Cutest blog

Wednesday, February 20, 2013

Family Update

Right now our family has so many things up in the air.  We totally feel like we are "in between" so many different things right now.  Our move to Colorado is getting closer with about 3 months until the packers come to pack our household goods.  We have finally started to feel more excited about moving, and more okay with leaving Minot.  We have always loved living in Minot, and no one has ever heard us complain, unless it was wishing for more snow :).  But lately, so many negative things have been happening, that we feel ready to just move on and start our next chapter.  We are probably the most excited about buying our first house in the next month or so...something we have been wanting to do for the last 10 years, but are now finally in a place where we can and not be stressed, as we are now 100% debt free! We can't wait until we finally have our own home and can make it ours. I am sure we will post a big announcement when we have everything finalized.

Update on Abby:

We just had the girls parent-teacher conferences and of course Abby did amazing.  Her teacher refers to her as "the perfect student".  She is reading over 2 grade levels ahead of where she needs to be and all of her other subjects are scoring well above average as well.  She has been going to a "gifted and talented" program for the last two years which she LOVES.  Right now her favorite subject is still science (mostly biology).  She has no idea what she wants to be when she grows up.   Most of the time she says she wants to be some sort of animal doctor or maybe a zoo keeper.
As far as her health, it is remaining about the same.  She still continues to sleep walk 2-7 nights a week (started as a toddler when she moved out of her crib).  Her night terrors had completely gone away a couple of years ago, but have started to come back in the last few weeks. The sleep walking still remains, even after a 6 month time frame of it only happening once or started back up pretty often about a year ago.  Her migraines are completely under control with her medication, down to 1-2 headaches a year.  We did find out she might possibly have some sort of asthma or other bronchial issue as we found out she is having a harder time running and breathing at the same time.  If she does, it's very mild and we are trying out an albuterol inhaler for a few weeks to see if that makes a difference.

Update on Jordy:

Jordy's conference went great as well.  She is right around where she should be, and even excelling in a few areas.  I think right now, her biggest struggle is reading (as it is for most kindergarteners) and we definitely need to work on it more with her.  We read to her every single night, but I know we need to push her to sound out and read words more often.  Last weekend we went on our trip to Grand Forks, ND to meet with a Pediatric Orthopedic Surgeon.  We found out that she does NOT have Perthes Disease, but she does have some sort of genetic disorder with her hips and possibly other places in her body. Usually these cases are presented with short stature, which would explain why she is so small.  We really didn't get much information at all because he said we need to go to a genetic doctor to find out exactly what it is.  She needs full body scans as well as genetic testing to find out which marker is showing up abnormal to know what we are dealing with her.  Honestly, we didn't care for this doctor at all.  He barely even looked at Jordyn.  In fact, he thought she was a boy, after coming into the room (I get that she has a gender neutral name, but she is wearing pigtails and earrings, and he didn't even look at her).  Honestly, how hard is it to glance next to you and see what your patient looks like?  We do appreciate his knowledge and that because he is a specialist, he could tell right away looking at her hip x-ray that it was not Perthes (apparently, they look very similar, so our pediatrician still did a good job catching that something wasn't right!)  This explains why she hasn't really had much pain as this condition usually isn't accompanied by pain.  He suggested waiting until after we move to Colorado and have access to one of the best hospitals in the US (Denver children's hospital) to see a genetic specialist and find out more information.  Either way, it sounds like nothing really will be done, it's basically just so we know what her condition is.  He said most cases, once you hit your 40s, probably need a hip replacement.  So as of right now, we are pretty much back to square one as far as what Jordyn has, but it's nice to know she will probably not need any sort of surgery or treatment during childhood.

Update on Geoff:

I think Geoff is probably more anxious to move than any of us.  He has been working much longer hours with a much higher workload the past couple of months and he is getting burned out on always having extra work thrown at him non stop. We just keep repeating "3 more months".   He is testing for his next rank in a couple of weeks, and we think he has a really good chance of making it this year. He has worked very hard to get where he is and I know he is excited to see what changes come with his AF career as he moves up in rank.  Ultimately, his goal is to make Chief by 20 years.  He is excited to be going back to his intell career and starting a new job in a new place.  Right now he is taking a semester off of school so he has more time to study for his test.  His hearing aid is still not working for him and at this point probably never will.  We will probably have his metal stump removed and test out a brand new device that is pretty much his last hope of him ever being able to hear from his right ear.  He doesn't really have much free time lately between his longer work hours and studying for his test, but hopefully that will be changing soon.  He is very excited to buy our first home and all of the stuff that goes a long with owning a home (so many project ideas).  With his new job in Colorado we are hoping to have more time to travel and do fun little weekend trips since there is so many more things to see and do close by.

Update on Me:

Well, after 6 weeks of weekly blood draws, my blood levels are finally back to pre-pregnancy and we are now waiting on blood work to tell us if I have any sort of blood disorder.  11 tubes...11 tubes of blood they took this week for these tests!  Part of me hopes they find something, because then, I will have an answer.  A reason why we lost him.  Right now I am mad at my body.  I am mad that my body formed a blood clot and made us lose our perfect little baby.  I know I had no control over the situation, and I did nothing wrong...but  we lost him because my body did something wrong.  He was strong enough. He held on until the very end.  He would still be safe and sound, growing stronger inside me right now. This is the longest it has ever taken my body to heal from a miscarriage, which is to be expected because I was much further along, but I just want it to be done and to feel back to "normal".
Right now....I am just tired.  Flat out tired.  Emotionally and physically.  I feel like I have just been going from one doctor appointment to the next between the four of us.  I am the one factor that never changes in each situation, and even though I wouldn't have it any other's exhausting.  I am blessed to be able to be there for every appointment, every phone consultation, and every "Mommy, my legs hurt more today."  Of course I would rather us not have to go through all of these trials, but I am thankful that we get to be together as a family, and that we are where we are supposed to be.  I am thankful for the doctors and the knowledge they have.  I am thankful for the Air Force and the medical coverage they give us so we never have to pay anything out of pocket.  I am thankful for the family and friends who love us, pray for us, and support us.

Saturday, February 2, 2013

Perthes Disease

I feel like all I have done lately is blog about not so awesome things going on around here.  I kind of hate that...but it will be continuing with this post.  I try to blog important stuff so family and friends can stay up to date to what is going on with our family. Usually it is all wonderful things, but lately, not so much.  Most of you know I am 100% not a phone talker (plus I love you all, but I just simply do not have the time to call all of you), so blogging helps everyone know what is going on.

Yesterday, Jordyn was diagnosed with Perthes Disease (click for more info).  In summary it is a condition in her hip joint that will need to be treated so it does not worsen.

For the last month or so, Jordyn has been complaining a little here and there about some stomach pain.  We didn't think much of it, but I kept an eye on her and paid attention to how often she said something.  She would say her stomach hurts (usually in a happy tone) but then run off and continue on with her happy, carefree ways of Jordyn.  She started to say it more and more so I started to think something might really be wrong.  Of course, I asked her if she needed to go potty, or felt like she was going to puke.  Both answers were always no, and she was going #2 normally still.  The strange thing a lot of you know about Jordyn (one of many strange things actually) is that she has a super high pain tolerance and she never gets sick.  So when she complains of something more than a couple of times, it probably really is bothering her.

So I made an appointment with the pediatrician on base.  We have been seeing Dr. Padial.  If you are stationed at Minot and you do not take your kids to him, I highly recommend him.  I don't take my kids in for random colds and stuff like that, and it is usually something pretty serious when I do take them in, and he understands that.  He is always very patient and seriously listens to what I have to say.  He right away thought she might be constipated (it can still happen even if you are still going regularly).  He said we are going to try and give her extra fluids and if its still bothering her in a week or so, we will do an X-ray.  Well...of course it wasn't really bothering her (it never really was) but she had still said a thing or two about it.  So he said we are going to just do one and check so we can know for sure.  Well we did the x-ray of her tummy and were shocked to find out she was COMPLETELY backed up.  Like her entire digestive tract was FULL.  He was honestly shocked she was not in serious pain all day long.  So he prescribed her some Mirelax and said she would need to be on it a while to give her bowels a chance to heal and empty when they are supposed to.  (This was on Monday of this week)

Fast forward to yesterday (Wednesday).  I was sitting at the allergy clinic with Geoff during his lunch break.  He gets shots twice a week.  When you get allergy shots you have to wait 30 minutes after your shot before you can leave to make sure you do not have any sort of severe allergic I go and with with him so we can spend time together.  While we were there I get a call from Jordyn's doctor (the peds clinic and allergy clinic are next to each other and share a waiting area).  He tells me that he was so shocked by the severity of her being backed up (and her not being in pain) that he didn't really look super close at the x-ray and was just seeing all the poop....and when he went back to look better at it he noticed something else wasn't right.  At the VERY bottom of her x-ray, you can see the very top of where her hip connects to her femur and he suspected perthes disease. Of course neither Geoff nor I had ever heard of this so he tried to explain it to us.  I got off the phone with him and told Geoff and we decided we should just see if he could come out and talk to us.  He brought us out a hand out with info about perthes and said she needed to get another full x-ray, but of her full hips as soon as possible.  As soon as she got out of school I took her to radiology and had her x-rays done.  After, the girls and I waited around until he could look at them and let us know the results.  About a half hour later, he confirmed that it was in fact perthes disease in BOTH of her hips.

This came as such a huge shock to us as she hasn't every complained about her hips hurting, like at all.  But the space between that shows perthes, is pretty big so it seems like its advanced enough that it should be bothering her.  I asked her if she has any pain in that area and showed her exactly where, and she said, she does.  She said it hurts pretty much all of the time.  She just never told us.  I am not really sure how much it hurts, or if it even hurts her at all.  She said she doesn't know why she never told us, and we tried to set up a time line to figure out when it started hurting...and from what she pointed out, it may have been around Thanksgiving, but who knows.  Jordyn has NO sense of time at all, and even when we do explain it to her, she still just changes the time frame to whatever works in her favor.  If she asks how long til her birthday and we tell her about 4 months, she says "you mean 4 days, right?"  We say no, 4 months, which is over 100 days.  And then the next day she says, yay its only 3 days til my birthday now! So we really do not know how long this has been doing on.  We feel horrible that we didn't know and that for some reason she didn't feel like she should tell us.  We always tell them they need to tell us everything, especially if something is hurting for a while.    Honestly, we may have not found out about this for a long time, until she was in severe pain if it were not for Dr. Padial randomly finding this.  We are so thankful that he took the time to go back and look for something he didn't even need to be looking at.

Jordyn very excited to have her mattress on the floor.
(and no, Jordyn does not wear glasses, these are fake ones but she wears them all of the time)

Right now the girls have loft beds (which I never wanted by the way, I was talked into them).  We were going to be selling them when we moved, but decided to try to sell them a little earlier now with the news.  We didn't like the idea of her climbing up and down the ladder anymore.

We found out that this condition is very rare for girls as it is 4-5x more likely in boys.  She is in the normal age range for diagnosis, and if diagnosed before 6 years old, the outcome is usually awesome and with a full recovery.  We have a referral for a pediatric orthopedic in Grand Forks.  We are hoping to find out every last detail, from when this probably started, to how severe it is, to what the next steps are.  From what we have read it can be as mild as bed rest and physical therapy, to as severe as surgery and months of braces and casts.  We honestly do not know what to expect at this point.  I will be sure to update when we find out more info, but for now we are taking precautions and are remaining more aware of what she is feeling.