Snake Cake & and POTS Update

So much has happened since the last blog post. First and best, we had Logan's 8th birthday! I sent cupcakes to school on the Friday of his birthday and we will be having his birthday party with family later. It is hard to believe how fast time flies, even when I feel like it doesn't move fast enough.

We visited "home" February 11-13th. It was so nice to be back with family and friends. We had a busy few days around the Clay Center and Manhattan area and I can safely say I do NOT want to travel with the boys for a car trip anytime soon. It was so nice to get to see our dogs for awhile. We miss them so much. They always have a way of making me feel better and just being cuddly.


Monday morning, Logan, Malachi and I ate breakfast at Tasty Pastry. Man I miss those donuts! Their nut rolls are something to drool over.

We visited friends and made our way back to Milford where Naomi, a great friend/sister, lives. She watches my niece and nephews while my sister works so I got to see them also.

They had just gotten a lizard and it naturally just liked Malachi. I wonder if he has a "sense" about him that just attracts those kind of things.

Logan bought a new "milk-drinking" glass for his upcoming birthday. :) Lets hope he always uses it for milk. :)

Our trip back home was full of melt-downs and screaming. I was never so happy to see Shawn again.

The very next day we had fun at the museum again- here they are feeding the mice and maybe petting a few of the babies. They are so darn cute! :)

Malachi has really started to want to write and draw a lot more. I'm so proud of him. Up until now he really hasn't wanted to do much for "school" but I'm so impressed with how his letters and numbers look.

Malachi is learning new ways to entertain himself (and me) on the days I spend in bed. Here he is giving me a "pet show." :)

I had lunch with Logan on his birthday. School food here isn't all that bad really! He also got exactly what he wanted for his birthday- a Kindle!


Finally, the snake cake. Since Malachi's birthday (and both boys' party) is coming up, I wanted to practice making a snake cake. We were invited to a celebration at the museum for volunteers and staff so I thought it would be the perfect time to practice. I was so surprised at how easy the cake was to make and I was thankful for the compliments that I got from it. It did confuse Malachi a little as he thought this was his birthday cake.

We had a fabulous time at the museum and love all our friends there- furry, scaling, and human. :)

This is the point that my mom usually stops reading. . . you know- after the pictures run out. :) Just kidding. I did have my cardiology appointment here in Hays today. The good news is that the ablation did slow my heart rate down . . . a little. While it was consistently in the 180's, now it is in the 130's. That is an improvement, yet still not to where it is going to make me feel better. The doctor said that we seem to be in uncharted territory right now. This is not news to us but we were praying for better news from the pacemaker procedure. We prayed that it would be MUCH better by this time. However, there are still some options should we decide to go down this path- first of all we are going to try small doses of some of the medicines I'd been on previously (and failed). I feel like we are running in circles. Trying medicines again. . . trying an ablation again. . . trying a different pacemaker. . again. :( This is NOT a curable disease and I am beginning to think I'm chasing a hopeless dream of health or at least curing the worst symptom. Shawn and I are left wondering what we do- do we continue to try to get into a clinical trial or do we try to hope that future surgeries would be more successful? Please continue to pray that we find discernment in our decisions as well as healing.

Happy birthday Logan!

I had lunch with Logan today at school for his birthday. Hopefully tomorrow I can catch up the blog for the past week.

Hurting and Healing

Normally, I try to find pictures to post for my blog. I apologize in advance. This post is plain-Jane just the words. (Sorry mom, who usually just looks at the pictures anyway.) It also helps me to focus on what is going on in our lives with the boys (who are the main subjects of the pictures). Well, I have been hurting more in the last week- localized back and hip pain and the whole body fatigued/flu-feeling pain. It's difficult to think about it being worse, when really I did experience a few days of relief (not sure from what but it was welcome). It is sometimes the most frustrating to wake up feeling awful after a few days of a slight reprieve from this sickness.

I'm so tired of being tired.

I'm so sick of being sick.

Last night as I was praying, I thought about a person I was praying for and how they are experiencing cancer right now. It breaks my heart for what they are experiencing and I wish I could take it from them. Then I realized that God feels the same way about me. While it's difficult many times to not want to blame God, I know that He is loving and wants my healing as much as I do. I don't know the reason for this, but He does and I need to rely more on the faith and trust in His will for my life. I've suffered this for about 5 years now yet in the grand scheme of things is but a blink of the eye.

To be honest, most days I wake up angry, bitter, consumed with sickness and an easy target for Satan to play with the weakness in my mind. I am angry that yet again God "didn't answer my prayers." But He does answer prayers- although not always with the answers that I pray for. I yearn for healing in whatever form it comes in, yet I'm thankful that during this time of sickness that I can be present (even if I'm not active) in my children's lives.

I don't really know what will bring my healing besides a miracle from God. I have chased about every possible human invention or "cure" for this disease. Over the next month I will be going to several check-ups to plot the next "game-plan" and course of action to slow this disease down. It would be nice for my heart to slow down. Rest is but a memory at this point. A medication that I've been on for 3 years now has been giving me awful side effects in the form of very vivid and horrific nightmares.

If you are a praying person, I would greatly appreciate your prayers during this time. Satan has been attacking me in my weakness and trying to make me feel like a burden and useless. Normally, it is easier to recite scripture and ward off the negative emotions and thoughts but lately, as I hurt physically, my spirit is weak. I appreciate the prayer support and know that God is working in the details of my life.