Sunday, May 31, 2015

Swallow Study

I knew I was forgetting stuff on my last update with Cora, forgot to document her last swallow study!
  • Weak tongue control of liquids and solids but otherwise appropriate chewing and sip patterns
  • Premature spillage of liquids and solids to level of valleculae & pyriform sinuses. Delayed swallow initiation.
  • Deep penetration with nectar liquids by sip cup. Improved control with open cup.
  • Silent aspiration of juice from mixed consistencies but safe swallow with all other solids taken. Needs additional time to swallow bits of residue.
  • Continue general toddler diet with nectar liquids. Avoid mixed consistencies. Combine 1 packet Simply Thick (nectar) with 4 oz. juice/water. 40 cal/oz Elecare appears appropriately thick at this time.
  • Continue with open cup. May attempt spouted cup with decreased flow or open cup trainer.
So she graduated from half honey to nectar consistency and is not allowed to use any sippy cup (soft or hard plastic). I was glad I brought oranges! I had a hunch that once she bit into the orange, the juice would be too thin for her to handle. And indeed it was so she can't have oranges or watermelon or any other foods with mixed consistencies, like soup.

The best part of this appointment was about 3/4 of the way through we took a break. The xray video is a live shot and when the video stops, it'll freeze the frame. So during the break Cora saw herself on the monitor and kept pointing to the monitor and then back and herself, then pointing the monitor and then back at herself. She knew she was her on the monitor!! Clever girl.  :)

Monday, May 25, 2015

Evil Knievel

Earlier today I went upstairs to check on Cora, this is where I found her.

My Break! And Cora's Update

So Mom went home a week ago today and I decided that I would take the rest of that week off. No doctor appointments, no therapy - just some good quality time with the kids! I think it's one of the best decisions I've ever made. I was literally at my breaking point and couldn't do any more of it, I was hesitant to tell the Guild School about not going to therapy for the week but Cora's therapists were in total support of it.

I can't remember what we did besides the usual kid stuff - water day with some friends, playgroup, made treats, and a lot of outdoor play time. It was the most liberating feeling I've ever felt, I hadn't realized how much of a burden all of the appointments were. I think I'll be doing this on a regular basis, about once a quarter.

Lets see if I can remember the latest with Cora......there have been so many appointments I can't keep them all straight in my head. Some of the blood testing for mitochondrial disease came back abnormal so they want me to take Cora in for more specific blood testing and for a urine test. The only particular one I can remember shows abnormal ranges for metabolic disease. I did finally get the MRI's schedule but I'm hoping Lance will take Cora this time, I really don't want to do that again! One weird thing to note is that since the surgery/scope Cora has been drinking a TON of fluid. Like, 50-60 ounces a day, sometimes about 20 ounces in one sitting. It's highly unusual for her and I'm not sure if it's some kind of side affect from the anesthesia but it's been over a week and she's still as thirsty as ever. It's really strange and not like her.

Since taking a week off I've found myself really dreading getting back into the routine of appointments. I've had enough! So this week I'll resume therapy but I'm still going to hold off on the doctor appointments for a few weeks yet, I just can't bring myself to continue on.

10 Year Anniversary

I can't believe we've been married for 10 years!! Holy cow, that makes me sound really old. My friend Julie's sister watched the kids for us overnight while we retreated to Coeur d'Alene! We stayed at a little bed and breakfast that used to be an old schoolhouse. We took a paddle boat out on the lake and even did an aerial tour of the lake in a sea plane, Lance really loved that part. We ate dinner at a local restaurant downtown, did some window shopping, made a stop at a chocolate shoppe, went to bed early and slept in! It was really great and a much needed getaway!!! I love you, Lance!


Random Photos

This was Cora's swing last week at PT, it's actually quite tricky keeping your balance on it so it gave her a pretty good workout.
One evening a few days ago I was working out in the flower beds and as I finished up I went inside to take my gloves and boots off. I washed my hands and came out to check on the kids. I found them covered in mud! Kimball had quite the time getting Cora all muddy which I wouldn't normally bat an eye at, mud washes off. But she had all kinds of pebbles and dirt around her gtube so I was afraid of it getting infected. I couldn't get mad though, they were having such a good time!

  Water day with some friends! We had four families come play with us.



New swim suit that I found at the thrift store, she sure loves shoes and clothes!

Surgery and Mom's Visit

Mom flew in to visit us and help out with Kimball while I took Cora to her surgery. She only stayed Thursday through Monday so I packed as much shopping into there as I could. Thursday we went to the downtown mall, Saturday we went to the valley mall, and Monday we went to the north town mall. Mom spoiled me and I don't even deserve it. I'm sure she did it out of love and no matter the reason, I'm so grateful! It was WONDERFUL to have some girl time doing things that I love! Shopping, eating, talking. That's all I needed. I loved having her here and am so thankful she made the sacrifice to come. Unfortunately, I didn't get a single picture of her! My mom is the best. Period.
Friday was Cora's tear duct probe surgery, upper GI scope, and partial colonoscopy. The surgery went well and took about 5 minutes. The scope also went well and I thought for sure they'd find 3-4 problems since Cora has been refluxing a lot lately. They didn't find any bad news so now we wait to see what the biopsies show.

I really don't like the whole process of waiting and getting ready for the anesthesia. Cora had to be there 1.5 hours early to do her vitals and go over her medical chart. She was starving because she had to fast, she was tired, and so restless. She just cried the whole time and I couldn't do anything to console her. Before they took her back they gave her Versed to calm her down and I really hate that stuff! It might work to calm her down but when she was waking up from the anesthesia, she was so feisty! She was throwing herself from side to side, tossing and rolling, she was a little spit fire that's for sure. She instantly drank about 9 ounces of apple juice and was still so hungry but I had to wait for her body to process that before I could give her anymore to drink or eat. At least it's over and we have good news so far.
I'm not a fan of the pediatric surgery center because it tugs on my heart strings. It does put things into perspective and make me appreciate my own struggles. While we were checking in there was another Mom who was checking in her daughter. It was early at 6am and this mother was very pregnant, I'm assuming 8 or 9 months along. She looked tired and worn out and when she sat down I could see her child in the stroller. A beautiful girl about 4 years old with no hair. I knew she was there to get another round of treatment for her cancer and I just hugged my restless Cora even tighter.

Mother's Day

Lance got me these beautiful roses and published the 4th edition of Cox Chronicles. So grateful! And best of all, my own mom came to visit us that week!!!

Saturday, May 9, 2015

My Rock

A big shout out to Lance who's been so helpful the past several months! I'm exhausted and drained and he picks up the slack around the house and with the kids, usually when he's exhausted himself. When I had that horrible appointment at the neurosurgeon's office he came home with two king size Fast Breaks for me. What a guy, he knows me so well! And did I mention he's lost about 70 pounds?! He looks great! I'm just so thankful for everything that he does and I don't always say it because I'm too preoccupied with everything else going on. But I love him so much and would be lost without him. He's my Idiot and I'm glad he's mine. :)

Cognitive Intervention

On Tuesday Lance watched Kimball for me while I went to therapy with Cora, I haven't attended a Cognitive Intervention session yet so I wanted to see how the therapist was with her and what she works on. It's always so nice going to school, the best part of my week! This is part of one of the classrooms, it's a big building. In this sensory bin is a ton of beans and Cora and Charlie played so well together in there. Cora loved throwing them. Of course.

 My little climber.
She's so close to walking! If she had just an ounce of confidence she'd be up and running. One day it'll happen and I'm afraid when that day comes I won't be able to keep up with her! Kimball is her biggest cheerleader, sometimes he can be ornery but most of the time he's a great big brother and claps at her every achievement.

Play Date

This past Monday I watched Julie's kids all day so that she could rest with her little newborn. In the evening she and her husband joined us all for dinner, it was so fun! The kids had a blast and although it was nowhere near warm enough for a water day, the kids wanted to play in it anyway and we all had a good time!

 My child is the blindingly white one.

Kimball Says

I was in the kitchen and heard Kimball fall or drop something from the other room.
Me: Kimball, are you ok?
Kimball: Yeah, I'm just crazy!

Me: Kimball, what did you learn about in primary?
Kimball: I learned that I love......(looks around the room searching for what he loves) you, Mommy! (Ah, Mother's Day I'm assuming).

Cora's Update

Wow, this week has been a difficult one to say the least. It started on Wednesday with the neurosurgeon appointment. I had to get up early, wake the kids up, make Kimball's lunch and take him to the babysitter, and with my list of questions in hand I headed to the neurosurgeon. As soon as I got there I was shocked to hear Dr. Ling was out of town and that I'd be seeing a nurse practitioner. I relayed my questions to her and told her that I'm adamant about the MRI of her spine being done and she sent me on my way. I was a little confused because I wasn't sure if I should reschedule another appointment to see the actual doctor and she said no, the doctor will call you when he gets back on Friday. I was quite frustrated. The more I thought about it, the more upset I became and I was LIVID!!!

I've been waiting MONTHS to get in to see this neurosurgeon and he's the fourth and final doctor who's supposed to give the final answer about a spinal MRI. Yes, it was obnoxious that I had to wake up early and spend an extra two hours getting the kids ready and where they needed to be. I even packed a lunch for Kimball because I wasn't sure how long the appointment would be and Cora has therapy at 11:45, so I wasn't sure if I'd have time to pick up Kimball before therapy or not.

But the thing that really gets under my skin was that it had taken me months to get in to this doctor and he was the fourth one to evaluate her sacral dimple! I know I'm just a stay at home mom but especially with a special needs baby who has unlimited doctor appointments, I live by my calendar and I deserve a little bit of consideration and respect. I mean, at least some common courtesy! When I got home I was still really miffed so I called the office to tell them that a phone call would've been nice and recommend that they do that in the future. The receptionist was actually quite rude back to me so I ended up hanging up on her. When I do get in to see this doctor you better believe I'm going to put a bug in his ear about the office staff. When I think about it I'm still having a hard time shaking it off, but I'm trying to just forget about it and move on.

Thursday was neurologist which lasted all morning and ENT in the afternoon. I finally got home at 5:30, it was a long day! I brought Lance with me to see the neurologist because he doesn't really speak in layman's terms and I needed an extra set of listening ears. After recapping all the recent developments from the past three months, he ordered a repeat MRI of the brain, confirmed that there is an MRI of her spine to be done, and did a blood screening for Mitochondrial Disease. I'm glad he suggested another MRI of the brain because I was going to ask him for one anyway, Ginette thinks it'd be a good idea considering all of the recent changes. I don't know what the Mitochondrial Disease is and he didn't explain it, I'm sure because he didn't want me to unnecessarily worry, which I'm grateful for. However, he was pleased to see her progress and hear about her cognitive evaluation so there's a positive!

ENT found fluid still in Cora's ears from her recent ear infection. He sent her home on Mucinex and if it doesn't clear in three weeks then he'll end up putting tubes in her ears (which is a bit odd because it's only her first, maybe second ear infection. She doesn't get them a lot). That same appointment in three weeks she'll have a complete hearing test to check for any hearing loss. He also did a nasal scope into her throat and found the cartilage around the esophagus looked better and wasn't as floppy but there was a particular section that showed evidence of reflux. I'm sure the reflux was from her mysterious illness for 11 weeks that was shown to be food allergies. I know she can't throw up and the fundo is supposed to prevent the reflux but if there's enough force it can get through. I saw her retch on one particular incident when we were in urgent care. There's another part of her throat area that he saw was still floppy, pretty sure its the aspiration and dysphasia. He was pleased to know we already have a swallow study scheduled and a scope scheduled with the GI doctor.

This next week we have the swallow study and then the scope and eye surgery which Cora will be sedated for. I'm always nervous for any kind of procedure like that because she's such a high risk for anesthesia complications. But she's been sedated twice before so I'm sure all will be well.

To say that I'm completely overwhelmed with all of these doctor appointments is a gross understatement! They make for such long days and are exhausting, both physically and emotionally. It isn't fair to Kimball or Lance who get what's left of me at the end of the day because I'm much more grumpy and impatient. At what point do I put the brakes on and actually live life with Cora? When do I say no to testing and imaging? How do I decide which doctor to say no to and which to say yes? All of them work together on Cora and their charts interweave each other. I'm almost to my breaking point. I know I have to get through this week, I know the MRI's need done, the hearing test, and possibly tubes need done. Cora doesn't really have any "follow up" appointments where you talk about the weather and if she can recite her ABC's. This is all major stuff and it all needs to be done. But really, I'm about to my breaking point and I'm not sure how much longer I can keep up like this. We usually take it day by day but lately I've had to take it hour by hour. I always look forward to nap time and bed time, but I'd really love to look forward to play time or story time. I'd love to do the normal things with Cora instead of packing her up for one appointment to the next. Poor girl, she's such a sport and so happy. No matter how difficult this is, it is a road that I've been asked to walk. I don't know why and I really wish I knew what Heavenly Father's purpose is in all of this, I just have to hang onto that sliver of hope and keep the faith.

Monday, May 4, 2015

Cora's Update

The appointments finally slowed down a bit, only one in addition to therapy last week and thank goodness because I definitely needed a break from all that. It was getting to be too much and I wasn't handling life very well. I was tired, impatient with the kids, grumpy and snappy toward Lance, the house was a mess, and dinner was never cooked. The next two weeks however we see the neurosurgeon, neurologist, two scopes, a swallow study, and surgery all in addition to her therapies. Oh boy......I can do this, I can do this, I can do this.......

I should get Cora's reevaluation results this week and I'm anxious to see how she's doing. She actually made a sound in therapy - twice! - so we're making very slow progress there. Her physical therapy has really plateaued and hasn't made any progress in about five months. Ginette has worked really hard to get her ready to walk into the neurologist's office this week since he's the one who said she would never walk. She won't be walking in there but she's close and has been close for five months. One day she'll get it!

I've been giving diluted juice or koolaid instead of her water and she drinks it up instantly! I don't have to do water boluses anymore through the g tube and she's never been this hydrated before so she's doing great! We had a follow up appointment with the allergist and I have to continue doing the wheat, dairy, egg, and beef free diet for at least another three months. Pulmonology changed her lung medicine although I'm not sure she needs it. Ophthalmology is doing a tear duct probe surgery next week to fix her tear ducts. Finally! I'm so tired of all the comments about her eyes. Her vision is good although when she's looking at distances, her left eye does wander a bit. If it continues to get worse they will also do surgery on that in about a year or so. That's all I can remember, the rest of her appointments are a big blur. Too many last minute/not scheduled appointments to the pediatrician or urgent care. A lot of chest x rays, steroids, and antibiotics for both kids......I'm so tired of this! 

Oh, and MOM IS COMING NEXT WEEK!!!!!!!!!

Summer is Just Around the Corner

Spring Barbershop Show!

Date Night!

After several months Lance and I finally got to go on a date! We were given tickets to a swing band concert honoring Bing Crosby who's from Spokane. The concert was held at the Bing Crosby theater and featured a few relatives and friends of his, it was a really fantastic show! Although Lance ended up getting a call and we had to leave early, it was some much needed couple time together!

Beautiful Sunset


She is SUCH a little climber, two baby gates can't keep her from the stairs.
 She was supposed to be drinking her milk, not playing with Daddy's ipad. Cheeky!

 Her favorite place to play Peek A Boo.