Oct 31, 2008

Happy Halloween!

Click Here For the Entire Halloween Week Slideshow at Shutterfly: http://cmd.shutterfly.com/commands/pictures/slideshow?site=ainsleyspics&page=ainsleyspics&album=283

I hope everyone had a Happy Halloween! It was a hectic week with Steve having a major work deadline (and working until 2am many nights) the week before the holiday. But somehow we managed to pull it all off. We made it to the school Barns & Noble bookfair. Surprised Daddy with a new Hermoine hair-do. Had costume day at ballet class and preschool. We squeezed in some fun carving pumpkins at a friend's party. On Halloween we made chicken alphabet soup in a pumpkin and cemetery "dirt" cake (since I'd promised the kids we would but didn't have time to do it earlier in the week as planned). We all Trick-or-Treated around the neighborhood for about an hour. WE DID IT! Phew! Thank God my sister Sheryl was here Halloween night to help us pull it off and hand out candy while we were gone. It looks much more fun and relaxed in pictures than it was in real life.

This year the whole family dressed in Harry Potter costumes: Evie was Hermoine, Adrian HP himself, Steve was Professor Dumbledore (he forgot to wear his glasses, oops), I was Professor McGonagall and Ainsley was Harry Potter's owl Hedwig. She cried because she hated the hood but stopped after about 5 minutes. At least she was toasty warm outside in the cold. Steve and I would normally NOT dress up for Halloween. But, Evie has been obsessed with Harry Potter all summer (complete with life size paper HP decorations all over the house e.g. see Jenny on the bathroom floor picture) and has been talking about dressing as Hermione since then. So somehow she badgered us and pleaded enough to convince us to do it. In the end I'm glad she did even though it was a lot of trouble just for trick-or-treating (and of course the picture my reward).

This Halloween Ainsley was uncertain about the whole costume thing. We started trying them on earlier in the week. It took several days seeing me dressed up for her to start to get that it was still me under the granny wig and witch hat. She would look at me with the funniest expression like, "What is going on? Who is that? What did you do with my mommy? Should I laugh, cry or be scared?" I SO wish she could talk so I knew what she was thinking. She's a pretty go-with-the-flow kind of gal so luckily she got over the owl costume pretty easily and then seemed to enjoy the walk around the neighborhood in the dark trick-or-treating but the real fun for her began when we got home, took off the costume and she got to play with the kids' candy all laid out on the carpet. I guess that's the best part for all of us, really. Evie and Adrian ate enough chocolate to make them sick but Ainsley's treat of the night was her sweet little feet.

Oct 30, 2008

Ainsley Turns Two

We were excited this year to have a low-key birthday celebration for Ainsley on the 18th. Sure we'd considered having a party. We did the big party thing for her first birthday because that's what you do on a first birthday. It was a great party and a perfect way to end a really remarkable first year. But at age 2 it seemed to me that she would most enjoy being with her family doing something fun. I decided to throw caution to the wind and take her to the Seattle Science Center despite the chance she could pick up a bug and we'd have to reschedule her surgery that was only 3 days later. We used lots of hand sanitizer and thankfully all went well.

Ainsley's birthday started out with a special dance performance by Evie. And the presentation of some hand made cards. Our usual Saturday ritual of coffee in bed with the kids making a ruckus in the bedroom. Finally we headed out to the Science Center. We hadn't been there since Evie and Adrian were much smaller. This was the perfect age to take them. They were so curious about all the little mini experiments. Being someone who is curious and likes to learn I also had a great time. My favorite was the giant zipper. I've had more than one stuck zipper in my life and had always wondered what the heck the problem was. What's to go wrong with something as simple and low tech as a zipper, right? And yet it happens. Apparently all the teeth have to be exactly perfect to fit through the slide at exactly the right angle to mesh the teeth together. If one tooth gets slightly bent it throws everything off. I also marvel that such an everyday object that we take so for granted as a low-tech no-big deal thing was only invented in the last century. The precursor to the zipper in 1892 but the zipper as we know it was patented in 1906 and further refined even later that that. Even the automobile was invented in 1889. Interesting isn't it, that it took man longer to invent the zipper than the automobile? Well anyway......

We also enjoyed testing our grip strength, testing our pitch accuracy, testing the gravity of cantilever, testing our vision (I REALLY need my glasses.), seeing how much electricity a lightbulb or two uses, taking pictures of the dinosaur robots (unfortunately the low light "broke" my fussy expensive camera >:( ) , we saw the butterflies and finally the main attraction for Ainsley, the toddler water play area. Sadly despite a nap in the stroller she was pretty tired by then so it wasn't quite as fun for her as I'd hoped. Still it was a great day out with the kids. I tortured Ainsley by making her wear a jeweled crown to denote her as the birthday princess. As usual we stayed until it closed before we headed home.

Adrian played with Ainsley on the floor while Evie and I got her gifts together. She just loves Adrian to bits and he loves her. I wonder if they'll always be close. All three of them really. She's lucky to have such a great brother and sister who love her so much. I'm always amazed at the grace with which they've accepted her as one of them, no different in any way.

We decided that a dinner at home was best for one who doesn't really eat. We ordered a pizza. Like every night Ainsley sits at the table with us in her highchair. She's gotten pretty funny over the last month or so she demands food. We often give it to her but not always. Well now she actually gets mad if you don't give her some. She plays with it and sometimes brings it to her mouth. I gave her a pizza crust and she actually brought it to her lips and appeared to taste it (more of a lick than a bite). THEN she proved to us that she turned TWO and looked me in the eye and hung the crust over the highchair and smirked and dropped it. I pick it up and give it back to her and she does it again....and again. I know this is ordinary two year old behaviour, but it's the first time I've seen her deliberately throw food. Thankfully it was a pizza crust and not my chicken paprika or something equally messy. I was thrilled.

We opened some presents. She had to have a lot of help from her brother and sister but they were happy to oblige. She got an adorable little woodland cottage with magnetic critters. I thought she'd love it and she did. Phew. It's hard to buy for a child with limited play skills and two older siblings that already have a house full of toys.

We finished up with some lovely cupcakes from Macrina. Ainsley licked a little frosting off her finger before she pushed it away. Maybe next year she'll actually eat a bite of cake. I can dream.

Oct 26, 2008

She's Smiling and Vomit Free

Before the surgery. The scar is from her gastrostomy.

Clearly in a lot of post surgery pain despite the morphine.

The incision is 3" long and goes over the gastrostomy scar. They use dermabond instead of stitches to close it. I think it looks amazing for the first day!

Refusing to smile no matter what.

Even for her favorite visitors.

The great news is that we finally started seeing her beautiful smile yesterday. That is the best and such a relief! Since the surgery we've had about 8 incidents where she coughed up some secretions and it caused her to wretch. Most likely the majority would have ended in vomit in the past. And a couple where they were so forceful her face turned almost purple but still there was NO VOMIT. So I'm feeling pretty confident that the surgery was successful! She's taking small feedings once an hour so there will be the hurdle of transitioning her back to her regular feeding schedule. But so far we have not seen any of the terrible side effects that can accompany a Nissen.

Here's a link to info about a Nissen fundoplication and how they work: http://en.wikipedia.org/wiki/Nissen_fundoplication

Oct 23, 2008

We're Home!

Yea! We made it home about 6:30. Had a hodge-podge dinner of left-overs. And are back to life as normal. You would hardly know that Ainsley was in the hospital on morphine just this morning. Evie's doing homework, Adrian's kicking a ball around the house, I'm on the computer and Ainsley is in the living room on hands and knees playing with the toys she got for her birthday less than a week ago. She still will not smile no matter what we do which, as you know, is unusual for her. Poor thing must be in a lot of pain still but she's persevering. I'm sure it'll be better tomorrow.

Edited to add: I guess I missed some details. What I think happened was that she was having excess gas due to the anesthesia and surgery and it was causing the intense pain spikes yesterday. Yesterday evening instead of doing continuous feedings we did gravity boluses and setup a g-tube extension and open 60ml syringe to vent the g-tube. It immediately seemed to ease the pain and we were able to gradually reduce the morphine and transition her over to oxycodone by 2:30. Overnight we switched to a continuous drip. In the morning, rather than doing the continuous feedings that the surgery resident recommended, we continued with boluses and continuous venting and got her up to her goal of 50 ml per hour by 4:45. That was the magic ticket for coming home, off the morphine, IV and at full feeds of 50 ml per hour.

Oct 22, 2008

Post Surgery Update

Ainsley has still been in a lot of pain. I'm sure the incision is very painful so it's difficult to tell if it's that, or if it could be gas, now that her stomach can't relieve any built up pressure. I'm not sure where the day has gone, we haven't made any progress on the feedings and at 2:00 they had her at the whopping rate of 5 cc per hour. Good grief. It might evaporate by the time it gets through the line. They only want to up the amount by 5cc's every 4 hours. So for us to get to our goal of 50 cc's per hour will take a day and a half if it goes perfectly. The surgeon who said we might go home today is going back to his standard response of the average recovery takes 3-5 days. I'm still optimistic and hope she'll bounce back over the night and get discharged some time tomorrow.

Sadly, she's pretty unhappy. I bought her a little doll that giggles in hope that it would cheer her and she barely looked at it and didn't even crack a smile. She isn't interested in playing with anything even just to chew on it. We had some bad gagging episodes where she tried to vomit and wretched instead and her head turned a really deep shade of red. Followed by blood tinged secretions. I'm just hoping that she'll figure it out over time so that won't continue to happen. It really looked excruciating. The surgeon said there will be swelling of the stomach for a month. And that it will take a little time for her to adjust to swallowing and managing her secretions. I have to remember that. It'll take at least a month to see the outcome of the surgery. At least a month. At least a month.

Steve will bring the kids to the hospital to visit tonight. I can't wait to see them. Unfortunately we lost our roomie and have a new child arriving while I type this. Cross your fingers that we get an easy roommate and that Ainsley starts feeling better so we can get out of here.

Oct 21, 2008

Nissen Surgery Today

We checked in at registration at 6:30 am and were brought back to the surgery prep area. I run into Ainsley's neurosurgeon a nice man who reminds me a lot of Santa Claus. It seems I can't go to Children's anymore without running into people who know her but I'm always thrilled when people get to see how well she's doing. But there is only time for a quick hug and few words since he's in his surgery scrubs and we're off to surgery. They took vitals and went through all their checks and balances. They take extra precautions because of her trach and complex medical history. I met with the anesthesiologists, nurse and surgeon. We joke about the size of her chart (3 inches thick) , I think he says chart number 107, but actually it's only 1 of 7. We laugh that that would be a new record. But then, she's only 2, sixteen years from now who knows.... I'm told the operation will take upwards of three hours. They want to give her a sedative but I ask not to and at 7:30 they take her away to the OR with hardly a whimper, the sweet girl. I get breakfast at the cafeteria and kill some time in the Parent Resource Room while I wait there for Steve after he gets the older kids off to school. A doctor came to talk to us about participation in a Reflux research study. That took up about all the time and by 10:00 they page us to come wait for the surgeon.

At 10:20 he arrived to tell us the surgery went well. He wrapped her fundo (plication) tight so it should hold tight no matter how much coughing she does. We are feeling good. The weight of the decision is off our shoulders now that it's done. We head to the Giraffe wing to meet Ainsley in her room. We receive a visit from Ainsley's dietitian to review Ainsley's eating plan. We meet our roommate. A friendly woman whose son with Down Syndrome had heart surgery the prior week. With the common bond of having a third child with special needs we hit it off and have lots to talk about while our children recover. The well-respected occupational therapist here at Children's happens to visit her son and she's nice enough to come to our side of the room and talk at length about Ainsley's case in relation to eating. She gives me great insight into how to make sense of a very complex issue. I'm thrilled to get a chance to talk to her since she normally only sees the babies. Hospital time. It sure goes fast.

Ainsley is on morphine but was obviously uncomfortable and would arch in pain every 20 minutes or so as if she was getting a cramp, and her heart rate would shoot into the 180-190's. We keep paging the nurse for boluses of morphine. After every 3 boluses she ups the drip rate. Six hours later we feel like it's finally at about the right level. She's still sedated and may not "wake" up for a few more hours. It's been 11 months since her last surgery so I am really not sure what to expect from her once she's awake. I don't know if she'll be as easily content to lay in the crib.

Her incision looks really good. It is about twice as long as it was and goes directly over her g-tube incision scar. It's covered with the glue and tape rather than stitches and hardly looks new or bloody at all. I think it's going to heal nicely.

They say it is possible we could go home tomorrow, but if not then the next day.We can't wait to get home and see how she does. We can't believe she will be vomit free. It's almost too good to be true.

Oct 17, 2008

Second Birthday Eve

Tonight is the eve of Ainsley's 2nd Birthday and I'm feeling pretty good. Better than last year for sure. I received phone calls from both my birth parents (I was adopted, long story) this afternoon and spoke with them both for quite awhile just catching up as well as talking about Ainsley and her birthday. I think they both knew that it can be a time of mixed emotions and wanted to check in with me. I appreciated that they were thinking of us. It's only natural to reflect at this time about all that happened on October 18th, 2006 the eve of our 10th wedding anniversary, and the days that followed. Last year I found her birthday to be more emotional. Perhaps because the year following her birth was the hardest in my life and her first birthday marked the end of a long hard year. The challenges we faced as a family, the concern for Ainsley's health, the search for answers that were never found, all the practical challenges of having a child in the hospital for 2 months and coordinating 4 surgeries while having two other small children, all the questions, of self-identity and the meaning of life, that the year caused me to ponder, all of it. It was so beyond anything I ever imagined.

Looking back over the second year a lot of good has happened.
  • First and foremost Ainsley has done really well. She has recovered from her hip surgery and is now after 10 months finally able to put some pressure on that right hip. That has lessened my fear that she might never walk. She is crawling around the house and even if it IS at a snail's pace it is so wonderful to know she can get to where she wants to go with a little patience and perseverance.
  • She's developed a sense of curiosity and is really playing. Her world is opening up to her and I know that she will not live a bored life.
  • She started special pre-school at the birth to three center. She has great therapists who really care about her progress.
  • We've developed a good relationship with her new pediatrician who we love even more than Dr. Schuette who'd been our pediatrician for all three kids for almost 7 years before she retired from the practice.
  • Despite our somewhat anti-climatic trip to Cincinnati and their frightening diagnosis of bronchiectasis her lung health seems to be unchanged and is as good as it always was.
  • We applied for the medically intensive waiver program and got rushed through the system. This gives us funding for in-home nursing that our insurance would not provide. We found a great nurse who's working out well. Having her care for Ainsley just two days a week gives me the help I need to restore some normalcy in our lives.
  • I'm slowly learning to trust that after being there for every procedure, surgery and doctors appointment, after hours and hours of research on the internet and with the collective support of my friends on the pediatric trach support group I know far more about Ainsley and her needs and conditions than any specialist who has read her chart.
  • I've come to accept my status as a mom of a special needs child and realize that it's not so bad. It could in fact turn out to be a joy as well as an opportunity to reach others with a message of acceptance and gratitude.
  • I've come to realize that this is not my identity but only a part of my life.
  • And I've come to recognize the issues Ainsley has will be with us forever. Some may resolve but I'm realizing that it is likely that she'll always be special. It's okay because she's an important part of our family and makes us special too.

So this year I feel her birthday will really be a celebration with far more joy than sorrow, just as it should be.

Oct 14, 2008

Ainsley's First Haircut

Before the haircut. Just getting started.

Not so sure about this haircut thing.

After the haircut and a nap.

Ainsley got her first real haircut today. She's had her head completely shaved twice for cranial surgeries when she was 3 and 9 months old. The last time being 15 months ago. This is the first time I really cut her hair by choice. The first two times I cut a curl off to save and let the surgery team do the rest. People often say she has a lot of hair. I can only imagine how long it would have been.

The catalyst for the cut was that about a month ago we started seeing hair breaking off on the back of her head. Sadly it's now only about 3/4 of an inch long at the crown. We think she's been having her hair fussed over too much by a certain someone. So to solve the problem I gave her bangs so we don't have to put the hair up to get it out of her eyes. I've learned over the years that bangs are a no-no. They require a lot of maintenance. And they take FOREVER to grow out once you've grown tired of the constant trims. Evie still has some wispies in the front from when she had bangs when she was 4. I told myself I'd never do it again but here I am doing it anyway. It's better than her going bald, right? Remind me of that when she needs a trim every few weeks.

Oct 9, 2008

Gastric Emptying Scan & Results

Ainsley in the Gamma Camera

I wonder how many more tests Ainsley will have with names I can hardly remember. The surgeon who will do Ainsley's Nissen wanted a Nuclear Medicine Gastric Emptying Scan to see if she had normal motility. When he suggested it I wondered to myself why didn't we already have of these.......Well now I know.

10:15 that's the time we were to show up for her appointment. When we eventually get back to the room (they always seem to be behind schedule) they show me what they're going to do. Give her a bolus feeding and strap her on a narrow "bed" on her back for an hour?! I NEVER put her on her back after a feeding. When I've had the misfortune of her having poopy diaper after a feeding I dread lying her on her back for the 2 minutes of the diaper change. It has frequently ended in vomiting up into the face. (In fact this just happened while writing this blog post. That Nissen can't happen soon enough.) So my jaw drops and I explain that she is highly likely to vomit in that position. I knew that they'd be watching her for an hour but had no idea it would involve being laid flat on her back and for so long. They try to reach the surgeon who is, of course, not available. So we're waiting for 40 minutes for an answer and Ainsley has not had any food since the previous night. She's HUNGRY. And the few toys I brought are starting to get old so I'm really worried that they'll never last another hour.

Finally we get clarification. Yes indeed he wants us to do it. No surprise really. So we strap her onto the bed with this enormous blue velcro strap and the technician uses the remote control to move the camera over her body. It's like an MRI where you are in a tube and they adjust the height so that her face is just a few inches from the tube. She hates laying on her back and is hungry and scared so of course she starts to cry. The nurse injects a small quantity of tracer into her g-tube via syringe. It is radioactive and allows the gamma camera to track the tracer as it moves through her digestive system and show the movement of the stomach contents on a monitor. Then she is given a bolus of formula. We opt for a 6oz feeding instead of 8oz to minimize our chances of her vomiting. I hold her hands and she starts to calm down once her tummy is full. Then I get creative with my bag of toys and come up with games to play for the hour.

I happen to have a plastic fly. I make the fly buzz and land on the machine over her head. Just like a real fly it buzzes and lands, buzzes and lands. She's loving it and is happy and smiling. But buzzing is not great when you have a headache. On the other hand neither is a crying child who might vomit up the tracer and ruin the test. Since Ainsley gets increased sections while crying it is important that she remain calm and happy since increased secretions = increased coughing = high probability of vomit. Thankfully the technician is able to find me some ibuprofen to take the edge off of my ever-increasing headache. Who thought up this stupid game? Oh yeah that was me. Amazingly, I am able to keep her attention with the fly for about 20 minutes. Now only 40 to go....Sigh.

Then we play with a mirror. Sing mirror mirror on the wall, who's the cutest baby of them all? Tap the mirror on the machine. Tap it here tap it there. Uuuuughhh. This lasts about 15 minutes only 25 to go.

Peek-a-boo with a towel. Ten more minutes, fifteen to go.

Old McDonald with some other small plastic animals but unfortunately I have a lion, dinosaur and turtle and not a lot of farm animals.

But we do have a DOG. So we sing "How Much is That Doggy in the Window". But I can only remember the first few verses. It gets old although it's kind of fun to make the dog bark and wag it's tail.

Finally the hour is up. The best part? We get to come back after an hour and get 5 minutes of pictures then come back another hour after that for 5 more minutes of pictures! They forgot to tell me that about these two additional hours. So the appointment that I was told would take a 1 1/2 hours lasts until about 3:00. Luckily today the kids started woodworking class after school so I don't have to pick them until 4:30, rather than the normal 3:20, and I will have time to run home to drop off Ainsley and our nurse before leaving to pick up the kids.

We take an hour lunch break, go back for pictures.

Kill another hour giving her a feeding and getting gifts at the gift shop before going back for the final pictures.

By now she's fallen asleep and when I have to pull her out of the stroller to strap her to the bed for the THIRD TIME she loses it and truthfully I don't blame her. Poor baby. Funny when the five minutes was up I picked her up and told her we were all done and pointed to the machine and signed "all done" she immediately calmed down. She really seemed to understood me! That was cool!

So the results are in and (drum roll)...............she has normal motility and reflux. Exactly what I told them. I had put food coloring in her feeding and it came back in a day so I knew she had normal motility. And it's been obvious for some time that when she coughs the pressure causes stomach contents back up in the esophagus. It also showed no tracer in the lungs but again, I've never seen the dye come out in her trach secretions so even that was what I expected. Basically it was a lot of hoopla to confirm what I already knew.

I've Got A Third Rascal

Over the last month or so Ainsley has become more and more curious and mobile. Lately she's been crawling (slowly) around the house getting into stuff. The toys under the bathtub. She'll pull stuff out of the diaper/go bag (included medical supplies). She'll take all the stuff out of the suction machine bag. Play with the kids scissors if they happen to be left on the floor. A funny one: she unloads the diaper caddy and chews on the Boudreaux's Butt Paste tube. Evie and Adrian think it's hilarious when I scold her, "Ainsleeeeeey, don't chew on the butt paste!" She tried to put my slipper on for me. She's taken all the DVD's off the shelf. She even opened the kids cups drawer all by herself to play all the cups, lids and straws. Mama's proud! Check it out.

She knows she's being a rascal!

I'm trying something new. Here's a link to a slideshow of more pictures. I hope it works.

Oct 1, 2008


Those of you who know me personally know that I don't really believe in God. At least not in the way that most people think of, a being who is paying attention to the minutia of our lives and listening to our prayers. But every now and then he seems to call me out. Like tonight.

This is my day: Drag myself out of bed after a night of too little sleep, having gotten up at 3/4/5 am to suction Ainsley because she was coughing. Rush around to get myself and Ainsley ready to leave at 8:30 for the appointment. Help Steve get the kids ready for school. Rush to Children's for the surgery consult, rush home to schedule the surgery because we got tired of waiting for the scheduler after being at the appointment for 2 hours. Write a blog post. Paint the porch for 5 hours. Welcome the kids home from a play date. Say goodbye to the nurse and sign off on her paperwork. Make dinner. Clean while trying to help 2 kids do homework. (Steve is working late to make up for time lost at the appointment.) Get kids ready for bed. Change Ainsley's trach because she's been coughing like crazy. Get Ainsley's tube feeding ready and meds. Did I mention that I'm still getting over a cold? So I'm sitting on the bed with Ainsley over my legs. I've given her a feeding. I'm thinking to myself that the trach change seems to have helped the coughing. She's so sleepy she lays her head on my chest and it feels so good to just be sitting together. But it's been a big day and my mind starts to wander and I'm thinking about the surgery: what if when she gets over this cold she stops vomiting again? Maybe she's finally about to outgrow it. Maybe I should wait a few weeks to see what happens. What if, what if, what if..... And right then I think if God had a hand he'd have slapped me upside the head. But since he doesn't Ainsley coughs and vomits her entire feeding onto my chest without warning. I could almost hear God saying Neaner Neaner. Gotcha! Don't believe in me huh?

The hazy photo? That's because the camera is covered in VOMIT (it's my waterproof point and shoot). If you think it doesn't look too bad, that's because I scooped it all off onto the plate. This is just what was left. I don't think I'll be second guessing that Nissen anymore.

We Scheduled The Nissen Surgery

We just got back from the appointment with the surgeon at Children's. Even though he performs a lot of Nissen Fundoplications he tries to avoid doing them unless he thinks it's absolutely necessary and that it will relieve symptoms for the patient. It's an interesting approach to have a surgeon who is hesitant to perform surgery. He had an interesting thing to say in that her vomiting and coughing is like the chicken or the egg question . I've heard this before but what he firmly said that I liked hearing is: It is unanswerable and irrelevant. She has an irritated airway, issues of vomiting and reflux and a lot of coughing. Is the coughing causing the reflux or the other way around. We will never know. But what we do know is that it's here and we've tried all other possibilities to eliminate the vomiting and they have not worked. We know that she has bronchiectasis, that is damage to her lungs, and that the reflux could have caused it and could make it worse. It is also possible that the swelling of her upper airway (that is the reason for the trach) could be caused by the reflux or vomiting. She is underweight due to the vomiting and inability to tolerate larger quantities of food. And of course there is an issue of quality of life because of the stress it causes for the whole family. Not to mention the additional laundry. (Ha, ha.) Vomiting can cause oral aversion and complicate oral feeding. All in all, a whole lot of reasons why she is a good candidate for the surgery. He did say that there is no way to know for sure that the surgery will resolve her airway issues and there are risks and side effects to the surgery but we are really out of other options. We have to try it to know if it would help her. Because of his approach to Nissen surgeries Steve and I feel reassured that it is, in fact, necessary. It's scheduled for October 21st, just 3 days after her 2nd birthday. It will be done with an open incision as opposed to laparoscopically. I wish I felt 100% at peace with this decision. I've suspected for a long time that it was inevitable. With her starting to crawl in September a small part of me still wonders if it would resolve itself over time. Because she's developmentally delayed it could resolve when she starts walking but when will that be? Darn, I forgot my crystal ball again! But at the same time we've put up with this hell for 2 years. How much longer is long enough? I'm sure once it's done I'll be glad just like when she had her gastrostomy surgery last year.