So little miss Emarie had her 16th surgery yesterday. Pretty minor one in our books- just a little ear opening (have to widen her tiny canals each time they put new tubes in), new tubes and a sleep endoscopy. This was all after the dreaded news in this post and the sleep study in this post.
My brave girl showing no fear as usual in the waiting room
After vitals, dressed and ready to go... still no fear!
Then came a long wait.... she was supposed to go back by 10:30 and she didn't until close to 12! Which wouldn't have been so bad if I didn't need to get home and clean! We had people coming to look at our apartment that evening and since I'd been having contractions and feeling crumby pretty much since we got back from the trip, I hadn't gotten much done to say the least! But finally the anesthesiologist came to get my girl....
I think maybe she's getting a bit big for them to carry....
After that, I quickly got checked in in the waiting area, I ran downstairs to grab something for me and baby boy since it was already lunch time (thought we'd be home in time for lunch!). Then hurried back up since they expected her surgery to take between 45 minutes to an hour. I still wasn't even finished eating when Dr. Muntz came in to say that he'd finished. Everything went well and he was actually surprised by the endoscopy results..... He had my full attention here! Turns out that where he originally thought her obstructions were, mainly her underdeveloped upper jaw and nasal area..... Not it though! And he told me he was a little worried when it all looked good there, that maybe he'd been wrong and that her apnea is in fact central.... I got a little worried here!... But he kept going and then he found her problem, a "floppy voice box" coupled with an "enlarged tongue"..... bottom line is a MUCH, MUCH easier and less invasive fix than a facial reconstruction, but yes she'll still need surgery. But not nearly as bad! Still will need to be admitted afterward, possibly even to the PICU for a bit because it's treated much like a tonsil and adenoid removal.... and well, that didn't go so well for her :/
But all in all a much better outcome that what we were expecting! My first thought when I was told about a facial reconstruction was that I did not want my beautiful girl's face to change..... the face that I've known for well over four years, the face that I kiss endlessly and look at and wonder how she got to be so beautiful. Maybe this is silly, but the fact remained that her tiny nose and small jaw are very much a part of that face that I love, and I was really sad that they were going to change. Now I don't have to worry about that. She will always be my Em of course... but I love her just the way she is! It truly is a miracle that they did not find the obstruction in her palate! Prayers work, hope and faith are real! Especially with our kid who always seems to find her way into the smallest percentages and the most unlikely scenarios.... needing 2 varus osteotomies is proof of that!
Now after Dr. Muntz left it had been kind of awhile and no one had called me back still to go see her in PACU. And just when I was about to get worried, there was a phone call..... a phone call? It was the nurse in PACU, who said Em was doing just fine SAT-wise, she just was not waking up, so it would still be a bit before they called me. So I decided to get her something for when she woke up, and no I wasn't worried. The anesthesiologist had warned that they were going to use a different method to get her to sleep because of the endoscopy, a method that induced more of a natural sleep and therefor was a little harder to wake from.
Cute little doll and butterfly balloon from the gift shop
Finally they called me to go back and turns out she was already in recovery when I got back there! Still not quite alert, so she wasn't quite as excited about her presents as I thought she'd be...
And this was pretty much how she was the rest of the time we spent in recovery..... and the hour ride home! But once we were home, she was back to her usual Em self! During said car ride, Dr. Muntz's scheduler called me to set up the next surgery, so we're set for October 3rd. And while we had people looking at our apartment, we went to dinner at Cafe Rio with daddy
And she laughed the whole time we were there! We were celebrating the good news from the surgery and the fact that she had lost one marble at this point.... she lost the other later that night as already mentioned in the last post.
We quickly got Em's last Sleep Study Fiasco rescheduled, and went the night after Memorial Day. It was as much of a success as it can be.... meaning they got a reading, but it was a less than stellar night. You can all now appreciate the fact that sleeping on a pull-out bed (and pull-out from a small chair, not a couch!) is less than appealing to me in my pregnant state. I'm already having trouble sleeping in my own comfortable bed, so this is almost torture on my aching body. Steve is nice and offers to go, but unfortunately he can only go on a Friday night and of course those are the first to fill up. So I went, and even with a smile on my face ;)
I don't know why, but every single one of our 5 times at a sleep study, they always seem to choose Em to hook up last.... regardless of if she's the youngest there or not (and most of the time she is)! So sometimes, it's not until after 10pm that they even start, and it takes over an hour to get everything on! Granted we were about 15-20 minutes late this time (lost track of time as I was cooking dinner).... but still!
This was the dinner I made, mini meatloaves with mashed potatoes and cheese on top.... divine!
Back to the sleep study....
This was as they were hooking her up, and as you can see, very, very tired already!
Of course though, it still took a couple hours for her to fall asleep since she likes to get silly and then grumpy because she wonders why we aren't home.
But here she is finally asleep
Amazing how peaceful she looks in all that!
She woke up I'd say at least 5 times that night... which is more or less usual. I slept a grand total of about an hour! I certainly missed my "Moog" at home :( That is the name for my pregnancy pillow that saved me at about the 15 week mark with Em... and I had Steve fish it out of storage at about 7 weeks this time...
Yes, you'll have to get one if ever you're expecting.... well worth the money!
It also didn't help that this baby of mine was trying out some new acrobatics, which unfortunately didn't play too well on my already stretched bladder! It didn't help that the only bathroom in the clinic (which is already a distance to walk) was out of order, making for an even longer walk to the next clinic over. And I'll say I waddled there no less than 5 times during the night!
We made it the whole night though! Em woke up at her usual time of 5 am, she does this a lot, but usually goes back to sleep after no more than 15 minutes, makes it real fun on those days when we're about to get up for work in about an hour :/ Anyway, since they have cameras on her and could see she was awake, they just decided to end the study then, a whole hour earlier than they would've. Whatever though, I had been awake the whole night, so it didn't matter to me!
waking up...
And after all that gunk is taken off...
the infamous hair picture!
We for sure faired better with the hair this time, then the last "successful" sleep study...
Sleep study from September 2011
And it takes dish soap, and at least 3 washes with a medicated shampoo (t-gel) before you can get all the glue out of her hair!
So now, we will have to wait until the end of the month to get the results. But I was already told from the tech that night that although she never needed oxygen, she is still showing significant obstruction.... which means most likely we'll be looking at that dreaded surgery. But if it will help her, then we will do it!
Now the nostalgia part of the title.... I don't know why I thought of this that night, but I do see how significant it is in light of recent news. That night as I was desperately trying to fall asleep, I couldn't help think of Em's very first sleep study the week of Christmas, and how cute she looked in the Christmas outfit that a fellow Ch18 family had sent her. I received news last Saturday that Mandi Fisher had passed away at the young age of 30. She left behind her husband Jason, and her sweet little Mckenzie, who like Em has 18q- and is only 2 years old. I hope you'll keep this sweet little family in your prayers. This news absolutely broke my heart, and news of how we will help honor her life is coming in a following post.
We have had our fair share of sleep studies... which yes, are inaccurately named since no one gets any sleep!
This one by far was the worst though. I'll try and make this short, but you know me ;)
I guess it started with a call from Em's babysitter right as I was leaving work that day, saying that Em had been having some significant allergy symptoms, and she wanted to make me aware in case it was going to interfere with the sleep study that night. I thanked her for telling me, but thought that giving her a dose of benadryl before we left would suffice. We also had a physical therapy appointment at 5 and then Steve's sister Amber was coming from West Virginia that day. We packed a lot in before we headed to Salt Lake for our 8 pm check-in time, and honestly Em was still a little "hazy" but seemed ok.
However, as they began to hook her up, she was getting a little worse again, so I gave her one more dose of benadryl, which would bring her total to 3 tsp in about a 3 hour period (most she's ever had).... didn't seem to work, so I gave her her evening dose of Flonase, and then the sleep tech and I suctioned her out and they commenced hooking her up, and oh my gosh she was so exhausted!
this was taken before they started
And here's after she was all ready to go (and how anyone can be expected to sleep like this, is beyond me!)
She was asleep within no time and it had been a long week, so I went right to sleep as well. Too bad that was pretty short lived! I was first woken up by the techs coming in about every 5 minutes and talking about what they could do to get a reading.... I knew that things weren't going well and though we've never been sent home before, I know it is a possibility when they can't get a good reading. After they left the room for the umpteenth time, Em started to stir and seemed pretty uncomfortable, so I went over to her and that's when she began vomiting. The tech then came running back in since they saw what happened on the camera, and once the light was on, we saw how swollen she was looking.
At that point, it was pretty certain that the sleep study was a bust, so we went ahead and pulled all that "stuff" off of Em and changed her clothes. The tech was not comfortable with us driving home without having her checked out by a doctor.... and since it was the middle of the night, the only way to do that was to go through the ER. So we were escorted there with all of our stuff (if you don't know, we need to take a lot of things for this little girl of ours... even for one night!). Amazingly the waiting room was completely empty (have to admit that I've never seen that in all of Em's life!)! So we were able to go straight back, and amazingly Em was doing quite a bit better by the time we were in a room. The doctor didn't see it necessary to do any epinephrin, so she was given some more benadryl, prednisone and zofran, and then a script for more of each of these, and we drove home at 3 am.... one of the longest nights of my life! And really I'm hoping this will be the last time we're in the hospital for allergies! Seriously, this family has seen enough of that! On top of everything else we deal with!
So after all that, we will have to endure yet another sleep study since they didn't get anything at all from this one. Fun life we lead! Haha, what ya gonna do though?
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!
