As always, we are busy. But Dave and I are finding more and more free time, and less and less time all tied up in Ben’s needs and Ben’s behavioral issues.  To this we simply say-Praise God!  I have read more books in recent months than all of last year-this makes me very, very happy

Unfortunately, we are still having issues with the seizure increase.  Getting off to sleep can be bad, but then things settle down.  However, early morning s are bad news, and often wake Ben.  As a result, either Dave or I is getting up with him most mornings before 5 AM.  This is not pretty, as we aren’t all that good about getting to bed early.

It does, however, bring me to proof that things around here are getting much quieter.  This afternoon Dave went to “rest his eyes” for a few minutes.  He actually NEVER naps, so I figured he’d be back in a few minutes.  While I was waiting, I curled up in a blanket, and the next thing we both knew, an hour had gone by.  Not only is it rare for ONE of us to get a nap, it’s pretty much impossible for both of us. And yet it happened, today. One more little miracle at the Welch house.

Teena

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Somewhat predictably, week two has been harder than week one. We saw this after almost every drop-he did fine the first week, and the second week was a bigger struggle with seizures.  It’s been a little ugly the last few nights, with Ben having so much trouble he’s just getting up between 5-6 in the morning.  Yesterday he finally slept until after 7, and today until 7:45.  We’re taking this as a positive sign that things are at last moving in a new direction.  We did see a few days of withdrawal symptoms such as agitation, biting himself, and banging his head on things. The head banging tends to indicate he has a headache…that could have been from the concussion, too.  Hard to say, but there were a couple of rough days in there. Even his OT was asking me what was wrong-he just wasn’t himself. The last two days he has been more cheerful, acting more like himself.  He absolutely LOVES this sunny weather, and spends a good portion of each day outside, digging in the dirt and riding his scooter.

The kids and I all have a bad case of end of the school year and the weather is not helping.  We’re doing a lot of school out in the back yard   We are really starting to wind down activities and start to look at what we want to do with our summer. I’m hoping Ben will be well enough that we can get out and about more-more hiking, more beaches, more parks.  Nate and Megan are hoping for more visits with friends and cousins (hint, hint. You know who you are!).  I think Ben is just hoping to feel better, and possibly for more screen time

I went last night to a meeting for the program I was going to put Nate in for fall. Turns out all the laws have changed since I last looked into it, and it’s REALLY not going to work for us. So it’s back to the drawing board in the great search for homeschool options for Nate.  Wish me luck and pray hard!  Maybe we’ll just hire a math tutor!

Teena

as I sat here, Ben found a pair of scissors and some paper I had set out for a lesson. He picked them up and proceeded to cut very successfully, all by himself! progress is good!

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It was a nice, quiet, SUNNY weekend here. Unfortunately, Dave was pretty sick for some of it. However, we spent as much time outside as we could.  Both Nate and Megan had places to go and people to see on Saturday, but other than that it was nice and quiet. Mother’s Day I pretty much spent in the backyard reading the four books I am trying to get through and drinking iced coffee. Sounds like a perfect day to me!  It was joyfully a relaxing weekend for all of this.  Giving me the day off usually results in lots more work for everyone else, but Ben was in a co-operative mood. More and more often these days we hear the words “ peaceful” and “relaxing” cross our lips.  Nothing short of a miracle-God is Good!

Dear Mom-Hope you had a great day-we’ll come see you when we have fewer germs

Teena

Yesterday the kids and I went to Bracketts’ landing, an ocean beach, to enjoy some lovely weather.  It was a good day, but Ben did not appear to be feeling well.  I was thinking he had a sinus infection, and possibly bronchitis.  After we got home, Dave took the older two to a movie. Shortly after they left, Ben was playing on his therapy bar and the whole thing collapsed.  He took a terrific fall. Between Ben and the bar itself, there is now a dent in my hardwood floor.  Ben cried for a long time, and kept indicating that his chest hurt.  After about half an hour I started to worry about internal damage and called Dr. Mark to get his advice. Dr. Mark just told me to bring him in.  To make a long story short (too late) Ben does have bronchitis…and a mild concussion.  The concussion is from a whiplash effect.  He’s bruised up a down the front of his body, but no broken bones.  Today he is clearly not feeling well, and coughing more, so he is taking it easy.  Dr. Mark said to wait out the bronchitis because it was not very severe. The last thing I want right now is to start and antibiotic!  So we’ll wait and keep a close eye on him while the poor little guy recovers.

Teena

Megan is just over the cold, Nate and Ben have it full strength, Dave came down with it this morning. It’s looking like Ben has croup. I had the cold, too, but was only sick a day or two.  The solution?  I’m taking the kids to a homeschool event at the Beach today, and Dave is taking the older two to a movie this afternoon .  We are very much trying to turn over a new leaf now that Ben is more well, and do all those things we have been “waiting” to do.  One is spend more time with the older kids.  It seems only moments and they will be grown, and only yesterday they were born.

Last night was Ben’s third night Lorazepam free, and I’m here to say, problem free! Praise God-no issues so far.  Yesterday I noticed Ben had a lot of energy despite being sick, and wanted to play constantly. I notice today he constantly wants interaction and it dawns on me-he’s not operating through a drug induced haze! Well, Ok, he still is on a high dose of Banzel. But in the last 18 months he has come down from 4 meds to ONE.  He is truly a different person, and I can’t wait to see what is going to emerge in coming days as the last of the Lorazepam leaves his system.

In case you were wondering about the NIH-I’m still gathering info.  I know I am missing two meds Ben was on while still at Swedish hospital.  They are checking records and will call when they have the necessary info.  To date, Ben has been on 13 AEDs(anti epileptic drugs) and 30 supplements.  15 diagnoses.  What a long, long road we have traveled.

I’d post pictures, but Dave has instituted a new filing system, and I don’t yet know how to use it.  At least not how to connect the pics to the blog.

Teena

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