It's New Year's eve, and we're staring 2012 in the face. This past year has been one of the biggest roller coasters of my life, and probably John's life, with plenty of shitty moments. But the year also had some positives, so it wasn't a complete loss.
I'll spare you all of the long, drawn out details - it's not necessary to post lengthy descriptions when the evidence is in my blog archive toward the bottom (so for my newer readers, feel free to click through past posts and check stuff out). I will, however, offer the "Campbell's Soup," or condensed version of things. So (drumroll, please), here is our 2011 Year in Review:
* Judith continued to thrive (even through that GBS infection), and was discharged from the NICU after a harrowing 9 week journey
* We survived our first RSV season without incident, and avoided illness the rest of that winter
* Judith was shuttled around to numerous specialists, and discharged from the majority of them
* We went to 2 NICU Developmental Clinics, and they caught the torticollis and developmental delays early, contacting Early Intervention for consults and services
* Judith has received EI services (PT) for the better part of the year, and it has done wonders to catch her up
* 3 sweat tests later, we got the firm diagnosis of Cystic Fibrosis, adding yet another crazy loop into our lives. We know she has the DF 508 mutation, but still don't know (and won't know until the lab panel is expanded again, and even then it's iffy) what the 2nd mutation is.
* Judith & I went to a bunch of amazing get togethers with my awesome mommy friends that I met online! It was fantastic to meet these ladies in person, and I can't wait for more GTGs in 2012!
* As we discovered early on, Judith likes to do things differently, off-track from what "normal" kids do. We're monitoring her eyes for the bad vision genes I managed to pass down to her, and discovered that, unlike most preemies that suffered from ROP, she's far-sighted and will need glasses much sooner than we expected. However, she dodged the bullet and avoided them all of this year, but I doubt she'll get much luckier with that in the upcoming year.
* Our 2 wonderful NEBTR rescues are getting older, and both celebrated their 6th birthdays. They still bring us lots of joy, provide us with tons of entertainment, and most importantly, they welcomed Judith into our family and are very protective of her.
* Despite everything stacked against her, Judith is thriving and developing, and has grown into an adorable toddler! I am amazed at her progress, and I can't wait to see how she continues to develop in 2012!
I am looking forward to some things in 2012:
* I can't wait to see how Judith will interact with everyone as she gains/improves upon her skills. She already loves the dogs, but I'm also excited to teach her how to interact with them respectfully, properly, and safely so she doesn't hurt them (or them, her).
* Judith will hit 22 lbs sometime in the upcoming months, and I am looking forward to having the conversation about getting The Vest to use for her daily CPT regime. It will help save our hands, and it will also make it easier in the long run for her to learn how to be independent with her treatments/do them herself (even though that's years away, but why not build the foundations early?).
* More GTGs and play dates with our friends!
I'd love to see surprises being kept to a minimum this year, and we can have a quieter year than 2011. Here's to hoping for a healthy, happy 2012!
Saturday, December 31, 2011
Wednesday, December 28, 2011
Christmas 2011 (lots of pictures included!)
I finally have some time to share our pictures from Christmas!
We had a great Christmas Eve - it was so nice having Judith home this year, and I was super excited to take some pics of her all decked out in her holiday finest!
We had a great Christmas Eve - it was so nice having Judith home this year, and I was super excited to take some pics of her all decked out in her holiday finest!
You can't make me smile.
nom nom nom!
Wait, you're not supposed to eat shoes?
I'm surprised at how well Judith did throughout the service, considering I took her to the middle (7:30) service, and that fell during her normal bedtime. She had a meltdown during the preludes because I wasn't around, but after I rang the bell piece I went back to her godfather and calmed her down. She was great for the rest of the night, and fell asleep right after communion.
Christmas Day we skipped out on services since we had Judith out so late Christmas Eve (we took 1 car to church to help save gas, and we didn't get home until a little after 1 - Judith did sleep at church though, so she wasn't completely off schedule). My grandparents came up in the morning to help me get Christmas dinner started, and they had fun playing with Judith:
Judith had fun with her great-grandparents, and also had fun sticking her hand in the dogs' water bowl and splashing around. That happened twice that day, and both times she soaked her cute Christmas jammies. Silly girl.
Anyway, after chowing down on an amazing dinner of ham, mashed potatoes, and green bean casserole, we opened presents:
Check out this big girl standing all by herself, no support!
Judith got so many awesome gifts! A bunch of stuffed animals were included, and now it seems the zoo is officially full. She also got some great onesies, a bunch of new books (including some Olivia books - I love it!), and some money for her savings account. She has so much stuff that's new, and she can't make up her mind what to play with at any given time haha!
John & I also got some great gifts. He got a Canon PowerShot (in a nice blue, close to Conrail blue haha!) so he can take pictures, and shoot some video that we can actually upload to the computer - his video camera is ancient, and we can't get the connector cables anymore, so it'll be nice to be able to post videos every now and then. He's also going to get some DVDs that he wants, along with some new music.
I am enjoying my early Christmas gift of a Canon 50mm f/1.8 lens for my camera (that's what I took all of these pictures with), and I got the Nintendo 3DS that I wanted, along with 2 games: Super Mario 3D Land and Mario Kart 7! The 3D part is what's taking the longest to get used to, and right now I have a very shallow depth set until my eyes adjust. I'm also enjoying the circle pad - it's a feature I've been looking forward to having on a handheld. I'm enjoying the games so far, and I can't wait for the new Animal Crossing and Paper Mario to finally be released!
We're thankful that we had such a great and semi-relaxing holiday this year!
Tuesday, December 27, 2011
Sinus Infection
This is but the latest diagnosis in the string of things Judith has had wrong in the last month. I wish my poor toddler would just be healthy for a full month. I'm really beginning to hate winter.
That cough that's been lingering for the last month or so came back full-force this weekend. She was coughing a bit Christmas Day, but by yesterday it was sounding wetter. Overnight, she was so congested, and the cough was so wet sounding that we decided not to wait and called the pediatrician.
The whole day was one giant cluster eff: Judith's regular pediatrician was out of the office today, so we saw a different one - I was nervous about this, because we haven't seen anyone else, but he was truly awesome and had a good idea about everything (so I won't hesitate to request him again if Judith's regular doc isn't available!). Then I tried calling Hershey to see what the pulmonologist would want us to do, and neither he or the nurse coordinator were there. Cue some very minor frustration for me, but I knew we'd get through everything (albeit slowly).
The pediatrician looked Judith over, removed some wax from her ear, and diagnosed her with the sinus infection. Thank goodness her lungs sounded relatively good, and the infection hasn't moved to her lower respiratory area! We were at the office for a good hour: that included the exam, the call to Hershey to set up a course of treatment, and figuring out which pharmacies in the area would carry the antibiotic we need to give Judith.
After the appointment, I had to drive to a different pharmacy than the one we normally use to pick up the antibiotic. I really was not thrilled with them, and it took them twice as long to fill it as it would have at CVS. Top it off with the cold rain that decided to start, and I wasn't in the best of moods. At least we got it though, and hopefully it'll do the trick.
So in addition to the antibiotic twice a day, we have to increase her inhaled meds and her CPT to 5 times a day. Yep, that's right: 5 times of manual CPT for the next 10 days. Trust me: I'll do whatever necessary to prevent the infection from developing elsewhere in her lungs, but it would be so much easier to do this with the vest (Judith has 4.5 lbs to go until she reaches the minimum weight, so hopefully we can start talking about that soon). Hopefully Judith will start to feel better in the next day or 2, and we can wave goodbye to this crap for a while.
That cough that's been lingering for the last month or so came back full-force this weekend. She was coughing a bit Christmas Day, but by yesterday it was sounding wetter. Overnight, she was so congested, and the cough was so wet sounding that we decided not to wait and called the pediatrician.
The whole day was one giant cluster eff: Judith's regular pediatrician was out of the office today, so we saw a different one - I was nervous about this, because we haven't seen anyone else, but he was truly awesome and had a good idea about everything (so I won't hesitate to request him again if Judith's regular doc isn't available!). Then I tried calling Hershey to see what the pulmonologist would want us to do, and neither he or the nurse coordinator were there. Cue some very minor frustration for me, but I knew we'd get through everything (albeit slowly).
The pediatrician looked Judith over, removed some wax from her ear, and diagnosed her with the sinus infection. Thank goodness her lungs sounded relatively good, and the infection hasn't moved to her lower respiratory area! We were at the office for a good hour: that included the exam, the call to Hershey to set up a course of treatment, and figuring out which pharmacies in the area would carry the antibiotic we need to give Judith.
After the appointment, I had to drive to a different pharmacy than the one we normally use to pick up the antibiotic. I really was not thrilled with them, and it took them twice as long to fill it as it would have at CVS. Top it off with the cold rain that decided to start, and I wasn't in the best of moods. At least we got it though, and hopefully it'll do the trick.
So in addition to the antibiotic twice a day, we have to increase her inhaled meds and her CPT to 5 times a day. Yep, that's right: 5 times of manual CPT for the next 10 days. Trust me: I'll do whatever necessary to prevent the infection from developing elsewhere in her lungs, but it would be so much easier to do this with the vest (Judith has 4.5 lbs to go until she reaches the minimum weight, so hopefully we can start talking about that soon). Hopefully Judith will start to feel better in the next day or 2, and we can wave goodbye to this crap for a while.
Saturday, December 24, 2011
It's A Christmas Eve Update!
I know I haven't been around much in the last week. Things have been a little busy with rehearsals and getting things ready for Christmas. My birthday was on Sunday, and I've been enjoying my gifts! I got a new winter coat from my parents, and bought a new camera lens plus all 7 Harry Potter books with the money from my in-laws (well, part of that was Christmas money too, so I treated myself early!). So between taking pictures with my new lens, taking care of Judith and the dogs, and burying my nose in books, I lost track of time and forgot to post!
I have to say that I've been enjoying the Harry Potter books immensely! Believe it or not, I never read them before now (I was kind of bucking the trend for quite a while), and in retrospect that was one of the dumbest things I've done. Thanks to many of my awesome mommy friends constantly talking about the books and movies, I finally caved and began reading them. I'm hooked! I'm getting ready to start the 4th book, and can't wait to get the movies with the rest of my birthday money! I'm still kicking myself a bit for not reading these sooner (I had a major "WTF self?!" moment after reading the first chapter in book 1), but I'm glad that I'm remedying the error of my ways now! Hopefully once Judith gets older, she'll decide to read the books herself, and will enjoy them as much as I am enjoying them!
One source of frustration this week has been with the sippy cup. When Judith was sick last week, we didn't force the sippy on her as much and just gave her the bottle - that way she could use her energy to fight off the virus rather than burn the calories fussing about the sippy. As a result, we had some minor regression. So this week I was working with her to get her back to where she was. She was only taking maybe an ounce or 2 at a time from the straw sippy, and I kept second-guessing our decision to keep working on transitioning/dropping bottles (as a side note, it's not the sucking part that she's having problems with - she can get liquid through the straw fine. It's the intake that was concerning me). For some odd reason, I decided to give the soft spout sippy another try, and the little stinker took to that right away! The past couple of days, she's downed at least 2-3 ounces with each meal. Talk about easing up on the frustration! I'm thrilled that she likes it, and while shopping with my mom yesterday we picked up 2 more cups - 10 oz size this time, so we can fit an entire can of Pediasure in it.
We also had a surprise this week: remember when I mentioned before about Judith getting ready to cut one of her upper teeth? The one right beside the upper front left tooth? Well, it cut through, and the surprise part is the tooth in the same spot, but on the right side also cut at the same time! When I felt/looked at her gums, that tooth definitely did not feel like it was anywhere close to emerging, but after a quick swipe I noticed it was there! Her total tooth count is 5, and the final upper front tooth feels like it will come through in the next week or 2.
I am getting excited for tomorrow! I know Judith probably won't be super enthusiastic about Christmas this year, but I can't wait to see her open her presents! This year is a far cry from Christmas last year, and John & I are grateful that we can celebrate Christmas at home with our beautiful little girl.
John, Judith, Buster, Lady, & I would like to wish all of you a very Merry Christmas and a joyous holiday season!
I have to say that I've been enjoying the Harry Potter books immensely! Believe it or not, I never read them before now (I was kind of bucking the trend for quite a while), and in retrospect that was one of the dumbest things I've done. Thanks to many of my awesome mommy friends constantly talking about the books and movies, I finally caved and began reading them. I'm hooked! I'm getting ready to start the 4th book, and can't wait to get the movies with the rest of my birthday money! I'm still kicking myself a bit for not reading these sooner (I had a major "WTF self?!" moment after reading the first chapter in book 1), but I'm glad that I'm remedying the error of my ways now! Hopefully once Judith gets older, she'll decide to read the books herself, and will enjoy them as much as I am enjoying them!
One source of frustration this week has been with the sippy cup. When Judith was sick last week, we didn't force the sippy on her as much and just gave her the bottle - that way she could use her energy to fight off the virus rather than burn the calories fussing about the sippy. As a result, we had some minor regression. So this week I was working with her to get her back to where she was. She was only taking maybe an ounce or 2 at a time from the straw sippy, and I kept second-guessing our decision to keep working on transitioning/dropping bottles (as a side note, it's not the sucking part that she's having problems with - she can get liquid through the straw fine. It's the intake that was concerning me). For some odd reason, I decided to give the soft spout sippy another try, and the little stinker took to that right away! The past couple of days, she's downed at least 2-3 ounces with each meal. Talk about easing up on the frustration! I'm thrilled that she likes it, and while shopping with my mom yesterday we picked up 2 more cups - 10 oz size this time, so we can fit an entire can of Pediasure in it.
We also had a surprise this week: remember when I mentioned before about Judith getting ready to cut one of her upper teeth? The one right beside the upper front left tooth? Well, it cut through, and the surprise part is the tooth in the same spot, but on the right side also cut at the same time! When I felt/looked at her gums, that tooth definitely did not feel like it was anywhere close to emerging, but after a quick swipe I noticed it was there! Her total tooth count is 5, and the final upper front tooth feels like it will come through in the next week or 2.
I am getting excited for tomorrow! I know Judith probably won't be super enthusiastic about Christmas this year, but I can't wait to see her open her presents! This year is a far cry from Christmas last year, and John & I are grateful that we can celebrate Christmas at home with our beautiful little girl.
John, Judith, Buster, Lady, & I would like to wish all of you a very Merry Christmas and a joyous holiday season!
Saturday, December 17, 2011
Dogs
Our two lovely BTs are very well fed these days. Not that they didn't eat well before, but the extra handouts are definitely a regular occurrence anymore.
Judith has figured out how to feed the dogs, and I have to be extra careful what I give her now so I can be sure Buster & Lady don't eat something that could be poisonous/toxic. I knew this day was coming. Judith actually looks for them, will hold something out and babble or laugh at them, then proceed to eat it herself. I'm not wild about her teasing them, and try redirecting her. After a couple rounds of this game, she proceeds to either throw food over the side of the high chair to the floor (Buster's always first in line for handouts - he's such a foodie), or will hold the food and dangle her hand over the side where the dogs lick the food out of her grasp.
She thinks this is the most hilarious thing in the world.
I'm just glad she's feeling better and is back to her normal antics.
Judith has figured out how to feed the dogs, and I have to be extra careful what I give her now so I can be sure Buster & Lady don't eat something that could be poisonous/toxic. I knew this day was coming. Judith actually looks for them, will hold something out and babble or laugh at them, then proceed to eat it herself. I'm not wild about her teasing them, and try redirecting her. After a couple rounds of this game, she proceeds to either throw food over the side of the high chair to the floor (Buster's always first in line for handouts - he's such a foodie), or will hold the food and dangle her hand over the side where the dogs lick the food out of her grasp.
She thinks this is the most hilarious thing in the world.
I'm just glad she's feeling better and is back to her normal antics.
Thursday, December 15, 2011
Update
It's been an interesting past couple of days.
I worked yesterday, so my mom came up to watch Judith (John also had a day off, but went to the church most of the day to get ready for Christmas services and whatnot). She threw up everything she had that morning, and still wasn't herself. So by the afternoon, I decided to take her to her pedi and get checked out.
Everything was generally looking ok, except she had a fever and her lungs sounded a little crackly when she was laying down. Her doc said she more than likely was fighting off a virus, and took a swab of her nose to check for bigger problems (like RSV, flu, etc.).
Today her fever seemed to be breaking (yay!), but she started to get the squirts, and they were really mucousy. I put a call in to her pulmonologist to make sure it wasn't antibiotic related, and he also said it sounds like a virus, so we could stop the antibiotics since she already had 2 rounds prior to this. This afternoon, I got the call from the pedi that Judith's nasal swab was negative for more major viruses (another yay!). So we could still be looking at a cold, or she may have picked up a rotavirus infection. Whatever it is, it seems to be working itself out of her system, and I hope she'll be in better shape by this weekend. In the meantime, we'll keep doing her CPT 3-4 times a day as needed, and we increased her Albuterol to help keep her airways open - hopefully that will prevent anything bad from setting up shop in her lungs!
I worked yesterday, so my mom came up to watch Judith (John also had a day off, but went to the church most of the day to get ready for Christmas services and whatnot). She threw up everything she had that morning, and still wasn't herself. So by the afternoon, I decided to take her to her pedi and get checked out.
Everything was generally looking ok, except she had a fever and her lungs sounded a little crackly when she was laying down. Her doc said she more than likely was fighting off a virus, and took a swab of her nose to check for bigger problems (like RSV, flu, etc.).
Today her fever seemed to be breaking (yay!), but she started to get the squirts, and they were really mucousy. I put a call in to her pulmonologist to make sure it wasn't antibiotic related, and he also said it sounds like a virus, so we could stop the antibiotics since she already had 2 rounds prior to this. This afternoon, I got the call from the pedi that Judith's nasal swab was negative for more major viruses (another yay!). So we could still be looking at a cold, or she may have picked up a rotavirus infection. Whatever it is, it seems to be working itself out of her system, and I hope she'll be in better shape by this weekend. In the meantime, we'll keep doing her CPT 3-4 times a day as needed, and we increased her Albuterol to help keep her airways open - hopefully that will prevent anything bad from setting up shop in her lungs!
Tuesday, December 13, 2011
Sharing
We're learning to share in our house this week! /sarcasm
It's official: Judith caught the cold that John & I have. ::sigh:: This isn't unexpected, but the timing is what threw me for a loop.
She was a little more "off" today, but I was chalking it up to the possible growth spurt. I kind of brushed off some of the other signs, because they're so typical for a Tuesday around here: disinterest in her lunch, wanting Pediasure more than the food, fussy before therapy, etc. She was fussy during therapy today, and she hasn't been that way for a while - normally she's fussy at the end because she wants a nap after all of that work. Today, though, I put her on my lap and she snuggled into me and noticed her forehead felt warm. As soon as we finished up, I headed upstairs (like normal - she'll usually take a good nap when she's done) and took her temp.
100.2
Crap.
I put a call in to the clinic and talked to the nurse coordinator about what we should do. She took a record of everything I noticed (Judith's temp, symptoms, that sort of stuff) and passed it on to the doctor. She called back after a bit and said that the doc would phone in a prescription for another antibiotic, and that it sounds like Judith has another virus she's fighting off. She also told me that we could take Judith to her regular pedi to get checked out if it would make us feel better, and I asked if we could wait a day or 2 since we were starting the antibiotics. Thankfully she said that would be ok, but also gave us some signs to look for that would indicate Judith was getting sicker.
So now we're on round 3 of antibiotics (bactrum again), we're increasing CPT, and we're to give her Tylenol to help with the fever. Currently, Judith is sleeping off whatever is invading her system. While it's nice to have some quite time, I'd rather have it because she's healthy and it's bedtime.
I have a feeling it's going to be a long winter...
It's official: Judith caught the cold that John & I have. ::sigh:: This isn't unexpected, but the timing is what threw me for a loop.
She was a little more "off" today, but I was chalking it up to the possible growth spurt. I kind of brushed off some of the other signs, because they're so typical for a Tuesday around here: disinterest in her lunch, wanting Pediasure more than the food, fussy before therapy, etc. She was fussy during therapy today, and she hasn't been that way for a while - normally she's fussy at the end because she wants a nap after all of that work. Today, though, I put her on my lap and she snuggled into me and noticed her forehead felt warm. As soon as we finished up, I headed upstairs (like normal - she'll usually take a good nap when she's done) and took her temp.
100.2
Crap.
I put a call in to the clinic and talked to the nurse coordinator about what we should do. She took a record of everything I noticed (Judith's temp, symptoms, that sort of stuff) and passed it on to the doctor. She called back after a bit and said that the doc would phone in a prescription for another antibiotic, and that it sounds like Judith has another virus she's fighting off. She also told me that we could take Judith to her regular pedi to get checked out if it would make us feel better, and I asked if we could wait a day or 2 since we were starting the antibiotics. Thankfully she said that would be ok, but also gave us some signs to look for that would indicate Judith was getting sicker.
So now we're on round 3 of antibiotics (bactrum again), we're increasing CPT, and we're to give her Tylenol to help with the fever. Currently, Judith is sleeping off whatever is invading her system. While it's nice to have some quite time, I'd rather have it because she's healthy and it's bedtime.
I have a feeling it's going to be a long winter...
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