  She can not however pick up objects on her own.
• Legs: 1/10  Although she does have some leg strength she does not seem to have much control For example, if we hold her up and try to get her to support any weight, she can not. Her legs become completely limp.  On her belly she may try to pull her legs in a bit but its only enough to wiggle her little butt around a bit.  Far from enough to get a crawl out of her.  On her back she seems to do the best. She can kick a little and when you hold her feet and pump her legs she occasionally offer some resistance.  A hand full of times now she has been in her car seat or bouncy seat and she will kick frantically with excitement and get the whole seat bouncing or rocking.  She seems to have fun doing that.
• Arm/Chest: 2/10  If it were based on strength alone I would give a 9/10 but her ability to coordinate that strength into any useful movement is nil.  Although several weeks ago she was able to bare a little weight on her forearms, it has not at all been consistent nor for much duration (<10 seconds).  I really can say she has done it at all since then.
• Digestion: 4/10  Although she is still vomiting a lot I would say she is getting much better than where she was 6 months ago.  She no longer or rarely shows signs of abdominal discomfort and she produces far less gas that we'd need to vent out her g-tube.  She has much more regular bowel movements average 1/day.  She is rarely constipated where she used to not go for 3-4 days at a time.  She digests her current formula (metagenics UltraCare for Kids) very quickly where her belly is empty within an hour after a feed.  Other formulas just sat in her stomach for several hours making it hard to get in her nutritional requirements.
• Smiles & Giggles:  4/10  On average she probably smiles twice/day and giggles once/two-weeks.  We are very thankful for these but feel like she could show more signs of awareness to her surroundings (although maybe we're just not that funny).
• Skin/Complexion: 8/10  6 months ago this was probably a 4/10.  She still has small occasional rashes but they are so much better then they were.
• Sleep:  5/10  Although she is still not getting adaquit sleep, her sleep schedule has gotten much more consistent.  She typically goes to sleep around 8pm and wakes aroung 4am everyday.  She will then (typically) take a nap around 9:30-11am.  Occationally she takes a second nap around 5-6pm.  She still pulls all-nighters once every 1 or two weeks, especially following an episode of being sick.
•  Basic Skills: Rolling over 1/10; Sitting up 0/10; crawling 0/10; Reaching for toys 1/10; Holding in a pacifier 3/10; walking 0/10; Feeding orally 1/10.

I just want to clarify that I am not rating these to be pessimistic or negative of her development.  I am doing this because we are still, despite the slow start, working towards a full recovery. We need to know where she is at along this process to help us identify what might be helping.

7/19 We're home

We're home now and Anya is doing much better.  The last time she got sick was while having the IV administered (from 11-2).  So what have we learned??  The IV fluids, more times than not, seem to put a halt to her vomiting.  Therefore we've decided that the next time she gets sick, the very first time she vomits, we are going to take her in immediately for IV.  Although we've been told in the past that it isn't necessary if she's not showing signs of dehydration (no wet diapers, dry mouth, sunken eyes/temples), we need a new approach.  This just wipes we out and sets her back, especially for gaining any weight. She is still only 15lbs. 

 

We have yet to figure out what the trigger is of these events. 

• It's not a bug (although sometimes it was)
• It's not the weather (we've monitored the pressure and there's no correlation)
• It's not the temperature (she's done this in the heat of July and the cold of February)
• It's not the altitude (she's done this in the mts. at 10,000' and here at home at 5,000')
• It's unlikely her food (she's tried all different types and has gone the longest, 5-week, on her current food. IgG & IgE testing soon.)
• It's unlikely airborne allergen (she's been sick in all seasons and in different houses)
• It's not dehydration (if re-hydration via IV stops it, perhaps something as simple as giving her excessive water solutions could prevent it. although she's recovered before w/ out IV's and on the flip side she's continued to vomit following IV's, so that doesn't make sense either. hmmm)

It could be Candida overgrowth. Its a natural occurring yeast that a healthy body keeps in check. Google it for more info. she had been treated for it in the recent past and seemed to respond well.   perhaps its re-grown and needs further action.  We actually have a yeast culture sent out to Great Plains Labs and expect results early next week.  We also ordered an IgG and IgE allergen testing kit from Great Plains today.  When that comes in we'll go see our Ped to draw some blood and get that screening done.

 

All we really know about it is that it is recurring fairly regularly (7-10days at its worst and 3-4 weeks at best), she becomes extremely lethargic hours before it starts, her digestive systems seems to come to a halt (or even backing up), it typically lasts 24-72hours.

 

Anyway, she's good now, though a bit ornery, and "eating" like crazy...  (another clue.. when the episode stops it is nearly instantaneous, she is energetic, hungry and digests very quickly)

7/19 back in the ER

Anya is still sick and very lathargic. We were at copper mt and were going to try to take her the denver childrens bur decided not to risk the addition 1 1/2 hour drive. She was looking pretty wiped out so we are at frisco's hospital right now.

7/17 Sick again...

Unfortunately Anya is sick again. 7 days since her last cycle began. It
started late last night and continues every 10-15 minutes. Since day one
we've been trying to find the trigger to these events. I think we are
finally begining to understand.
The human body, at any age, is an amazing machine. "God don't make no
junk". When she vomits, she does so for a reason. When we were in the ER
last week I was asked if I wanted to try giving her something to stop the
vomiting. It felt odd saying it but my answer was "nope". In one respect I
said no because we've tried those 'somethings' in the past and it has never
helped. But had I known then what I know now I probably wouldn't have tried
them then either. Now I don't know exactly what's going on inside Anya's
little body but it is clearly telling us that whatever is inside her needs
to get out.
I believe the vomiting spell last week was a direct result of us trying to
introduce Neocate formula. It was suggested she try it for nutritional
purposed (addition amino acids and calcium campared to what she was on), we
were warned however that it contained nearly 50% corn syrup (that's a whole
nother topic, but 50% garbage. I just don;t get it...). After slowly
introducing the Neocate she began vomiting. As I think I mentioned in a
previous post, the vomit content was different from what we'd seen in the
past (I'll spare the details).
The episode prior to that, we believe was caused by a detoxing herb that we
perhaps gave her a bit much of (oops). Her vomit then was similar to what
it is today and similar to what it was when given detoxification herbs from
her ayruvedic doc several months ago. With out giving to much details, I'll
just say what is coming out looks nothing like what we put in. So I think
she has two different reasons for vomiting. One is when she is sick with a
bug or an acute alergic response and the other is when she is excreating
built up toxins.
So why is she detoxifying today? Well yesterday we opted to try something
new, Upper Cervical Chiropractic Care (see www.http://www.erinelster.com/
for more info). It is something a friend of our suggested months ago.
Unfortunately we didn't find it relevant at the time. But she finally
nagged us enough so to get her off our back we thought we'd give it a try
(totally kidding Cindie). In a nut shell Upper Cervical Care is correcting
the alignment where the spine meets the skull (if I hacked that description
I apologize Dr. Elster). This misalignment can occur as a result of a neck
injury or during the birthing process. When there is misalignment here it
restricts and/or pinches the spinal cord and can neurological malfunction
resulting in anything from headaches to immune system disorders to
developmental delay to seizures. As we said in the past, Anya need every
bit of help possible. We want to eliminate anything holding her back from
being the best she can possibly be. I do not at all believe this is her
underlying issue but I do believe it is worth correcting to reach her full
potential. Her x-rays and thermal scan did show misalignment so she did
have an adjustment. We will now be going back each week for repeat thermal
scans and adjustments and needed. Thermal scan essentially measure the
temperature differential along either side of her upper spine. A
temperature difference of more than .5 C indicates misalignment and the need
for adjustment. Eventually she will stabilize on her own. So what does
that have to do with detoxing? Well I call Dr. Elster this afternoon just to
let her know what's happening and she wasn't surprised. She said her
patients commonly show signs of detoxifying following treatment, although
not through vomiting, they they show other detoxing symptoms like skin
rashes, diarrhea, feeling ill, etc. So there you go... we made her get
sick.

We'll keep posting updates and let you know what happens after out next
visit next Monday. Oh yea, we are also hoping to start her methyl B-12
injections soon per the suggestions listed in the book mentioned below.

_________________________________________________________________
http://imagine-windowslive.com/hotmail/?locale=en-us&ocid=TXT_TAGHM_migration_HM_mini_pcmag_0507

interesting article

http://www.mercola.com/article/vaccines/neurological_damage.htm

July 12- Feeling Better

Anya came home from the hospital last night around 10:00 and has stopped throwing up. She still hasn't slept for the night, so we gave her some melatonin and hopefully she will get some sleep soon. Her little body needs the sleep. It's been a rough couple days, hopefully we can all get some sleep tonight and be refreshed tomorrow. Until then, I'm off to get some coffee!! Thank you for all your prayers and concerns.

 

 

Hospital update

We decided to take her in for IV fluids to avoid further dehydration. I was going to wait until morning but it didn't seem to be letting up. So hopefully this will nip it in the but and we can all get some sleep tonight.

We're in the ER right now, Anya has her line in and is sleeping peacefully.

7/11 Update..

Anya is still very sick :( but again, she'll put through.  I've gave her fair warning though... if she doesn't stop by tomorrow morning it is hospital & IV time...

 

On a different note, we are heading on a whole new, unexpected yet exciting path with treatment for Anya.  While at the bookstore last week Katie just happened to pickup a book that caught her eye, no thinking it would have anything to do with Anya.  The book is called 'Healing the New Childhood Epidemics; Autism, ADHA, Asthma & Allergies" by Kenneth Bock. see it here (http://www.amazon.com/Healing-New-Childhood-Epidemics-Groundbreaking/dp/0345494504).  As she began to read through a few pages though she realized quickly that it may have everything to do with Anya.  The book talks about how the "4-A" disorders is not so much a genetic issue as it is an environmental toxin issue.  "Genes load the gun, and environment pulls the trigger". 

 

The book is absolutely fascinating. We have now bought three copies so Katie and I can stop fighting over it and a copy to pass between friends.  We would absolutely recommend it to anybody, not only other parents with "mito kids" (although, especially them)  but every parent or parent-to-be and their physicians.  Anya should NOT have been immunized when she was. She was sick, weakened, had been though several rounds of broad-spectrum antibiotics and her immune system was push was past its limits... way past..   Fortunately there is still hope (in our minds at least) through treatments of detoxifying and rebuilding discussed in the book.  We have since made an appointment to see Dr Bock on Oct 4th, and are slowly (painfully slowly) trying to implement some of the therapies.

July 10 Sick

Well, Anya woke up puking this morning. We are not quite sure why, this is getting so frustrating. Just when we think she is done with this, she has another episode. Not sure what to try.....

That is it for now.

 

 

July 8th

It's been a while since our last update but everything is still going well. Anya has been healthy and making improvement with her head control, batting at her toys, and tummy time. She is now rolling over when she is on her tummy!! This last week she has gained more than a half a pound, which is awesome! She has also been taking small amounts of baby food orally. She LOVES to eat. We'll be doing a swallow study in August to make sure she's not aspirating. I would be really surprised if she was, she looks great eating, very coordinated. I love seeing her face full of sweet potatoes or pears, so cute! Well that's it for now. Have a great day.

 

6/21 Wonderful day!!!

Anya had a great day today.  Nothing special to speak of.  Just a good & happy day.

 

She had her annual assessment with Imagine! today.  They provide us with all of Anya's therapy services (www.imaginecolorado.org).  They have been absolutely wonderful through this whole process.  I can't imagine doing this without their assistance/guidance.  We have been very fortunate to be set up with such wonderful, caring, knowledgeable people.  During the meeting Anya sat in Katie's lap and just smiled from ear to ear.  Yes, she's given smiles before but these were long-lasting, beautiful, pure happiness smiles.  It's like she just knew everyone in that room was there for her, to help her, to love her.  She feels it.

 

It seemed then for the rest of the day she was just extraordinarily happy.  Katie is up in bed with her now playing with her toys together and you can just tell she is totally grasping the concept of happiness.  I've always felt in order for her to make progress she needs to have desire, some driving force to learn and expand her mind.  After seeing her today I think she's found it; the simple desire to be happy. I think that will take her a long way. 

 

6/18 Getting better.

Anya seems to be doing better this morning.  She continued to vomit throughout the day yesterday which finally subsided around 8 last night.  We started to feed her a formula/pedialite mix around 10 and she kept everything down through the night.  Hopefully now she can just catch-up on her sleep and recover.   Thanks for your prayers everyone...

 

6/16. Rough 24hrs...

Anya's had a rough past 24 hours.  She been very sick and vomiting all day starting late last night.  We've only had her taking pedialite and Gatorade all day and she is having a hard time keeping it down.  Typical wiped-out and lethargic with no warning signs of getting sick.  We'll see how she does tonight and perhaps take her in for IV fluids tomorrow. 

 

I will say it's nice to have to refer to her journel entries to see when she got sick last.  Last time was May 12th so it's been over a month which we're very happy about. 

-dad

 

6/8 Anya's still doing great!

Nothing really new to report but Anya has been doing really well lately. We
got a few more giggles out of her the other night again. Her vision
therapist visited on Monday and has noticed much improvement overall. She
still recommends revisiting the ophthalmologist to see if a vision issue may
be why she so strongly prefers looking to her right. Her tracking has
improved as well. She can now easily track lights in a dark room and is now
fairly consistently tracking objects. She was lying in the center of our bed
the other night and watched me (dad) walk from one side to the other,
turning her head completely from her right, down past her feet and to her
left. Every week is a baby step in the right direction. Tonight as we did
her dark-room therapy I held her wrist up and shined a small flashlight on
her hand and she watch her fingers wiggle so intently. Although the
wiggling fingers were result of her movement disorder, you just knew from
the look in her eyes that she was getting the feedback that she has control.

She has also been grabbing her feet a lot lately which started slowly about
3 weeks ago. And finally one of my favorite things, she slept in past 6
twice this week! Hopefully breaking her 4am cycle.

Go Anya, go!!

May 29th EEG

Anya had another EEG today and did pretty well. They got some good data. She is still showing Epileptic form wave pattern, or something like that :) BUT it is better organized than the last EEG. So there is improvement and we will take it!!!! That is good news. She's doing really well and we are very thankful. That's all for now.

New Pics of Anya B-Day Party have been added to Videos and Photos

 

5/23. Cleveland trip update

We had a good visit at Cleveland (Dr. Cohen for metabolic & Ghosh for movement disorders) and will give an update later. The short of it is we really didn't learn anything new (nor did we expect to). It did confirm we are on the right track by looking at a metabolic disorder. They fortunately aren't pushing for a muscle biopsy yet and they understand why we don't want one. They wanted to repeat a few of the blood labs and we'll get results on friday and set up a coarse of action accordingly.
For now we are stuck on a plane in oklahoma city. Bad weather in kansas city required us to divert the storm but we needed to get more fuel to do so. I guess that stuff's important for keeping the plane aloft. Anya has been great traveling. She's sleeping right now..

Happy Birthday Anya

Today is a great day to celebrate, Anya is 1 yrs. old. Happy Birthday Anya!!!! You've brought so much joy and love to our life. Mommy and daddy thank you for coming into our lives and making everyday so special. You have brought more meaning to our lives than you will ever know. We truly are blessed to have you. We love you baby girl, Happy Birthday.

May 21 Almost 1!!!!

Anya had a really busy weekend. We celebrated her birthday with a big party on Sat. It was wonderful to celebrate such a special day with friends and family. On Sunday all 3 kids had their baby dedication, it was really special. Tomorrow we leave for Cleveland to have a consultation regarding mito and a muscle biopsy. We will also meet with a movement specialist, should be interesting. Pray Anya does well on the flights, I'm a bit nervous.

 

 

May 12

Anya broke her really good run of not throwing up on Thursday. She started after dinner and a little throughout the night. She managed to hold half pedialyte and formula down Friday. It was a pretty fast recovery so that was good!

 

Happy Mother's Day to all the moms! Have a wonderful weekend.

 

 

May 4 Quick Update

Anya is doing really really well. Today she had OT, PT and Speech and they were all very happy with the progress she is making. Everything, her muscle tone (she's starting to use her stomach muscles which is great!), swallowing, tracking, smiling, verbal sounds, it's all coming together!!!! We couldn't be more proud of her, she is def. putting in the hard work to make these things happen. Great job Anya!!! We are so blessed to have been given three beautiful children. Praise God!

 

Thank you for your continued support and prayers. They ARE making a difference!!!!!!!

4/28 We got giggles!!!

Just a quick update. Anya has been doing very well. She actually giggled
today when I was tickling her armpits!!! It was awesome! She gave four
quick, cute purposeful giggles. We're so proud.

April 23 Feeling Better

Anya is doing better. She started to hold pedialyte down Sunday morning. She did get dehydrated but we were able to quickly replenish fluids once the vomiting stopped. I'm hoping today she has her energy back and gives us some of those beautiful smiles.

April 21 Baby Girl is sick again

Anya started vomiting this morning after her first feed. She has had a ton of congestion. I don't understand why mito kids have so much congestion, I would love an explanation. It is so hard to watch her sick especially when only 5 days have gone passed since the last spell. I worry so much for her. Her tiny little body working so hard to cough up this mucus. We'll see what tomorrow brings....

April 19th Anya is feeling better

Anya is doing much better. She stopped vomiting Tuesday afternoon and has been able to keep pedialyte and formula down. She's been in a lot of pain from her teeth, she has at least 2 or 3 teeth coming in. She has been grinding her teeth a lot, I know she is in a lot of discomfort. Plus she also has a cold which could have caused the vomiting. Who knows! This illness is so unpredictable. Today she has PT and OT, hopefully she'll have the energy to work on head control and some swallowing exercises.

 

Today Papa K and Uncle David come to visit. The boys can't wait, should be a great weekend.

Have a good day!!

 

 

April 17 Still sick

Well I thought Anya was on the up swing, she was looking good and seemed like her energy was back. Then around 10:00am she started vomiting again. She managed to keep most of her feeding last night, so she has had some formula and lots of pedialyte yesterday. We are not too concerned about dehydration but we will really watch for any signs and take her in if we need to. It's stressful just watching her, should we take her in, should we start pedialyte, did she have a wet diaper, do her lips and mouth look dry, does she seem lethargic?? Ugh!!! I get pretty stressed out the days she is sick, so many things to take into consideration. Please Lord help Anya to feel better soon, keep down her food and bounce back quickly from this vomiting spell.

4/15 Not doing so well today...

Anya was having such a good week (10 days since her last vomiting spell),
but around 3:00 this afternoon she went down hill pretty quick. We should
have seen it coming as she did give us her warning signs of being unusually
tired and had two good naps. It was unusual however for it to be so late in
the day. Typically she starts this around 8 or 9am. Hmmm. This girl just
will not give us a pattern to help us figure her out... All we got is every
7 to 10 days it hits the fan. She's still tough as nails though and will
bounce back.

On a good note, she made a huge leap forward a couple days ago while Katie
was working with her doing some therapy. While lying on her belly she
pushed her elbows down into the ground and was able to lift her chest up off
the floor for a moment. Katie was just screaming with joy. I love those
moments, they are our driving force...(well, one of many driving forces).

Had to share this...

 

Aksel's potty training isn't going so well...

April 11 and all is good

Just a quick update. Anya seems to be getting over her cold and the congestion is getting better. She is doing much better than last week. Still doing really well in her PT and OT therapies and we hope to start speech soon! We continue to do cranio and acupuncture which I think are helping enormously!!! I am so grateful for these two doc.'s, they have given us so much hope and have helped us to remain really positive for Anya's future.

 

 

April 6 Good Friday!

We're back from Telluride. We had to cut our vacation a little short and head back Wed. Our trip didn't go as planned but at least it made coming home feel really good!!!! Anya got really sick Monday morning which of course lead into her vomiting. She continued to get sick until Wed. afternoon. This was a long spell for her. I really think it was more of a cold that made her vomit instead of her usual cyclical vomiting spells. Aksel, Anders and myself have colds and I'm sure she picked up the bug from us. The car ride home seemed so long! I was so worried about Anya being dehydrated, she was not looking good. Then about 30 minutes into our trip back Aksel threw up in the car. Ugh! What a trip. We did have to stop at the ER in Breckenridge so we could re-hydrate her for the rest of the car ride home. I think we learned our lesson, not to vacation 7 hours away from home :):)

 

Anders and Pete did manage to ski a bit on Tuesday. Anders did great, he can do blue runs and Aksel did awesome on the magic carpet!!! The boys had a great time. 

 

We are all doing much better and happy to be home!

 

Happy Easter. 

3/30 We're leaving for Telluride

Anya is doing really well this week, even though she did start vomiting Monday evening. She started around 7:00 pm and let up around 8:00 am Tuesday morning. That is one of the shortest cycles she has had so we were very pleased. She seemed to recover very quickly from the lethargy. This week therapy went really well, both OT and PT were very happy with the progress she is making. Yeah Anya!!!!

 

We leave for Telluride this morning and will be back next Friday. The boys are really looking forward to the trip, Anders is excited to ski.

I'll update when we get back. Have a great week.

3/23: Keep it up!!!

I really think Anya is turning the corner.  We are finally noticing a real spark happening 'upstairs'.  She is beginning to track objects and faces much more consistently (far from perfect but much better).  For months we had tried to get her to watch a Baby Einstein video just to get her to view all the colors and associated noises. We would have to place her pretty close to a big screen TV so she would be forced to look at it.  Even though she was 'looking at it' she definitely wasn't 'watching' it. It was like she was starring off in the distance and day dreaming.  Since she started to do well looking and tracking the small flash light in the dark bathroom we decided to try having her watch a video in there on a small 5" portable DVD player.  She did awesome!!  As we slowly moved the screen around she followed it with her eyes and head movements.  Even turning from her right to her left, which has always been difficult for her.  We then set the DVD player down and she WATCHED it intently.  She was even smiling occasionally.  It was an incredible feeling for us.  You could almost see the neurons firing in her head. 

 

She will now turn towards my (dad) voice and smile when she sees me.  When she cries I can give her my hand to hold, she squeezes tight and immediately calms and seams happy.  Again, an incredible feeling.  Last night we rocked in her chair and she watched me as I sang countless repetitions of "You are my Sunshine" and I just had this overwhelming feeling, saying 'welcome home Anya, welcome home'.

 

Bottom-line, Anya is getting better.  You can just feel it.  And we wanted to thank all of you from the bottom of our hearts for your prayers.  They're working.  Anya's getting better. Keep it up...

3/19 Nothing New

Nothing new to report but that is GOOD. It's been so nice to have everyone healthy and staying out of hospitals! Just thought I would give a quick Hello. Hope everyone had a nice weekend. We played outside all weekend, it's been in the 70's here!!!!! Love Love Love this weather, Sunshine!!!!

 

 

3/12 update

Anya is doing great (knock on wood).  She has had several good days in a row now and is gaining weight again.  The 'good days' are not only good for the obvious reasons of her being happier but good because we can offer physical, visual and other therapy to help stimulate brain function and development.  When she is sick she is so lethargic and 'out of it' that there is really nothing we can do and it usually takes a day or so to recover.  These days missed are so valuable.  Fortunately she's not regressing during these sick spells but still, an infant should be making progress everyday. So developmental stagnation is almost just as bad.

 

Every slight advancement she has nearly brings tears to our eyes.  Although I know we don't do it nearly enough, we try to work on her visual sensory by going in to a dark room (bathroom w/ towel covering light under the door) and using a small flashlight we try to get her to track the light or at least just look at it a bit.  We turn it on for 30sec, then off, then move it to a new location and turn it on again for 30 seconds and see if she can locate it in her peripheral vision and turn towards it.  She is far from good at this but she sometimes does get it with a long delay of about 20 seconds.  The other day we had her holding a pen that had a small Lava-Lamp built into the end.  I think this worked really well as it gave her direct feedback from her own hand movements without surrounding distraction.  She seemed to do great with it.  She definetly had INTREST which is exactly what she needs and lacks.

 

Something seems to be 'sparking' in her brain and that is absolutely huge!! 

She's home

Anya is home and is topped off with IV fluids. She had two bags if IV fluids and was released yesterday. Her labs were actually pretty descent and didn't show much dehydration but we figured we would get her some fluids seeing she was there. We also got some antimigraine medicine to see if it helps with the Cyclical Vomiting Syndrome, some kids have really good success with the medicine. That would be wonderful if we were able to control these episodes or at least get them spaced farther apart. Then hopefully we will see big gains in her weight.

Back to the Hospital

Anya is going back to the hospital today to get some IV fluids. She started vomiting last night and continued through the night. I really hope some liquids is all she needs and she will be able to come back home. She didn't seem to fully recover (energy wise) from last weeks episode, so I think it's what she needs to get some energy back.

Here we go again!

Well, it's Thursday and she's puking. It's been 7 days since the last episode. Hopefully this will just be a 24hr thing, otherwise we will probably go to the hospital for fluids. We'll see.........

 

Anya's Doing good!

It's been a while since I have updated. That is usually a good sign that things are going well, which they are. We are starting to see some really good things with Anya. Her head control while laying on her belly has improved so much in the last month and she actually enjoys being on her tummy! Her eye control and tracking objects is getting better week by week, she's just not consistent. And best of all, she is smiling a ton! She seems to be so happy, which makes me so grateful after seeming as if she was in pain for so many months! She did throw up last Thursday all day, but hey, at least it wasn't 21 days straight!!!! She did loose a lot of weight so we are making her formula more concentrated and hopefully that will help. 

What is a Seizure?

-Following Anya's consistent abnormal EEG's we are considering starting her
on an anti-seizure med call Keppra (or levetiracetam). While doing research
on this drug I came across this presentation on Seizures and How
<http://www.epilepsy.com/web/animation.php?swf=what_is> the Brain works.
It's pretty good if you're interested and want to check it out.

-I tried feeding Anya water again yesterday and we were unsuccessful. She
didn't get anything and when she did manage to suck, she coughed it up right
away. It's amazing how inconsistent she is. We'll cautiously keep
trying...

-Anya had been doing so well sleeping lately but last night was a blast from
her past. She was all fired up and finally fell asleep around 2am. But
actually, in hindsight that's pretty good. The old Anya would have stayed
up ALL Night.

2/17 Quick update

Anya has been doing well and hasn't gotten sick since she was release from
children's on Fed 2nd. We've backed off a lot on her feeding volumes from
155cc's to 110cc. This is essentially the bare minimum recommended caloric
intake at her age/weight but she is clearly getting more food this way than
puking up a larger feed. I thing she lost about 1-1/2 lbs during those
rough 3 weeks. We haven't weighed her lately but I'm guessing she's gaining
again.

We did get her EEG results. Unfortunately it was the same as last time,
displaying epileptiform patterns. We were very surprised as she was so
relaxed and sleeping during the test we thought it would have been better.
For her last EEG she was squirming, wiggling and crying. hmmmm We meet
with our Nerologist on the 27th to discuss what this means.

oh yea...

She drank 60cc of thickened water yesterday!!!! It was over the course of a
few hours but she didn't gag or cough once! That is huge for her. It's
been a month or so since we've tried any oral feeds. She has never done so
well, not even close.

Happy Valentine's Day

Happy Valentines Day! We send hugs and kisses to all our friends and family. Thank you for all the love and support you have given us in the last couple months, we appreciate all the prayers. Today was a good day. Anya went to see our dear friend Dr. Mary Ann. She is Anya's cranio-sacralist who has helped Anya so much and given us so much hope! We love you Mary Ann! Anders started ski-school today. He goes to Eldora a local mountain (45 minute drive) and is part of the Eldorables. He learned to stop today, which I am happy about! Aksel got out on his skies today as well, thanks to dad! Tomorrow the boys have gymnastics which they both like. We have to get Anders flexible for the tricks he'll be doing on his snowboard ;) Not much news but wanted to wish everyone a Happy Valentines Day.

 

Love

Pete and Katie

2/9 Really good week

Well we are back from our vacation in Breckenridge. It was wonderful to get away and spend sometime outdoors! No doctors appointments, this is one of the first weeks we have not had one doc. appointment in months, how refreshing! Anya did excellent. She did not puke at all while in Breckenridge but did on the way home today, hmmmmm.... Is she trying to tell me something:) There really isn't any new news to report on her which is good, I think. The boys had so much fun playing in the snow. Anders went snowboarding, and Aksel got up on skies!!!! Aksel is only 21 months and on skies! So cool but kinda sad! They are growing up so fast. Anders did awesome on his skies but needs to learn how to stop, scares me!  These kids have no fear. The weather was excellent, even came home with a little tan. It was a great week but really nice to be home.

 

Anya's coming home

Anya is coming home from the hospital. We are still not sure why she is vomiting.The upper GI test today did not reveal any reflux or obstruction. They said that mito just shows differently in all kids and this is how it is presenting in Anya. So I'm not sure if we will have to go weekly for an IV to replenish her liquids or if she will eventually stop throwing up. I'm just glad my baby is coming home!!!! We have missed her. Also, papa Jack is in town visiting and the boys are so excited for the visit. Hopefully, it will be a good weekend!

 

Thank you for all the prayers!

 

 

2/1- Hurry up and wait...

We were told at 1:30 yesterday to come in to the hospital as soon as possible so they could start getting some work done on Anya. We checked in to the ED at 3:30 and were finally seen at 5:30. After several attempts to place her IV, they finally got it in about 45 minutes later. Then we waited another couple hours in the ER and finally got a room upstairs at around 9:30. Even though she was rehydrated with the IV, they wanted to keep her overnight so they could do an Upper GI first thing in the morning.

Well first thing in the morning has come and gone and at around 11:15 we're told they can't fit her in the schedule today, so it will be first thing tomorrow morning... just hang out here for while... The good news is we may get to see Anya's metabolic docs a month early when they do rounds.

So now we have the upper GI scheduled for 8:30am. It is likely they will find her Nissen (tightened esophagus surgery she had done when she was 5 days old) had slipped and they will need to redo it. This doen't really explain why she is vomiting but it will explain why she can vomit. With a Nissen you shouldn't be able to vomit at all.

They also mentioned doing a PH probe study to check for reflux. I'm not sure if they just weren't aware that she's already had that or if they wanted to repeat it. Last time it showed 'no reflux'.

All in all, she's doing well and she'll be fine.

1/31 Anya

Anya is back in the hospital. She is still throwing up. As of today, it has been 3 weeks of throwing up everyday. They will give her an IV for hydration and do some upper GI tests to see if they can see the cause of the vomiting. Please keep her in your prayers.

 

 

1/25 coming home

We are going home. Anya's holding down fluids & formula. She was 'topped-off' with IV fluids. She had elevated piravate (3.4) but everything else looked fine... We'll see what tonight & tomorrow bring

1/25 Anchor Center update

Our visit to the Anchor center went well. Anya can see at least at the level they feel necessary for visual learning. She still prefers looking at object edges rather than at the object itself as 1 or 2 month old would. She appears more responsive to periferal stimulation then to objects straight in front of her. She has a long way to go, but its possible. They gave us a bunch of visual exercises to do with her to help develop the skills that would normally occur naturally.

Yes, she's still been getting sick. I think we're on about day 16 of this. Yesterday was a really rough day, as was this morning, but this afternoon she been holding food down. I'm at Childrens Hospital right now to make sure she's not slipping too far behind in weight or hydration. I'm so thankful God blessed us with such a strong girl. Her poor brothers, they won't stand a chance against her when they all start fighting...

-dad

1/20 Quick update / news

Just two quick notes: 

 

1)  Anya's first tooth popped through (bottom, front, left)

2)  Aksel pooped in the potty (at 19 months, at-a-boy).

 

1/20 Puking Still

This is getting very depressing, she is still puking. We will not be updating her journal until she is done puking for at least a day or two, which could be a while. It's just to hard (emotionally) to keep writing the same thing.

1/19 Pretty good day..

Anya was having a good day but then around 4:30 she just got really tired
and started vomiting again and lost everything she had from her 3 o'clock
feeding. However, as I write this now she is doing MUCH better. Katie was
just getting her to giggle by blowing in her little armpits. She appeared
really wiped-out when she was sick but now her energy appears to be back
okay.

1/18 Good Day :)

Baby girl had a good day. No vomiting (well, one little one but we'll let that slide).

1/17 Thought we were in the clear

I really thought Anya was going to get through today with out vomiting. Wrong! Just in the last hour she has started vomiting. Hopefully today will be a short day and by noon she will be keeping food down. It has now been 1 week of vomiting. What is going on? I hate the uncertainly of all of this. Please God give Anya a break from this horrible disease. It is breaking my heart more and more each day. Seeing her go through this,

is so painful, to not be able to help my sick child is almost unbearable. I love you precious Anya.

Not too bad of a day afterall

Anya only vomited a couple times this morning and ended up getting and holding down the rest of her feedings okay, granted they started of diluted w/ pedialyte to ramp her back up. So she didnlt quite get her full caloric intake but she got fluids.

We spoke with a dietician today and are going to be trying her feeds a bit different to see what happens. We have been feeding 150cc's @ 150cc/hr @ 9,12,3 & 6 o'clock then a slow nighttime feed of 550cc @ 55cc/hr at 9 pm. Now wee are going to try 165cc @ 150cc/hr at 6, 9, 12, 3, 6 & 9 and give her digestive system a break at night. Every time she gets sick it has been in the morning after long continuous feed. We'll see how she does...

1/16 Puking Again

It has been since last Wednesday that Anya has been vomiting. Friday and yesterday were the only days she has managed to keep all her feedings down. Yesterday she seemed to be back to energetic Anya but, this morning I walked in to her vomiting. I now wake up every morning with a gut ache. How long will this go on. What is her body trying to tell me? I am so worried. This just isn't her normal 12- 20 hour cycle. We called her doctors yesterday to see if there is anything we can do, and they seem to think we are making this whole thing up (CVS- cyclical vomiting syndrome). A doctor asked me, " why do you feel Anya has CVS"? Hmm really doctor? Oh maybe because she fits the description to a T, maybe because we've done our research. Yes, I'm a bit frustrated! Well, I need to get back to watching Anya, I'll update more later.

 

 

1/15 so far so good

Well it's 9:03 and Anya still hasn't puked! We haven't tried feeding her but..... She did sleep really well last night, which makes us a little nervous, because that is usually sign things are going to get worse. We'll write more later, I don't want to jinx anything :)

Picture from new years eve..

You have a new Picture Mail

Anders at his friend Sashea's B-day Party! What fun!

You have a new Picture Mail

sasheeas birthday

1/14 still going

Just an update: Anya is still vomiting. She puked last at 2:00, everything, all her vitamins and pedialyte. She does seem to have a bit more energy and not as lethargic. So that is a plus. I'm hoping by bed time she can keep pedialyte down. Yes, we do worry about dehydration, but we feel as of now, there is no reason to take her in to the doctor. As parents, I think we have intuition of when things get really bad and we just don't feel it's necessary quite yet. We'll update later......

Poor girl...

She stopped vommiting yesterday at around 2 and was back up to her regular feeding schedule by bed time. She did fine through the night. At 7;30 this morning she started vommiting again ever 5-10 minutes. At least through all this we are beginning to recognize patterns. When she sleeps 'good' it is not that she is actually having a good nights sleep. It seems more that she just doenlt have the energy to wake up. It is more a state of extreame lethargy then sleep. We notice too that when she ges like this and we 'burp' (through her through g-tube) she consistantly has a lot of food in her belly that appears undigested. So she doen't seem the have the energy to digest her our food.

11/13 Puking Again

I knew it was too good to be true, Anya slept until 8:00 this morning but she started puking. That seems to be a clue, when she sleeps in..... she's getting ready for a rough day of vomiting. This is really depressing because these vomiting spells are getting much closer and longer. Her last spell was Wed. and lasted through Thursday morning. She's only gotten a couple feedings in before this next wave started. I am very concerned, I'm not sure what this means.

1/12 Good Girl

Well Anya finally stopped vomiting yesterday around 10:00 am. She had acupuncture at 9:30 and he hit a point that helps with vomiting and nausea. That did the trick! She has been able to replenish her fluids and keep food down. Today she has been in a really good mood, and her chorea has been really minimal. Yay!!! She is sound asleep (6:30) and she may just sleep through the night. How fantastic! Off to a good weekend. We don't have many plans this weekend, it's suppose to be really cold! Just some good family time and then we have Sashea's B-day party(a friend of Anders) at the Butterfly Pavilion on Sunday, should be really fun for the kids! Hope everyone has a good weekend.

 

 

I spoke to soon...

She started vomiting again around 4:45am.  She held down some food for a while. Pedialite at 15cc/hr from 11pm until 2am and a pedialite/formula mix at 55cc/hr since 2am unit 4.  At least she's getting some fluids.  That is one of the nice things about her GI-button, we can really help keep her from dehydrating...

Anders Christmas Program

Here's a clip from Anders X-mas program last night View Video. Click your browser's "Back" button to return to the journal

Christmas Photo

Anya'sgot me up late so I'm just playing with our new blogger features...

From Christmas_Card

Stopped vomiting but still awake

Anya hasn’t vomited now since around 11pm last night. She awoke from her typical lethargic state, as she gets in when she has these vomiting spells, and appeared hungry (or something) around 12am. Katie was up with her and somehow got her back to sleep by 1:30am only to awake again now at 3:45. Her chorea movements now and at 12 were pretty wild and also included a lot of tongue thrusting. On top of her root issues she may be teething as well.

A rough day...

Anya has been vommiting all day again today. She really seems to hold to her 9-day vommiting cycle. Hopefully she'll be alright this evening for Ander posponed Chrismas Program. There's no way we're missing that! His first time on stage.

A good nights sleep

Anya slept great last night until 7:15 this am. This has got to be the first time in a few weeks she's slept past 3am. She's been doing okay this morning. She spent about 10-15 minutes in her Johny-Jump-Up doing some head control exercises. Now she is sleeping in her swing. She's been coughing a bit, almost threatening to throw-up but so far so good.

Side note; We really want to thank EVERYONE for all their guest-book entries viewable by all and countless emails we've received from family members, old friends, new friends and caring strangers. For those of you who have sent emails, I apologize if we haven't responded yet. As I'm sure you can imagine, we don't get a lot of time to sit down, and those times that we do get, lately we've just wanted to 'veg-out', not think and recover. But please know we receive and greatly appreciate all the kind, thoughtful words of encouragement and your prayers. (I actually get them on my cell phone right when you send them) They bring joy to our life. We love you all. Thank you. P&K

And now she's puking..... here we go...

Another good day

Sorry I haven't posted in a while. I know some times that makes people nervous, thinking Anya may be sick. Anya has been healthy for the last couple days. Her congestion had gotten a little worse after her last vomiting episode but I think she may have had a little cold. She seems to be doing ok now, her herbs really seem to help. We can tell if we back off for a couple days that her congestion gets worse. She's been smiling a lot lately, which makes my day! She has also been looking to the left so much more, which Anya def. prefers her right side. I really think the acupuncture is helping. Today he (the acupuncturist) did some points around her throat to hopefully get her swallowing. That would be wonderful! Well, I'm off to bed.

Anya stopped throwing up

Late last night Anya finally managed to keep some food down. I was getting very worried she would become dehydrated. Today she is very hungry, she can barely make it 3 hours between feeds. We had acupuncture today and PT work. She worked hard during her PT session, good girl. Hopefully she will have a good nights sleep tonight, I think she could really use some. She gets very wiped out after vomiting all day.

Yesterday was a very rough day for me, just thinking of this aweful disorder that is ruining my baby girls life. Just seems so unfair. Anders knew I was having a bad day and seemed very sad at the end of the day. When I tucked him in last night, I asked what was on his mind, he said... the world and our family. I knew he was thinking about Anya. This morning he said, do you know why I was sad last night? He said, I want Anya and you to be happy and healthy and for me to be sick instead...................... It breaks my heart. I love my children so much and appreciate everything God has given me. I am a lucky mom to have three wonderful kids.

Happy New Year

Happy New Year! Sorry we have not updated Anya's site in a while, we've been busy with the Holidays. Of Course, the Holidays were eventful! Pete, Aksel and I were very sick for the whole week of Christmas. We had strep throat. Oh my goodness, Pete and I were laying on the floor for 3 days just getting by. We had the chills, achy joints, fever, headaches, sore throat, UGH it was not fun. It really makes you appreciate being healthy, wow! All five of us are on antibiotics. Anya managed to remain healthy, which is very unusual. New Years was spent watching the Packer game, and they won! Anya woke up New Years day vomiting. This cyclical vomiting syndrome is nasty, I'm so worried she will get dehydrated. She has still been vomiting today as well, which this is the longest she has gone on. Usually, she is done with in 11 - 12 hours we're going on 2 days, I'm very concerned.