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.

Intussusception

Jule was doing well on Saturday and Sunday and most of Monday, and everything went downhill when we went to the bus stop. We stood waiting for the bus...about 2 blocks from our house...and he started screaming that his tummy hurt and that he couldn't walk. Thankfully, Noly's bus arrived on time, and I carried him as far as I could to the house. He had to walk part of the way because I can't physically carry 40 lbs, being under 100 lbs myself, for very long.

Once we got home, he would cry and scream for 10 minutes, then be calm for 10 minutes. I would take him to the bathroom because he was kind-of gagging, and he would cry and scream then collapse asleep in my arms. I would then put him on the couch and let him sleep until it started again. Kevin had just driven 3 hours away earlier in the day, so I was alone with the kids. Jule was very clammy and pale but no fever. After about two hours, he vomited a lot. At that point, I was thinking maybe it was stomach cramps and a tummy bug because he became happy after that. So, while I was stressed out, I wasn't overly worried about him. Then, as time went on, he started moaning and crying more, only gagging and vomiting a little. I told Kevin I needed him to come back home because I couldn't do it alone. I had a migraine, Jule was hurting, and Noly is phobic of vomit. As Kevin was driving in, I felt very uneasy in my spirit. I felt like something just was not right, that it may not be a tummy bug. The minute he walked in, I told him I felt Jule needed to go to the ER just to be sure this was only a bug. He looked at me a little confused but quickly agreed when I went over our evening.

I thought they would come back home because I was just overreacting, but I found out around 2:30 am that Jule had Intussusception. It's like your intestines folding inside each other like a telescope...kind-of like a blockage. When it occurs low in the intestines, an air enema can be used to blow it back into place. Jule's was seen on ultrasound, and it was too high. So, he had to be admitted for observation. They said he would need surgery if it did not correct itself. I think he was in a room by around 5 am, and they did another ultrasound at 9 am. By then, it had corrected! We were very happy! He had to stay one more day because he would not drink to hydrate himself, but he was doing much better by Wednesday. He has been his crazy little self ever since. His case was caused by swollen lymph nodes in his abdomen either from a virus or even from his recent ear infection. It may or may not reoccur, which makes me a little uneasy right now. However, all I can do is pray for discernment if it does happen again and pray that it doesn't happen!

Today, I have been falling apart more emotionally because I had to put on a strong face for both kids. I put in my faithful 4 Him cds and found so much comfort once again in the words blasting out through my car radio. Our God is faithful. God protected Jule and I believe directed my heart to send him to the ER. He keeps our sweet little ones in ways we cannot even see. The only way I'll ever be a successful parent is by relying on Him. As I sat by Jule's hospital bed for a 3rd time in his 3 years of life, I read aloud Psalm 91 over my baby:

He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty.

I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust.

Surely he shall deliver thee from the snare of the fowler, and from the noisome pestilence.

He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler.

Thou shalt not be afraid for the terror by night; nor for the arrow that flieth by day;

Nor for the pestilence that walketh in darkness; nor for the destruction that wasteth at noonday.

A thousand shall fall at thy side, and ten thousand at thy right hand; but it shall not come nigh thee.

Only with thine eyes shalt thou behold and see the reward of the wicked.

Because thou hast made the LORD, which is my refuge, even the most High, thy habitation;

There shall no evil befall thee, neither shall any plague come nigh thy dwelling.

For he shall give his angels charge over thee, to keep thee in all thy ways.

They shall bear thee up in their hands, lest thou dash thy foot against a stone.

Thou shalt tread upon the lion and adder: the young lion and the dragon shalt thou trample under feet.

Because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name.

He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him.

With long life will I satisfy him, and shew him my salvation.

Ouch!

Today was Botox...ouch! The injections did hurt, and there were somewhere around 30 of them. I am still in pain at all the little injection sites, but it is not unbearable...just uncomfortable. I guess that this is heaven compared to some of the side effects I've had from the preventive pills :)

I was utterly exhausted today from waking at 2:30 with a migraine, then getting up with both kids before the alarm even went off for school, then taking more migraine meds, getting ready, getting Botox, etc. I knew Kev would be in by 6, and I was counting down the minutes. It was about 4:45, and Jule started acting really odd. He hadn't eaten lunch and had said his tummy hurt. All of a sudden, he was laying on the couch in a ball wailing that his tummy hurt. I took him to the bathroom thinking maybe he had a bug and realized he would not walk or stand up straight. I took him to the livingroom to watch cartoons, and he just fell to the floor in a fetal position. Kev and I were both very concerned about his appendix, so Kevin ran him in to a Doc in a Box. Poor boy...they discovered that his ears are worse after 9 days of antibiotics. Also, his white blood cell count is up even though he's on antibiotics. He was also crying when the doc pressed on his abdomen, so she was going to send him for an ultrasound at the ER. I talked to our Pediatrician, and he called the doc. We made a decision to wait and see how he did before taking him to the ER. The Ped said stress and being upset can raise a child's white blood cell count. Both the Ped and the Doc thought maybe constipation or pain from the antibiotic.

He is home and acting normal again. I am so, so thankful to God for a Pediatrician we trust and who cares about us and also loves God! Jule brought us much closer to our Ped through our numerous visits, and God has truly blessed our socks off. All of this has made me NEED SLEEP! So, I am going to try to get some good sleep tonight. Glad my baby seems to be ok for now and glad my side effects are tolerable!