Wednesday, February 27, 2013

Non-FPIES ER Visits

Last Saturday CutiePie had her first trip to the ER.  I always thought our first drive-as-fast-as-I-can trip to Children's Hospital would be FPIES related.  I always kinda imagined the puking and the gagging and then the IV's and meds and explaining FPIES a million times to doctors who don't know what it is. Well, apparently all nurses, doctors, med students, EMTs, and registration personnel have no problem recognizing that a little girl screaming her head off with a towel soaked with blood and a fingernail hanging on by only a thread needs attention! 

We were on our way out the door Saturday to go meet some friends for dinner.  Daddy was taking the dog outside and CutiePie was standing by the front door watching him.  BigBrother decided to go out with Daddy and in the process of going out the door, closed it on CutiePie's left thumb.  Ensue screaming.  And bleeding.  So.  Much.  Bleeding. 

We started off by going to our local Children's Urgent Care, but they told us we would need to go ahead and go to the ER, that her injury was more than they could handle.  They did go ahead and take x-rays so they would be ready by the time we got downtown so that was helpful.  So we bundled back up into the car and headed downtown.  Can I stop here and just brag a moment about our local Children's Hospital ER?  I have been less than thrilled with my experience with other departments, but their ER was wonderful.  They took us right back when we got there and a wonderful EMT got CutiePie's vitals and oh-so-gently cleaned off her hands and bandaged her finger as best as he could.  (CutiePie hates to have her hands messy, so the bloody mess was almost as disturbing to her as the painful finger!).  Once she got her "hop hop" bandaid and a dose of Tylenol, CutiePie told me she was ready to go.  She kept pointing at the door and telling me "bye bye" and "go go."  But her finger looked ROUGH.  Really grossly nasty rough.  And painful.  And bloody.  The ER doctor wanted a hand specialist to come look at it and the x-rays showed she had fractured the tip of her thumb as well, so it ended up being something that needed much more than a bunny bandaid!

CutiePie ended up needing to get an IV (tough cookie didn't even flinch while it was being put in!!) and be given several doses of Ketamine (sp?) to make her out of it enough that the orthopedic surgeon could remove her nail, suture the cuts underneath, and then replace the nail and tack it into place to keep the nail bed open to heal.  It took about an hour of her being pretty much asleep for them to fix it.  Nine hours after smashing her thumb in the door we were finally able to leave the ER all bandaged up and with a prescription for some heavy duty antibiotics to keep infection at bay.  We have to go back on Friday (Me and Daddy's wedding anniversary!!) for the hand specialist to unwrap the bandages and make sure it is healing.

I am happy to announce that CutiePie did great with all those different medicines and seems to be doing fine tolerating the antibiotics as well.  With FPIES you never know what is going to bring on a reaction, and with so much new stuff in her system I was really afraid it was going to mess up her gut again.  But she's doing fine!  In fact, the biggest obstacle we're encountering with her healing is getting her to be calm enough and avoid injuring it again.  She isn't exactly the most graceful toddler in the world.  It is still sore and CutiePie walks around all day asking me to kiss her hand, but we haven't needed to give her anything for the pain.  Right now we are just praying that on Friday we can unbandage it and it will be healing nicely and we can go back to life as normal.  The surgeon did say that her nail may never be "normal" again - it may grow back with waves or bumps or just look a little different than it should but her thumb shouldn't loose any function (which is great since CutiePie is left handed!).  The biggest concern is just avoiding infection especially with the fractured bone underneath the cuts. 

I've been a mom for almost five years now and up until this week haven't needed the ER for ouchies (twice Big Brother had to go to the ER being sick, but never for ouchies!).  Here's hoping it's another five years (or never) before we need it again!!

Wednesday, February 6, 2013

Thank You, Help Me Grow

This morning was CutiePie's evaluation for Help Me Grow- our state's version of Early Intervention.  Three amazing ladies came over to our home and pulled out all sorts of developmental assessments to see where CutiePie was on the grand scale of things.  Although a developmental delay is not something we are worried about, it is part of the process to qualify for Help me Grow and honestly it was pretty interesting to see this side of things versus just the strict medical side of growing.  Their findings you ask?  Yep, CutiePie is pretty much a genius.  But we already knew that already! ;)  No, in all seriousness she did not show to have any developmental delays.  With most of the activities and questions she is right on target for being a normal 18 month old toddler.  However, on the more academic type activities she well exceeded what was "normal" for her age.  She even identified shapes and sorted objects by color and size - NO CLUE she could do that.  According to the representative those was a three year old tasks and they just wanted to see how far she could go.  Like I said - genius.  I mean, she is my daughter so who would have thought any differently, right?  ::wink wink::

Overall she does qualify for services through Help me Grow because of her FPIES diagnosis.  We will get a representative that will help coach us and find resources and services to help CutiePie with her eating issues. The two most amazing things that happened is #1 no one rolled their eyes or second guessed what I was telling them.  Not even when I listed asparagus and quinoa as her triggers.  And more amazing - #2  our representative is not only familiar with FPIES but has TWO other local families she works with that have FPIES and said they both have had trouble finding doctors to take them seriously in the area as well.  She took down my email address and is going to try to get us in contact with each other so I have more local support.  Talk about amazing!! 

Will Help Me Grow be a magic bullet to solve all our problems?  No.  But it will allow us to get rid of the useless (and expensive) Feeding Therapy.  It will give us a local person who will come to our home and help figure out tips and tricks and nutrition counseling to give CutiePie a more appropriate diet and help her to get back to a more normal weight growth curve. 

And it's nice to not be treated like I'm crazy for once. 

Wednesday, January 23, 2013

Adios Anemia!

Cutie Pie had her 18 month check up yesterday.  I always feel a huge amount of anxiety when we are headed to the doctor for her well-checks.  Has she gained any/enough weight?  How low will her hemoglobin levels be this time?  Will the doctor take my concerns seriously?  Is she going to catch a bug from the other sick kids in the office that will derail our progress?  All morning yesterday I was reminding myself to slow my breathing and CALM DOWN.  Luckily our appointment was the first one of the day so I didn't have to spend all day thinking about it AND there was a lower chance of sick kids sitting around germ-ing up the doctor's office before we got there. 

Overall the apointment went pretty well.  Cutie Pie was up to 21.2 pounds according to their scale and was 29 1/2 inches tall.  That put her in the 10th percentile for both weight and height.  The good news is that she has not dropped percentage points in weight and since she is small on both scales she is at least proportional.  The bad news is that her height percentage has dropped from the 25th percentile from last time - not a super big deal, but not the direction we really want her to be going.  Our pediatrician did say that it looked like (hopefully) she has bottomed out at around the 10th percentile and hopefully she will just continue along her own curve - it just happens to be at a lower point on the graph than most kids.  He does want to monitor her growth a little closer than most kids too, so we'll be going back more often for weight checks to make sure she doesn't fall any farther on the chart.

This biggest news of the appointment though is Cutie Pie is no longer anemic!!  Her hemoglobin levels were over 11 this time, which means we are doing something right at least!  So yay!  We just got to keep making progress.  Right now we are kinda stalled and holding off on trying anything new because Cutie Pie is showing off her over achiever traits and is already working on her two year molars!  It's pretty hard to tell the difference between FPIES symptoms and teething symptoms, so nothing new in the food world for her right now.  Plus, she is eating even less than normal the last few days (you would too if you had huge molars ripping through your gums!) so there really is no point. 

Still no word from Cincy Children's about the feeding therapy team though.  It has been TWO MONTHS since our appointment and they still haven't gotten around to processing our referral for OT.  I'm beginning to think that was another pointless avenue we tried to explore.  Useless.  Oh well.  Live and learn. 

Thursday, January 3, 2013

Petite and Delicate

If it was 100 years ago, I probably would be a super proud momma if someone described my daughter as "petite and delicate."  Today, not so much. 

I took CutiePie and BigBrother to a popular indoor play area this afternoon.  CutiePie is in heaven whenever we go.  They have everything a girl could ever want to play with - like balls, choo-choos, toy shopping carts to run into things, dinosaurs, and a water table.  (She's not so much a fan of the baby dolls and art center)  What can I say?  She's one tough cookie and BigBrother is her absolute role model.   Well while the kids were racing their "choo-choos" around the train table a random lady came up to me and commented that she was "Just like a doll - so petite and delicate."  Um, excuse me?  Sometimes I just get so tired of the comments other people make about her.  I know they are just making small talk and don't mean anything by it.  But a year ago, no one would have ever described her as petite OR delicate.  It would be like me walking up to you and saying "Oh, that huge nose of yours just does such a great job of holding up those pretty glasses."  It's like a compliment and a put-down all at the same time, or at least that's how it feels to me. A year ago no one would describe her as petite.  In fact, a lady once told me when she was little that I was going to have to start just telling her that she was smart because she was too chunky to be told she is pretty.   ::sigh::