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.