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.