Some Summer- A very long post

Pictures and stories from July 2012~ This has been one very full month!

1. Canada Day Long Weekend
Steve had to make his way up to Ft. McMurray after the long weekend, so we thought it'd be fun to take the kids to visit friends and family in Edmonton. It was great timing for a little break from our everyday life and we loved all the time we got to spend with people we love!

 Kalea has this new "thing" she does whenever I try to take pictures of her in her bathing suit, she does all these poses??? I have no idea where she learned any of these because the only magazines in our house are of the home & garden variety, and the only tv she watches is of the kid-friendly cartoon variety. Anyways, we all have natural talents right? LOL

We spent all day Saturday at Wizard Lake with Steve's uncle Wilf and his family, and Opa brought his boat out too! Kalea went for her very first tube ride, and Brynlee was a complete "water wimp" and freaked out too much to even make an attempt at a boat ride. She is such a girl sometimes.
 Really, this day of boating was all for Steve, the only time he got out on the water last year was at our family reunion, and it was short lived, so he's been crying about that for the last year. I'm glad his need for water time was fulfilled if only so I don't have to hear about it anymore :P
*Sidenote* Going to the lake is so different as a Mom, as in, it's a nice change of scenery but still a heck of a lot of work, am I right? I still had fun, but gone are the days of carefree sunbathing while Steve has his fun in the water...sigh...

The night that I arrived in Edmonton (Steve brought the girls up on the Thursday night and I came the following day) we met my best friend and her little family down at Kinsmen for some playtime. It was so fun to watch our kids play together and have fun at a place where we have so many of our own fun memories. Brynlee was dead asleep when we arrived so Steve plopped her in a swing and she gradually woke up (see bottom right picture), poor girl had no clue where she was in that moment, but she was real happy to be in the swing and I think she probably tried every single swing at the park that night. Crazy kid.

2. Calgary Stampede 100th Birthday
Early this spring I mentioned that it would be fun to go to the chuckwagon races and the grandstand show since in 7yrs Steve and I had never actually gone to any of the actual Rodeo part of the Stampede. My brother and sister had never been either, so Dad got us all tickets to go. It was awesome to get to see some of the action, and really that's what the Stampede is all about, that and mini-donuts, I am a sucker for those and they did not disappoint. This year, the grandstand show featured Paul Brandt and I found myself completely enthralled by the performances that accompanied each of the songs that he sang. It was really well thought out and well executed on all levels and I was super impressed. When he sang "Alberta Bound" I got chills, it was amazing to hear it live, in a crowd of people who "get-it" and I felt really proud and blessed that this is where I come from.

The best part about Stampede this year were the amazing fireworks displays that they put on at the grounds and 4 or 5 different locations throughout the city. So fri/sat/sun nights of the Stampede we got a great view of fireworks right from our deck! Pretty awesome! We don't know how we'll ever find such a perfect location if we ever move from here, we are SO lucky!

3. Cousin Time
This year Serena and her family moved from Edmonton to Raymond, but it was a long process full of stops in Calgary, Hawaii, Arizona and finally Raymond. The kids really missed their cousins, it's cute because they randomly ask for them, but sad when you have to explain that they are too far away for a visit. Skype is sure a lifesaver when families are all over the place! This day was so hot, the kids spent the majority of it outside playing and splashing in Oma and Grandpa's backyard. It was great and we're happy that our cousins are just a 2hr drive away now!

Some things that I've noticed about the girls lately... Kalea is starting to assert herself as the big sister and is letting Brynlee get away with less, becoming a little bit bossy, and definitely starting to play the blame game. Brynlee is very good at being the second child, she likes to make us laugh and get extra attention whenever and however she can, she loves to bug her big sister and reacts overreacts to EVERYTHING. They are getting a lot better at sharing and are starting to care more about each others feelings, in fact, Brynlee usually brings Kalea one of her toys as a peace offering when she apologizes for something. Kalea has a soft spot for her sister and when I explain that something Kalea has done has hurt Brynlee's feelings, she gets really sad about it. Being kind is a big deal around here. They are really good girls and love each other so much, they don't like to be separated for very long and when they are, they talk about the other sister almost the entire time! They also won't go to bed without each other, I've tried to send one or the other to bed early for disobeying around bedtime, etc... only it doesn't work so well because they start crying so bad for the other that it just becomes a huge tear-fest that no mama wants to deal with at that part of the day. Needless to say I feel bad for anyone who tries to wedge their way between these girls, they'll definitely have their work cut out for them!
That pretty much wraps up our July, next post we'll have to share all the fun of an all-day 4yr old birthday party- I'm still recovering from it and it wasn't even for my kid!

Probable Diagnosis

I'm trying to wrap my mind around how quickly our "probable diagnosis" came. It was about 5 minutes after I wrote my last post about how fun it is NOT, to see your kids go through hard stuff like being knocked out for an MRI. We have a "probable diagnosis" of something called Septo-Optic Dysplasia. I've waited to post or really talk about it because I needed a few days to get some basic research done. It's not life-threatening or anything, so we're really happy about that, but we're sad about some of the "not so fun" parts. Kalea has 2 of the 3 markers confirmed, and has been referred to Endocrinology to be tested for the 3rd, hopefully in the next few months. 1 in 10,000 births are affected by this disorder, so it's not super rare, but rare enough that scientists don't know much about the how/why it occurs, because it's almost completely sporadic, not hereditary, the mutated genes are recessive and in most cases both parents have to be carriers of a recessive gene in order for it to present, but there are almost no incidences of it occurring twice in the same family. That's crazy weird! If you hadn't noticed, this is all really fun for my inner science nerd, so if you're annoyed with all the biology of it, scientific terms and explanations, probably skip this post :) Also, I am 1,000,000% thankful for my Bio30 teacher, who 10yrs ago gave me my first glimpses of how amazing the human body is, and explained things so well that a lot of this stuff isn't foreign to me. All those diagrams that she made us learn and flashcards she gave us to help us study have all stuck with me and are making this all a lot less traumatic, I need to write her a thank you note.
Okay, here's kind of a brief summary of the markers we have and the one we're looking for,
1. Optic Nerve Hypoplasia: We've learned that the optic nerve in Kalea's left eye is underdeveloped ie. much narrower than her right, this means that instead of having over a million nerves/connections happening she has far less. This also means that the optic disc of that eye is much smaller than if it had developed normally, therefore it has a harder time processing images/focusing and that's why her eye wiggles or sometimes is very turned. Our next eye appointment will be all about what we can do to straighten/help that eye out. We know for sure that it is somewhat functional so we're confident that we have a great team to help us manage that part of things.

2. Missing Structure in the Brain: From what we understand from our phone meeting with the doctor, her brain looks great, but it is missing the septum pellucidum which is a membrane that separates the fluid filled ventricles of the brain. A lot of people are actually missing this structure and don't even know it, although it can be a contributing factor to certain behavioral disorders ie. ADD/ADHD- which if you know Kalea at all, we were already pretty sure we might end up dealing with anyway. Our job now will be really focusing our time and energy on figuring out which learning methods work best for her, keeping her focused when she needs to be and putting in some extra effort to reinforce the things that she does learn- like any parent does. This will hopefully speed up our referral to the Neurologist so that they can do some on-going testing to make sure that we're on pace with where Kalea needs to be, and so we can figure out what resources are out there for her if she needs them. In the picture below you can see the septum pellucidum- the dangly yellow part in the middle of the mint green- that's the part that Kalea doesn't have, so interesting.

3. Pituitary Hypoplasia: This is kind of the "big deal" of everything, and the thing we're worried most about figuring out how to manage, if she happens to have this marker. The pituitary gland works hand in hand with the hypothalamus and the thyroid to produce hormones that help the body grow, reproduce and create energy aka metabolize. If it's underdeveloped, Kalea will need hormone replacement therapy for the rest of her life, in order for her body to function normally. She'll be tested on a very regular basis for the growth hormones because they are the ones produced in the pituitary, and although at this point in her life she is pretty ahead of most kids her age growth wise, that could slow down at any time, so they monitor it really closely, and when it slows, we'll get to play doctor 6nts a week giving her at home injections. I can only imagine how fun that will be for us since I'm severely nervous around needles and Steve is not home for bedtime on a regular basis. Oy! In many cases, they can get a person to just a few inches shorter than what they would have predictably been, so that's exciting, since we've had nurses at immunizations tell us Kalea could end up being over 6ft tall, we'd be happy with 5'9 or 5'10, then I won't look so short next to at least one of my kids!
Anyways, that's kind of the disorder in a nutshell. Now we have a good idea of what we're dealing with and how to manage it, and we just wait to start the slew of specialist appointments that are sure to follow.
On a kind of related note, the Kinsmen Lotto is selling tickets throughout the summer, to raise funds to purchase a Next Generation DNA Short Sequencer, for the Alberta Children's Hospital. The sequencer helps doctor's identify genes that are responsible for pediatric disorders and can help doctor's tailor treatment specifically to the patient, it helps ease fears for families dealing with these disorders and gets the ball rolling faster on treatment plans. If you're able, it's a great cause to donate to, and you could win some awesome prizes! We love the Alberta Children's Hospital and know that Kalea, and many others are benefiting from awesome donations that have already made it possible for them to get access to amazing medical staff, and state of the art diagnostic equipment, in our case, an MRI that she otherwise might have had to wait much longer for. We are so SO grateful and feel so blessed to know exactly what we're dealing with and how to treat it and there are so many other families who don't, so we're going to try to be as proactive as possible for them too. We have some really fun ideas so stay tuned!

Cutest smoothie mustache I have EVER seen!

MRI Day

This has been an exciting few days for Kalea and us. On Friday Dr.Cooper called us after her office hours, to ask some more "general health" questions and she said to me, "I'll re-submit this so they'll probably look at it on Monday and then it'll be in the next few weeks that they call", sounded great to me. Steve was going to Ft. McMurray for the week, so I figured, "Oh good it'll still be a few weeks, so we don't have to worry." I was wrong. I got the call last Monday around lunchtime "Hi, is this Kalea's Mom? We'd like to have you come for her MRI tomorrow, is that okay?" Of course it's okay, but after I got off the phone I was in a bit of a daze, but snapped out of it pretty quickly when I realized Steve would need to come home. We did joke around before he left that he should probably just stay home since with our luck they'd call while he was away, I just didn't realize that our joking could possibly be a reality. We are feeling like a bit of an anomaly in the health world because of the speed at which things are going, but I think it's another evidence of God's care and concern for us in this particular situation, and we are so grateful. There have been, and continue be small miracles in this situation every day. It was really important to Steve and I that we both be there for the major parts of Kalea's treatment, I can do the doctor appointments on my own, but dealing with her when she's scared is more up Steve's alley, since he's not a super emotional person. We appreciate that he was able to turn around and come home almost as soon as I had gotten off the phone with him. Our appointment was made for lunchtime on the Tuesday, which made me nervous because Kalea loves to eat and snack throughout the morning. We tried to fill her up on Monday night and then she was cut off from clear fluids at 9 a.m. Tuesday morning. I was relieved that Brynlee woke up quietly and I was able to get her fed without Kalea being awake. Kalea slept in, I was actually scared that she'd sleep past 9 and not get her apple juice in, so I sent Brynlee to wake her up at 8:45! She NEVER sleeps in that late unless she's really sick, so we were sure happy to have time to get things organized and ready to go that morning without much complaining about hunger. She didn't really notice that she was hungry until we went to drop Brynlee off at our friends' house, so that was pretty awesome, and it was easy to tell her "You'll get a popsicle at the hospital" and distract her from the hunger pains.

She was pretty funny that morning, she insisted on bringing her little dear and her pocket-size Book of Mormon, in fact, she was pretty attached to both those things and she made me run inside before we left so I could grab her book. It's amazing to me how kids get so adamant about bringing specific things with them sometimes, but I'm glad that those specific things helped her feel calm. They were both great distractions while we were waiting and she was really serious about weighing and measuring them and obviously took her role as "nurse" quite seriously. We had explained to her that she would be receiving "magic fairy dust" to help her sleep so the doctors could take pictures of her brain and her eyes, so the idea of that was pretty neat to her. She was pretty enamored when Dr. L (the anesthesiologist) came into the room to prep us. Nurses in scrubs don't phase her, but as soon as he came in and started talking everything was "Yes doctor" and "Um, doctor can I have a popsicle?" etc... Somehow she was able to discern the difference between him and the nurses and she was willing to do whatever he asked. He told us that it might be a traumatic experience- and I've had friends see their kids get put to sleep for different procedures, so I kind of knew what to expect, but not really. At the doorway of the anesthesiology room, Kalea stopped and said "Um, no thanks doctor, I don't need magic sleepy dust, I'm fine" which was our first indication that she knew something was up. She wouldn't lie down on the table, so we sat her on the edge, close to the equipment so she could see what it was, etc... I haven't ever seen her so scared, her whole body was chattering, I've never seen her knees knocking quite so hard, and when she saw the mask? Forget it. They had her choose a "flavor" to coat the mask with so it smelled nice, but you wouldn't know it from her reaction. It took a nurse laying across her legs and Steve holding her arms to get her still enough to get the mask over her nose and mouth and she freaked right out. That SUCKED. If I had to do that without Steve there I would've been a hysterical mess. It only took 3 huge screams to knock her out, but then she was making these awful noises that they warned me about but are nothing close to what I expected. And then you give your kid a kiss on the cheek and walk away? It was the most awful feeling in the world, except that I trust all those people who I was leaving her with immensely. So I cried a bit on my way out the door, but Steve was awesome and just kept me moving which helps the tears go away since I didn't want to be walking around the hospital crying when, to the best of my knowledge, my child isn't sick like so many other peoples' children at the Children's Hospital. It's a really sobering feeling, to think of what so many families are going through there, and yet, you see all these happy faces, even the obviously very sick kids have the HUGEST smiles on their faces. So it didn't take me very long to snap out of that sad moment. On our way out they gave us a buzzer- you know, the kind you get when you're waiting for a table at a restaurant- so that made us laugh. We had a decent lunch and played a few games and went back to wait. The nurse who helped hold Kalea's legs was just heading out when we sat down so we chatted for a bit, and she gave us an update on where Kalea was and helped me feel better about the tears, haha. Nurses are great. We were so excited when our buzzer went off- way ahead of schedule from what they had told me on the phone. She spent a bit longer in the scan than they expected so they woke her up- they usually wait until they start waking up on their own, so that was pretty funny, I asked her how that went and she said "Oh that was fun, she definitely didn't want to wake up". Kalea loves her sleep that's for sure.

She was totally out of it when we got to the recovery area. No eye contact, very lethargic, in a completely different world that's for sure. She would randomly snap out of it though and say things like "I smell watermelon!" "Where's my flip flops?" "Where's my book?" etc... so we had some great laughs. She also refused to recline, so she was leaning quite a bit- you could really tell that the room must've been "spinning" in her mind. She ate her popsicle slower than she's ever eaten anything, the longest, slowest licks- she usually chomps them down really fast, so that was new for us. We had to remind her to keep eating and eventually the nurse was like, "Well Ms.Kalea, I think I'm going to trade you the popsicle for some apple juice to take home, you've been here long enough" LOL We were definitely happy to leave but Kalea was 100% uncooperative, she didn't want Steve to carry her at all and refused to sit in the wheelchair, so after writhing and wiggling through the hospital, Steve set her down to walk on her own. I haven't had much experience taking care of drunk people, but I had flashbacks to a few moments in life where the person really wants to walk and you're trying to just make sure there are no obstacles in their way and guide them on a fairly straight path back to the car. It was sure stressful! She also went through all the drunk emotions, super out of it then really nice, then super uncooperative and angry, then she wanted Brynlee so desperately she started crying, then when we picked Brynlee up she wanted nothing to do with her, etc... then we got home and she screamed that she didn't want to come home and screamed "I want NANA'S HOUSE! I am SO MAD!" The rollercoaster of emotions lasted until about 45 minutes after we got home, party. I was so happy when that was over. They said she'd be mellow for the rest of the day... ahem... she was completely back to normal once her emotions leveled out, I was happy but sad that she didn't want to cuddle with me.
That's pretty much MRI day in a huge nutshell. The doctor will probably have results this week and hopefully we have our appointment moved up so we don't have to wait until August to find out how things went. Thanks for all the love and prayers and offers of help, we appreciate it more than we could ever express.