Praises During this Small Storm

Jack threw up again sometime last night/early this morning. It's all a blur sometimes. The scary thing is that we did not wake up immediately when it happened. It seems like God usually jolts me awake for these things. But no worries God had his eye on Jack as usual and Jack was laying facedown when I woke up. ***Stop reading here and skip down to the last few sentences of this paragraph if you have a weak stomach.*** I know this is a little graphic but I just want you to know how much God takes care of our little guy. Jack was lying facedown and that caused all the vomit to exit the mask into the Bipap tubing so he did not breathe it in and cause lung damage. Our God is an amazing glorious God who deserves oh so much more praise than I will ever give!!! Anyway I don't know how long he laid like that before I woke up and turned on the light to check on him because I realized something was odd (yet another praise because I was really very sleepy and was just going to turn him over but something (shout out to God!) made me turn on the light first). Anyhow, I turned on the light and was getting him cleaned up when he began vomiting again and much more that time. He refused to eat all day and David said he was pretty lethargic until I finally dragged back home. He perked up a little when his biggest playmate and snuggly comfort item (ME!) arrived. He did eat a little dinner (some cereal and fruit bars--his choice). He's been asleep for a couple of hours and he has not thrown up yet. Pray pray!


Dave is feeling okay. He says he's feeling better since he's at home where he has his medications (Mucinex and Sudafed) and remembers to take them.

I had to work today while my brain tried to knock its way out of my skull little by little. I went to the doctor this afternoon. He says that my neck and shoulder pain were most likely the precursor to me getting sick. He says it's yet another viral sinus infection to be blamed on the ever changing barometric pressure. He gave me a shot to decrease the inflammation, particularly my throat and gave me some other meds and praise the good Lord, meds for my head to quit pounding. They are working.

Sometimes we both cry....

I hope that my wise, sweet husband and amazing father to Jack is right. Jack was just really tired tonight. In retrospect, I'm pretty sure that he is right.

Jack cried that he wanted to watch more you tube videos but it was bath time and I cajoled him to the bathroom with the offer of a piggy back ride. But we got there and it all fell apart. He wanted to take a bath. He wanted Irish. He did not want to take a bath. He wanted to take a bath. He was all done. He took his socks off but cried about getting out of his shirt. He did not want to use the bathroom. He did not want to put on his PJs. He wanted Mama. He wanted Mama to go away. He wanted to sit on Mama’s lap. He wanted Mama to go away.

My mind whirled. What do I do? He will live if he doesn’t get a bath tonight but wait! If I let him skip this bath will it teach him that he can throw a fit and get out of doing things? Is this a fit? Is something wrong? Is he stressed? What does he want? I wish I could understand everything he says. What does he want? Does it matter what he wants? He needs to get to bed. He’s so upset. How will he get to sleep? Is something bothering him?

I finally got him calmed down and got him into bed. He drifted off to sleep and the evening routine of keeping him breathing while asleep began. Then Dave brought the mail and there’s a letter from the school. It’s time to figure out if he should go to kindergarten next year. It’s time to plan his goals for next year.

Jack’s oxygen levels began to drop. We propped him up on pillows. He coughed and sputtered from the ever present night-time secretions. He tossed and turned and rolled off the pillows.

My mind whirled. Should we give him Afrin? How many days has it been since his last dose? Why is he having such a hard time these past few nights? Should we go ahead and put the Bipap on? Is he recognizing the color black? Should we take a step back from potty training for a bit? Does he need B12 supplementation? Is he stressed out? What was he saying earlier tonight?

And I cried a hard cry like I have not had in quite a while. And I prayed. I prayed and cried. I am overwhelmed and I do not have the answers. I don’t even have all the questions yet. As I cried and prayed sitting there next to Jack’s bed, I remembered what I believe. I don’t have to have the answers and it is not all dependent upon me. God has a plan for Jack that I cannot begin to fathom. I will not always understand God’s plan and it will not always seem fair to me but that does not make the plan any less good.

Life is Therapy--Sometimes You Have to Stop & Reflect on Where You've Been

New to the Life is Therapy series? Here's a quick blurb to tell you what it's about:

Sometimes we parents can get bogged down in the notion that the teaching of our children must be done by professionals. Parents of children with special needs are particularly vulnerable to this idea since children with special needs often have to learn and develop quite differently than children with typical needs. This series centers around the idea that learning can and does occur most effectively through everyday life experiences at home and out in the community--for children with both typical and special needs.

Last week, we talked about entering your child's world. I showed a video of me trying to direct Jack's play with complete disregard for what he was doing at the moment. He ignored me. Then I decided to sing about what he was doing and we enjoyed a short interaction. You can see that post here.

That was the original beginning of this blog post and I was going to go into more detail about matching your child but I'm going to save that for next week now. This post is late getting out. Jack's been home sick from school and I have had a very busy couple of days at work. Jack seems to be getting over his pink eye and ear infection very quickly but tonight has been a rough one so far. He has thrown up into his mask already and I've already had to clean out his mask again because he's had so many secretions. Nights like these it's easy to get a little down.

But that's when I think back to days like these. Looking back, I don't know how any of us made it through that very trying period with so little restful sleep.

And I remember the gratefulness I felt in this post. Back then I was excited to see him carry little plastic balls in his hands. These days he walks around everywhere with a big green basketball.

Tonight he told me "Jack shoes off in house. Go away." because he did not want to wear the house shoes that I was trying to get on him.

When I came home today, I said, "Ah, I missed you." and Jack said "I miss you!" How very sweet. He is blossoming before my eyes.

Yes, some nights are a little rough but overall Jack is developing by leaps and bounds.

So, on those days, when you find yourself wondering if your kiddo will ever learn anything you are trying to teach him/her, take a step back and look at where you've been. It's very therapeutic for moms and dads. Life is Therapy for us too!

Other Life is Therapy Posts can be found at:
Introductory Post
Prepositions at the Park
Rainy Days
Getting Your Child's Attention

Feel free to share your thoughts. How do you perk yourself up on those tough days?

Now it's your turn to participate. This is where we share our ideas and stories with one another. We're all in this together. Let's laugh together, motivate one another, and stimulate each others ideas. If you have a blog, create your own "life is therapy" post and link to the specific post in the Mr. Linky below. If you don't have a blog just leave a comment with your life is therapy story.

Thank God and All of You

When I shot this video, Jack had been asleep for about 40 minutes. It's now been almost an hour and a half and he still doesn't need the Bipap yet. It's been weeks since he's been able to sleep at night for more than 30 minutes without the Bipap. Thank you so much for all your prayers. Our God is an awesome God!




Don't forget to check out the latest installment of Life is Therapy.

Word(less/ful) and Special Exposure Wednesday--The Seven Dwarves of Ear Infection

A couple of days ago I sent out an email asking everyone to pray for Jack.

I thought that a medication he was taking was causing him to have hypersensitivies to sound. He had a complete meltdown when a toy he adores sang a song he adores. He sat there in joyful anticipation until the toy started singing.

Once it started, he made the face...if you ever see the face, you'll never forget the face, and you'll never want to see it again. It's the face of shock, of pain, of confusion...the face that occurs just before the gut wrenching, crying until he literally can't breathe and is getting choked on his secretions crying. It's awful and nothing helps. He looks so helpless as he cries out and in between sobs asks you to do things that usually comfort him but nothing helps until he is just exhausted from the effort and finally calms down. But afterward, little things can get him started again and it starts all over until at some point mercifully he gets to sleep.

Since I thought it was his decongestant/antihistamine/antitussive combination causing the problem, I stopped giving it.Turns out that was a bad idea since he actually had an ear infection but now I'm getting ahead of the story....without further ado, I present the Seven Dwarves of Ear Infection.....

This morning, I woke up to see

sitting up in his bed waiting for me to help him get his Bipap mask off. He was in an extraordinarily good mood. He was especially giggly this morning as he played with Elmo Live and I realized that he was actually repeating one of the jokes. As we got him ready for school, we practiced the joke so he could tell it to Ms. Sunny when he got to school.

When we arrived, Ms. Sunny and Jack's classmates were sitting together and talking. Jack became

and had trouble getting the joke out but once he did everybody laughed and I heard some of the kids repeating it to each other. (Why is six afraid of seven? Because seven ate nine!)<--Remember, this is 4K. This kind of stuff is still funny to them.

Just before his scheduled lunch time, we got the call from school, Jack started acting

so they knew that something had to be wrong. He is not one of their sleepers.

They took his temperature and, sure enough, it was 101 degrees so we got the call to come get him.

When I arrived, Mr. Daniel and Ms. Sunny told me that he had been a little

(I renamed this dwarf Cough-y) all morning. And sure enough, they pointed out the drainage seeping out his right ear. (ewww)

I took Jack home and he almost immediately

 laid down with Elmo.

He became quite 

when he realized that he would be paying a visit to

.

Diagnosis: Ear Infection

Cause: Constant sinus drip gets pushed back into ears by Bipap if not dried up using medication

Mom's reaction: DOH! What do I do?

That's when I felt

Our sweet family doctor took me quite seriously as I relayed Jack's hypersensitivity Sunday evening. You could tell by the look on his face that he understood and was not about to shrug off Jack feeling that way. He understood the problem too. We discussed the possibility that the hypersensitivity may actually have been caused by the ear infection.

Bottom line is that we really don't know and the only way to find out what is causing the problem is to experiment with different medications and see how Jack reacts. David and I talked it over and since he had been taking the new medication for a full week and a half and Dr. A thinks that it would only take 2-3 days of giving a medication to see a reaction, it was most likely the ear infection causing the hypersensitivity.

So...pray for us as we try to get the ear cleared up and the medicine sorted out.

Click to see more Wordless Wednesday, Special Exposure Wednesday, and Wordful Wednesday posts.

Don't forget to check out the latest installment of Life is Therapy.

Snapshots of Sleep--Not completely Wordless Wednesday

Doesn't he have cute PJs?

1st the pulse oximeter is attached. It tells us how much oxygen is getting to his body tissues.

Command center--The machine on the left toward the head of the bed is the Bipap AVAP. Then on the little shelf is at top a clock radio, second shelf all too important puffs plus, and bottom rack the pulse oximeter display. It's not on yet so you can't see anything.

All hooked up

A picture of our rigged up headgear before we connected the Bipap tubing.

For other Wordless Wednesday and Special Exposure Wednesday posts, click on the respective phrases.