New Teen, Baseball, and 31.5 months TSW

So proud of Brian as he finished his 7th grade year with perfect attendance and straight A’s for the 2nd year in a row (and an award for “Curiosity” hmmm). Not bad considering Topical Steroid Withdrawal (TSW) kept him out of most of 5th grade. Perhaps all that TSW down-time strengthened his immune system! ¬†ūüėČ

In addition, he and his Breeze brothers have warmed up this baseball season with a couple of championships and a runner-up on their road to Cooperstown.

TSW can take a hike; 8th grade can wait–Summer fun, here we come!

June 15, 2016

So long, 7th grade!  June 15, 2016

Northeast Super NIT Champions 12u   Great win in 95+ degree heat and high humidity--take that, TSW!

Northeast Super NIT Champions 12u  
Great win in 95+ degree heat and high humidity–take that, TSW!

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2016 East Coast Swing Champions

You make me glad by your deeds, oh LORD; I sing for joy at the works of your hands.” Psalm 92:4

A Prescription to Sleep In

At the start of May, Brian had a few days where he was able to get to school by 9:45am without my waking him out of a sound sleep to get up. Yay! Progress! We thought he was just going to do better and better each day and meet his goal of getting to school on time and staying the full day without an itchfest meltdown. ¬†Unfortunately, last week’s flu and the fever from the week before just set him back. Now, he is sleeping soundly until at least 9:00am or 9:30am again, and we are lucky to get him to school between 11am and 12pm.

Brian’s teacher/homebound instructor has been so wonderful, accommodating, and understanding, and¬†I just hate burdening her with the unpredictability of it all! She has enough on her plate with 30 students.

Yesterday Brian started school¬†at 11:30am. A few hours later, I was signing him out at 2:45 pm for a doctor’s appointment, and a staff member commented, “So, Brian’s coming in just whenever he wants to now?” She probably did not intend anything by it, and I was overly sensitive about the tone, but this kind of upset me since it’s not like we want to interrupt class at all hours of the morning! This is part of his physician-approved treatment plan; did she not get the memo?

I’m sorry he can’t get up early enough to ride the bus and get there before the bell rings. I’m sorry I can’t get him there at a consistent time every day yet. He’s still scratching through the night, breaking up his ability to sleep soundly. Then I had to wake him up from a sound sleep today to get him there “early” at 9:15am (school bell rings at 9:10 am) for an SOL test. He can do this for one or maybe two days in a row, but we have found that his body then crashes and needs the longer sleep in the mornings on the following days.

Though Brian is functioning better, his body clock is still a bit off, and his body is still healing, which happens mostly during sleep. Since he is not sleeping soundly at night, he needs to sleep as long as he is able whenever he does fall asleep, which, unfortunately, is during school hours.

Getting to bed earlier doesn’t work either–even when he wakes up early that day–because his body will generally not let him fall asleep before 10:30pm. However, this is a great improvement from the 3am and 6am sleep times from a few weeks and a few months ago!

It is a challenge to balance the needs of your child against societal expectations. I am going to do what my child needs for his body to heal, and right now it needs all the sleep it can get.¬†¬†We will continue to get him to school as soon as he can get there and save the forced “shake awake” early rising for SOL testing days. After all, this, too, is just another step forward on his road to recovery.

“The LORD is my helper; I will not be afraid. What can man do to me?” ¬† Hebrews 13:6

 

Darkest Before the Dawn

Well, Brian’s fever did rise to about 102.5 by Thursday night and Friday morning, so he stayed home from school. He slept, did not scratch, and his skin cleared up head to toe, soft and smooth as a baby’s skin! Thank God for fevers! When he started scratching again and his skin started getting that light rashy look Friday evening, I said, “His fever must be breaking.” Sure enough, his temp was 98.6. The body is a curious thing. At least he got a 24-hour break from the maniacal itching.

Unfortunately, since he slept/rested all Thursday and most of the day Friday, he was wide awake and wired by Friday night. We saw all those weeks of finally getting his body to sleep by 12am, 11:30pm, and 11:00pm go down the drain. Noooo! Friday night was just as sleepless, scratchy, and screamy as a few months ago. He was still awake around 3:30am, slept late, and got out of the shower around 1pm Saturday afternoon. Back to the drawing board.

I was mad, resentful, frustrated, angry, pissed to the max! To top it all off, I caught the virus that Brian had–sore throat, congestion, malaise, non-productive cough–minus the fever. I spent all of Mother’s Day in bed¬†but was happy that Brian and my husband were able to get out in the fresh air and sunshine to run and jump and move. I tried to think of various scenarios that would involve committing myself to the looney bin without impacting Brian’s and Kevin’s lives, but couldn’t come up with any, so I just stayed put and pleaded¬†with God as to what he wanted me to do: “Thank You for this opportunity to rest, but what do You want me to do, LORD?”

Sleep and exercise deprivation aside, why was I angry and frustrated? After all, Brian is the one who is suffering, and he’s handling it as well as anyone could expect a 10-year-old to handle chronic pain, itch, lack of sleep, and missing pretty much most of his fifth grade year in school.

I guess it boils down to: if things aren’t going as (I) planned or if (my) expectations are not met, I get mad. The “plan” was to gradually get Brian back to school full time as the night itching gets better and his body clock gets back to normal. Well, it seemed that his clock got messed up again with this latest incident, which messed up my “plan.” What did God tell me? “Stop planning. Let go of expectations; let go of what other people think; let your son heal without pressure from you. I died to set you free, and that includes freedom from compulsive planning.” OUCH.

So, I let it go.

Last night, Brian slept an amazing 12am-6:58am with minimal disruptive scratching, and I dropped him off at school at 9:12am–bell rings at 9:10am. This is the earliest he has been able to get to school since last October. GOD is Good‚Ķ.I should give up planning altogether and just listen to Him more often. ūüôā

“Many are the plans in a man’s heart, but it is the LORD’s purpose that prevails.” Proverbs 19:21

Don’t Worry; Be Happy

I’m glad I enjoyed the calm on Monday while it lasted because, needless to say, it goes away quickly. ¬†Surely anyone who does not believe there’s a hell has never experienced topical steroid withdrawal (TSW.) I am just the caregiver to a son who is going through TSW, and I can tell you it is not a walk in the park. ¬†I can’t imagine what Brian is experiencing, but I would gladly take it all on myself in order to spare him the pain and allow him to live a “normal” 10-year-old life. ¬†Right now, his day looks like this: awake scratching 1 pm to 12am; sleep scratching 12am-3 or 4 am; minimal scratching and more sound sleep between 5am and 12pm. He’s asleep during the day and active in the evening, doing home school work in between. Thankfully, he is doing so much better than he was in November, but the constant itching still adversely affects his ability to sleep at night and to attend school. After all, sitting still and concentrating is challenging enough for an active boy without adding insane itching on top of it. When will he return to school? It depends on sound sleep during the night and itch management during class.

So, why am I worried about getting him back to school? Well, yesterday afternoon, like many in recent weeks, the itching was so bad that he couldn’t get relief, and he repeatedly hollered at the top of his voice, “Help me! Help me! Heeeelp Meeee!!!” I came down the stairs expecting to find the cops or CPS ready to take me in for torturing this boy. Instead, I find him balled up by the fireplace, sunburn-red, rocking on his heels and toes, scratching furiously at his feet. ¬†He gave me a pitiful look that said, “What took you so long? Can’t you see I’m suffering here?”

It took 30-40 minutes to calm down the itching before we could even begin to start the day. Thank goodness he was at home. What will happen when he is at school? I know he doesn’t want to disrupt class with his scratching, and lately he has become more self conscious of the profuse shedding that comes with it. Will he be okay? Will he get stressed out, resulting in a major itch fest? Will his classmates be empathetic and understanding or will they be freaked out by the flying flakes and not want to associate with him? What’s not to worry about? I could worry about his confidence. I could worry about his sense of self worth. I could worry that students will ostracize him and, worse, that he would even care and internalize what they think. ¬†However, not much good is ever accomplished by worrying, so we have to trust that things will work out, and that Brian is in Good hands.

Well today, Brian–broken sleep, itch, and all–tried a partial day at school. Gulp! He participated in class, used his ice pack and cold pack for the itch, did recess buddies with a friend, and scratched: before, during, and after school. When I asked him how his day was, he beamed, “Good!” but the spring in his step and the smile on his face told me, “See, mom, no worries.”

‚ÄúTherefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34