Malachi is getting better!!!!!!

The title of this post says it all! After a steroid and an antibiotic shot yesterday, this boy had his first fever and cough free night in a long time.

New Pets and a Rainbow

It seems like my blog posts aren't completely posting from my email/phone. Pictures are out of order and some of the sentences/explanations get cut off. Maybe that is the internet's way of keeping me short with my stories! Lol.

Today was LONG!!!! We didn't sleep much last night. Shawn slept with Malachi on the couch but I still heard the coughing all night. The poor kiddo still has a fever and horrible cough. We will be taking him back to the dr tomorrow. He's a fighter when it comes to taking medicines and since he has a long regimen of them right now, I told him we would buy him some fish. Here are his prizes. ;) he even got a pet crayfish!

Tonight when we were returning from a friends house, we saw this beautiful rainbow in the middle of a rain storm. It shows the beauty of Gods bounty here in Kansas. I know sometimes the rain is annoying but it is such a life-giving source and this rainbow was a reminder of God's provision in our lives.

Malachi has felt pretty crummy all day. He just wanted to lay down and rest. He even took a nap and refused to get up when offered a snoball!!!!! (A sure sign of sickness when this kid sleeps AND when he refuses a sweet drink!) 

Home sweet home

Ah...... It feels amazing to be home!!!!! It was such a dreary and rainy day but we made it home and slept in our own bed! We met my parents in Salina on Saturday to pick up Logan and Malachi. Malachi has still been pretty sick. As soon as we got home yesterday, I laid down and fell asleep. I awoke to him screaming about his shoulder hurting. It has been hurting all week and I just assumed it was achy from the fever but he was almost hysterical about the pain so we hurried and took him to urgent care since they closed in 1/2 hour and I didn't want to wait for the ER later. The dr saw a significant amount of swelling on his shoulder area- most likely inflammation from whatever virus he is fighting. Hopefully the antibiotics will kick in..... I'm not a patient person. ;(

Thursday- Homeward Bound Soon

 Thursday recap- posted on Friday. 

The Drs today mentioned going home!!!! I can't wait! I'm so homesick! Long days in a hospital room can drive one batty! Thankfully we have been able to stay with my moms cousin. It has been such a blessing to get to know her and her husband better. 

 I'm soooo grateful that we brought my wheelchair! Although- I think maybe shawn was more thankful as he used me as a luggage cart! 

  Today's appointments were pretty informative and productive. Zach continues to have reactions on his back which the nurses and doctors were pretty interested in. I guess they haven't seen such severe delayed reaction. Usually kids backs are clear after their skin tests but Zachs still looks like this:

 One of his doctors brought in the weeks lab results and discussed zach's immunoglobulin (E) levels and while a normal range is 0-100, his is 1300!!!! It shows what we kinda already knew- that he is highly allergic to things/ mostly environmental. 


 Some other news was the radiologist confirmed that he does indeed have polyps in his nasal cavity- and it could be indicative of cystic fibrosis so we are still waiting for those test results. It's not real common to see the polyps in children so zach will be on a special nasal medicine to see if we can shrink them. Otherwise our next option is an ENT dr for a surgery to remove them. Our hope and prayer is that in time the medicine will be effective in reducing the size of them. 


 Zach had a running test yesterday and it ruled out asthma officially! (He had a previous diagnosis from our Topeka allergist.) so it is possible he outgrew it. That in itself is such a blessing because asthma on top of such severe allergies would prove to be incredibly difficult to manage. 


 So we have some good treatment options- lots of meds and really keeping on top of being aware of his symptoms. We went to the science museum yesterday for about 1/2 hour. It was so neat and both my "kids" had a fun time!

 Tomorrow we have our discharge meeting and then will be off to kansas! It's been rainy and cold all week and I still am not sure there are mountains here! 

Wednesday- homesick

Wednesday..... Homesick

Today has been another cold, rainy, dreary day here in Denver. I may never see the beautiful mountains! It sounds like our friends in hays are experiencing the same type of weather. Our neighbor has sent us some pictures of our dogs and another friend has sent us a few of Moses. We sure miss home. 

My parents reported that Malachi has been doing better today. I'm praying he's on the downhill slide of whatever he had. 

Today has been pretty busy and full of appointments and meetings. Shawn took the morning ones so I could rest. Thankfully there is an extra bed in Zachs room. They spent most of the time in between appointments playing games together. This time has been nice with zach despite the situation. He has really enjoyed ordering his own meals and being served. Hope he's not getting too used to that! Lol

There is a Chick-fil-a across the street so shawn and I like to eat there. We spent the time between appointments reading for his classes. 

Today, the consults were again a bit discouraging. We were told it's a complex case- exactly what Drs kept telling me when I was searching for answers. It's sooo difficult when things are happening and it is not a textbook case. We will get some results later this week from his testing this morning to see if he has a more serious illness going on. (Praying it comes back negative.) 

Zach had another skin test this afternoon and it wasn't quite as bad but still welted up a bit. We will also get those results tomorrow as well. He continues to have reactions from them so we are praying he can have some relief soon. 

Zach ended his day having another pulmonary function test but this time they were giving him medicine to invoke asthma. I think he did well on that test and might be able to rule out asthma! (Maybe- we get those results tomorrow also.) 

The day was just exhausting. I did rest a lot on the spare hospital bed but I think I'm just overly worn out. Praying we can go home soon! ;) 

Tuesday- another LONG day

Today was almost full of tears. I think the exhaustion has just got to be too much and it just was weighing so heavily on me. Last night when I called to check on the kids, Malachi had a pretty high fever despite meds. I just felt so hopeless being so far away and having him be so sick. Before we came out here I had just a peace with things knowing that so many things were out of my control and I needed to rest in His promises that He would be with us. I knew it is pointless to stress about things I can't handle but part of me wanted to just take that back from God last night. I was so frustrated. The Ronald McDonald house was full and it didn't sound like they would have openings. And then this happened also. Just each little hurdle was wearing me down.

We awoke this morning and my back was itchy. I had shawn take a picture of it so I could see it and I was broke out in hives.

Zachary woke up a short time later and was complaining about his back. Sure enough he was having a reaction from his skin test yesterday. This was not a common occurrence. The doctor was pretty interested in it and took pictures and drew on it to measure it through the day.

We had quite a full day of tests. I'm writing about it here to inform others but also as a way that I can remember. We had a long psych meeting. Since asthma and allergies are chronic, each kid has a counselor to help them deal with the emotional issues that go with having a chronic illness. She was super! She even gave zach some homework.

Zachary had a CT scan this morning of his sinuses. It came back with some abnormalities and requires some further testing the next couple days. He also had a blood lab draw and did great- of course the nurse numbed him up with lidocaine because he's quite scared of needles.

This afternoon, shawn and I attended an asthma education class. It was pretty informative and the teacher was really kind. Zach stayed back on the unit to watch movies and play the phone. He did his first nasal rinse with some special medicine in it and since he did a great job he got a prize.

Zach also had a pulmonary function test this afternoon. It sure brought back memories of when I had to do that when I first got sick. He did a great job with that also!

Zach really had a lot done to him the last couple days and he did a great job so when we got released we decided that despite the fatigue and exhaustion we would take him to the Denver Museum of Science. It was also a perk that we got in for free with our Sternberg membership. Zach has loved dragons and so we didn't tell him that this had a special dragon exhibit. He was soooo overjoyed. We only lost him once, but I think it kinda went with the kind of day we were having.

We are soooo thankful for the prayers. I know our situation might not seem as dire as others but to us right now, it is a challenge and it has definitely been difficult. Thankfully, God has worked through my cousin that is allowing us to room at her house until we get in to the Ronald McDonald house. It was such a kind offer and we are soooo incredibly grateful. It's so nice to be out of the hospital but it's even better to be in a home and with family.

Some specific prayer requests for now:

* Malachi- he is doing a little better but still feeling quite crummy and has a bad cough

* Zachary- has more tests tomorrow and a full day of appointments

* that a room would open up at the Ronald McDonald house

* that we would continue to have energy and strength sufficient for the days demands- thankfully our hospital room does have an extra bed so I rest a lot between appointments or while Shawn takes zach to testing

* zach- his reaction to yesterday's test can go away and he can be more comfortable

* safe travels (seriously- some crazy traffic here in Denver!!!!!) 

Thank you so much for the prayers!

Monday- a LONG day

Today has been quite eventful but also LONG! I still haven't seen the mountains! It was cloudy this morning so the only mountains I have seen so far have been a picture on the back of a truck! It's been rainy and dreary all day which adds to the sleepiness we all have. Sleeping in the car last night sounded much better than it was. 

One answered prayer and blessing so far is that I can't tell if I have altitude sickness so I'm guessing I don't. I'm so lightheaded and woozy from what I think is just over exhaustion from the last few days. Thankfully we did bring my wheelchair and it has been another blessing to have! 

Zachary was shown to his room this morning and first thing he noticed was a statue of Ronald McDonald outside- zach is scared of clowns. We thought it was funny. All morning was intake information and just a swirl of information and questions. We are so hopeful that we can get some answers and some treatment. So far it sounds promising.

Zachary ordered lunch today- cheese pizza, Mac and cheese, rice, a chocolate milk shake and some water! Lol- he's my kid- carbs and dairy! ;) he loved the food and thought he would love to stay here. 

Speaking of places to stay...... The Ronald McDonald houses (2 of them) are both full right now. We will call back tomorrow morning to see if any rooms have opened up. Please pray that something becomes available. 

Zachary had another skin test for allergies! Poor kiddo- he was miserable and jumpy but he didn't itch them. A 3 is positive and several of his were above 40! 

As we were getting snacks out of a bag a friend gave us, a little jumping spider came out! It scared me but then it made me laugh and realize how perfect it was that a spider came along with us- it just felt like a part of "home." I know our home is crazy and spooky with some of our "pets" but that tiny little spider just had a way of making me feel "home." As Zachary went to catch the spider the nurse went to get a napkin to give him and Zachary was horrified when he realized she wanted him to kill it! Lol. 

That's about all we know for now. Praying we get more answers tomorrow.

Specific prayer requests:

* Malachi woke up this morning not feeling well- please pray he doesn't get sick and is maybe just homesick

* please pray for a room to open at either of the Ronald McDonald houses 

* pray for REST for us all

* pray for Zachary especially the next couple days as we figure out a treatment plan

Monday- national Jewish Health

We arrived at Denver at 3am CST this morning. What a week it has been! For the most part I've had some better days this week which provided an excellent distraction from these upcoming weeks. Sunday was difficult though- the amount of travel and time upright was too much. It hurts when people expect so much and really don't understand my/our limitations. God is shaping my heart in the experiences and I have to try to keep focus on Him on the misery and pain and exhaustion. 

Thankfully, Zachary didn't have to endure the long drives of our Sunday- he just had the drive to Denver which was long enough. It was so bittersweet leaving. I can't remember being away from my kids this long since we were at the mayo clinic in 2010. I also worry about our pets and house- praying that everything comes together and they don't feel abandoned by us. Moses especially was sad as we left- watching out the front window. 

As we arrived in Denver, I was reminded how awesome of a husband I have. He is incredible with being able to stay up all night and drive in the late hours- I mean that is his job so it definitely was a blessing tonight. Without that we definitely could not have made it to his nieces graduation today as we would have had to leave EARLY to make sure we had decent accommodations for the night. Shawn driving in the late night hours reminded me so much of my dad and his nighttime driving in the harvest convoy. When it was time to drive home or to pack up and go, I remember long, boring road trips from Oklahoma up to North Dakota.

I think that may be where I just love road trips now. Even with how incredibly hard they are, I enjoy the time with shawn as he drives and I read books. Tonight, I was reading "The Insanity of God" by Nik Ripken. It is an amazing book so far and we had some great discussion as we read through it so far. 

Tonight we are sleeping in the car. I know most people suggested against it and it honestly is against my better judgement, especially after driving around Denver a bit. We have seen sooooo many people on the streets. While I have tried not to judge, I have a fear with most of them. They appear homeless or wandering. We tried to find a gas station or nice place to use the restroom and were denied at Jenny's Market because we didn't buy something. The guy was rude to us and after such a LONG day, just that little thing made me almost cry. We drove around, finding places but then also seeing sketchy people around them and not feeling safe. Finally we found a walgreens and went there. It feels like we are homeless- we are looking for a place to go to the restroom and also to brush our teeth and freshen up. My heart hurt for the people we drove past- there were just so many sitting on corners or laying outside of closed businesses. I wondered what we could do. How do you help those people and then also I felt sick to my stomach to realize I was terrified to even be close to them for safety reasons. 

Shawn has no problem talking with them but with our son with us, didn't think it would be a good idea right now. I know I was brought up in a very sheltered, small community and didn't know homeless people. It's my prayer that I can overcome my fear for safety and better discern how best to help certain ones. I need to have more intimate conversations with the Holy Spirit to be able to know where I'm being led and what I'm being told to do. 

Prayer requests for today:

* Zachary: may we have a productive day, that we can start on the road to finding answers to progress toward healing 

* me: that I can handle today with the appointments 

* Shawn: that he can find rest despite his long hours and little sleep

* also- please pray that there might be an available room at the Ronald McDonald house- this would be a huge blessing financially to be able to stay there rather than a hotel (even with the medical rate at the hotel)

Justice and Revenge

While these pictures are a few years old, this seems to be my life lately. . . . . .

Kids crying, screaming, yelling, fighting. . . . not getting along. And on top of that. . . . TATTLING! Oh how I despise tattling- you know, that whiny voice, pity party tattling.

It definitely doesn't help to have children with emotional difficulties that have a difficult time controlling themselves. That adds to the stress of the our family and disciplining. The siblings don't understand and it often just leaves us all completely exhausted at the end of the day.

Well, I have often learned in parenting that the struggles we are facing often are God's way of speaking to us. In reflecting lately, trying to figure out what in the world to do with my children- do I allow tattling or do I teach them to fight back? What exactly is tattling and how do I teach my kids that? How do I teach my kids not to take matters into their own hands? Grrrr.. . . parenting is SOOOO difficult.

In my quiet times, I have noticed that I have had hurt on my heart from fellow brothers and sisters in Christ. And when that hurt happens it is my human nature to wish they would understand the hurt they have caused. Whether it is someone that has been rude to me, it is my reaction to want to be rude back to them. I believe it is a natural human reaction to want justice in our human terms and understanding. However, when we become a Christian, we live in a spiritual world and for our Savior, who ultimately paid the price for our selfish sins. We put away past hurts and our human nature in exchange for living non-conformed to this world. (It is so much easier to type or say that than to actually live it out!)

God tells us to pour our hearts out to Him. He knows our hearts but He still wants us to tell Him our hurts and struggles. He is our FATHER- a loving, caring father. There is nothing too small for Him to care about in our lives. Since God is our example as a parent, I should also graciously listen to my children's struggles, no matter how petty or small. I once was told that if I'm not there to listen to my children for the small things they would not count on me to listen to them with the big things in life. However, in the midst of the screaming and fighting, it often can just be overwhelming and easy to just dismiss my children and say- enough!? Fix your own problems! I am cooking supper!

However, often I have found myself disciplining my children for hitting each other, because the other sibling hit them first. However, they were the ones caught- not the sibling that started it. Trying to teach children about justice is soooo difficult. I mean, it is a subject most of us struggle with if we really are true to our hearts about it.

In my quiet time, God put this scripture on my heart:

Romans 12:

9 Don’t just pretend to love others. Really love them. Hate what is wrong. Hold tightly to what is good. 10 Love each other with genuine affection,[e] and take delight in honoring each other. 11 Never be lazy, but work hard and serve the Lord enthusiastically.[f] 12 Rejoice in our confident hope. Be patient in trouble, and keep on praying. 13 When God’s people are in need, be ready to help them. Always be eager to practice hospitality.

14 Bless those who persecute you. Don’t curse them; pray that God will bless them. 15 Be happy with those who are happy, and weep with those who weep.16 Live in harmony with each other. Don’t be too proud to enjoy the company of ordinary people. And don’t think you know it all!

17 Never pay back evil with more evil. Do things in such a way that everyone can see you are honorable. 18 Do all that you can to live in peace with everyone.

19 Dear friends, never take revenge. Leave that to the righteous anger of God. For the Scriptures say,

“I will take revenge;
    I will pay them back,”[g]
    says the Lord.

20 Instead,

“If your enemies are hungry, feed them.
    If they are thirsty, give them something to drink.
In doing this, you will heap
    burning coals of shame on their heads.”[h]

21 Don’t let evil conquer you, but conquer evil by doing good.

My kids often say, "well why aren't you grounding him? Why doesn't he get in trouble?" And in handling discipline, I try to be fair, but also, I often know more than my children about the situation or the circumstances, which is why I dish out the disciplines as I do. I expect my children to trust me that whether they think it is fair or not, I have it handled. God expects the same from us- TRUST! When someone wrongs us, it is NOT for us to succumb to our selfish, sinful nature and want revenge on them. It is our job as Christians to LOVE that person and allow God to discipline them because ultimately, He knows the WHOLE story. As I watch my children struggle with trusting me to be fair in discipline, I also know that I need to fully trust my heavenly father that He has a justice that surpasses my human understanding.

It's quite amazing how screaming and fighting kids can teach me a lesson about my relationship with my heavenly Father. I thank Him for reaching my heart and helping me learn how to TRUST Him more in my hurts.