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Sunday, March 16, 2014

Juggling

We're doing a lot of juggling around here these days. (hence a blog post that I started writing 6 days ago and am now attempting to finish...) Juggling kids, juggling household chores, juggling taking care of an increasingly fussy baby, and trying to make sure everybody feels loved and is happy. It's a big job and I'm SO thankful to have a husband who is as dedicated to our family as I am and who loves being home as much as we love having him home. I would have been a disaster these past couple of weeks without him here and I'm dreading when he goes back to work already!

Monday was Ashtyn's 11th birthday. She is our oldest. The original puker. :) If you're new to the blog, all 4 of our girls (yes, new baby included) have been refluxy, pukey babies. Ashtyn got off to kind of a rough start because she had some feeding difficulties and pretty much half of everything that we could actually get into her came right back out. Aside from having to cover everything with towels, blankets, and burp rags for the first 18 months of her life, she was always a really happy, easygoing girl and eventually grew out of her reflux problems. She is just as sweet as they come and is the BEST big sister the other kids could have ever asked for. She is an amazing kid and I'm so grateful for her and for how helpful she is. I remember her kindergarten teacher telling me at parent-teacher conferences once that Ashtyn had an old soul, and I think that's a perfect description. She's always been very aware of other people's feelings and has a special place in her heart for people with special needs. She's a great kid and I love her to pieces!
We did all the things Ashtyn wanted to do for her birthday. (except for me getting my teeth cleaned, that was scheduled before I realized her bday was on Spring Break) I took her to get her nails done and then we went to her favorite restaurant for lunch, where she accidentally learned that some sushi has raw fish on it. :) After that, we stopped by DQ to pick up an ice cream cake and then went home so I could snuggle my baby. It's crazy how much a mama can miss her baby after an hour or two away!


 After we got home, Raya's respite provider came and Donny took the 3 older kids to see a movie. It turned out to be a pretty peaceful afternoon for me.

Tuesday ended up being a pretty low-key day. We ended up canceling Raya's therapy appointments for the day because she had puked all over the living room carpet Monday night and we were still trying to figure out if it was a motility problem or a stomach bug. Turns out that it was a motility problem caused by "just a cold". This is why we stress about her catching "just a cold" or anything at all. Her stomach pretty much shut down and instead of tolerating 4 bolus feeds of 2 hours each, she is now having to be fed continuously at half that rate, so she's on the pump for about 16 hours a day.

Either way, she wouldn't have felt up to doing anything at therapy anyway so it was just as well that we canceled. The kids pulled some weeds in the back yard and everybody just kind of did whatever all day. It was great! Except for the part where this little princess cried ALL DAY LONG. She would cry for half an hour or more, then fall asleep and sleep for 20-30 minutes and then wake up and cry some more. It wasn't fun.

Wednesday was busy. I had scheduled Raya's first appointment with her new neurologist back in December when we found out that her previous one had left (SO SAD!!). I knew I'd have a baby that was approximately a month old and that we'd be pushing it to get downtown to the hospital before midday so the appointment was scheduled for 11:00. Then they emailed me this week and said we needed to come at 10:30 to fill out paperwork since it was our first visit with this doc and first visit in 6 months. Then another mom from the other side of town needed some supplies from somebody on our side of town (which is about 2 hours apart, depending on traffic) so I agreed to meet her in the parking garage at 10:15 for another covert medical supply drop. :) Even just saying, "Hey, let's meet on the 4th floor by the elevator at 10:15." makes me laugh. I was rather excited and proud of myself for making it there 5 minutes early, even though I had to stop for gas on the way. Maybe I'll survive this mom-of-5 thing after all...

Raya was still feeling a little bit blah and had taken a nap on the drive to the hospital. Piper was asleep too so I waited as long as I possibly could before I got them out of the car. It's always such a shame to wake sleeping children!

On the drive there before she fell asleep, Raya asked me at least 3 times if she would be getting pokes. I told her no every time and then said a silent prayer that there wouldn't end up being any reason to draw blood that day. She was a little crabby when I got her out of the car and into the stroller, but it was mostly anxiety-driven. She's no dummy and she knew exactly where we were, even though we weren't in the main parking garage or the main building that time. Once she sat down in that stroller, she didn't budge from it except when she got her weight & height and vitals taken. The only reason we got her to get out of the stroller for that is because we had the pleasant surprise of seeing one of our favorite medical assistants from the other clinic that we didn't know was working downtown. Raya knew her so she was willing to reluctantly do what she asked her to.

Unfortunately, that was not the case for the new doctor. I had a bit of anxiety about this appointment myself because we'd had such a good relationship with our previous neuro, and it's always scary having to start over with someone new. Thankfully, she was as wonderful as everyone told me she'd be so I breathed a HUGE sigh of relief after our appointment. She scored major brownie points with me by having actually read through the main highlights of Raya's chart & medical history before coming in to talk with us. She was already aware of the main things as well as some of the smaller neuro-related things, so I didn't have to start from the beginning and explain Raya's entire life to her. She looked over Raya's previous MRIs and we discussed the things she saw on them. We talked about Raya's sleep difficulties and her autonomic quirks and we made an adjustment to the one med that we get from neuro. Then she tried to examine Raya and just got a lot of this:
It's kind of sad but also really interesting to watch Raya in situations like this. I was having a very friendly conversation with the doctor, who was extremely personable and likeable, and made efforts to engage with Raya. At times, Raya would speak up and try to interject something into the conversation, but then as soon as our attention turned to her, she'd curl back up into the stroller. It was this huge internal conflict between knowing logically that if Mommy was friendly with this doctor, it was probably okay for her to be friendly with her too, and the anxiety she was clearly feeling. She was as cooperative as a kid can be for a neuro exam when they're curled up in a stroller, but she refused to get out of the stroller and walk so the doctor could watch her. To the doctor's credit, she was very sweet to Raya and didn't force the issue once we had asked her a few times to stand up and walk. I appreciated that she knew when to draw the line and give Raya her space, and I think that next time we see her, Raya will be more likely to cooperate because of that.

In the waiting room, there had been some volunteers handing out coloring books and paper brain hats for Brain Awareness Week. Raya wasn't at all interested in the hat while we were in the waiting room but she put it on when we got home. :) It's backwards, but whatever. :)

Wednesday afternoon kind of turned into a mess. Donny had a PT appointment, which was why he couldn't keep the baby at home for me during Raya's appointment. There was a bit of a...misunderstanding...or something like that, with Raya's respite provider and instead of coming at 1:30 like we had agreed on, she texted me a few minutes before that to let me know that she was babysitting for someone at church that was in the hospital and wouldn't be here until 2:30. She was doing it to help out someone in need, but it was still frustrating for me, especially since we had agreed on her coming from 1:30-3:30 and it was already her scheduled day to come watch Raya. Not to mention that I was tired & crabby by that point in the afternoon thanks to being up a couple times with the baby and taking both little girls to Raya's neuro appointment.

Thursday was another blissfully low-key day, aside from Piper's pediatrician appointment. Even that was pretty low-key except for the part where she blew out the front of her cute little outfit. How do babies even do that? They manage to shoot the poop out of the diaper all over their clothes and barely get any of it IN the diaper. I'm also starting to think that she hates her "Mommy Loves Me" shirt because she's managed to poop on it every time she's worn it.


It is very strange for me to go to a ped appointment and only hear positive things, leave in under an hour, not have to come back in a week or two for weight checks, not have referrals to specialists, and have the numbers on the scale actually go UP! This is not to say that everything is totally peachy with her, but we're off to a much better start than we were with the last 2. There are still some questions about her feeding issues and why she has them, (i.e. I'm still not 100% convinced that she doesn't have some degree of tongue & maybe lip tie that interferes with her sucking patterns) but for now I'm content with the fact that she's gaining weight at a good rate on just breastmilk. Having prepared myself mentally for much worse things and knowing that they're still possible, I'm just living in the moment and being happy with how everything is right now. I've been told that's pessimistic of me but I don't believe that. I think it's just living with my eyes open.

She has gained just over a pound since birth and since she started out a pound heavier than Raya & Kaida, she weighs more now than they both did at 2 months old. They both stayed in newborn size diapers & clothes until about 2 months, but we ran out of newborn diapers at 3 weeks with Piper so she switched to size 1 already. She's kind of in between the newborn & 0-3 month clothes right now. I have to consciously not allow myself to get sad about her growing out of the newborn clothes, but I'm happy that she's doing well. She's long & lean like the other kiddos. We talked about reflux meds but agreed that there are some other things I can try first before we go down that road. Believe it or not, I'm not a fan of giving medications to my kids if we don't absolutely have to, and I like to try other options first. Anyway, I'm making some dietary changes and we're trying a couple of other remedies, as well as trying some different bottles since she's still not nursing, and hopefully that will be enough to avoid the meds. Heck, I even agreed to start with Zantac rather than just jumping straight to Prevacid. Anyone that's familiar with reflux meds should understand that that means I'm being really conservative with treatment. :)

I think we're making progress already. As bad of a day as she had on Tuesday, that's how good her day was on Thursday. She slept a LOT more and seemed more comfortable overall.
She hardly ever lays in her bed. With 6 other people in the house, somebody is always holding her. The 3 big kids have learned how delightful it is to lay on the couch with a snuggly little baby on their chests so I catch them all doing that every time they get to hold her. She is very, very loved and most definitely belongs in our family.


Friday was Piper's 1 month birthday. Rather than allow myself to be sad about how quickly the last month has gone by, I finally felt good enough physically to get out all my gear and do a proper photo session with her. The weather was gorgeous that day so I set up on the front porch. Unfortunately, she did not feel like cooperating. She was being a pill. About half of the pictures look like this:
 I did finally get her to go to sleep though and she took a lovely little nap on the front porch while I ever-so-carefully took pictures of her. The neighbor girls riding by on their bikes thought I was slightly crazy.


I really didn't care though. I've done newborn pictures for SO many other people and really wasn't feeling good enough to do them when she was teeny tiny, so I really wanted to get some good ones before she doesn't look like a newborn at all anymore. Since she was having such a hard time being happy & sleeping for me, I didn't get to do all the things I had planned in my head but I did get some nice shots of her. I haven't edited very many yet but here are a couple of my favorites so far:

 


I also managed to pull off a halfway decent selfie with my big fat camera the other day. It's not perfect but I will treasure this picture. :)

And this one, just because it's so typical of our girls and it makes me laugh:


Saturday was a very sad day in our local community. An 11 year old boy with Down syndrome found a way out of his very well-fenced yard and passed away after falling in a canal. We knew his family around the time he and our oldest daughter were born and they are just flat out wonderful people. We've been blessed to be a part of many of the local events for those with Down syndrome and have gotten to know and love a lot of these families, and it is heartbreaking. Of course it's devastating for the family who lost their sweet boy, but it is also heartbreaking for all of their friends who love him so much, and whose kids have grown up together. It is terrifying to know that even parents who do everything right can still have tragedy befall them.

Today has been another relatively quiet day. We had planned on letting the kids camp out in the back yard last night but the wind kicked up right around dinner time so we couldn't put the tent up. I started to get a scratchy throat last night and sure enough, this morning I woke up feeling like crap from the shoulders up. And my back & legs ache. Hopefully whatever it is will pass quickly because I don't have the energy to be sick AND take care of everyone and everything. The girls have been swooning over Piper all day and then she snuggled up with Daddy to take a long afternoon nap, and I've been grateful to have other people to help with her today.

I did make Raya some pancakes of sorts today. I tell you what, cooking with primarily coconut ingredients and no eggs really stinks. She wanted pancakes. I've made many, many batches and used a tedious process of trial and error to find a decent recipe that she could eat. Then we had to stop feeding her eggs and that just blew it all to heck. After a failed attempt at cooking pancakes in the frying pan like normal, I ended up putting batter on parchment paper and baking them in the oven.
After about 10 minutes, they looked great. Until I peeled one off and realized it was still raw on the bottom, so I flipped them over and cooked them for another 10 minutes. Raya must have been REALLY looking forward to her pancakes because she was surprisingly patient through the whole process. They did actually turn out edible, which was really the only requirement at that point. With enough butter & syrup, they passed the Raya test. She ate 5 and asked for more!


Now it's time to figure out what to eat for dinner. That's hard to do when you don't feel like eating. I've kind of lost my appetite since Piper was born but hopefully it will come back soon, along with the energy to actually cook food.

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