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...