Monday, February 27, 2012

The One With Paige's Ultrasound

Once again updates are easiest put here for family & friends.

Paige had another doctor's appointment this morning as per her geneticist's request.  This appointment was for an ultrasound on her (not me!)  ;) .  I've been debating all morning whether I should post about this appointment today, or wait until she has more (unrelated) tests done next week, but I decided no one likes a big long post (oops, like her last update :) ) with no pictures, so I would break them up.

To sum up the ultrasound from this morning (I'll spare you all of the details), we don't have as many answers as I was hoping for.  In fact, we have a lot more questions now.  I don't have an update on her ovaries (relating to BPE), but they did find out that her uterus is split into two sections.  I don't think this is related to her BPE.  From what I gather it does not mean she's not fertile (assuming her ovaries are okay), but she will likely will have a hard time getting pregnant & maybe even staying pregnant.  I am so glad that we could find this out now, instead of if & when she tried to get pregnant when she's older.

From what the radiologist says there's nothing they will do for her now regarding her split uterus.  I guess it's something they deal with as they get older, but I'm waiting to hear back from her pediatrician (who asked me to call her after each test... she's great!), and not expecting... but hoping for a call from her geneticist for more information.  Otherwise, we will go on with other tests and meet up with the geneticist again in June. 

I feel like we take one step forward and two steps backwards sometimes.  Although it is frustrating to keep getting these weird, random results, I am so glad for them.  I feel like we are slowly getting to where we need to be with all of this.

***UPDATE  The geneticist called me this morning (Tuesday) & said they don't know for sure if the object they originally thought was an ovary on her left side is actually an ovary.  She might not have any ovaries, so she is sending us to another specialist (because of this and many other things they found on the ultrasound).  They might not be able to get all of the info pieced together until Paige is a teenager, though.  Her pediatrician says the odds are not in her favor to be able to have kids.  As usual, I will update on here as we get more info.

Saturday, February 18, 2012

The One Two Years Later

Two years ago today my sweet baby girl was born! 

She was the tiniest baby I had ever held.

She hardly ever cried.

And she really hasn't changed all that much, other than growing bigger & growing up.

 She's still a daddy's girl, just like the day she was born.

She's still a very happy girl & her smile is contagious.

She still loves to swing.

She still is extremely flexible.

She still makes me smile and laugh every day.

She still makes me feel like I am the luckiest person on earth to be her mom.

If I had to pick one word to describe her it would definitely be sweet.  Although, the word sweet doesn't seem to sum up just exactly how sweet she is. She's even sweeter than sweet.  (I am kind of biased, though...)

Happy birthday my sweet, happy girl!

Love you always,

Thursday, February 16, 2012

The One With A Trip To The Geneticist

Two weeks ago, I spoke with a nurse at Paige's pediatric office.  She suggested I come in to see Dr. Sandvig (Paige's pediatrician).  I followed orders & went in the next day.  It turns out that what the nurse suggested we come in for was really not a big deal at all, but little did we know it was still an important visit with her doctor.  

Dr. Sandvig is a great doctor.  I have loved her & felt very comfortable with her as our pediatrician.  She has suggested we see many specialists for Paige.  Some of the specialist visits ended up in surgeries & others ended up with a conversation saying that everything looks good for Paige.  I have appreciated her doctor being aware that we should just check on some of these things, and not just over look them and assume they are fine.  

Back to the visit with Dr. Sandvig earlier this month... she has always watched Paige closely on many things, especially with the shape of her head.  Paige has a head shape that is more oval than normal, but doesn't look much different than other heads to the untrained eye.  She looked at it again, and we discussed the previous CT we had on it when Paige was less than 1 year old.  That CT looked good according to the plastic surgeon, so we were happy at the time.  Dr. Sandvig then asked about how Paige's speech was coming along.  I told her is was super slow, but that we were making some progress.  She then suggested we see a geneticist to see if there is any linking factor between Paige's eyes, head shape & lack of speech.  

I called the genetics office & although they normally were booked out until May, they must have had a cancellation because we were able to get into the office in 2 weeks.  The thought crossed my mind that it was meant to be that way, although I really didn't think that they would find anything.  While we were up that way, we scheduled and appointment to get Paige's hearing checked again for the same day.  

Yesterday was the day we went up to the U.  The geneticist was a very nice & thorough lady.  I had no idea what to expect from the genetics appointment.  A nurse came in & asked a ton of questions about Paige's health, and the history of our families.  Then the geneticist came in & asked more questions & examined Paige. She looked at everything from the shape of her hand & fingers to the size of her feet.  She then took her team in the other room for 10 min or so to discuss their findings.  She came back in and said she thinks that Paige might have 2 syndromes.  It sounds like the easier one to diagnose is called Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (AKA BPE).  There are 2 types of this syndrome.  Type II pretty much just affects the her eyes (we already knew she had the ptosis part, so that wasn't a huge surprise), but Type I affects her eyes & is linked with female infertility (random, I know).  We obviously have to do much more testing to find out which type she has.  Her geneticist also thinks she might have one other syndrome (that may or may not connect her head shape, her speech delay, her balance, and a couple of other things), but from what I understand she doesn't know how to label/what to call that syndrome.  She is going to take Paige's case to a board review meeting to see if anyone else can think of what it is called.  Meanwhile we will get more testing on her head shape as well.  

My first reaction was something like, 'something is wrong with my child?!', but the more I thought about it, the more I realized, she really is perfect.  God made her this way for a reason & she is perfect to me, even if her eyes are droopier than normal.  

The good news is that she passed her hearing test.  I thought it was going to be opposite... I thought she would have come away from the geneticist with no problems & have hearing problems.  Silly me.  

Now that everything has sunk in a little bit, I realized that I have thought for many months that something just isn't right with her speech development.  People would tell me that she will catch up, and she probably will/would without help, but it just still didn't feel right to me.  I would often feel kind of sad about it (for lack of better word), but never knew how else to help her other than with the speech therapist.  Now, I think we are on the right path to getting her the best help possible.  

So, although we have more questions than answers now, I am so grateful for all of the doctors and specialists and nurses who have helped Paige & who know their stuff.  I thought this year we would make lots less trips up to Primary Children's Hospital than last year, but it looks like there will be more.  I am grateful for it, though.  Everyone up there is there to help & I am so grateful to have a place like that.  

PS- Paige was SO great at her big day of appointments.  She was extremely well behaved & cute as could be.  

Wednesday, February 15, 2012

The One With The Great Grandpa

We found out last month that Rick's grandpa had 4-8 weeks left to live because he was diagnosed with pancreatic cancer.  Pancreatic cancer is one of the fastest moving & often called the worst cancer to get.  After the news, we were sure to spend some time with Grandpa Brunson & say our goodbyes.  We told him of a special experience we had with my grandpa (who had passed away before I was born), where he helped Paige come to us.  We told Grandpa Brunson that it was his turn to help our next child come to us.  He gladly obliged.  :)  

January 2012 
Robert O. Brunson passed away this morning.  We will no doubt miss this amazing man, but we look forward to seeing him again in the next life.

January 2012

I'm sad that the rest of our kids will never get to meet him in this life, but I have confidence that he will keep his promise and help our kids back to us.  He was a very sweet & kind man.  He was often quiet, but when he did speak it was something that always made us smile.  He makes me want to be a better person & to be more like him.

Monday, February 6, 2012

The One With Quirky Monday - 'Quirks I Love'

Paige has some of the funniest and cutest quirks out there.  It makes her her, and also me love her even more (and makes me laugh here and there).  I mostly want to post these memories so I don't forget them.  I started to write a short post about a couple of her quirks, but ended up with a much larger list than I ever imagined, so I decided to start a new weekly post about 'Quirks I Love'.  For now I plan on only writing about Paige, but who knows, maybe I'll add onto the list with quirks about myself or things for that matter.

  • Paige likes to do things exactly how they are supposed to be done/used.  This probably takes up the majority of her quirks.  
  • For example, one time one of her Aunts played with her toys all crazy like (& not how Paige was used to playing with them) and Paige just didn't know what to do.  She  gave her aunt a really funny look & I think tried to stop her...
  • Paige also likes to have a bib on every time she eats.  Every now & then she will even want to double up (usually kids her age fight one bib!)...

  • Paige carries a duck & at least one purse around almost everywhere.  We try to keep the duck in the house, but she takes her purse every time we go somewhere.  I think ducky is her best friend (someone in our ward who was out of a job at the time bought it for Paige after one of her surgeries.  i thought that was so nice of her).

  • If she or I spill her food at the dinner table, she points at it until I clean it up...

She has been so much fun to get to know & watch grow.  I love that she is unique & that she makes me smile every single day.

Disclaimer: I know the term quirks is usually used negatively, but I truly adore these qualities about Paige.  Also, I know a couple of the things I write may be borderline quirks.  I just want to remember as much as I can about Paige, so this is the best place to fit them in.

Friday, February 3, 2012

The One With Photo Friday - "Hands"

for today's Photo Friday, I chose

only because this happened the other day...

That's what the hand of a mom looks like...  nails with remnants of polish on them & writing all over my hand from my cute daughter.

instagram style story board... click to see larger

I showed Paige how to trace our hands & this was the first time she actually wanted to do it (when I made the grandparent's day card & had to have Rick hold her hand down so I could trace it).  Infact she liked it so much, she wanted to trace my hand too.  I helped her the first time, then I thought I would see how well she did on her own.  :)  I guess I should have known better.  After she saw that she had drawn on my hand, I caught her drawing on her own hand.  I like her a lot & I have more & more fun with her every day.

please don't judge my cell phone taking abilities (rather, disabilities).  :)