Sunday, June 28, 2015

Excerpt From My Talk (for me to remember)

'Before Cora was born we knew that she had a heart murmur but nothing else. In due time we’ve discovered that she has 2 heart defects, 2 brain abnormalities, and 7 gastric or digestive problems. She has a number of developmental delays. We just heard a week ago that she has mitochondrial disease and potentially needs another surgery to correct her tethered spinal cord. (We now know she doesn't have either of those things). She sees 13 specialists, 4 therapists, and a dietitian. The imaging and testing is endless and it seems that all we do are go to doctor appointments. We average about 7 appointments every week. The last 18 months this has been my greatest trial.

So on one hand I have faith and I have a testimony that the Lord does work miracles, and I trust in Him and in His plan and I know that He has a purpose for Cora. He is just as much her parent as I am and I know that he created her body.

On the other hand, I go to appointment after appointment and am constantly told that Cora will never walk or talk. She will never accomplish this or that and she will never be normal. When I go home after these appointments I have be realistic: I am a special needs mother and my child cannot physically do things that normal children can do. No surgery or medicine can fix that. I don’t have all the answers and I don’t know what the purpose is in this. I have pondered and cried and cried some more.

And so I have these two conflicting point of views and I don’t know how to get them to mesh. But I received my answer from the last general conference. Elder Nielsen gave an awesome talk about the prodigal son and he said regarding that: All of us fall short of the glory of the Father. All of us need the Savior’s Atonement to heal us. All of us are lost and need to be found…. We watch, we pray, and we wait for the Lord’s hand to be revealed.”

And so I  watch and I pray and I wait for the Lord’s hand to be revealed. It may not and probably will not happen in this lifetime but I continue on with hope, because what else is there if we don’t hope?

"Wherefore, ye must press forward with a steadfastness in Christ, having a perfect brightness of hope..." 
-2 Nephi 31:20'

Tuesday, June 23, 2015

The Latest Tidbits

Lance has been quite busy at work which has been wonderful when you are self employed! The first two months of starting the business were a bit slow. The promise Caryn made to give him the business of the four funeral homes didn't happen so Lance was quite upset about that. He stewed and stewed but he knew he just needed to keep his cool and be patient, trusting in the Lord. At the beginning of June he finally got all of the calls for Neptune, exclusively, which means in the last 2-3 weeks he's had more than double the call volume of the previous months. What a blessing! He still doesn't have the calls, exclusively, for the four funeral homes but will do some every now and then. Today, he just gained the business of Hennesey which has two locations. His good reputation and strong work ethic is spreading to the little funeral homes in surrounding towns. Certain police officers and care givers are requesting and insisting on Lance doing the removals. It's such a great blessing and in the nic of time, things were certainly getting tight from the first 2-3 months! Lance works so hard, is honest and genuine, and definitely has a heart of gold. I'm so thankful for him!

I was in urgent care last week with bad abdominal pain and found out I have gastritis. Now I need to see a GI doctor and have an endoscopy done. I think it's probably brought on by stress but I'm glad that a dose of Prilosec will alleviate the pain and vomiting. The last few days I've had beastly headaches, like I almost went to the ER because it was SO bad. Part of it is my paranoia because we've heard of 3-4 young people diagnosed with cancer in the last month so I'm imagining the worst. When I go to the doctor I'll bring that up as well, I'm sure it's just my neck being out. I threw a baby shower for my friend Jean, it was so fun and she deserves it, this is her first baby and she's one of the most gracious people I know! I was released from my calling as Visiting Teaching Coordinator and put in as a sunday school teacher of the youth ages 15-18. I love this calling and I'm so glad to learn from the youth, we've got really good kids in our ward. I'm so eager to learn from them!

Kimball is definitely nearing the age of 4. His personality is starting to change a bit but he's still just the funniest kid I know. Man, his facial expressions leave me in stitches everyday! He loves playing with Cora and every morning he'll get toys out and climb in her crib and they'll play for a few hours together in there. It's so sweet!

Cora has been picking up sign language pretty well the last few weeks, she wants to know more but I don't know any more signs to teach her. I need to check a book out from the library. She's on track to remove the gtube any day but we'll probably wait until the end of summer. She's still not walking, she just can't seem to get over this physical therapy rut that she's been stuck in but one day she'll get there.

*****Next week we leave for vacation to Twin Falls! Lance will come home after the July 4th holiday weekend and the kids and I are staying for 3-4 weeks again. We are all very much looking forward to a break, getting to meet THREE new family members (Steph, Trish, & Christine's babies), having a change in routine, playing with cousins, etc. It'll be so awesome!!!

Kimball Says

Lance had a 15 minute lesson for part of the primary activity last week and he was talking about Jesus and the 2 loaves and 5 fishes story. He was supposed to bring a "memoir" for the kids to put in their burlap sacks so he brought some swedish fish. Kimball was really excited about those fish. On the way to the church:

Kimball: Daddy, what's the fish for?
Daddy: I'm taking it to the church for our primary activity.
Kimball: (Eye's quite wide) For me and Jesus?!

Lance was in CA for two days on a removal last weekend and wasn't able to make it to church. Lance usually takes Kimball to primary and bribes him to stay there by giving him gum. I knew Kimball would have a hard time staying in primary without Lance so I asked the primary president to take him to primary since I was teaching sunday school during the second hour. After church Kimball said the prayer over lunch:

Kimball: And Mom didn't give me any gum in church today. Amen! (Said with quite the disappointed and upset attitude. Talk about the ultimate tattle telling.)

Cora's Update

I have not returned back to the regular seven appointments a week and I don't think I ever will. That was INSANE and I can't believe I kept that up for 18 months! So Cora and I do about one doctor appointment a week in addition to her four therapy appointments, it seems so much more manageable that way.

Recent test results
  • MRI of the brain - everything is normal and the two brain abnormalities are still there but unchanged, which is good
  • MRI of the spine - normal, no spina bifida or tethered cord
  • Blood tests - the first round was positive for Mitochondrial Disease but the second round and urine sample that tested for more specifics of the disease were negative for Mitochondrial Disease
  • OAE test - hearing test passed and ears were cleared, no tube surgery
  • Gtube - still on track to be removed at the end of summer-ish
Finally some good news!

Random Bits

Oh man, this boy! Dad's work socks and shoes, it doesn't get much better does it?

My friend Chris and I made these shirts for our kids. We are officially ready for Independence Day and ready for our vacation home next week! You can barely tell which is Kimball and which is Cora's, I guess I'll have to start writing initials on shirts.

Summer Lovin'

The Fruits of Our Labors

We are in absolute love with our yard! There's so much lush grass and room for the kids to play and the tire swing is a dream. The previous homeowners did an excellent job with the landscaping, we have beautiful flower beds and a wonderful weed-filled garden (because we didn't plant anything this year). The raspberries have come in by the bunches and I pick about 2-4 pounds every other day. We can't eat them fast enough!