God's Faithfulness to us in the Middle of a Storm

2011 started out to be rather scary for us. At 1:00 am on January 1, Josh called us to tell us that he couldn't sleep because Daniel was "talking." I thought he was having a bad dream, but when he wasn't responding, I turned on the light in their room to find him having a seizure. I tried to arouse him out of it, but nothing worked. I immediately told Frank to call 911. Within minutes, there were paramedics and a fire truck in front of my house. They came in, scooped Daniel up out of his bed, and immediately took him out to the ambulance. Somehow, in the middle of the chaos, I managed to call our pastor and post a quick prayer request on Facebook. It's all a blur now, but I know how important it is to take our requests to God. He's held Daniel's life in His hands since the day He created Him, and we know that He will be faithful to care for our son in everything.

We figured out that Daniel's seizure lasted at least 45 minutes; it's more likely that it lasted more than an hour - that's a very long time for a seizure. He also had a temperature of 103.4, and the doctors think that's what caused the seizure. Thankfully, the ER staff at Community Hospital got things under control very quickly. And the best part was that I recognized one of the nurses. Her daughter goes to school with my kids. The moment I recognized her, I knew that God was not only taking care of Daniel, but He was taking care of me. My childhood best friend has epilepsy, so seizures are nothing new to me. Seizures that won't stop, however, are very new to me, and I've never been so scared in my life.

From the day Daniel was born, I sensed that there was something "different" about him, but I couldn't put my finger on exactly what it was. He was a little behind in hitting most of his developmental milestones, but it was nothing to worry about. He had physical therapy to help him learn to walk, and he was walking after only one therapy session. At 2 1/2, he wasn't really talking in more than one-syllable words, so we called First Steps (Indiana's early intervention program) to have him evaluated. At that point, we saw an orthopedic doctor and a pediatric neurologist, and they said there was nothing to be concerned about with him. However, they were wrong.

We saw a neurologist at Children's Memorial who diagnosed Daniel with speech and verbal apraxia and recommended OT, PT, and speech therapy. In November 2008, we began seeing a developmental pediatrician, and her diagnosis was ADHD and autism spectrum disorder. The ASD diagnosis was not surprising because I suspected that he fell into that category all along. The ADHD was a little surprising, but I also knew that we could manage that with meds.

However, NO ONE addressed the sleep issues we were having, and NO ONE ever suggested doing a CT scan, an EEG or an MRI - until Daniel had a seizure and was transferred to Comer Children's Hospital at the University of Chicago. The first question Dr. Tonsgard asked was, "How long have these sleep disturbances been going on?" I told him that I couldn't remember a time when he didn't have them. I was hoping and praying that someone would order an EEG and a MRI to see what's going on, and that's exactly what he did. Finally, we might get some answers!

Sure enough, the EEG showed that he has Rolandic Epilepsy. It's a mild form, and it should go away between 16 and 18 years old. The MRI, on the other hand, showed something more. Daniel's cerebellum is smaller than normal, and the space in the back of his brain where the cerebrospinal fluid is, is a little bigger than normal. Neither of these things is anything we need to worry about, but they DO need to be monitored.

The end result is that I am thankful and blessed that God takes such care of Daniel. While going through such an ordeal is scary, getting answers is a relief. Now, we can pray more specifically for him, and we know that we need to be more vigilant at night (by putting a video monitor in his room). I've never doubted that God holds Daniel's life in His hands, and I know that He has a purpose in all that He does. I'm glad that He has a plan for Daniel, and I'm looking forward to seeing what He will do next.

So, I am choosing to trust Him and rely on His promises to care for Daniel. I am not going to worry constantly because that would just be a waste of time. I'm thankful that God loves us and that He is ALWAYS faithful to keep His promises.

Graduating From Speech Therapy

It's still somewhat hard for me to believe, but Daniel will be graduating from speech therapy on July 27th. He will continue OT and PT for quite a while yet, but this is a major step in our journey. When his speech therapist first told me she was almost ready to discharge him, I had a hard time with the thought of him not being in speech therapy. After all, he's had speech therapy for over 4 years; it's become a way of life for us.

As I thought and prayed about the transition, it started to make sense. Not only that, but it will allow him to be in school for another hour before I have to pick him up for OT and PT. I'm hoping to get those therapies changed to different times, but for now, we'll stick with the current schedule - Tuesday afternoons from 2 to 4 pm.

I am once amazed by God's goodness and His faithfulness in Daniel's life. When we first started therapy and visiting pediatric specialists, the things I was told were not good. I envisioned Daniel in therapy for the rest of his life, and I also saw him never attending a "regular" school. Additionally, I figured that we'd have to support him, and that Josh and Annie would have to "look out for" him throughout his adult life. I've come to realize that I was completely wrong, and many of the medical professionals who painted the worst picture possible were also very wrong.

God is bigger than any diagnosis or disability. He holds Daniel's life in His hands, and He has a purpose and a plan that is greater than we could ever imagine. And I get the amazing privilege of watching Him work in Daniel's life. That truly is the best part - seeing His handiwork in my son's life every day. This journey is not easy, but I am blessed to be a part of God's plan, and I wouldn't trade it for anything.

The date of his last therapy session is very significant to me. My mom was my best friend, and that's her birthday. I wish she were here to see how far he's come in such a short time. He still remembers her, and he talks about her often. How wonderful it would be if she could hear those sweet words that we waited so long to hear!

God's Hand on Annie's Life

During Annie's swim class tonight, I stayed in the locker room to work on my Bible study homework because it's terribly hot in the pool balcony. After I finished the study, I popped in to watch the end of her class because I was curious to see how she was doing. I watched her swim to the far end of the pool, and the teacher had all the kids turn to come back to the end of the pool where I was. I watched her swim almost all the way back, got distracted, and lost sight of her. When I didn't see her in the water, I noticed that she had already made it to the end of the pool. She was sitting on the deck, but something was not right. She was crying, and the lifeguard was walking over to her.

I immediately made a beeline to get to my precious girl to see what was going on. She was having trouble breathing. I wasn't surprised because her asthma and allergies have been acting up lately. I didn't even give the lifeguard a chance to help her. I helped her up and headed to the locker room, where I helped her calm down and quickly got her dressed. We were met in the locker room by another mom who also works at the Y. She was checking on Annie. I explained that Annie has asthma and that we were going home to do a breathing treatment.

Once again, God's timing was absolutely perfect! Who knows what would have happened if I wouldn't have gone into the pool area to watch her swim?!?!? Thankfully, I was there - exactly when she needed me - and I was able to help her.

Psalm 121

I lift up my eyes to the hills - where does my help come from?
My help comes from the Lord, the Maker of heaven and earth.

He will not let your foot slip - he who watches over you will not slumber;
indeed, he who watches over Israel will neither slumber nor sleep.

The Lord watches over you - the Lord is your shade at your right hand;
the sun will not harm you by day nor the moon by night.

The Lord will keep you from all harm - he will watch over your life;
the Lord will watch over your coming and going both now and forevermore.

Thank you, God, for watching over Annie's life and keeping her from harm!

Farewell, Aetna!

When he came home from work yesterday, Frank asked me, "Did you get my last text?" I said, "No, I didn't. What did it say?" He then told me that, as of July 1st, we won't have to deal with Aetna anymore. His company decided to switch to Blue Cross/Blue Shield. I've been praying for this change for over a year! While it took longer than I would have liked, I have to remember that God's timing is ALWAYS perfect, and He knows what's best for our family.

I was even praying about it again yesterday, while I was driving home from the dentist's office. Little did I know that Frank would be cutting a check to Blue Cross/Blue Shield shortly after I prayed!

I am constantly amazed by God's goodness and His faithfulness. He knows our needs, even before they arise, and He is faithful to provide for them. He knew that Daniel needed a mom and dad who would fight for him, who would be diligent in getting him the care he needs, and He put Daniel in our family. I am blessed to be the mom of such a sweet, wonderful boy. I can't wait to see how God is going to use Daniel in other people's lives.

When God Speaks, I Shut Up

Yesterday was an incredibly difficult day with Daniel. When Frank brought him home after Doughnuts for Dads, he was exceptionally quiet. He wasn't talking much, and he seemed disappointed to be with me. I'm guessing that's because he enjoyed his morning with Dad, and he didn't want him to go to work.

After therapy, the kids came home to fight with each other the whole time I cooked dinner, and Daniel was the worst offender. When dinner time came, he absolutely refused to eat. I spent the next 1/2 hour telling him that if he didn't eat, he wasn't going to his swim lesson. When Frank got home, he still wouldn't eat, and we ended up taking that privilege away. Then, the meltdown started. For the next several minutes, he cried and had a fit. He eventually ate his dinner, but I had to feed him.

Frank and Josh took Annie to her swim lesson, and I stayed home with Daniel. While Daniel was in the bathtub, I had a "fight" with God. Well, we all know who wins those! Through lots of tears, I told God, "How can you watch him struggle and not help him?" His answer to me was this: "I gave him YOU to help him!" While it wasn't anything audible, I clearly heard God speak those words to me. How can you argue with the One who holds everything in his hands?

I am Blessed

In the past few days, I have really felt blessed by my children. They haven't done anything special to bless me, but I feel blessed to have such amazing kids. I took them for new sandals for the summer, and the woman who helped us in the shoe store had nothing but good things to say about them. She even called Annie perfect! Of course, I don't tell my kids that they are perfect, but I do encourage them when they try their best.

I've been noticing that their willingness to obey and to do their best in whatever they do is increasing, and I am having to discipline them less. Part of our discipline process has always been looking at what the Bible says about how we are to act and how we need to treat one another. I can see the results of what we've been teaching them, and I consider it a privilege to teach them these important truths.

It's Been a While!

Well, Aetna is still denying our claims regularly. The latest claims they're denying are our trips to the ENT for my sinus troubles and Annie's nosebleeds. I received an EOB last week, denying the claim, and stating that they did not receive the information they requested from the Dr.'s office, so we were responsible for the entire cost of my visit - all $890 of it! At that point, I called the billing department and spoke with someone who told me that they sent Aetna the information on March 1. She also said that she spoke with someone named Tanya at Aetna, who confirmed that they did, in fact, receive the medical records they requested. She also told me that this happens all the time with Aetna. My response - I'm not surprised!

I can hardly wait to see what they do with the claim from Annie's visit. They pended the claim, stating that they requested medical records. I wonder how soon it will be before I get an EOB stating that they didn't receive them and that the entire bill is our responsibility.

Needless to say, I contacted the guy who helped us get the therapy stuff straightened out, and I should be hearing back from him very soon.