She had a great time exploring everything. She is so fast! I was sweating just trying to follow her around and take pictures, even though it was in the mid 70's that day. Although, that's not a new development. Ever since she started crawling, it's been a major workout to take pictures of her. I always feel like I've done a bunch of squats the next day. Maybe this means I need to work out
She also started eating deli meat this week, which is a HUGE thing for her. She wouldn't touch it until now. It had been in the cold, slimy, texturey, untouchable, gaggarific category. Now she actually likes ham, although she prefers if I put it in her mouth, rather than her picking it up herself.
I was eating a ham sandwich in the living room the other day, and she rarely sees us eating away from the table. Until she got old enough to start eating solids, we always ate in the living room. Our dining room table went 4 years without seeing much action until this past year. And now we eat every meal there for Sofie's benefit.
So back to the ham sandwich. She was couch cruising, and I tore off a piece of ham for her to eat and she actually didn't spit it out. She even liked it. She had cruised off, and when I asked if she wanted more, she came right back and opened her mouth for more like a little baby bird. It's so cute! She ate 1/2 piece of ham, and has liked it ever since. It's so good to see her liking new things!!!
Sofie is really making the most of her new molars. She is finally chewing things really well, and one of her favorites is the (gross) Slim Jim. We started giving her Slim Jims as part of her oromotor therapy, and even though it makes me cringe, she really loves them. Now that she has some good strong chompers, she really attacks her Slim Jims. Easy kiddo, you're gonna get whiplash...
The other food she really loves right now are the individually packaged cheddar cheese snacks from Costco. She always goes for her cheese without hesitating. She loves to keep biting pieces off, and sometimes bites off more than she can chew, hence the gagging and face making after some of these bites...
Luckily, one of Sofie's inpatient OT's at Children's told me about another gel thickener that is identical to Simply Thick, but costs much less. We order it online now and a month's supply costs $23.00 + about $9 shipping. SO much cheaper!!!
So as a PSA to those who use gel thickener, here is the link:
You can get the individual packets or a 64 oz. pump. We get the pump, but packets would be nice for travel.
Here are a few pictures of her chugging away at a pretend bottle and sharing with her little (big) friend. Of course she always adds the "ahhhhhh" afterward for effect.
She's still not eating or drinking from her cups well. Bottles are no problem. She'll take 6-9 oz. from her bottles. I never thought I'd see the day when a) drinking that much from the bottle was the norm for her or b) that it would be frustrating for me! I almost laugh to write that, because I still am so happy that she drinks her bottles so well, but she does need to transition to the cup, because I'm pretty sure she'd get made fun of if she took her bottle to kindergarten.
We cut her back to just a morning and a bedtime bottle this week and we are limiting each one to 6 oz. to try to encourage her to eat/drink more during the day. We are finding that she's figured out our little plan and she holds out for her bottles. Soon I think we'll have to eliminate bottles altogether and make her take her morning and bedtime feedings from the sippy cup.
Before I left for NY, she was eating the best solids she ever had. Each day she was eating 10 servings of fruit, 1 YoBaby yogurt, a piece of cheese, 1-2 servings of veggies, and bites of table food that she had never taken before. Plus dry crunchy finger foods. She actually picked up some BBQ chicken chunks and ate them, sauce and all. Usually she'll only pick up dry crunchy things to eat. She even ate some crackers dipped in nacho cheese, and usually once something has been dipped she doesn't want it anymore. She was drinking 2-4 oz per day of water and taking some sips of whole milk from the cup.
Then I left and feeding went downhill from there. Who knows why. There are so many factors that could have caused a change. I hope that once her cold is gone, she'll feel better and want to eat more again.
Before Sofie, I was a very impatient person. Extremely impatient. There are key points along this journey where patience was easy, because it was all you could ask for. Time was all you could ask for.
When I was pregnant, I was in no hurry to deliver, because I knew she was safe until that point. I was never ready to be done with that safety for her. Once she was born, there was no "hurry up and get better", there was just "keep living." Once she was on ECMO, we could breathe. For about 4-5 days. Then each day my worry grew for brain bleeds and other complications from ECMO, and I became very impatient for her to come off ECMO. Then when that day came, suddenly I had a love/hate relationship with that machine.
When she held her own without ECMO, we were SO impatient for her repair surgery. We felt she had a very narrow window for survival, and we didn't want that window to close before she went to surgery. Her doctors told us that once a baby is healthy enough to come off ECMO, they will likely be stable enough for surgery for many days or even longer. But that reassurance did little to reassure us when our whole world was lying on an OR table waiting for a very critical, life-saving surgery.
Once she made it through surgery and was clearly on the road to recovery, we became impatient for her to come off the ventilator. Then once she was extubated, we were impatient for her to be off narcotics. Off narcotics and we were impatient to go home.
We knew long-term feeding aversion was a common complication of CDH, but after only a few days at home, Sofie had kicked her NG tube to the curb and was eating completely by mouth, and doing it very well. We felt like we had finally made it!!! Escaped it.
Then came the recurrences. The first...the second...the third. And with those came the feeding aversion. Feeding aversion: The biggest, most frustrating, non-life-threatening battle you will ever face.
You've made it! Your home! Your baby lived! You've been so entirely and completely blessed to have your miracle child with you. You can deal with the oxygen tanks, and some tube feedings, the monitor, the meds, the many many appointments with the pediatrician, the clinic, the surgeon, the OT and PT. But after a few weeks of true feeding aversion, you will want to pull your hair out.
It's the most unreasonable, nothing, senseless, kick in the face frustration EVER. And you do the therapy, and it keeps it from getting worse. Maybe. And you try EVERYTHING. And you think up new things to try to help. And people offer a million suggestions trying to help. And you go a little nuts. And then things get better. Maybe. Nope, you're just nuts. And so it goes...for weeks...months...a year passes. So. Unbelievably. Frustrating. No, that doesn't touch it actually. Exhausting. Exasperating. Angering. You live it, breathe it, sleep it. There are no words.
And then, you're over it. You are so over it. You are so over answering questions about how your child is eating. You are so over hearing suggestions. You are so over explaining it to people you see. Because here it is: If you haven't lived it, you don't get it. And I envy you for that. But I'm not going to talk to you about it anymore.
Unless you have held your child in your arms and wept and praised God, because he or she is actually drinking a bottle or picking a piece of food up and putting it in their mouth, I'm not going to talk to you about it anymore. There are a handful of you out there that I know, who truly understand this. And I'm so grateful I have you to talk to.
There are so many of you who are so very well meaning in making suggestions. And I love that you care enough about Sofie to want to try to help by making those suggestions. I truly do. But please don't. We are beyond that. We are beyond beyond that.
I glad that your kid did whatever your kid did, and that whatever finally worked for you worked. But guess what? We've already tried it. More than once. Ten different ways. There is no miracle fix to this problem. There's no miracle cup, no miracle bottle or nipple, no miracle food, no miracle plan. I wish there was, but there's not. There is nothing you can tell me that I haven't already thought of, tried, or tried to invent to help her. Live it. Breathe it. Sleep it.
Every child is different. You just have to try to understand it, and deal with it, one day at a time. All we ask is for your continued support. To celebrate the victories and cheer us up when we feel defeated.
If you understand Sensory Integration Dysfunction, modulation, proprioceptive, vestibular, or tactile dysfunction, or if you have been through this yourself, then you may offer guidance and advice. If not, then please just offer kind words of support.
I posted this randomly, so no one would think it was in response to a particular comment, because it's not. These are things that I've wanted to say for months that aren't directed at anyone or provoked by anything in particular. Just things I wanted to get out there.
There are many thick layers to sensory dysfunction related to feeding, and neuromuscular function. We just try to understand them and work around them, slowly peeling some layers away. But they are never truly gone. Only beneath the surface. What appears normal is better, but not fixed. And it may never be completely fixed, just better adjusted.
Sensory integration dysfunction, for lack of a better phrase even though I hate labels and Sofie is not officially labeled with anything, affects lots of kids that started out like Sofie. On a vent, sedated, not being held and touched and fed like a normal healthy baby. It's necessary for survival, but not without consequence.
Some healthy born babies struggle with it as well. It can be a result of decreased oxygen to the brain, or just due to lack of the normal physical and emotional experiences a baby should be experiencing. Whatever causes the brain to have trouble processing sensory input has caused it, and you have to learn how to compensate for it. To work around it, to learn new ways of processing. To adjust. It's difficult. And it's a very long process.
We have made absolutely phenomenal progress with Sofie, thanks in large part to two very important people. Sherry and Dana and have truly been warriors, no, Generals in this battle. And we wouldn't be where we are today without them. I firmly believe they walked into our lives at just the right time for a true purpose.
Sofie's feeding aversion and sensory dysfunction has dramatically improved over the last year to say the very least. But that's not to say that she doesn't still struggle. She does. She will for a while. It's still hard for her. And for us. But we are so thankful to be where we are. We feel like we made all the right moves to get here. And we have to keep pushing forward.
The feeding aversion battle is long and hard fought. And even though things seem normal (and they are getting much much closer to being normal), they still aren't. It's just not as obvious. It's like walking off the battlefield with no physical evidence of the battering you have taken, and being ready to fight again each day. It's hard to say until we've truly reached the other side, but it feels like we are about 80, maybe 90% through the battle. Give us another year and we may truly be there. And until then, please just celebrate each victory with us as it comes.
"God's way of answering the Christian's prayer for more patience, experience, hope, and love often is to put him into the furnace of affliction." --Richard Cecil
Somehow, after sitting in 95 degree hot sunny weather for 2 days before we were able to get in it, it was still freezing. We got in, and it was so cold Sofie was shivering. I even heard her cute little teeth chattering! I thought...maybe we'll get used to it in a couple of minutes and it won't be so cold. Nope. Cold. Still shivering. Still cute. But cold.
Before we got in, I took the pictures in the collage below. I spent more time taking these pictures than we actually spent in the pool, and I spent about 5 minutes taking these pictures. It was a quick (and frosty) dip for sure.
So I skipped last month. Oops! And since Sofie was 17 months old on the 10th, I figured I should hurry up and post her 17 month update before it got too late for this one too.
- Not much has changed with her sleeping and playing schedule since her 15 month update.
- Her weight has been hanging around 20 lbs for the last month.
- She only takes 3 bottles/day now. One at 6:30am, one at bedtime, and one at 11:00 pm. She takes anywhere from 6 - 9 oz. per bottle. Wow! I never thought I'd see that day. We found that by eliminating the other bottles she really upped her intake with each one she still gets, which sort of defeated the purpose of limiting her intake from the bottle to get her to eat more solids and drink better from the cup during the day. So we are going to take away the 11:00 pm bottle now and limit the remaining two to 6 oz. each to try to encourage more solids and cup drinking again. Fingers crossed!
- Eats breakfast, lunch, and dinner at the table with Mommy & Daddy and is offered her sippy cup with each meal and throughout the day. She takes 2-4 oz. of water during the day and sips of milk when I can trick her into it.
- Likes: still likes the same foods as the 15 month update.
- Loves: cheese (yum!) and slim jims (yuck!).
- Tolerates: veggies and meats. Sometimes. Maybe.
- Drinks better from an open cup (Mommy or Daddy's) than anything else.
- Takes a few steps all on her own on rare but special occasions (since 16 months).
- Sings songs. It sounds like do, do, dooey, dooey, do. And she provides accompanying dance moves and head bobs.
- Favorite Word: Bah Bah (bottle). She says this ALL DAY. I think the lady doth protest too much. But it's cute, so it's okay.
- New Words: "Go", and points and asks "What's that?" all the time.
- Rides her car or pushes it everywhere.
- Brushes her hair (for several months now, I just forgot that one last time.)
- Likes to show you her button (belly button).
- New teeth: two molars on bottom and two molars on top, bringing the grand total to 14.
- She is officially a toddler now and is starting to throw fits (mini fits) and be a real sass-a-frass. She is stubborn!! And still cuper cute!!!
I was just slowing the pace and trying to relax a little when things started going wrong around the house. And apparently when it rains, it pours. Or so I hear. So to the many people I have yet to return emails and phone calls - I'm sorry!
Right before I left for Vegas our washing machine started acting up. It's been quirky for a few years, but all of a sudden it decided that on "super" sized loads it would forget how to start the wash after the basin had filled. I frequently start a load of laundry before bed, then get up in the morning and throw it in the dryer.
Let me just say, this is a bad way to discover this problem. I started the washing machine, went to bed, got up and did a few things around the house, then went down to the basement only to find that it was STILL filling. 12 hours of gushing water later!! This actually happened twice before we figured out what exactly was happening. Yikes, water bill. So if the water level in your favorite stream has lowered in the last month, sorry that was me.
I started shopping for a new washing machine. And I'll be honest, it stung a little. I was just about to order a new one a couple of weeks ago. But then another lovely surprise came our way. Our dishwasher stopped working and started doing this...
Yes, this just over two-year-old, outrageously expensive (like one of my whole paychecks), (supposed to be) very high quality, beautiful dishwasher...
It makes me sick! We had a certified service person come look at it, and got the huge blow that the motor needs to be replaced for a mere 400 bones. Ouch, that stung a little. Okay, a lot. But isn't it still under warranty? I've heard that question so much I think there may be an echo in the room. And the short answer is: No. The long answer: It seems to pretty much be the standard for all dishwashers these days to have a full warranty for about two years. After the two years, (which we are just past - of course) some parts are still under warranty. But not that beast of a $400 motor. Electrical panel = yes. Motor = no. And wouldn't you know the motor is our problem.
Here's the kicker: If we replaced the motor for (um, how much was that again?) $400, that new motor would only be warrantied for 90 days. So if it died 91 days later, then guess what we'd be buying again? Another motor. No thanks. For about $600 I can replace the whole dishwasher. True it will be a lesser dishwasher, but I'll still have the memories.
So the dishwasher moves into position #1. I can deal with a quirky washing machine that I can't leave unattended, but hand washing dishes every night for 45 minutes is for the birds. Then this happened in my closet.
On a smaller scale this felt like...hmmm...well, let's say just for hypothetical purposes (remember this?) that 3 weeks after you brought your miracle baby home from the hospital, and all your family and friends were out of town, you fell down your stairs into your living room (washing machine) and broke your foot (dishwasher), and then while you were laying there in pain with a broken foot your two 80 lb dogs started jumping on your face and your robot vacuum started hitting you in the arse (closet). Really this kind of thing is just annoying.
Our master (LOL) closet is this big. Or should I say this small?
Which is why I have this klassy personal armoire...
And why Kenny stacks his pants and shorts like this...
And our closet is still PACKED with clothes. You'd think we dress well or something. But you'd be wrong! I mean the closet rail is so tightly packed with hangers that I literally cannot scoot them one more millimeter to add just one more hanger. So was it really any surprise when this happened?
And let the record show that that was Kenny's bar and not mine. Luckily this proved to be an easy fix and the master dressing suite is now back in business. Hint of sarcasm.
Okay, so closet disaster averted, dealing with quirky washing machine, shopping for an inferior dishwasher. I just need to sit down and relax. So I did. And this happened to my chair.
Time to cut back on the carbs and fats. Seriously, do you see how that leg just snapped off like a tiny twig beneath me?!? Self-confidence is high. Repeat: self-confidence is high. Now we're just bordering on ridiculous. I'm not even sure how to respond to this chair. Or how to replace it. Ugh! Sorry, vacuum in the arse again.
We took her to try on dresses last week, and she had so much fun. The dresses were all so cute. One of them even had a train. We found a really cute one that fit her really well and won't need any alterations, and then a couple of days ago I found her the perfect pair of shoes to go with her dress, so she's all ready to go.
...Just need to practice those walking skills!