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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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.