Today marks what would be my little sister's 22nd birthday. In other words her "Golden Birthday". I know I talk a lot about her on this blog, so this time I'll just share a revamped version of the picture slideshow Steve and I did a few years ago, with new pictures added. *Please keep in mind that cameras were not great back then, and we did the best we could with what we had...
Still would like to use more pictures that we've found to fill in the holes. As well as "clean-up" the ones we have already and do some better editing.
Balloon Emarie and I got for aunt Breanne, that sadly was gone the next day :( All the surrounding graves still had all their stuff, so I know it wasn't the grounds keepers. Never understood how someone could take something off of a four year old's grave.... especially with her beautiful picture looking right at you as you do.
February is kind of a hard month. I didn't post earlier on this, but I wanted to share this video in honor of my cousin Brooks's 9th "Angel Day" (Thanks to Camille for a nicer name for this day)
One of the hardest things I ever had to do was go through these videos just days after the accident. A good friend of my aunt and uncle is who made this video, and what an amazing gift it was.
And if you don't know by now.... change the view from 320p to 720 HD and full screen for best viewing!
I never really liked Valentine's Day growing up. When I was younger, it was a day of embarrassment.... you know? Wanting to give a Valentine to somebody you had a crush on without risking rejection or humiliation! In high school it was even worse, because even if you had a boyfriend... well, let's just say that high school boys are not always smart at remembering or doing things right!
Thanks to my husband though, he changed my feelings on the day. He has always been good to spoil and surprise me each year :) And it isn't always elaborate, but it is always special (like last year)!
But this year he did not fail to impress, and I have to say, it was a bit elaborate :)
He had asked a few weeks ago if he thought I could get a babysitter for Em on V-day, which was a bit surprising since we don't usually like to go out on Valentine's because it's always crazy! But he assured me that it was already taken care of and we wouldn't have to worry about a long wait..... hmmm. The next day he told me that he'd made arrangements for Em and that I would have to wait for the day to find out what we were doing..... A few days before though, I at least asked him what I should wear, since a girl's got to be prepared! He told me that I should probably dress nice like I was going to a wedding reception.... I guess I should have seen this as a hint, but I didn't!
So, finally the day came, and I had worked tirelessly ;) to put this together the night before
Trail of hearts outside the bedroom door (first thing he saw when he got up that morning)
Leading all the way to the table where his present sat... it was a new iPod dock/clock radio since our old one is now "slow" (at least 9 mins slow!) and won't charge the newer iPods
I cut out 8 hearts to represent the amount of Valentine's Steve and I have shared as a married couple. I also wrote on each eight reasons that I love him.... of course I love him for a million and one, but this was fun! And no, this isn't something I found on Pinterest, but something I thought up all by myself that night when I looked at all the wrapping paper I would be throwing away ;)
I also made breakfast that morning, cinnamon roll pancakes, source here (though my modification would be to add 1-2 tablespoons of milk to the cinnamon mixture if you don't want to explode your poor honey bear trying to squeeze it out!) and bacon! It was pretty good! Oh yeah, and I also finally defrosted the ice maker that night (hadn't done it since the power had been cut on our fridge while we were in Sedona), and trust me this was a good gift!
And then we went about our regular weekly schedule, school, work, etc. And after we returned home, I commenced getting ready, and while that was happening Steve informed me that I was getting some FB notifications and brought the phone into me.... and I saw this:
With the caption, "How do you feel about prime rib and shrimp cocktail?"
This dinner was held at a reception center in Payson.... so that's why there was need for dressing like going to a wedding ;) The grounds were gorgeous, just wish it had been light enough to get some pictures.... next time though! ;) The food was to die for! And we met some nice people! That was actually the funny part- when we got there and sat at our table (we were a little early), Steve was realizing we'd have to share a table with people we didn't know (they were set for 8, so 4 couples).... those of you that don't know him real well... well, he's a little shy, quite the opposite of me! But hey, you know what they say? Opposites attract! But we did have fun getting to know the other couples we sat with and it was an all around pleasant evening! The 12 year old boy playing the piano was a wonder! He normally plays for the Chef's Table in Orem and will be touring in Europe in the summer..... WOW!
Picture of us at dinner.... not the best, but that's what happens when you take a self picture!
It was a five course dinner- first a really good salad and rolls, then shrimp cocktail, then the 2 course entree, raspberry chicken and prime rib with glazed baby carrots and garlic mashed potatoes. And of course an amazing dessert plate! 4 different desserts to share with your love.... most of which I don't know the name of! Too much to finish, so we were able to bring it home and we're still working on the tuxedo cake with chocolate gnash!
This cake started out huge!
When we came home, we finished off the night watching the latest in the Twilight saga, Breaking Dawn.... part 1 (Steve was thrilled ;) It was a wonderfully perfect evening! Thanks to Steve's brother Cory for watching Em for us!
Ah and Em, I should also mention that she as well makes Valentine's a lot more fun for me! We had a lot of fun making her Valentine's for school this year thanks to Pinterest!
Though I did opt to do them a little differently since the ones shown on Pinterest were 4x6 prints and I thought that might look a bit tacky for her to take Valentines that would about 3x's the size of her classmates! So I used the photo site from Walmart and chose their kid's valentine cut aparts and ended up paying $0.28 for 3.... not much more than your run of the mill box of Valentine's you'd get from the store, and SOo much cuter! What do you think?
I sure know one little guy really loved them!
Yup, that would be Em's alleged boyfriend, "J". He almost gave her her first kiss that day too! And his mom assured me that she's all he talks about and even says he loves her.... ah, puppy love ;) Gotta admit, didn't expect this for my girl.... at least not yet! But he is a cutie, just might have to talk with him about kissing!
Here's a few more pictures from Em's Valentine party at school
Giving her Valentine gift to one of her teachers, Miss Kirsten. Em picked out these darling boxes of chocolate truffles herself!
My cute love bug all ready for her portfolio picture!
Em with a few of the girlies she's really good friends with (all of them entered preschool around the same time last year and stayed in the same class.... it's been good for all of them!).
Em getting ready to receive some Valentines!
At home, before Steve and I left to go out, we gave Em her Valentine gift.... which was some furniture for her dollhouse she got from my dad for Christmas! And boy, the look on her face when I brought them out of their hiding place was just priceless! Wish I'd gotten a picture... but we got pictures later that night before we put her to bed :)
Full dollhouse now! I was able to score the kitchen with Em's birthday money from my grandpa and grandma Wilde.... then she got the bathroom, parent's room and nursery for Valentine's (we're still on the hunt for the Family Room, so if you see one let me know please!), but you gotta have furniture for a dollhouse, right?! Especially for teaching some very important skills! We play with it together everyday, embedding vocabulary, play skills, and life skills while we do! I bet Em is so glad to have a developmental specialist as her mom ;)
I should also mention that she kinda, maybe got this for Valentine's day as well.... wasn't really meant to be a Valentine present, but it came in the mail on V-Day, and isn't it SOo cute?? For those of you who don't know, it is a cuter version of the infinity backpack for her g-tube gear- so it holds the bag of formula, the pump and all the tubing, and is so much more stylish than the ones you can get through the insurance! If you want one, go here to their facebook page :)
And Thursday night her grandma (Steve's mom) embroidered her name on it while she watched her for us so we could go to our photography class (more on that later)!
Isn't she awesome?? She watches our kid for us AND embroiders the backpack, and she even modified a cuter pillowcase for her wedge! Thanks grandma Peters!
And just for fun, here's a little timeline of Em on all the Valentine's that she's been around for :)
2008
A little less than 2 months old
2009
Just shy of 14 months
2010
2 years
2011
3 years
And 2012
4 years (yes that is the same shirt and shoes from last year, new skirt though! Gotta take advantage when your child doesn't grow like others!)
The first week or so in February was filled with catch-up and follow-up appointments for miss Emarie. After all the scariness that followed her recent surgery, I wanted to make sure we were doing everything we could to one, figure out what it was, and two, make sure we don't see it happen again!
Number one on the list was to see her GI specialist, and actually when I talked with them, they thought it would be best for her to have an appointment with the whole dysphagia team. This includes her GI doctor (Dr. Molly O'Gorman), her dietician (Sharlene Coombs NP), and various other OT and speech therapists as well. It's standard for them to do an accurate weight (in other words, naked), and all other measurements to compare her growth. So since we had to strip her down to nothing... she got a hospital gown.... and well, I could have sworn that a children's hospital should have a gown that would come close to fitting her, but well, I was wrong!
Yeah, she looked at me like, "really mom.... really?" It was pretty funny, couldn't stop laughing!
Her stats as it stands:
Weight: 30.6 lbs, 17th percentile
Height: 38", 13th percentile
Head.... well let's just say that still isn't on the charts and probably never will be!
Last year was the first time we'd seen anything on the charts for her! But sadly, she's stayed close to the same in weight since then:
3 year stats:
Weight: 29.5 lbs, 41st percentile!
Height: 35.25", 16th percentile
yeah, this is when she was seen as overweight for the first time ever and we were (for the first time ever) allowed to back off on her calories!
So, it seems she is keeping the same trend. That is to stay the same for a really long time, then grow a whole bunch really fast, and then stay the same again.... pretty common among 18q- kids, and those with growth deficiencies as well. Just wish her dietician would understand this!
We got some referrals to go to an eating clinic though which I was excited about! This girl is finally showing an interest in eating but now because she's not in PEIP anymore, she does not receive any sort of feeding therapy. And she's all done with her cleft surgeries, so we are really wanting to move forward from getting her off a feeding tube! Also got a referral for an allergist.... read on for the reasoning for this.
They also drew some labs at this appointment.... poor kid! After the many, many, many blood draws she endured in the hospital (6 in 2 days, plus 4 IV's placed in that time as well!), she had to do it just a week later! But, she didn't even flinch! Love that about her.... sad as it is, that a four year old finds it so routine, I still am so lucky to have a kid that holds still and gives me the hug afterward!
As of today, we got those results back.... and they weren't what I expected..... at all! The first I was told about was her vitamin levels, which they have been very concerned over in the past! I have been working very hard to keep those vitamins up, and it has payed off! The dietician was especially proud of her vitamin D levels since that is most commonly deficient in most children these days. I had them check her hemoglobin again as well since if there is a problem of her consistently loosing blood, then that should have showed as declining since we left the hospital. But alas, it's the same as it was the last they checked in the hospital.... which is great! But that means we still have no answers to all that went wrong so many weeks ago :/ The surprise however came in her allergy levels.
It's routine to check these every year when you have a child with severe allergies (meaning anaphylaxis to anything). Last we checked, her egg whites were higher than anything (in the 40 range), close second was milk (in the 30 range), with egg yolks at about a 12. And soy at a 5.5. Anything over a 5 is considered a pretty significant allergy and should be excluded from the diet. She also showed slight inclines in a few things, including peanuts, wheat and a few others, but nothing to warrant concern, just something they would watch to make sure it didn't ever go higher.
New levels have most things declining or not scaled at all...... most, but not all. The egg whites has been cut to less than half of what it use to be (which remember this use to be the highest!), and yolks went down as well.... not as much, but it was lower to begin with. So, that means that more than likely she will outgrow her egg allergy all together! And at this point, we don't have to have a panic attack if she is to come in contact with it, it shouldn't cause anaphylaxis anyway..... milk on the other hand, is a completely other story. Milk more than tripled. Which means we have dim hope that she will outgrow it :( This news baffled her dietician who said of both milk and eggs, milk should be the more likely to outgrow..... she is still getting to know how my kid is though.... she is always the exception to everything. They are likening her levels to milk as to what most people are who are allergic to peanuts..... that. is. scary. This has me so anxious. It is no wonder that she reacts just from touching it. Epipens will be with her at all times.... no exceptions. And anyone who is responsible for her care ever, will know how to administer an injection for her.... no exceptions there either.
We will continue to check though.... every year and we will hope, but we won't expect.
Anyway, enough of that. She also had her four year appointment (a little late I know, but things were busy in December, and even busier in January!). Not much different in her stats from the week previous, so that went well.
The common trend though, is that all of her doctors are impressed with her progress! Anyway, we'll continue to have many other clinic and specialist appointments in the following months! Busy life that we lead! ;)
I should also mention that we decided to take Em back to school before her follow-up from her surgery (which will be on the 28th of this month). We figured she'd already missed so much, since she hasn't been since before Christmas break and if her teacher Miss Jamie wasn't comfortable with having her back while still in her wheelchair and wedge... well then no one would! Her son actually goes through a lot of orthopedic surgeries as well. So she is happy and back at school :)
*Play song, "Keep Breathing" with this post- not the song I wanted, but the song that I deemed worthy to this week they did not have. If you're wondering what song that is, it's "Battle Cry" by Kyler England
I have come to realize that life just isn't right for the Peters unless there's drama.... itty-gritty, dirty drama. I just wish it didn't affect the littlest of us so often.
My daughter is amazing.
Again and again and again I watch her come on top of these things that would literally cause me to crawl in a hole and never come back. How did I get so blessed to be her mother, let alone just witness these miracles time and time again?
Nothing is ever routine for her, nothing is ever ordinary.... yet, she is extraordinary. I just wish sometimes that I could do it for her, yet I know she takes it on much better than I could ever dream to if it were me. I just wish I could try.... even if it killed me, I would do it.
This wasn't the surgery... no that went perfectly and she is healing nicely. She went off narcotics while we were still in the hospital, around 5 days after her surgery. Don't think I could do that after a hip surgery! The drama of this week comes in something we've had to deal with on and on... and on again and still with no answers as to why.
But I'll start off where I left on the last post, and like I said that first night went pretty well. The only thing was that Emarie woke frequently, not necessarily due to pain, but really I don't know.... if the girl ever felt pain from the surgery, she didn't show it. No, mostly she woke because she couldn't get comfortable. You see, when there's a very large foam block strapped between your legs, I can only imagine it makes it hard to move around.
This was taken at 4:25 am, thank goodness for that iPhone!
That morning (Thursday), daddy had to go to work, so Em and I both got what little more sleep we could and later that afternoon the physical therapist came in with a wheelchair and instructions for how often Emarie needed to sit up a day.
This is pretty much how it went that day.... don't get me wrong, she didn't complain and no, she's not asleep here. What she did was make a tent with her blanket and sort of put her head underneath to watch a movie on my iPod. I just think it was rather tiring for her, and unfortunately when we put her back in the bed, we'd discovered that she'd been bleeding from one of her incisions :( This was only about 20 minutes.
Next day (Friday) went much better and she stayed in the chair for over an hour!
Later that day the therapist brought in the chair that we would be taking home for about a month.
This is a picture I captured of Em taking a nap that day
She is sleeping with her eyes open.... she does this every once and awhile and it really creeps me out.... even though I love her to pieces!!
Steve and I both spend the night at the hospital when Emarie is here. Due to all the things that have gone "wrong" in times past, there just is no way we could sleep comfortably an hour away just in case. But, if I had a dollar for every time someone was concerned (for lack of a better word) about the fact that we were both spending the night.... well, I'd have a lot of dollars ;) Just to give you a clue, here's a conversation I had with the tech the very first night:
Tech: As he's looking at me with the most confused look! "You... you're both sleeping.... h-here?"
Me: "Yes we are"
Tech: "You know.... you know....y-you can only have one.... uh, bed... uh I mean sleeper, r-right?"
Me: "Yes we know that.... it's not our first time" ;)
Tech: "They.... they only fit one person-n"
Me: "Wanna bet??.... No, just kidding, settle down! We know how to do this, we take turns, one sleeps on the, uh, "bed" while the other takes the chair... until it's just too hard to bear it any longer... and then we switch! See everyone's happy!"
Tech: "Well.... I d-don't really know what to... to... do" and then after a very long and puzzled pause... "How many.... like how many blankets and uh... pillows should I bring?"
Me: "I promise this isn't that hard, there's only 2 of us. We'd both like 2 pillows and probably 3 blankets total will be enough"
Tech: "So 2 pillows?"
Me: "No, 4 pillows"using my fingers as well here
Tech: "Ok, I'll be back"
15 minutes later, he brings us 5 blankets, 2 sets of sheets and about 10 pillows.... I just smiled and said, "Thank you, that will be all for tonight"
See what we deal with?? Can't even tell you how many times people ask who's watching our other kids too!
Anyway, so like I mentioned, Steve and I switched off in the pull-out bed, and he may be able to sleep somewhat in a chair... but for me it's absolute torture to even try! So I killed a lot of time facebooking, pinteresting and blogstalking ;).... and I guess making up words apparently!
But Friday evening, I had to take a moment, a moment because I heard the unmistakable sounds of a life-flight helicopter landing, a helicopter that was unmistakably carrying a child because it was coming to Primary. I cannot tell you what it does to me to hear or see one of these. Same thing with an ambulance, or even someone wearing the "life-flight" insignia. I took that moment to pray for that child.... for their strength, for their courage and their comfort. I also prayed for this child's parents, because they need prayers just as much for all of these things. I cannot ignore how close I've come to sending my child in one of these. Cannot also ignore how close my sister came to riding in one of these over 17 years ago, but sadly they didn't get there in time. It's enough to make anyone's heart stop when they hear that sound. I also could not ignore taking time to be grateful in that moment. How lucky we are each time we take Emarie home from there. That hospital is filled with children fighting battles, the weight of which should not have to be carried on such young shoulders. My daughter I do include in this category, but I also know there are parents here that are constantly faced with terrible decisions. Decisions of ending life support... of hearing doctors tell them there's nothing else they can do for their child's cancer.... and then those tiny little babies that are born much, much too early. The staff at Primary are amazing, and we are constantly indebted to them. One of the best is making sure the time a child spends there is the best it can be.... even if that's all they have left to do.
Yes, I am blessed every time I take her home..... each and every time.
So, coming back. As you can imagine, switching off sleeping would have the tendency to make 2 poor parents very tired! So, sleeping during the day was pretty much a daily occurrence. On Saturday, at one such time of Steve being asleep, and Emarie was asleep as well... so, I got bored. This was also the day of pretty much the only snow storm Utah has seen. So what did I do? I took the camera and went all over Primary, U of U hospital and took some very random pictures... here's just a few
Outside and it was still snowing!
I can't believe I've never caught a picture of Em's favorite elevator here! This is on the outpatient side (she doesn't ride the one by the main entrance very often) and she gets so excited when this is the one who's doors open to her!
Yeah, this was just a nerdy attempt to capture her surgeons name plate.... yeah, don't ask!
After I got back from my photography excursion... the two sleeping beauties awoke and we got ready to put Em in her chair again to see if we could maybe get away with taking a walk... and without cords! She had no IV at this point (they had taken it out earlier that day since it was going bad), so the only thing left was her oxygen and well, this was getting on to be too long for her needing it after a surgery... but when we tried it off, it didn't go so well.... but we didn't let it stop us and we took Em out of her room for the first time that stay!
Fyi, she had to take her balloon with her everywhere she went!
This is also when we had our first and only (mostly due to the inclement weather) visitor! A friend that we subsequently met here almost a year ago. I talked about it in this post. Not sure why we didn't document her being here (meaning I don't have any pictures of her)... but she did take this picture for us!
Unfortunately there were more people in the playroom than I'd ever seen! I'm sure this picture was very hard to take! But thanks for coming Kelly! And thanks for the picture!
Little miss found her favorite thing at the moment! A piano!
Really starting to think she might have some talent here too!
I took this picture after we got back to show how badly Emarie has been scratching herself! Just to paint an even bigger picture, she pulled out an IV, nearly pulled out her epidural and tore up and ripped off countless bandages on her incisions!
Sadly enough, it actually got a lot worse than this... I really need to take another picture!
We had been told that day (Saturday) that we would likely go home the next day (Sunday).... though I'm never convinced until I see the discharge papers! But sadly that evening is when everything took a turn for the worst.
I had begun to notice Em's belly being swollen on Friday. Doctors assured me that it looked normal, but I still suggested maybe adding some meds that would help, Miralax (which she should have been getting everyday anyway) and eventually a suppository. But that evening (Saturday) I had a bad feeling I couldn't shake, and around 2 am, those worries were confirmed when Em threw up. I wish I had paid more attention to what was in the first round of vomit, but I do remember it didn't look "normal". But, we got her cleaned up and she was already falling asleep again, so we all went back to sleep after that. 4:26, she vomited again, and this time there was no mistaking, there was definitely blood in it. Also, this such instance with her swollen abdomen and the thrust of her heaving, it was enough to pop her g-tube out. Nurses informed the doctors and then after changing her diaper that only contained blood, they were notified again, and a KEB x-ray was ordered. Belly was measuring nearly 60 cm at this point, which is more than 3 inches bigger than her normal waist size... very alarming.
To really give you an idea of how much bigger this is, I'll share this picture again from right after her surgery
You can see how she clearly has a defined belly button here, above, not so much, and you can see her ribs. Also in this picture, you don't see her veins like the above picture.
Thus necessitating an x-ray
Labs as well had been ordered at this point, feeds were stopped, so IV's were reinserted (I say plural, because there were about 4 different ones put in to insure that they'd always have a working one with her tendency to loose them so easy). The blood draws were ridiculous, poor girl had 6 in 2 days.... like I said ridiculous! And most of them were really early in the morning ugh!
I know that #4 was done at 4:30 am, and thankfully that was the earliest, but talk about yuck! I mean who orders blood work that early in the morning?? All of this is more than anyone should have to put up with.... but let alone someone that's recovering from a huge surgery and dealing with their intestines not functioning! I'm sure most would not be able to find the ability to even smile.... but not this girl.
This is after one such blood draw (on Sunday) and IV (they coupled these together a lot because it was easier). I had climbed in bed to help hold her when I noticed how hot she was and temp showed 103... and all I was thinking was what else is this poor girl going to have to put up with? So of course that was a reason for more labs... even though she didn't vomit after the 4:30 time, every diaper that day was still only filled with blood.
First round of labs showed that her hemoglobin levels were dangerously low, thus requiring a blood transfusion.
Thispicture was made in good fun.... but I don't think everyone appreciated the joke. Emarie was making faces because she was starting to feel better after the transfusion started... so really she was happy and these were taken in good spirits to lighten the mood.
They gave her two units of blood slowly and she was finished up just after 10 pm.
And she was feeling much better! And see no more oxygen!
But as soon as the transfusions were finished we had to head downstairs to get a chest x-ray to rule out respiratory infections for the "mess".
Poor girl looks so tired! Can't say I blame her though!
X-ray looked normal for a child with asthma, but this wasn't a surprise since she didn't have any of the other tell-tale signs of a respiratory infection.
I guess blood is what Em really needed because she became a completely different kid afterward! O2 levels began to improve, fever went down considerably and the kid had enough energy to last for days! Stayed up until about 2 or 3 am laughing like crazy!
The next morning (Monday), was when the doctors continued pouring in... but still with no answers. But, I still don't appreciate things like bone marrow disease... hemophilia.... cancer.... being casually thrown around. My heart dropped to the floor at the mere mention of these things, causing me to almost miss when one said that most of these things had been ruled out.... They were at least all in agreement that they didn't think the huge blood loss was from the surgery, or the blood discharge in her bodily fluids... they all believed that it's been happening over time.... yet not something that they necessarily want to explore. The labs that morning had showed that her hemoglobin levels had more than doubled and the GI doctors thought that if there was even the slightest decline in the labs the next day (Tuesday), that they would scope her then immediately. And of course I felt like an awful mom for hoping they would go down, because I really felt there is something going on that needs to be looked at.... but of course no such luck, those crit levels were even higher, so no scope *sigh
But Monday did warrant some more walks and visits to the playroom :)
This girl is getting to be a pro at rolling her eyes.... must be mine ;) Mom is still needing a lot of practice with the new camera!
Tuesday was when the resident pediatric surgeon came in because he had come across Em's chart, and he too was concerned. After receiving her history from me and assessing her himself, he thought that she should be scoped as well.... but of course the GI doctors were not as convinced. And they suggested we maybe see a blood specialist to rule out any blood disorders. But after asking the Ch18 community about this and since there's no family history, I didn't think it was necessary.... unless maybe nothing is really found related to GI, then I may revisit this claim. The surgeon also believes that she has been slowing loosing blood over time... and really that's not ok. Anyway, my stance is to not let it go, and I've been on the phone with different doctors since we've been home. I know her pediatrician will help, so we'll be seeing him soon... and her regular gastroenterologist we've already scheduled with for the 1st of February.... and trust me, this time I'm not letting it go.
Other than the news from GI, Tuesday was the best day we spent at the hospital thus far.
After so many pictures, Em kept hiding her face.... so this was my sneaky attempt at getting her through a hole in the side-rail of her bed ;)
The two of us got to explore the hospital that day, and she joined me for lunch, which I had to admit was a first ever for when she's been admitted!
Us at lunch, photo courtesy of Em's iPhone
Em joined both her daddy and me again for dinner that evening
Sadly he only got pictures of the two of us though!
And our funny little girl laughing at Sesame Street.... got to love modern technology!
Wednesday was discharge day, which means that she spent 8 days in the hospital. Since she made such a turnaround from her transfusions and was looking great, they didn't see any need to keep her, and we agreed. No reason to stay in a hospital bed when the doctors haven't even agreed to see what's going on anyway.... *sigh
But we were happy to be going home... and so was one sweet little girl!
Getting her hair done... looks thrilled, right? ;)
All ready!
Couldn't resist this! That hat was from her grandma Peters for Christmas and doesn't it go so well with the pj's and gingerbread toy my grandma gave her??
"So.... why aren't we leaving yet guys??... Seriously, put the camera down and let's blow this joint!" Note how red her lips look! Seriously, scroll up and see pictures from before and tell us what you think! Looks like that extra blood made a difference in a lot of areas!
The iPhone photo I caught that I absolutely love! :)
Yeah this picture is too funny! Really does look like she's getting ready to go sky diving! This wonderful thing strapped to her is her replacement for a car seat until she recovers. Actually she proved to be quite a challenge to the car seat team with her wedge and all. This is the best they could come up with... much to my dismay :(most know what a fanatic I am when it comes to car safety!)
"Seriously, do you really need to take pictures of this??"
And here's how she looks when all hooked in the car... we thought she might not like it, but we were wrong, she quite enjoyed it! All I can hope is that she doesn't get too use to it and won't put up a stink once she's able to ride in her car seat again! Needless to say, she won't be taking any unnecessary car trips in this!
I am a full-time title one preschool teacher, at a preschool for children with special needs. I love my job, but my true passion is being a mom to one very special little girl. Emarie was born in the early morning hours of Christmas Eve 2007. The day she was born changed my life forever... for the better. She was born with a very rare genetic abnormality called 18q deletion syndrome. And we are learning more from her everyday than we ever thought possible. To learn more about Chromosome 18 disorders, visit the Chromosome 18 link under the "Other sites we love" section on the left hand side of the blog. Or you can visit any one of the Chromosome 18 family blogs also listed to the left of the blog!
