Anya had a good 4th of July!

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Weight Gain.... Finally!

Anya weighs 25 lbs. 11 oz. We actually need to back off in total calorie intake, she's getting pudgy. I love it!!!!!!

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6/2 ...

Good Morning

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5/27 Mayo summary

Okay, the Mayo trip...  Overall I would say the trip was worth it.  Although we are still no closer to an underlying diagnosis, we did get some answers. 

We got affirmation that the genetic and other testing she's had done was thorough and appropriate.  They did have a couple more possibilities but said that she really does not fit into any one known disease.  They admittedly said that although they know a lot, they don't know everything.  They suggest that we just check-in perhaps once a year, as new testing is constantly under development.
 
We did discover via broncoscopy, that Anya has 'silent aspiration'.  In other words, she will occasionally aspirate with out an appropriate response like coughing.  It's not a good thing to have but it is definitely good to know about.  We were surprised at this as we always felt she's had such a good strong, productive cough and she's rarely had pneumonia. I read somewhere that the lungs can handle aspirating about 10% of your oral secretions (saliva) but with persistent aspiration overtime the lungs will get damaged and weaker.  Knowing that, it is unlikely that we'll be attempting any oral feeding anytime soon.  Saliva is relatively sterile compared to the risk of a bacterial pneumonia you can get from aspirating food.  So now we've started Anya on Glycopyrolate which is supposed to greatly reduce secretions.  Unfortunately the drug does not differentiate between oral secretions and other natural body secretions. Which means is also causes urinary retention, constipation and reduces the ability to sweat.  We have started on the lowest dose and have slowly began increasing until we notice a change.  If the dose isn't high enough, she'll still have a lot of secretions.  If its too high her secretions could just become thicker and even harder to swallow.  If the drugs don't work or actually even if they do, there are other options we have.  Botox the salvatory glands every 4 months under anesthetic (no thanks) or surgically remove and/or tie-off glands in her mouth.  Both are actually quite common we're told.     Anya has a swallow study scheduled for June 3rd and following that we may start trying VitalStim therapy which theoretically strengths the throat muscles for a more capable swallow.  We looked into the therapy over two years ago but it was still rather new and untested on pediatrics.  It sounds like it is mostly used on stroke victims and adult dysphasia.  The downside to VitalStim is that is time consuming, expensive and insurance doesn't cover it...  But we've seen a lot of forum comments of kids who've had some success with it.

One of the Doc's at Mayo also helped us realize that the issues we are seeing now (retching, coughing, lethargy) is not the same issue we had been dealing with the past few years.  (By the way, Anya is sick now. She's been sick nearly every damn day since Easter).  The vomit issues we most likely simply the result of the Hiatal Hernia (that was noted by the radiologist when she was 5 months old and we weren't told about.. yea I'm still a bit pissed about that).  Her symptoms we witnessing today are more common following a Nissen.  Retching is common and supposedly "typically" gets better with time.  Anya's severe hypotonia complicates things a bit more.  Nissens are meant to hold stomach content down.  They inherently make swallowing a bit more difficult.  So while Anya had her old torn (broken) nissen perhaps she could swallow easier then and was at less risk of aspirating on built up secretions.  So essential we solved one problem but created a new one....  Two steps forward, one back.  At least she's getting calories.  Oh yea!!! She is about 23lbs now!!!! That is nearly a 5 lbs gain since surgery.

Our next step is to get Anya in for a repeat MRI to see if her Cerebellum continue to atrophy, hopefully a spinal tap to repeat Neurotransmitter testing and perhaps get her teeth cleaned all under the same anesthetic.

5/23

Baby-doll had a very happy birthday yesterday. I'll update on our
Mayo trip later this weekend.

Long day of appointments...

5/20 Busy week

Hi all.  Everything is going fine. No medical miracles as of yet but it's only Wednesday... Here the weeks schedule:\

Yesterday:  8:30  2-hours w/ new Primary Pediatrician 

                 12:30 Neurologist

Today:  8:00  Trachea X-rays

            8:15  Chest X-rays

           9:45   Pulminology

           12:45  Allergist/Immunology

           2:15  Geneticist, family history

           2:45  Geneticist/Neurologist

           4:00  Blood draws

Thursday: 7:45   Endocrinology

               9:00  GI

               1:30  Otorhinolaryngology (aka ENT, ear nose & throat, I think)

Friday:  8:45  Primary Pediatrician again to go over all the findings and to get the prescription for that magic little pill that will fix everything.

 

Lots of appointments in a week but it's definitely a great way to go. It like cramming a year's (or so) worth of test into a few days.  We are obviously hopefull but so far it reallly is not much more than what we've already done.  Just a repeat and going faster.  But it's a bunch of new eyes on her, so who knows...

 

Anya slept great last night; 11-hours straight!!!!  Katie and I actually got an insane 9-hours of sleep!!! Wow does that feel good. I can actually think a complete thought today..

 

5/19 Mayo Clinic this week

Anya is going to be seen at Mayo Clinic this week.  We got here last night and meet her new doc at 8:45 this a.m. (Tuesday morning).  At that point we'll get a tentative schedule for the remainder of the week.  Should be interesting... maybe.   Anya was apparently so excited for this appointment that she couldn't even sleep.  She slept from about 2:30 - 3:00. crazy kid.

Exciting News!!!!!!!!!!

Anya has exciting news to share. Follow the link for more details!

http://www.wausaudailyherald.com/apps/pbcs.dll/article?AID=/200905111156/WDH0101/90511083

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5/7 Eye exam

I may not see good but I look fabulous....

The good news is that her cataracts haven't grown; still tiny and not
affecting her vision (is it affecting or effecting?). Her vision
hasn't gotten any better though. It is still around 20/80.
Structurally her eyes are perfect but apparently this is somewhat
normal with global developmental delay.

5/5 Best day in a long time....

Finally - A Happy Day!!!!!!!!!!!!!!!!

Anya is having a good day. It's been a couple weeks since we have seen
Anya's Happy Hugs!

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Easter Picture

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4/25 Aksel B-day party..

Anya had a much much better day today. It was a long night and early
morning last night. Baby doll was very aggitated and uncomfortable. I
took her into the walk in clinic to get her ears looked at (they never
looked in the ER yesterday) and it turns out she has a pretty bad
inner-ear infection. She on Amoxicilan (sp) now so ought to be better
soon. Aksel had his 4th birthday party today and the kids had a
blast. Anya got to go down the slide...

Coming home

No pneumonia. Clear chest xray and labs came back pretty much normal with the exception of slightly elevated BUN.  Increase BUN can be a sign of dehydrated. Ironically however Anya's BUN, even when she is known to be dehydrated from all her vomiting, is typically measures low when we've come to the ER in the past.  Today she doesn't physically appear to be too dehydrated, she has lost minimal amount of fluids because she can not vomit, she's been getting fluids/food all day and she's had a few wet diapers.  I think Anya needs to study harder for these tests, she's doing something wrong. This kid's so goofy.

Her heart rate is still high (160's - 190's), which I don't like...

3/24 Back in the ER...

Anya and I are hangin in the ER tonight. I decided to bring her in to check for pneumonia.  She was showing some mild signs of breathing troubles and had a heart rate ranging from 145 - 165 (I think norm for a 3 year old is about 90-110bpm), although no fever.   Chest x-ray just came back normal. So either no pneumonia or it is too early to tell.  Drawing blood right now for labs....  

Anya's lethargy

4/23

Unfortunately things haven't been going so well for Anya these past few weeks.  She's probably only had 4 or 5 good days in the past 3 weeks.  Following her surgery the vomiting episodes seemed to be reduced to lasting only an hour or two where she would just bring up mucus, be lethargic for a bit but then quickly snap out of it.  Lately however she's been sick most of the days, most of the day and night.  Her sleep has reverted back to terrible, up by around 1a.m. each morning and staying wide awake until around 7am.  Although at these times she not sick, in fact just the opposite, she is happy and just wants attention.  When she does "sleep" through the night it is actually more that she just happens to be lethargic and retching up mucus during the night.  Last year at this time was also a really bad period for her. We suspect her 'normal' issues may just be exasperated now by seasonal allergies.  We are seeing an allergist May 26th.  Last time we tried to see an allergist they blamed her vomiting thick mucus on the likely Mitochondrial disease. Now that Mito is off the table we'll see what they can come up with.

One interesting thing (to us at least) is that she is no longer biting her hands. I think she may have done it once since surgery but that seemed to be more by accident. Heck we all accidentally bite our hand once in a while, right?   So no more hand biting, but we're back to no sleeping and lots of mucus.  I probably goes without saying but we are both getting very tired and frustrated by this.  Watching your child suffer day after day after wasted day... I know things could be a whole lot worse and our hearts are constantly out to those parents whose kids are seizing non-stop and/or suffering chronic pain.  It is difficult to see so much hope in Anya's eyes but to not have yet broken through.

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Anya does NOT have Mito!!!!!!

It's official... We met with the Geneticist today, got the muscle
biopsy results and Anya does NOT have a Mitochondrial disease!!!!!!
In fact, Anya's mitochondria are "Rock Solid". There are zero signs of
any dysfunction or anomaly of any sort. So then what the hell is
wrong w/ our little pumpkin??? Who knows.. and for tonight, who
cares... All we know is that we are so relieved in confirming our
beliefs that Anya does not have this life threatening, degenerative
disease. Tomorrow we will continue to try to figure her out. Tonight
we will count our blessings.

4/7 Tuesdays with Anne...

Anya was in a great mood for this morning's PT session w/ her
therapist, Anne. Every Tuesday, when she's not sick, Anya gets an
hour of in-home physical therapy. Anne just goes over techniques we
need to work on for Anya's development. Lately her hamstrings have
gotten very tight. It's most likely due to a recent growth spurt as
bone grows faster than muscle. We try to do a couple sessions each
day of stretching and we also have her sleeping with braces on her
legs to hold them straight and stretch overnight.

Well, today is the Big Day.. We meet with the Genetisist to get her
Muscle Biopsy results. This could offer a diagnosis. Obviously we'll
post when we find out..

3/30 Great day!!

Anya finally had a good day! No retching at all, yea!... We need this.

Here is Anya listening to Nana G on the phone...

Hmmmm

Sorry we haven't updated lately, we just haven't been sure what to write! This last week hasn't been the best for Anya but we can't pinpoint what is going on, shocker. She is puking up a lot of mucus and retching a lot, more so than the last couple of weeks. We had to change her formula last week due to some problems with "dumping" (food traveling to fast through the intestines) that was leaving her feeling hyperglycemic. So the puking of mucus could be from a change in formula, her Nissan, or a cold (which causes more post nasal drip). So now we are playing around with different formulas and feed rates hoping to fix the problem. She gets very wiped out when she starts puking mucus, if she didn't have the Nissan she would def. be in a episode vomiting food. We have a GI appointment on Tuesday to discuss what we can do to help her.

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3/18 Lounging w/ Mommy

I'm doing really well everyone...

Good morning

3/5 2 steps forward, 1 step back...

Don't get me wrong. We'll never give up on this little punkin. We knew going into the surgery that this may not be our answer. We tried not to get our hopes up, but it happened anyway. Just like it always does. Just like it probably always will when we come across another possible resolution. Today was just huge disappointment. We were already begining to dream of what we'll do with those 'extra days' we'll now have each week that we used to spend sitting at her side. Thinking how we can't wait to start gaining muscle mass and begin some aggressive physical therapy.

She is still sleeping/lethargic now and seems to have stopped vomiting and retching. The retching finally stopped around 6 but by that point she was bringing up trace amounts of blood. Not enough to be threatening but enough to know she is putting substantial strain on her new nissen wrap. This was our concern here, is that if she continued to vomit follow the nissen re-do, that she will just tear through this one as well and it will be back to square one. For now the nissen is doing it's job; when she is vomiting, she is only bringing up mucous and saliva from her esophagus. Her stomach content has all stayed down. Although we'll continue the need to manually empty her stomach content and stop feeding her at the on set of an episode (to reduce upward pressure on the nissen), at least she is not bringing up damaging stomach acid through her esophagus. I also feel more comfortable now doing a slow drip feed sooner since it doesn't seem to be coming up and contributing to the retching. If that's the case (time will tell), she'll be able to continue caloric intake and the potential to gain some weight.

Well SH##!!!!!

There goes all our hope. No more than 20 minutes after that last posting, Anya started another episode.  Exactly what we were afraid of................        
We are out of options.

3/5 Doing GREAT!!!!

Hi All.  I just wanted to let everyone know that Anya is doing AWESOME!!  She has been very very happy, smiling all the time.  She doesn't seem to be showing any signs of pain from the surgery and the incision is healing nicely.  Although we are still very cautious with her, she's been able to spend some time in her stander and enjoys it as much as ever; no discomfort.  She is tolerating her full feeds effortlessly and has not had any retching since that first night. 

We often get asked if this means she'll be able to eat by mouth now, but unfortunately it's not that simple.  Her dysphagia (inability or difficulty coordinating a swallow reflex) is more likely a neurological dysfunction and not totally a structural or physiological issue.  Although at least now she has a fighting chance... Prior to repairing the hernia there was probably too much discomfort or blockage of the esophagus to swallow, even if she knew how to.  Time will tell.  Our goal is for her be eating cake at her 4th birthday party.

Discharged!! Yea!

3/3 Hoping to go home today...

3/2 One step closer..

 

Anya is now taking bolus feeds and she just put her epidural catheter taken out. I'm thinking it if somebody pulled a 9-inch long tube out of my spine, I wouldn't be smiling. Anya sometime has a sick sense of humor.. She was smiling and giving herself her "Happy Hugs" the whole time, even while they pulled the tape off. Hey, whatever makes her happy.

3/2 Upper GI looked great!!!

3/1 Another good day

Hi All.  Anya had a great day today.  She had her IV's removed last night and started on formula this afternoon.  She'[s just taking a slow drip-feed, increasing by 10cc/hr every 4hours.  More to write but Anya's getting tired, time to get her to bed... 

2/28 Happy girl

Anya's doing great today. We're getting smiles!!! She is finally starting to take pedialyte (very slowly).

2/27 Slept well considering...

Anya drifted in and out of sleep through the night which to me is impressive that she can sleep at all with all the "stuff" hanging off her.  Overall she's doing wonderfully.  Her O2 saturation have maintained mid to upper 90's throughout the night (it helps everyone sleep without alarms going off every time it dips below 88%). She's been on room-air (doesn't require supplemental oxygen) since right after surgery.  Not that we expected her to need air, we are just thankful and I'm always so proud of what a good "breather" she is.  It's cute, in times past, when her O2 levels are lower you can just talk to her encouragingly and quickly watch the levels increase.

Right now she appears to be sleeping soundly (O2 pinned at 100%, yea!) and she hasn't had any retching in several hours.  She's doing great.

2/26 All done and doing fine...

Anya surgery went as well as we could hope for.  She is all settled in to her new room where we will be for the next 5-7 days while she begins to heal.  The whole surgical team was awesome again.  They re-did her Nissen Fondoplication and repaired her hiatus which was badly torn by the Paraesophogeal Hernia.  Her vagus nerves did not appear to be damaged so they opted not to do the pyloriplasty which is good in our minds to keep as much of her anatomy just as Ma Nature intended.  She drifting in and out of sleep now with 2 IV's, a cathiter, an epidural (for pain management), and then the usual for monitoring vitals.   We won't start her feeds for a day or two to let her stomach heal for a bit.  Unfortunately she has been retching a bit and requiring suction but it seems to be only saliva and/or perhaps post nasal drip. So technically not vomiting, Yea!  All-in-all, it was a good day.  Thank you everyone for your prayers and well wishes.

Did great!

Surgeon just came out. Everything went well. Waiting to wake up.... Haven't seen her yet.

2hours...and counting..

We just got an update that everything is going as planned.     It was an emotional drive in this morning.  Seeing those big baby-blues in my rear view mirror made it literally painful to aim the car toward the hospital.  It was an awkward internal battle where instincts were tell me turn the car around and drive the other way.  It was not a "gut feeling" that something was going to go wrong. It was an instinctual feeling that you must protect your child from danger.  From being cut in to.  From rolling the dice and gambling on statistics.   As much as I know she needs this, and I know she will be fine and strong and brave and that this is the best thing for her,  there is still that risk involved. And I do not like gambling those blue eyes.    For as long as possible I had (dad writing) put off the imagery of Anya on the OR table; as it was just too much.  I have no problem with the "gore" of it all, but when it is my cute, adorable, Innocent, loving, happy, little princess, that's a totally different story...  It didn't really hit me until I was simply trying to pick out her cloths this morning... when you think about what to wear, what's going on today.. what does she need to be prepared for...  For Anya on any other day the decision is based on whether or not she is looking sick, if she has PT that day, if we are going anywhere, if it's cold out.  This morning's decision inadvertently brought on all those other IF's or rather the "What if's".  So I took my little 30 second breakdown, shook it off and grabbed something comfortable for her to wear.  I stopped thinking about it (pretty much) and decided to lay back and trust God on this one.

2/26 just went in...

2/25 Night before surgery

Anya's surgery is scheduled from  9:10 through 12:10 tomorrow morning. We'll need to be there by 7:30 to prep and meet w/ the surgeon and anesthesiologist.  Anya finally stopped vomiting around 2 this morning and was able to hold down fluids through most of the day with a couple hours of relapse this afternoon but finally bouncing back out of it and taking in food.   Nana and Papa G. got here around 8:00 this evening to take care of the boys while were at the hospital.  They had Anya cracking up before she went to bed.  She sure loves her tickles and kisses.

So she is sleeping now and is only allowed to eat until 3:00am so she has an empty stomach for surgery.  I'm sure she'll be as strong as she always is but I still hate having her go through this.  Breaks my heart (but fixes her belly, hopefully).  Asking for a few extra prayers on this one... Thank you all!!!       We'll update post-op.

2/24 Last episode??

Well, Anya started into another vomiting episode this evening around 8:00pm.  Hopefully this will be the last one.  We're going into Thursday's surgery hoping correcting the hiatal hernia and redoing the nissen will put an end to these episodes, yet understanding that it may not be our solution.  The only good coming out of this episode is that it affirms our decision to go ahead with the surgery.  After last week we restarted her Zantac and Prevacid and kept her laying only on her left-side (good for reflux, bad for scoliosis).  Earlier today, after making it a full eight days without getting sick we thought (again) that maybe she'd be fine w/o the operation and foolishly started to have second thoughts.....  So this at least puts those thoughts to rest..   It's been about 3 1/2 hours since she started and Anya continues to get sick every 5-10 minutes.  It goes without saying but I do sure hope this is the last episode...  If it's not, it will be painful for all of us.

2/19 update

We took the bandages off Anya's thigh this evening and the incision is healing very nicely.  She tolerated the whole thing like an absolute champ.  She didn't show any signs of pain or discomfort.  I will say however the incision is much larger than I thought it would be. I was expecting  (because it's what what we were told) it to be about a half-inch. Instead it is closer to  2 inches.  Oh well, no one should be looking at my daughter's legs anyway (dad writing this).

Prior to meeting with the surgeon the decision to redo Anya's nissen felts a bit like the decision to sign the "Stimulus Package", we don't feel comfortable doing it, it may not help at all, it may actually hurt the situation but thing have gotten so bad that we have no real choice but to just do something.  However, after our meeting we both feel very comfortable that this is the right decision.  We reviewed her upper GI results and could clearly see that over 25% OF her stomach had migrated up above the diaphragm. It is a severe paraesophogeal hiatal hernia. It is difficult to say if this is the cause of the vomiting or rather the result of the vomiting. In either case it's not good and must be corrected.  Hiatal hernias are common following a nissen, especially one done at such an early age (5-days old).  Anya has had upper GI's in the past but we were always told everything was normal. Out of couriosity I reviewed her Upper GI report that she had done after the first month of this vomiting starting when she was 5 months old.  It reads:
"...Barium extends into the rap portion of the fundus which appears to extend above the diaphragmatic hiatus..."  Now I'm sure I've read through this report before because I've read over all her records time and time again looking for answers.  The difference this time is that I now better know my (her) anatomy, and know now that what that says is that she's had this Hiatal Herina for TWO years..  (I'm just going to bite my tongue here......)
 
Here's my theory...  I thing that along with her Paraesophogeal Herina she could also have a "Sliding hiatal hernia" which is just what it sounds like, a hernia that periodically slides up and down.  Perhaps the hernia noted in her earlier Upper GI was not large enough to be concerning because it may not have been done while she was vomiting or rather while it was at it's maximum herniation.  I have to review out journal but I don't think we had started journaling yet.Perhaps the stomach gets forced up through the diaphragm as she gains a little weight or start taking in the recommended calories, causing it to be cyclic.  As she stops eating and looses water and mass, the stomach drops back into place in the abdomen. Just a theory.  Anyway it needs to be fixed, and unlike the Stimulus package, I now think this  could actually be a viable solution!

So now what... Anya goes back in for surgery on Thursday, Feb 27 which fortunately gives me a good excuse to get out of my vasectomy (phew, that was close). Unfortunately because our surgeon is a dinosaur (his words, not mine) this surgery will not be done laproscopically like the first time.  The plus side is that this guy has a much lower failure rate (1%) versus the national average of 15% (failures are when the nissen comes undone and a hernia occurs like in Anya's case. With his technique he adds many more internal stitching for reinforcement.  Whatever works... We are very comfortable with this surgeon and needed to just bury of concerns of the huge 6" scar across her belly. I remember on her first surgery when I  was concerned with those little laproscopic scars. In hindsight, no big deal.  I'm sure it'll be the same for this one.  We are just so excited to have possibly found the answer to her vomiting so she can grow and have an opportunity to thrive.        She's so dang cute sitting here next to me. I'll try to get some new pictures out soon..

2/16 Sick again..

2/15 doing well

Anya is doing good today. We ended up taking her to the ER yesterday afternoon for rehydration. Although she had pretty much stopped vomiting late yesterday morning, we just felt that if she slipped back into the episode she would be so far behind with fluids that it could get dangerous. Especially since she just got done with her last episode on tuesday. Doing okay now. Not pefect, lots of hand biting.

2/13 Sick again

Anya is sick again. Started at 8 this a.m.  This is so hard now knowing (or at least we think we know) what might be the root cause (the Hiatal Heria) of her vomiting and net being able to do anything about it.  This morning we were able to bump-up her appointment to meet with the surgeon to Tuesday (feb 17th) to discuss our options.  It is still not soon enough in our eyes...

2/10 Home and sleeping

Anya is sleeping very soundly right now and has not vomited since she went to bed about two hours ago.  We were able to confirm the suspicions of a Hiatal Hernia via an Upper GI this afternoon.  This is sort of good news to us in the fact that we FINALLY found SOMETHING.  Tomorrow we will be contacting the surgeon and her two different GI docs for there opinions on how to handle this.  As we understand it, in order to repair the hernia we will need to re-do the nissen.  The issue we face is that if her vomiting is not caused by this hernia but rather caused by a neuroligical misfunction and her episodes continue after the surgery, each time she wretches as her body tries to vomit could potentially be very painful for her.  THere are a few other risks but I am actually too tire to think or write anymore tonight...             Bottomline, Anya is home and sleeping and it was overall a successful surgery.  Goodnight.

2/10 Good shape for the shape she's in...

Anya is still doing okay this morning although she's still puking.  It's safe to say she's 'recovered' from surgery but now we're just dealing with her typical issues.  Katie and I stayed in the hospital with her last night while Nana and Papa G stayed home with the 3 boys.  I don't know that we will ever have both Katie and I stay here at the same time again. Anya didn't sleep much last night and, as the little plaque in her bedroom reads, "When the princess aint happy, aint no one happy".  Between the beeping monitors, Anya's puking and 'crying' (she doesn't actually cry but I don't know how else to describe her noises, wimpering perhaps) and Katie and I attempting to sleep on the little pull-out couch, and the nurses coming in every couple hours to check vitals, it made for a rough night.  Anya did great sleeping the last two times she was here but you just never know what your going to get with this crazy kid...  The funny thing is even the anesthesiologist (who was a very impressive doc, by the way) had a hard time getting her to sleep. She said she couldn't believe the dosage it took to finally knock her out.  I told you she was a fighter.

 

Regarding the surgery, the endoscopy did discover that her nissen my have herniated (a portion of the stomach may have slipped up between the esophagus and the diagram that separates the upper chest cavity from the thoracic cavity).  This is supposedly more common when kids get their nissen at such a young age (5 days old in Anya case) because the surgery creates a weak point at that junction.  In talking with the surgeon here about it, he said he would never give a nissen to a kid less than a year because of this and the fact that all babies reflux and most will just grow out of it... We keep hearing this story time and time again that a nissen at day-5 is just crazy.   So now we need to do an Upper GI to confirm the hernia.  If she does have a hernia it could explain some of her vomiting and definitely discomfort but not necessarily it's cyclic nature.  We would then need to have the nissen redone.

 

As far as the muscle and skin biopsies go, we don't expect to get results for about 2 months... 

update

Anya is settled in now in her room at the hospital. Surgery went very well. We couldn't be happier with the whole surgical team. She seemed in a bit of pain for about a half an hour afterward but then in our walk from recovery to admittion she was very happy and gave a big happy smile. Unfortunately she slipped back in to her vomiting episode again and is actively puking and lethargic again. It was nice to she happy, conscious Anya for the brief moment to know she's okay. So now we just wait and watch over her. Thanks for your thoughts and prayers.

All done!

Surgery's all done. She did great and is doing fine. We will be spending the night just to be safe.

2/9 at pre-op

Unfortunately anya slipped into an episode around 5;30 this am. We are in preop right now waiting to see if they still want to go ahead with the surgery while she is vomiting.. Probably so but we'll see...

A little prayer- Anya

Hello All,

Just wanted to let you all know that Anya will be having a muscle and skin biopsy, and endoscopy on Monday Feb. 9 at 9:50. I am asking that you say a prayer for Anya. Pray that she handles anesthesia well, that the biopsy tells us important information and that Anya has a quick and painless recovery. We appreciate all the prayers and thoughts and know that it helps. You have all been so supportive on this journey that Anya has taken us on. We will update post-op.

Thank You
Katie and Pete

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Another sick day

Anya started puking Sunday night. She is just coming out of her cycle now, kinda a long cycle but we were able to stay out of the E.R. which is always good during the winter months. Next Monday she has her biopsy so we are hoping her cycle doesn't start until the biopsy is completed.

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Anya went snowshoing..

 
 

Anya is wearing snowpants.

New Pictures

New Pictures have been added to Anya's recent pics (see slideshow labeled Recent Pictures) on bottom of main page). New ones of Bodie... he looks a lot like Anders and Aksel! Anya likes to look at him!

1/28 Update..

I guess I'll start with the gossip..  We got a call today from the detective covering our home break-in from last February.  The burglar is behind bars today.  They were able to pickup DNA off the cigarette butt he left in our driveway and link it to his prison record. He was apparently involved in gang activity (whatever that is) and has a history of crimes involving shootings.  From that they were able to link his mug shots to two bank robberies he had done a few weeks after our house.  He apparently skipped town to Chicago after the bank robberies, and while there got involved in a drug deal gone bad and ended up getting shot. He is now paralyzed and will spent the rest of his life in a wheelchair.  The federal courts will take care of the sentencing first for the bank robberies. They're guessing 20-30 years.  Not sure if they'll even do anything regarding our break-in.    Again, we are so very luck and thankful nothing happened to Katie and that the boys stayed sleeping through the whole thing. 

Now regarding the princes.. She is doing great (sitting in my lap right now).  I'm not sure if I mentioned it before but we decided to go ahead with the muscle biopsy.  We will be doing it here in Madison on Feb 9th as well as a skin biopsy and endoscopy.  We met with the surgeon yesterday to go over the details.  Result should follow about two months after the surgery.

Today we drove to Milwaukee to see Dr. Li, the 'greatest Cyclic Vomiting Syndrome specialist in the world' (paraphrasing his actual title).  We had a nice long discussion about the next few things we can try to get this little girl to break this cycle.  We'll see how it goes..

1/21 Oh Beautiful...

 

1/17 Here we go again...

Sick again... Started about an hour ago (3:15). She was having a good day until now.

1/14 Update

We got home yesterday around 1:30.  A fairly good visit overall.  Although we obviously never like to see Anya (or "Onion" as a guy in the elevator thought I call her) get sick but at least it happened while we were there.  We were able to try out Dr. Li's IV protocol (additional dextrose, potassium and zofran) to abort the cycle.  It will probably take a few occurrences to say for sure if it is effective but at this point I can say it may have helped.  She had actually stopped vomiting by the time she received the IV fluids but we'll never know if the cycle was truly over or if was just taking an intermission as it likes to do sometimes. Regardless her episode only lasted from about 11am to 5pm. 

Her EEG went well. We haven't gotten the official report yet but preliminary report shows zero seizure activity, random spikes and no apparent slowing in the waveforms.  Another improvement as far as we are concerned. The option to put Anya on anti-seizure meds was given but we feel confident in her stability. 

1/12 24hr EEG

Anya is getting a 24hr eeg done today. So we will be spending the night at Children's tonight.  Unfortunately she entered into an episode just as we got here.  I guess we saw it coming as she slept until 10;30 this morn.  Note the little pig-tails poking through the bandages.

1/11 Doing well

Anya is doing well today and had an okay day yesterday. She wasn't sick but not very happy. We order new softer/lighter splints for her arms to keep them straight and prevent her from biting her hands. She has a pair now but they are relatively heavy and make it too hard for her to even lift her arms.

And again..

Another pukey day today.  Anya had a great day yesterday as were getting smiles and giggles out of her.  She had a hard time getting to sleep last night however.  She just couldn't seem to shut down the engines until around 12:30 or 1am.  Even then she was doing a lot of twitching and choreaform movements.  She then awoke around 4:30 and I noticed she had either stopped or slow digesting.  I shut off her slow drip feed and put her in her chair so she could sit upright to potentially have gravity help digestion continue and hold food down.  By 7:00 her belly was empty and she looked fine but ten minutes later she turned white, closed her eyes halfway and started puking.  and its been every ten minutes since.

She's back!! She's smiling!!

1/7 Extra sleep..

Anya has been sleeping an awful lot lately.  Not really sure if we need to be worried or if she is just catching up on lost sleep.  She slept very well last night.  She was only awake for 8 hours today and seems ready for bed again now.  Very hand-bitey but at least she's eating and not vomiting..

A side note: Katie came across a protocol for some Cyclic Vomiting kids where they take a Mt. Dew or Red Bull the moment they feel an episode starting and it seems to give them just enough energy to abort the issue... hmmm

1/7 Doing better

Started eating again, slowly.

1/6 Sick again

Well I thought Anya would have been done puking for a couple days and that I would have been safe sleeping in my own bed, but nope..  We woke up this morning to find Anya covered in her mucus and vomit (yea, we feel awful).  We have a baby monitor w/ video on her but sometimes we turn down the volume because the static noise keeps us up.  Most of the times we can hear her retching but apparently not last night.  So we gave her a shower to clean her up and afterward noticed she was having some labored breathing.  I got her dress quick and started off in the car heading toward either her pediatrician or ER, making phone calls on the way. We'd seen her breathing looking much worse so decided to just go to her peds office.  By the time we got there her breathing looked much better and her lungs and oxygen saturation levels were all normal.  We're back home now and Anya continues to vomit every once in a while.  She was so not ready to do this again. She's had one day of full nutrition this week...

1/4 All better

We are still in the hospital but the are working on her discharge now (I think).  Her electrolytes are back within range and she handled her feeds great through the night so they pulled out her IV this a.am. .Heart rate down from 160's to 120's and fever completely resolved.  After her IV was taken out we did a few laps walking around the pediatrics corridor which she definitely enjoyed. You can tell she is sick of laying around here and wants a change of scenery. 

 I spoke too soon last night when I said she was sleeping.  She ended up waking a few moments later and I'm not sure if she slept at all last night.  Ended up just putting in a video for her to watch at around 2am.  She was up still at 3 and 4. Sleeping at 5 but up again at 6.  I'm sure she will crash good when we get her in her crib at home.  She actually just fell asleep a few minutes ago on my pullout sofa-bed. She looks very good now and peacefully sleeping.

 

1/3 She sleeps..

Anya is sleeping now and doing very well. She is still taking iv fluids w/ antibiotics and potassium at a very slow rate. She is also finally taking formula at 30ml/hr. She has not vomited since we got here at 7:30am. Her color and energy is back. Her eyes look good. She still has a slight fever of 100F. She gave a couple small smiles when hearing Mom and Nana's voices on speaker phone. She is such a trooper. Ought to be out tomorrow. and we'll play this game again in a few days...

1/3 A message from Anya's brothers...

1/3 In hospital tonight...

Anya is spending the night in the hospital tonight. She was admitted after I brought her in to the ER this morning for IV fluids. Normal I fight getting admitted because it is a waste of time but not this morning, she was in rough shape and I was admittedly nervous. She is doing much better now but this A.M. was a totally different story. Just extremely dehydrated and a fever of 103.7.. She is now on IV fluids with antibiotics (although I am sure the blood cultures will be negative and it is just her dysautonomia causing her fever but better safe than sorry). Anyway, we are here and she is doing much better. Thanks Laura for helping out this afternoon. Hi kids! Hi honey!! Check out Anya's crazy hair on this video (you may need to click on View full Journal to view the video...

1/2 Not looking so good :(

Anya is still deep in her vomiting episode. She has been extremely lethargic all day long and just looks terrible tonight. She is still hand biting occasionally but it appears as though her bite is so weak that it doesn't even hurt her. We haven't felt yet that she'll be able to hold down any fluids yet so we haven't given any but pretty soon I just do it anyway and let her puke it up. Hopefully at least a little will stay down and get absorbed. I actually just gave her 10cc's of a new food supplement we've been adding to her formula in to her J-tube. It is a highly concentrated calorie supplement made by Nestle's medical food dept. I'm pretty sure it is actually just an overpriced blenderized Wopper from Burger King. Obviously fluids are the most important factor here but we've already tried rehydration (on several occations) to snap her out of these episodes to no prevail. Perhaps a shot of high cal formula will give her the energy she needs to pull through. (don't tell anyone :) but I even tried giving her a little Red Bull energy drink onetime last year. No apparent affect, perhaps she needed an espresso chaser next time)

1/2 Anya's still sick.. but here is something to cheer us up anyway...

From the movie Elf w/ Will Farrel../.

1/1/2009 Pukey day :(

I think we did this last new years day as well.  Anya started puking around 1 this afternoon.  She slept, napped and ate well all week.  She looked questionably pale early around 9am but not too bad...   Oh well.. Happy New Year!! We wish you all the best in '09.  It is bound be an interesting year for sure...

12/31 Happy New Year from the chamber...

12/30 update

Hello.  Anya is still doing great.  She is sleeping so well lately.  I think she has actually slept through the night every day this week!!!!  Normally I'd be thrilled if we got two nights in a row, let alone 7.  And she sleeping long hours too, like 9pm until 7am.  Plus an hour or two nap during the day.  This has got to be so good for her.  I'd like to add that it appears a healthy sleep pattern, as apposed to a lethargic, tired all the time, sleep.  During her awake times she is very much alert.

Her ability to reach for and accurately grab toys continues to improve.  She has been caught a few times recently swapping an object from one hand to another.  This morning in the hyperbaric chamber I noticed her look at a toy on a retractable draw-string hanging up near her left shoulder, reach for it with her left hand and at the same time as she grabbed it she brought her right hand in toward midline and immediately brought that toy to her right hand, perfectly.

12/28 Anya doing great..

Hi all!  ANya is doing very very well.  Has been sinse x-mas eve when she finally offered up her first smile in some time.  She had an excellent x-mas with a visit from nana and papa G.  Loads and loads of smiles on that day.   RIght now Katie (mom) is at the Packer game with her girl friends and grandpa J is here helping me out for the day/night.  Grandpa J is currently experiencing his first dive in the hyperbaric chamber w/ Anya.  So far so good...

12/22 Doing okay...

Baby-Doll is doing okay this evening.  Not great, not terrible, just okay..  We almost took her back in to the ER this morning, not necessarily for more IV fluids but just as a way to possibly get her Admitted.  We decided instead to take her in to her PCP (Primary Care Physician) to discuss what more could be done even if she were admitted.  Unfortunately there is really nothing more they can do.  She is now down to 19lbs 4oz and looks skinnier than ever.  She is still vomiting periodically this evening, although not as much nor as frequent. 

We did decide today to go ahead with the muscle biopsy but to just have it done here in Madison rather than going to see Dr. Schoffner in Atlanta.  It is a bit of a gamble though because in Atlanta they can perform a fresh muscle biopsy and be able rule out (or in) a broader spectrum of mito conditions then a frozen biopsy performed here. Logistically (and for insurance reasons) we are just finding the Atlanta option to be too prohibitive.  Madison is a great facility and we have confidence in them here.  In the rare but quite possible event they don't fine anything here, we can always reconsider Atlanta in the future...  There have also apparently been some recent improvements made to a mito DNA blood test that we had done in the past, that justified retesting.  So that will be the first step.  We are going to try to see the Geneticist sometime in January to schedule the biopsy.

12/22 Sick again.

Anya slept pretty well last night until around 4am.  Then started puking and slipped back in to her lethargic state... another full episode..

12/21 All is well.

Anya is doing fine now.  Not a great day for her but at least she isn't sick any longer. She is back to taking full feeds.She slept great last night from around 10 until 5am and then 6:30 until 8.  She was unfortunately in her crazy state where her hand biting is uncontrollable (she broke through her hand cuffs).  She was in her seat at the table tonight playing with her new switch (while handcuffed).  I had to go down stairs for a minute and by the time I got back up she had bitten her hand and smeared blood all over her face.  She looked like she just went a few rounds with Mike Tyson (except the bites where on her hands, not her ears).  After that we ended up putting her leg splints on her arms to lock her elbows straight so she can't get her hands to her mouth.  She tolerates it extremely well and it doesn't appear as torturous as her baby-cuffs.  She is sleeping now, as are the remained of the liter so I think I'll follow suit.   I'm sure she'll be back to her happy self tomorrow but I sure miss her smiles when its been a few days like this.  Tomorrow's agenda calls for a new G-J button placed at 9 and Physical Therapy at 11.   Oh yea, Anders had his birthday party today with all his kindergarten friends at Pump-It-Up..  It went well...   Good night.

12/20 surprise..

Big surprise... she started puking again at 7:15...    7:05 Looked great, 7:10 Looked questionable.... 7:14 Looked inevitable..

8:20 get the boys to sleep.  8:40 get Aksel back to sleep.  9:00 repeat  9:20 repeat.  10:30 get Anya to sleep in her bed.  10:35 get Katie to sleep in her bed.  10:37 get self to sleep in Anya's spare bed.  10:38 Smile, kick bare feet around on cold sheets and enjoy the anticipation of finally getting to go to sleep after two very long nights.  10:40 "Woof, Woof"  Rylie has to go outside to go potty....  

She's Home!

Anya and Daddy are home from the hospital. She got 2 bolus IV's and is topped off with liquids. She looks a lot better. Now hopefully we can start her feeds soon and get some calories in her.

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12/20 At the ER

Hi all.  We are at the ER just waiting to be brought back for an IV.  Anya was so pathetically cute on the drive in.  Picture looking in the back seat and seeing her in her toddler car seat, wearing pink zip-up long underwear suit, pink socks covering her little feet as they dangle way down from those long long legs of hers.  Her body lathargic and clearly drained of all energy.  A pink and white striped cotton sock on one hand and a green and purple wool sock on the other (clearly just grabbed first available out of the sock drawer late at night).  Red, blue and yellow plastic chain links and makeshift handcuffs keeping her hands down to her side and away from that ferocious chomper of hers.  A dark pink bid Velcro around her little neck with a burp-rag tucked into that catching her occasional foamy spit up and vomit.  Her big blue eyes with heavy, dark eyelids drooping down as she stares vacantly out the car window.   Her little mouth mustering up enough energy to softly grind her teeth like a cow chewing his cud.  Top all this off with a light-pink rabbit hat with two little ears sticking up, a little bunny nose on the forehead and pink fury flaps dangling down covering her ears, keeping them warm in the cold car.

 

This little kid is just dangerously cute...  I love her so much it's frustrating..

 

I'll update after the IV..

12/20 Still sick :(

Anya is still actively puking.  She finally slept from about 5:30 until 7:45 w/ a few pukes in between.  She is currently diving in the hyperbaric chamber while I get Anya's things ready to take in to the ER.  She is showing signs of dehydration; sunken in eyes, dry lips and mouth and needs IV fluids.  Despite the slow drip of pedialyte into her J-tube, all that fluid still finds it's way back up the jejunum, through the stomach, up the esophagus and into the burp-rag (or suction machine or towel or our hands or on the floor).  As I've stated before, her whole GI tract just goes in reverse.

This is a long episode and is taking it's toll on all of us.  Anya's hand biting has been so bad. She has open wounds on both hands despite our efforts in keeping her hands away from her mouth.  We keep socks on her hands to help keep those sharp teeth off her shin but she is still able to either bite right though the socks and/or pull the sock off and bite again.  I finally ended up making her a little pair of handcuffs out of pipe cleaners and plastic chain links.  In her red jumpsuit and restrains, Anya looks like a little convict.

12/20 Almost done..

Anya finally stopped puking around 8 or 9 last night.  Now she's in her irritable, hand biting, ear scratching, nothing makes me happy stage.  She's been holding down 15ml/hr pedialyte through the night and now we are finally starting to give a little food (~1oz formula).  Deciding when to give her food is always a touchy situation.  She acts hungry but if you give it too soon she starts back in to her puking episode.  She (and therefore we) was finally able to sleep from around 9:30 until 1am but now, even though she's acting tired, she just won't shut off.  Hopefully food will calm her down.

12/19 Little pip-squeak still sick

Anya is still sick. Still vomiting at least twice/hour and still very lethargic.  Katie and her are back in the hyperbaric chamber tonight.  It has been a long time since we used it and have been talking about giving it another shot as we just keep finding more and more research data supporting its potential effectiveness (plus we have it, might as well use it).  We also decided to get Anya back on CoQ10 and L-Carnitine.  It's standard procedure for mito kids but we've tried it a few times over the past couple years for a few months each trial without noticing any difference (still getting sick at regular intervals).  Again, after finding more and more data to support it, if Anya has mitochondrial dysfunction it should be helping her.  We'll give it a good 6 month trial and reassess then.

On a diffent note, Anya new switches (http://www.ablenetinc.com/Home/Products/Switches/tabid/57/Default.aspx) arrived in the mail just now.  We've played with a few diffent styles of switches w/ her therapists lately and found a couple that she can activate fairly well.  She'll be able to use these switches to turn on toys and potentially begin a form of communication.  New toys, Yea! 

Hopefully the princess will actually sleep tonight....

12/19 Our little angel is sick again

Another sick day. Anya started around 3:15 yesterday (Thursday). Same old story.. not sure what triggered it. Anya and I are just laying here in bed tonight, just like we've done so many times these past two years, waking about every 15 minutes to the sound of her coughing or retching to tilt her head forward and help clear out the mucus and vomit. These past several weeks have been hard on her. She has surely been loosing all that weight she so proudly gained. I have absolutely no doubt she'll gain it back again.. She will be fine.