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.