Thursday, November 26, 2015

Completed Surgery #3 & Happy Thanksgiving!

The eye surgery was done just two days ago and Cora is doing great. It was a minimally invasive procedure with no recovery, the actual surgery was just 10 minutes long. She still has some blood and drainage coming from her nose and eyes but that's to be expected. I'm always amazed and get a very different, pinpointed feeling of.........worry, love, impatience, gratitude, etc, every time I go into the pediatric surgery center at the hospital. This was Cora's third surgery and sixth sedation, you'd think the more I go through it the easier it would get as a mother but it doesn't. It's always nerve racking, I think mostly because Cora's a high risk for potential anesthesia problems and/or any other complication regarding her heart, respiratory, and how her brain will react. So far we've been blessed every time.

It's been a few months since we've had so many doctor appointments or heightened problems, I almost forgot what it was like to be a special needs parent. It was nice to be "normal" for a while. I can't explain the true magnitude of the love and bond that I have for Cora. My relationship with her is different than it is with Kimball, not that I love Kimball any less, in fact quite the opposite. She and I are just unique and different together and I treasure that. I treasure being her Mama and cannot express how grateful I am for this entire journey. It is because of Cora that I've experienced a different kind of personal revelation (who knew there was more than one type?). It is because of Cora that I view life itself in a whole new light. It is because of Cora that my relationship with God the Father and his Son, Jesus Christ, is so significant.

On this day of Thanksgiving, I'm so grateful for my little family that brings me so much happiness, for Lance's work that brings his happiness, and for the gospel which makes us an eternal family. I'm grateful for the gift of the resurrection and forgiveness. I'm grateful for a hard working spouse who honors his priesthood and holds his children dear; all that he does he does for us. I'm grateful for a country that was founded by just and righteous men which allows me to give thanks and praise to our merciful Savior. I'll praise His name forever!

The kids might be sick today on Thanksgiving, but we'll still have our own little feast. They loved watching the Macy's parade and after some much needed naps.......gobble, gobble, gobble!

Sibling Bond

After Cora's done with school, she squeals in delight as she sees us in the hallway. As soon as she's let out of the gate she and Kimball immediately hug. Every time. They usually hug two or three times and fall down on top of each other because they're so excited to see each other. Completely melts this Mama's heart!

Random Photos

On this board we write various things that we are thankful for in each other or that we love about each other. Occasionally I'll write a funny moment from years past. The other day I woke up to this illustration and I'm still giggling.

Cora's picture was in the Guild School's newsletter this quarter, I think this was during their  Halloween celebration.
This kid is always cracking me up.

Cora Turns 2!!!

This darling girl turned two years old! I am so incredibly grateful that we got her for another year, and I will continue to feel that way year after year. Time with her truly is a gift and unique in it's own way. This was actually the first real dessert she's ever had. I made a gluten free, egg free, and dairy free cake with a powdered sugar icing. And you know what, it was actually so moist and dense and delicious, it tasted just like a chocolate donut. It was really nice to be able to give her a piece of dessert without thinking of tummy troubles she'll eventually have with being allergic.

Her gifts were play food and play utensils/dishes from us, a play mop set from Grandma Cox, and a baby doll from Grandma Julie. Both of the kids have just loved playing pretend lately and they can't get enough of these new toys!

Dearest Cora,

We are so blessed to be your parents! At two years old you are walking despite doctors saying you'd never do such a thing. You don't talk yet but you speak very well with gestures, sign language, and with your eyes. You do everything your big brother does and he's taught you how to make some funny faces. You are still cuddly and give any stranger a hug. You're solid at 30 pounds and tall for your age which makes me giddy on the inside knowing what severe stomach troubles we had your first 18 months of life. You love dairy free cheese and marshmallows, reading books, and your new baby doll. You're so sweet and loving. Your eyes tell me everything, I know everything you're trying to say or want just by looking at your pretty blue eyes. You're such a joy and the immense love we have for you is overwhelming. Happy birthday, baby girl!

All our love, Mom & Dad

Thursday, November 12, 2015

Idaho Visitors

I didn't get a single picture but Donna and John came to visit us for five days. It was so nice to be on vacation mode for a bit! We didn't do much worth mentioning; Donna and I did some Christmas shopping, Lance and John did removals and odd things here and there, we ate out, and we had so much fun with them visiting. I wish they could've stayed longer, but I relished the time they were here!

If and When

I have debated journaling this and have fought the urge all year long because this is so personal and raw and makes me vulnerable. But now I just need to get my thoughts and feelings written down.

This year I should be pregnant and have a newborn in my arms as I type this. I'm not and that is my choice because I get so darn sick when I'm pregnant, I need to be able to take care of the children I do have before I can bring more into our family. But the question has been on my mind all year long. The imminent questions of IF and WHEN do we have more kids? And yet here I am 11 months later still without an answer.

I feel like there is another child, another spirit out there who is supposed to be a part of our family. I simply don't know how to bring another baby into this world without turning MY world upside down. Getting sick? Sure. But I'm more concerned about Cora and Kimball's needs. Cora has therapy twice a week for two hours each along with a number of doctor appointments. Kimball has speech once a week. I have no idea how I'd be able to walk to the car to load the kids up, no less actually drive a car to get them to their therapies. Concern #1.

In my head is a very long file folder of all of Cora's surgeries, doctors names and specialist fields, diagnosis and disorder list, medical terminology, medications currently on and medications she's allergic to, a seemingly endless list of various symptoms and side effects and all around bodily history of her short 24 month life, and a detailed chronological time table to everything in between! So, if someone else does take Cora to her specialist visits I'm afraid critical history and information will be left out or that questions won't get asked that I need answers to. Concern #2. 

Cora has seen geneticists and has been cleared of any genetic disorder or disease. But there is still a risk of having another child with malformations, defects, or abnormalities. Concern #3.

Have I mentioned that I get hyperemesis gravidarum, A.K.A. extreme vomiting and weight loss while being pregnant? Concern #4.

Having explained my concerns there is still this unshakable yet subtle feeling that there's another spirit who needs our family. And so this question remains in the back of my mind of every day.

Last week there was a sewing class in RS and I went and worked on some Christmas projects that need sewing. A gal had asked about Cora and the previous day I had just found out about Cora needing another eye surgery so I mentioned that. She said, "Oh that's the same day I have to have surgery too." This gal is having a hysterectomy out of necessity. She's 31 and has three children and it has taken her the last eight months to come to terms with this surgery. I humbly asked how she was feeling about it, knowing full well her heart's desire of wanting a lot more children, and I suddenly burst into tears. I just had total sympathy and shared in that utter loss because I have been facing the same question all year long. Of course my situation is definitely not as dire because I don't have to base my answer on medical conditions. But my heart ached for her because I knew that I too, soon, would be facing the same dilemma. I couldn't stop crying and I felt foolish and didn't want to make her start crying especially since it had taken her so long to come to terms with her fate. But my heart truly ached and it was then that I realized my heart will always ache when I have to come to terms with my choice of IF and WHEN. Whether my reason is brought on by choice, medical conditions, or age, it doesn't matter. It is an ache that will be there, hopefully dulled by time and grandchildren but a desire to have more children will always be there even if I'm 90 years old.

Cora Update - Surgery #3 and the Reflux Battle Continues

The last two and a half months have been a bit of a whirl wind again, I almost had to break out my notebook and start writing down every little thing that I noticed with Cora. It started with her shirt being soaked from drooling due to cutting her two year molars, it irritated her skin and gave her a rash which then spread to her back. Then her nose started running and was always green and gunky. Then her eyes were watering really bad again in addition to her waking and screaming at night. She'd sleep fine during the day for a nap but night time was a different story and I mostly was unable to console her.

At first I thought what anybody would, she's sick and has a cold. No biggie. But after a month I started questioning that and further contemplated what could be wrong. After two months of this even the therapists were telling me that something was wrong and the school nurse said her ears didn't look that great and to get them checked out. I couldn't get in to see her regular pediatrician so I opted for another provider who said that Cora had eczema and seasonal allergies. I politely disagreed with both and went on my way.

I started thinking more about getting another round of allergy tests done in case that was the culprit but I can't get into Cora's allergist until January.

Then we had a follow up appointment with the Ophthalmologist who after walking in the room and seeing Cora asked if she'd been crying. Nope, she's always like that. Ok, so the tear duct probe surgery that was done in May was not as effective as we'd hoped. How about surgery on her eyes again, this time putting in a tube? So we have surgery scheduled for November 24th on her eyes. It's minimally invasive, takes about 15 minutes, and I'll probably be home by 8:30am with no recovery needed. I felt relieved, honestly, because I'd like this problem fixed and I know people mean well but I get so tired of all the questions: oh, why is she so sad? Has she been crying long? Poor thing, what's wrong? Oh I see she's got the crud that's going around? No. This is normal for Cora.

And then that night a wave of previous emotions just leaped into my lap unexpectedly. Because of the surgery but mostly because of this "cold" that's been bothering her for so long. We just went through this in the spring, although much more serious symptoms and circumstances, but still. Just when you think things are going well and you're out of hot water, you have to jump right back in with both feet. I felt so defeated. I felt so bad for Cora! And so I cried in bed and cried and cried. It had been a long time since I cried. I finally called Lance into the bedroom (was downstairs working) and needed someone to talk to. So we chatted and I cried a lot more. I didn't necessarily feel a big weight lifted but I did receive inspiration. You can call it a light bulb moment or revelation or a motherly instinct or a combination of all three, but I instantly knew what was wrong.

Cora was still suffering from reflux - and bad! The only option left for her is medication, she's already had the nissen fundoplication surgery and the only thing left to help her is reflux medication. The problem with that is that she's highly sensitive and allergic to reflux meds. Back in May when we had the tear duct probe and endoscopy done, we knew for absolutely certainty that reflux was pooling at the top of the fundo. And not just acid reflux sitting there but she's been aspirating it as well, both into the lungs and through pharyngonasal regurgitation. That definitely explains the runny, green nose and the constant watery eyes. Poor baby girl!!!

A low dose, mild reflux med was prescribed in May after seeing the reflux pooling, I never tried it on Cora because I knew she's be so intolerant to it. However, also knowing that this is the only option left for her I decided to give it a go. She's now been on the Famotidine for 10 days. The runny and green nose has cleared and she's not waking up screaming several times a night any more. On the down side, she's also been constipated (side effect) and has a new rash (intolerance). So we're stuck in a catch 22 where the medicine is helping but also causing ill effects.

I'm hoping I can get the rash to subside altogether. If that doesn't work then we swap meds and keep trying for one that will work for her. I'm crossing my fingers that this fixes the problem! (And if the eye tubes don't work then the last option is surgery again, drilling holes into the nasal bone).

IN GOOD NEWS........the last two weeks she has been jabbering A LOT more! I was hoping that once she got the walking down and it became second nature to her, that her speech would develop and pick up. She doesn't say anything that makes sense, it's just baby jabbering. But the fact that she's making audible noise is great news!!

The White Elephant



Kimball, The Goofball

This boy has got so much personality and is always making faces or saying silly things, anything he can do to get someone to laugh. And it somehow amazes me how his pictures are rarely a good normal, smile. He's always cracking up the facial expressions.

This $1 investment on a tube of glow in the dark bracelets was worth it. I've had a hard few days being patient with the kids, either that or they are extra whiny and ornery. Probably both. But I'm thankful for little things like this that give all of us a break.

Sunday, November 1, 2015

Trick or Treat!

One of the fun things they did at Cora's school was let the kids wear their costumes and go trick or treating from classroom to classroom or therapist. She loved it and started grabbing anything she could to put in her bag. One office had some stuffed animals on a shelf by the door and Cora went straight for the puppy and put him in her bag.

 These are my matching supermen! I'm too cheap to buy costumes so I found Cora's outfit and decided to match the kids. Kimball's is actually pajamas and both are a win-win because they can wear them as many times as they want to instead of just once a year.
Lance and I revived the old hillbillies, or as he told everyone at the ward part, we dressed up as the Cox ancestors.

Kimball's 4th Birthday!!

Here he is in his birthday suit, haha. In the morning I let him drive his cars in the bath tub through the car wash (shaving cream).
 We played with lots of balloons all day long and I forget how much kids love balloons until a birthday rolls around.
Here's the birthday boy in front of the finished cake! Of course as soon as I took the picture the back of the engine fell off and it was beyond repair at that point. The engine didn't look very good to begin with but Kimball didn't care and it was delicious! I did a train cake because his present from us was a set of train tracks.

 Thanks Grandma Julie!

 The trains and tracks which he loves!

 And Daddy took him on a special Man Trip for his birthday. The two of them went to Wonderland, a game/arcade type of place.

Happy birthday, Buddy! You are an excellent big brother to Cora and absolutely adore her. Your favorite food is meatloaf which you constantly request and love playing with your cars and trains. You like to build and create stuff, even in the middle of the kitchen with all of the canned food and it sometimes drives me crazy although I've never seen a better castle made of evaporated milk. You like music and singing and making any kind of silly sounds with your mouth. Burping and tooting instantly gives you the giggles. Daddy is your best friend and you're just like him in that you love to make people laugh. We love you, Kimball!!!

Random Photos

Last year I found this shirt on clearance for $1 so I got one for Kimball and Zander.
 Fort making!

 When was the last time you folded in half?
 For one of the busy bags I finally found a magnifying glass to go with our miniature animals. Kimball thinks it's really cool.