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.

Off to the Doctor

Good Morning, we're off to the doctor, this time it's for Aksel. I think he may have an ear infection. He was up all night (along with Anya but that's not unusual) with a very high fever and crying. That is not typical of Aksel, he's our good sleeper :) I want to have him checked before everyone leaves for X-Mas. While I'm there I will have Anya checked too, she's bound to get whatever he has. He's had a really bad diaper rash as well, diapers creams do not work! All three have been very sick this week with colds. We could have three cranky kids for X-Mas, oh what a treat :) At least the power of gift opening will get Anders in a good mood. Hope everyone has a healthy and Merry Christmas. In the hustle and bustle of Christmas please remember what a blessing it is to be with loved ones.

Happy Holidays!

Pete and Anya made it home

Pete and Anya made it home at 6:45 this morning. They had a rough night. Anya was throwing up all night and her chorea was really bad, therefor she did not sleep. Which means Pete has not slept yet. Anya stopped vomiting this a.m. and is taking i. Pete said the roads were still awful the whole way home. EVERYTHING is closed today. Pete is now just doing a little shoveling then I will make him go to bed :)

Of course last night Aksel was up most of the night! So I just went to bed at 5:00 and got 2 hours of sleep. I guess when it rains it pours!!! Although, I can't complain, my whole family is with me now and that is all that matters. So we need to get a little rest and then it's play time, I can't wait! The snow is beautiful.



Katie

Huge Snow Storm

Well, we will def. have a white X-Mas! So far we have 10-12 inches and should get 24 inches by tomorrow am. I can not keep up with the shoveling!! Bad news is Pete took Anya in to Denver for her acupuncture appointment and now can not get home. I'm worried about him driving so I think they may stay at a hotel. This is the last thing I need to worry about! I know Pete will take care of my baby girl and make a smart decision whether to drive or not. Gosh, I'm such a worry wart! Well that is it for now.

UPDATE - 7:30Pete and Anya are staying at a Hotel in Denver until the storm dies down, sometime tomorrow afternoon. They left at 9:30 am this morning and finally gave up at 4:30 this afternoon. That's how bad the weather is. I guess the highway is filled with vehicles that have either been abandoned or people still waiting in them. I guess police officers are going to try to have them leave their vehicles and will be taken to the closest shelter (Flatirons Mall is open for them) so things could be worse for Pete and Anya but..... Pete said Anya has been vomiting most of the day (she has a cold) so I'm sure he won't get much sleep tonight. I feel so bad I can't help out in watching her, it's a full time job and Pete must be exhausted. Well, I just got the boys to sleep and most likely will go to bed soon, in-case Pete gets home tomorrow and hasn't slept, I will need to take all three for the day. Good Night.

Katie

No news is good news...

We had our appointment today with the geneticist and fortunately didn't learn much. I would say no news is good news when it comes to those appointments. They didn't find anything suspicious with her last panel of blood work. This is a far cry meaning we are in the clear however. Mito is difficult to diagnose, especially through blood work or spinal fluid labs. The best indicator comes from a muscle biopsy which we understand to be quiet an evasive surgery and take several months to schedule and even more for results, and there are only a handful of places in the country that can facilitate a fresh biopsy. Because of those reasons, muscle biopsies are usually the last test you'd perform. Even muscle biopsies are not 100% conclusive. So again, no news is good news (or at least as good as we could hope for). It means there's a chance it's not Mito, a chance it's something else, a chance it's not progressive, a chance it's curable (so I'm a wishful thinking father).

Next step, more blood work drawn today; checking Copper, Ceruloplasmin, Carbohydrate Def Transferrin, Creavtine Guanidoacetate, S-Sulfucysteine, Carnitine. Don't worry, you won't be tested on these.. To other Mito parents asking 'why didn't they check Carnitine earlier'. We're not sure. To everybody asking 'why didn't they just check all these earlier so you don't have to wait another several weeks'. There again, not sure.

Enough of that stuff. Now to the good news. Anya has been doing awesome the past two days! I'll write more in a bit... got to run.

-dad

Little tiger still hasn't slept...

It's now 5pm and Anya still hasn't slept a wink.. But she also hasn't vomited , nor is she lethargic.. Speaking of vomit.

CVS+ It looks like Anya may have Cyclic Vomiting Syndrom "+". This 'name' was brought up about a month ago by Elena's mom (thanks Mindy). We did a quick google on it but it didn't seem to fit so we dismissed it. Katie was surfing last night and ran across it again, this time what she found seem to match exactly (not sure what happened the first time...). There seems to be a pretty strong tie between this and Mito. We're researching more now. It would be so swell if just one of the many GI docs Anya has seen would have come up with this. Then it might just justify her $300,000+ (and climbing)medical bill...

We'll try to post more on CVS+ as we find it. The "+" part is the hypotonic, developmental delay, neurological issue part...

Another Sleepless Night.

It's just past 4:30am and Anya has had a rough night and is still going... She quit vomiting around 11:30pm and has been kicking, squirming, throwing punches, and scream/crying ever sense. She's still 'dancing' now. I'm just making coffee for Katie's morning shift. How much suffering can this poor girl take.

Anya's sick again

Anya had a good night last night and seemed fine this morning but around 10am she started vomiting and hasn't quit all day. She very lethargic but doesn't seem to be in any pain. She either got what Anders just had, is affected by the herb Anxiety-Free we a started giving her or is just trying to meet her weekly quota of being sick once a week. I doubt its the herbs but we'll take a break from giving them if she's not better tomorrow.

A good night but a sad day...

Anya is doing well. She slept good last night and actually just took a nice 20 minute cap nap. It's is a painfully sad day today though as we are reminded of the realities of what we may face. Anya's condition has opened our eyes to an entire community of parents just like us; taken into a world we never thought possible. Today, one of those families morns, as does the rest of this community, for the lossof their baby girl, Morgan. Morgan was 2 1/2, has an eerily similar medical history to Anya and was diagnosed with Mito just this past May. She her story here.

Good day so far.

Nothing really new to report. Anya has her 2nd acupuncture treatment yesterday afternoon and slept great last night from 8-6am, soundly. As we've mentioned earlier her mucous had been dramatically improved and for the first time this morning she woke up w/ absolutely no build-up around her mouth this morning or drool on her bed-sheet (now me on the other hand, that's different story..)

We are going to continue with her Manjistha and Colostrum and we introduced Anxiety-Free (click for details) this morning. I'm a little nervous introducing something right now becauseAnders (older brother) was up sick last night. It was his first time ever vomiting before; poor little guy. Its scared him. He claims to have had a sore throat and is sick but I have a feeling he was getting into the sugar cookie dough last night when we were making Christmas cookies. He seams fine this morning but if he is sick I'm afraid Anya might get what he had...

Madison move on hold

We've decided to hold off a while (1,2-6 months?) on our move to Madison. It was a very difficult decision, yet at the same time, clear. We promised Anya we will do anything and everything to help her. We really wanted to give her hyperbaric oxygen treatment, having family closer by would have been great and most of all getting new/more doctors working on her. However, we have seen HUGE improvements in Anya by following Dr Douillard's (Ayurvedic doc) suggestions and we found what seems to be a well suited match for Anya with an Acupuncturist, Dr. Lixin Zhang in Denver. So we need to exhaust all our possible resources here before moving to a place where those therapies, especially to that caliber, would not be as accessible. Staying here will also give us the opportunity to take Anya to The Anchor Center (Center for blind children) so we can get a better assessment on what her vision capabilities are and how we can help her.

Regarding the Ayurvedic treatment, Anya's mucus issues are essentially gone! We used to have to suction her with a little electric suction pump several times per hour. Since we started Dr. Dioullard regimen we have maybe turn on the pump 3 or 4 times in the last week. We're trying not to be over optimistic but I think this is the first time we've been able to help Anya in any way (and it feels good). Of all the other drugs she's gotten for any sympton (prevacid, zantac, chloral, benadryl, etc) this is the first time we've actually had any success. Thanks Doc! We're excited to meet with him again next Friday to tackle her other issues.

The Acupucturist works a lot with stroke victims and other brain injuries. Hehas experience with peds. and infants and He seems very intellent and knowledgable, and thinks he can really help our baby girl...

Less Mucus

I can't believe it, Anya is still sleeping! It is 9:00 am and she has been sleeping since 8:30 last night! This is a first! She needs sleep so bad. We didn't have to use any medicine to induce sleep, she did it all on her own. Not sure why. She did have an acupuncture appointment yesterday, hmmm. Her mucus has gotten so much better. Def. not as much as she used to have. The herbs she is taking has really helped. That is great, we used to suction her every 30 minutes, not any more. I think that might be helping her to sleep as well. Today we have a pulmonary appointment at Children's, so we'll see what they have to say about her trachea.

On a side note, the apartment we thought we were going to move into at the end of the month (in Madison WI) turned out to be only a 2 bedroom with a loft. I don't think our family of 5 will fit! So we are back to looking for alternatives. I think we will have to take a bit more time to look, so we probably won't be moving as soon as we thought. Which is ok for right now, I feel like we are at lest moving forward with some things here in Denver.

Have a good day!

Little wiggle worm...

Hi All. Anya's been doing fine the past few days. Her chorea movements has been in high gear lately. She slept pretty well from 9 last night until about 4 this morning but woke up a'wigglin. Getting up at 4 has been the norm for the past week I'd say. Why didn't any of my kids get my sleeping-in gene?

Her overall health has been good. We met with Dr. Dioullard, an Ayurvedic doc on Friday who offered a program to help with her excessive mucus. He seemed very knowledgeable. I wish I could tell you what he all said but it was a bit beyond my level of comprehension. I understood when he said "Hello, my name is John" but everything after that was over my head. Katie could probably tell you; she's good at that stuff. I will say that what he told us about what is going on in her body and how and why it is responding the way it is, made sense, but I don't get why or how the herbs he prescribed will help that. But then.. it's not my job to know. It's his. Just like I don't get how or why phenobarbital or topamax or prevacid or the countless other drugs she's had works (or should I say, didn't work).

We started the first prescribed herb, Manjitsha and Colostrum the minute we got home Friday, and I will say (although I know it is too early to tell for sure as she does fluctuate) her mucus production, and therefore her 'gargling' and the amount we're suctioning her, has seemed greatly reduced. Fingers crossed.

And She's Sleeping

Well after a very long day, Anya is finally asleep in her crib. She's been up since yesterday at noon. I don't know how she does it! Her chorea just gets so out of control she can't settle down leading into a cycle. I really didn't think she was going to fall asleep any time soon, she was going strong at 7:00 pm. I tried rocking her but that got her even more awake so I put her in her bed with a pacifier wiggling like mad. Then boom, 2 minutes later and she was out! I don't get it, it's like the switch was turned off. She went from out of control to sound a sleep. So needless to say, I am off to bed before she wakes up! Dang it, now if Anders would just stay in his bed. Off to put another kido to bed, AGAIN!

Long night...

Well, Anya had been vomiting non-stop all day up until around midnight. We put her on straight pedialite to keep her hydrated at around 2pm at a slow feed rate. She was also very lethargic but, wouldn't you know, she's not any more. Her chorea is really bad tonight. She's all fired up! Isn't in pain, just moving a lot and sucking like crazy on my finger. Won't take a pacifier. I tried a little thickened water and she really liked it but I'm afraid to do to much as she typically starts coughing it all up after a few cc's especially when her chorea is bad. We try weighted blankets to help stabilize her movements a bit but when she is this bad she can kick and throw them off quickly. She also squirms her why out of a swaddle. I'll be very surprised if she sleeps tonight. Silly kid.

Poor baby's sick again....

Well, she had a good run of health for a couple weeks. She always seems to be well when we have family here to help, hmmm. Nana and Papa G left around 12 and she has been lethargic and vomiting since then. We're going to start feeding 50/50 formula/pedialite for the rest of the day and see if that calms her belly.

Tuesday

Sorry I haven't posted in a while but really not much to report on. Anya has been doing pretty well these last couple of days. This morning she did throw up a little bit but Pete thinks it's because she drank too much water so who knows. Hopefully that will be it. She took a 2 hour nap this a.m. which is fantastic. She's been looking in the mirror for the last 20 minutes smiling at herself. She thinks she's pretty cute! We did call her ped. yesterday to inform them that her medicine (Topamax) she's on is not helping with her movements. So they may up her dosage or try a new drug. I really wish there was something "natural" that we could try for these movements, I hate the drugs! This Friday we have an appointment with an Ayurvedic doctor, that should be interesting maybe he can help with all the mucus. Fun stuff!

Have a good day.

December already!

Oh my goodness, I can't believe it's December already, these months have flown by! This will be a busy month for us. Anya has some big doc.'s appointments coming up and anxious to see if we learn anything new. Also, Anders 4th b-day, which we have already celebrated 3 times so far!!! Anya has been doing ok these last couple of days. Yesterday, she was very content, smiling and hardly any movement. Today is going pretty well also. She's upstairs taking a nap!