Lots of Tears

I have been shedding many, many tears lately.  The Botox completely wore off a couple of weeks ago, and I'm in pain almost daily.  The pain is severe usually and does not respond much to my Imitrex.  I am having many heart issues because of the Imitrex, and I don't know if they are dangerous or just feel horrible.  My stomach is also not happy that I have to take so much pain medicine, and it has been feeling so painful that I can't stand up straight sometimes.  It feels like the medication to help my pain is slowly killing me.  I have tried many other meds, and none of them work at all.  I finally broke down and talked to Kevin last night, through many tears, about what he would do with the kids if this takes my life.  Thankfully, he told me he would move with the kids to be with my family so they could help him with them and he could work and be with them.  My parents are only in their 50's, so they are still very able to care for the kids. My prayer is that God allows me to live so that I can be their Mommy.  I'm down to about 92 lbs, which is definitely too low again, but there is really nothing I can do about it.

I called both BCBS and the Neurologist today.  BCBS told me it takes them 2 weeks to look at the paperwork they asked the Neuro for and decide whether to approve it or not.  Then, the Neuro can only order the Botox after it is approved, which takes another 5 business days.  So, I'm looking at 3 weeks or more before I can get it, and I was supposed to get it in 2 days.  We even told the Neuro we would just pay the $1,800 out of pocket just so my pain would lessen.  They will not let us for some reason.  I'm stuck...in pain...sick from meds...racing heart...torn up stomach.  I'm miserable.  I even told the Neuro's nurse about what is going on with my body, and she told me she would call me back after lunch and never did.  I even told her it feels like I'm dying.  My heart is not right.  My dad had a heart attack at 37, and I'm now 37.  I don't know if my heart is strong enough genetically to handle this much Imitrex (over 20 a month).

When I got on FB this morning, this was my Pastor's Status: "Give us gladness in proportion to our former misery! Replace the evil years with good. (Psalm 90:15 NLT)//Prayer for someone"

God really spoke to my heart, and I wept as I read that.  I pray for a restoration of these years.  I pray for gladness to replace the memory.  I told my mom tonight that I would rather live every day in pain and be with my children than to die and not be with them.  I won't give in because of my pain.  It's hard, but I'm fighting for life...in more ways than one.

House

"House" really impacted me last night.  I was almost in tears.  Wilson has chosen not to do chemo to give himself more time to live because he didn't want the remainder of his life to be lived in suffering.  House made some kind of statement about living in pain every day.  I about lost it right there.  I do live with pain.  Someone else made a comment about why we choose to live with pain.  We live through it for those we love.  THAT is what I do.  I focus daily on the little ones God has given me, and I keep moving forward.  As the Botox wears off, I am on the couch or in bed most of the time right now.  I do my best to do fun things with Jule when I have a good day, and I'm glad he won't remember these times much.  I hope my life impacts them to live a life for God.  No matter what comes at them, I pray they choose to live for Him.  Even in pain, I pray they choose Life...The Way, The Truth & The Life.

Hello, Old Friend

Thursday night, I heard a familiar sound coming from Jule's room.  I thought, "Here we go."  I was so excited to find that we had not seen our friend, Croup, in 8 months!  I was also pleasantly surprised that Jule had a very mild case.  His breathing wasn't compromised, he wasn't dry heaving or vomiting, he wasn't overly upset, and we definitely did not need an ambulance or the ER.  He just kept looking at me like, "What is going on?"  He seemed more confused than anything.  I told him he had croup, and the steam would help him feel better.  He did not sound great through the night but also did not sound compromised at all.  He got worse on Friday after his nap and needed some oral steroids, but even that was not too bad.

I'm very thankful that he has been doing much better!  He also potty trained recently without a lot of effort.  He's had just a few accidents but pretty much took to it right away!

Disney and Neurologist

We had a great time in Disney!  Noly lost one tooth the night before Easter then pulled out the second one at a hotel near Disney.  Tinkerbell brought her a special little gift for that ;)  Both kids had a wonderful time, and I only had 3 total days with migraines.  Only one of those days knocked me down for several hours.  The others were more tolerable.

I went to the Neurologist yesterday for my follow-up, and I told him I have overall had a ton of migraines since the shots.  However, in the past two weeks, things have been improving.  It is like a light switch.  He said he has seen the shots take 5-6 weeks to kick in fully before.  He is setting me up for my second set of injections in the beginning of June.  In the past two weeks, I have had only 4 days where I've had to take Imitrex.  That is a drastic improvement.  I am praying it continues.  It completely broke my heart when Noly told me a wish she made in Disney...that Mommy's head and tummy would not hurt anymore.  I wish she didn't know they hurt.  I do pray that her wishes come true :)  Such a sweetheart, and I want to one day tell her fully how GOD brought me relief from my pain and sickness.

Psalm 71:19-21

"Your righteousness, O God, reaches to the highest heavens.

You have done such wonderful things.

Who can compare with you, O God?

²⁰

You have allowed me to suffer much hardship,

but you will restore me to life again

and lift me up from the depths of the earth.

²¹

You will restore me to even greater honor

and comfort me once again."

This passage was part of my daily reading today, and it really spoke to me. Part of our worship set for this weekend is "Love Came Down" by Brian Johnson, and the Prechorus says, "I remind myself of all that You've done, and the life I have because of Your Son." I was thinking about what a difference it makes going through all of these hardships when I have God to rely on. When my son is lying sick in a hospital bed, God is my comfort. When my head is pounding, and it feels like there is no relief in sight, God is my refuge. When I view my circumstances in light of eternity, God gives me hope. I can't imagine what it would be like to go through all of this alone...without Him constantly there by my side...without being aware of His presence regardless of my feelings at the time. Even when something inside of me freaks out, I still know He is there and has us in His hands. I have seen His mercy, favor and provision multiple times and know I will continue to see them in the future. Sometimes, it's as simple as just looking for them.

Jule has been doing well. Almost every day, he says that his tummy hurts, but he is not crying at all about it. I think it's just something he says now as a reaction. It will be obvious if he has pain from Intussusception. I'm very encouraged that we have not been in the ER in a couple of weeks. That doesn't mean it won't happen ever again, but at least we are not constantly running to the ER. He is such a delightful little boy, and I hate seeing him in pain.

Noly is doing great in school. She's in kindergarten and is reading way beyond her grade level! She definitely shows an artistic side, and even her teachers have noted it on her report cards. She has her first two loose teeth, and they seem to really be hanging onto her gums. They've been loose for 2-3 weeks now.

The Doctors have finally found a good med combination for Kevin's narcolepsy and ADD. It helps a lot when he is driving long hours for me to know that he is not likely to fall asleep. It is very scary to have someone who falls asleep tying their shoes drive for a living! I think he is feeling much more like he is present in life too now that he is awake and alert.

I have had 3 days with no Imitrex (hardcore migraine meds). I have had a couple of slight migraines that a lower-dose, easier-on-the-system med has handled. It is supposed to rain tonight, but I am hoping that I can get through it without intense pain. I'm still up in the air about whether or not the Botox helped or not. BUT we have until June to really see and can decide whether or not to do the second set of injections. This week, I was able to purchase a ticket for an online performance by Edwin McCain on StageIt.com. It was awesome! It's like your own personal concert in your own home. It lasted about an hour and made a slight migraine go away. His music really speaks to me, and I'm really excited that he will be doing it again in April. I pretty much live and breathe music, and I either really like bands/artists or really dislike them :) We will be going to Disney soon and will be able to spend about 6 days there this time. Since Noly was born, we have had to do quick trips because I have had very limited time off of work with all of the kids' and my sickness. So, it is very exciting! We'll only spend 2-3 days at the Parks, but we really need the down time as a family to just be and play together. Hope everyone has a wonderful weekend!

Short Updates

Jule has been doing well since his last ER visit. We continue to watch him when he says his tummy hurts, but he has not had any pain that made him cry since that Sunday night. Praise God!

I am, however, not doing well at all. I have had 43 migraines in February and March alone, and I've taken 37 doses of Imitrex. Insurance only wants you to take 9 each month. I'm having some major problems with Serotonin overload, but the Neurologist told me to try Benadryl for that, and it has helped. The pain has been overwhelming, but I'm doing what I can when I can to have fun and to make sure Jule gets out and has fun. I'm praying for relief. We are planning to go to Disney in the future, and we will be there for almost a week to hopefully have a couple of days when we can go to the Parks. I want the kids to have a fun vacation, and I want to be able to enjoy being there with them. Disney will only be mind-blowing to them for such a short time in their lives, and I love to watch them experience it! I hope this is making sense :) I'm still praying God will take the pain away without meds, but if it takes meds, that's ok with me too.

Relapse

Last night, Jule began screaming in pain again. He had been saying his tummy hurt all day, but he had not cried at all about it. The screaming started very abruptly. So, off to the ER we went...again. Kevin was prepping for a colonoscopy screening, so I knew I had to take him down there alone. It was a struggle for me because the stress of seeing him hurt triggers a pretty quick migraine for me.

Kevin's sister was able to come down and meet me, but Jule and I did ok together. The intussusception corrected on its own again, which is good. The problem is that it recurred. This means it could happen over and over and over again. We are praying that it does not. I hate seeing him in so much pain. It feels like we got over the croup hurdle only to have another, even more serious, medical issue. This one has no known cause, and the solution depends on each occurrence.

As I was sitting in church Sunday, I felt so dead and so beat down. I sang the songs and listened to the sermon, but I felt so blank. I did not know how to keep doing this. I remember God speaking to my heart just a little over a year before Jule was born, "It won't be easy, but I will bring him to you." It's not easy, but I love that God brought him to us. I realized I can prepare for different scenarios. For now, my purse is his diaper bag, and I will have changes of clothes in the car in case he is unexpectedly admitted again. BUT, my preparation could easily be a replacement of reliance and trust in God. It's ok to prepare as long as my trust is not in the preparation. It's all in God's hands...the One Who created this sweet little guy's intestines in the first place. I feel very inadequate due to my physical limitations, but God is so faithful to provide what we need when we need it. Please say a prayer for our little Jule...that we will see no more incidents and that he will be free from the pain of intussusception.