Monday, August 4, 2014

Here We Go!

Josiah is starting his third week of kindergarten at home, and he's doing pretty well with it. It has been confirmed over and over again that homeschooling is what's best for him this year. Some days he has to nap at 11:00 AM, and I'm so thankful I can just adjust when we do his work  and it isn't a big deal. If he is super moody and irritable we can save handwriting for later after he's napped and is feeling more himself.

Allison will start preschool Monday in the class that I had the privilege of teaching in the past two years. I am sad I don't get to be her teacher, but I know she will be fine. It will be good for Josiah to have my full (minus what the baby needs at the moment) attention for a few hours.

We checked in with neurology last week, and Josiah's been doing really well.

We have decided to pursue some alternative seizure treatment via upper cervical chiropractic care. Josiah's atlas bone (at the top of his spinal column) has stayed in the correct position for two and a half weeks now!  He hasn't had any headaches or neurological episodes yet.

If we can get to six months (three months is the record) without seizure activity we may get to go down on his meds! Who knows what will happen in the next six months, but I am really excited at even the possibility of getting off meds. His body is doing really well adjusting right now so we are thankful!


Swim Lessons

love,
Merri


Wednesday, July 9, 2014

It's July Now

I am amazed at how quickly this summer is going even though our day to day summer schedule isn't really different from what we do the rest of the year.

Praise all that is Holy, we had no medical drama while we were out of town: Not even a headache or a fall down the stairs! It was truly amazing. The kids had a great time with the Texas cousins, and they talk almost daily about them. :)

We've also gotten to hang out with one of Josiah's favorite girls (yes, there are a few;), BelleBelle, this week at St. Jude. Josiah asks about her every day now that he knows she's in town.

Josiah's eyes have been improving a little according to his check up last week! That was quite a surprise as we expected to get fitted for glasses. I am so glad some of this patching is finally paying off for him.

He did have a seizure we were able to stop with one medication (versus the usual two, plus an ER visit) Sunday. Thankfully, he could sleep it off in the comfort of his own bed.


So we go up on meds again and blah blah blah...


How many times have I written that sentence in the past twelve months? We are very frustrated as parents right now. We trust our doctors to do what they know to be best, but we are beginning to look at more alternative treatments for seizures.

We are Josiah's best advocates-- please pray for us as we try to do that wisely.

Pray against side effects of the increase of  the medicine we already hate:
extreme fatigue and mental slowing, moodiness, anxiety attacks, loss of appetite...

Pray also for me as we delve into kindergarten at home here in a couple of weeks. I know this is what is best for Josiah this year, but I am already discouraged for him. He is going to have to fight through the mental fog to just get his schoolwork done each day. As a mom (and a pre-k teacher!) I so want him to enjoy school.

Pray that we would just know how best to encourage Josiah when he is feeling out of control with these meds.

Baby Brother is coming in ten weeks. Pray that he comes without a big fuss, and that the big kids feel as loved as they truly are.

It looks like Fall 2014 will be another interesting one to remember.

I'm not sure I'm over Fall 2013 yet.

Thanks for sticking with us.





Sunday, June 15, 2014

Same Ole, Same Ole...

Josiah is doing pretty well.

He's beem dealing with some breakthrough seizures the last couple weeks so we've gone up once again on his newest medication. He's on the maximum dose for the lamictal we started last fall when these seizures first started increasing.

We're continuing to patch his good eye in hopes his weak eye will catch up without glasses. But that doesn't help his dizzy spells much :/.

It's been about six weeks since his last grand mal that landed us in the ER so that's pretty exciting on one hand. On the other, it kind of puts Stephen and I on edge expecting the next big one any night now. Six to eight weeks seems to be his new cycle for big seizures.

The kids and I will be going to visit family in Texas at the end of the week. Please pray we don't have to visit any new hospitals while we're away from home. I am going to pack my nurse's bag full to the brim!

Happy Father's Day, dads and male mentors of all ages!


Monday, May 19, 2014

Just an Update

No big news. I suppose that isn't a bad thing, considering!

Josiah is doing alright. He had a breakthrough seizure over Mother's Day weekend (thanks.) so we've adjusted meds, again, and we continue to monitor him.

His left eye requires even more aggressivER patching :(. It's not fun, but he really does do well with it. If six hours a day doesn't do the trick to strengthen that eye then we will probably go to glasses.

Please pray for this medicine to work BUT for Josiah's body to adjust to the side effects. He is still very tired and uncoordinated.

He is wrapping up his preschool year at MDO, and had his spring play a few weeks ago. I think it was his highlight of the year. He has been begging to listen to the songs even though he already knows the words. He is a music lover for sure!

So happy he was healthy to participate on that special day! So proud of his every accomplishment.
Front and Center


Monday, May 5, 2014

Stable MRI!

Josiah had a great scan day. It's always a special day to him when Stephen takes him to St Jude instead of me :). He went to sleep and woke up without a problem! The last few scans have included vomiting and some slight seizure activity so they premedicated, and it did the trick. He was even awake enough to power through thirty minutes of his OT appointment.

So overall, his scan is stable. There was some thickening at his surgery site from December but they suspect that is part of the healing process. Time will tell if the brightness in his tumor is truly growth. It took over a year for them to notice it was changing at all. It could very well be another year before they can confirm it is growth and begin treatment.

It is an understatement to say we are thankful to be dealing with only seizures and not his tumor right now. Dr. B encouraged us that not finding an anatomical reason for Josiah's seizures is a good thing. I know that is true, but I confess I am very frustrated. I feel like we're beginning to go in circles trying to treat these uncontrollable seizures. Treating something you don't know the cause of seems counterproductive. But I have yet to meet someone with a seizure disorder who actually knows the cause of the disorder.

We meet with neurology tomorrow afternoon. Please pray we can agree upon a plan that will take this seizure activity down a notch (or 5) without causing him to be a zombie. He's been very tired and uncoordinated since his last med increase a week ago.

Thank you for the texts and emails and prayers today.
Please pray we all sleep through the night. We have lost a lot over the last couple nights.

Monday, April 28, 2014

Back Home

We were discharged Sunday afternoon!

Josiah was happy to be home. Before we got out of the car he asked if we could listen to "I Gotta Feelin'" :). Of course, once you get the dance tunes going you have to get out the disco ball so that's still sitting on the living room floor. The return home dance party lasted about 10 minutes then he was ready to see his BFF, Allison. They don't like these weekends apart any more than Stephen and I do.

So Josiah is working hard on his bike riding skills. We went around the block three times Friday, and stopped only because we had to eat lunch. He sat on it until I got his plate ready. I love to see him excited about something physical. He avoids things that are difficult (like any of us!) for him, but this adaptive trike has already boosted his confidence like you wouldn't believe. I was running along side him down a small hill reminding him where his brake was, and he just grinned as he took the corner like a pro. It makes my heart so glad to see him so sure of himself.

Also this week, he learned to swallow pills!
"Down the water slide!" and a victory dance

I mean, is there anything Child Life can't do?!? I was eleven before I could swallow the horse pills this kid downed! This will make taking his newest medication much easier. It is a hazardous drug as a liquid which doesn't make me feel great about it going down his throat. We have to wear gloves to handle it! At least a pill will release further down in his tummy. 

All these happy victories for our hard working man made me all the more angry for him this weekend. For every step forward there seems to be another step back. His speech has gotten really rough this week, possibly due to his little brain being under so much electrical stress. I really pray this week breezes by for him.

One week til his MRI.

Saturday, April 26, 2014

4 AM

After a busy week at St. Jude, we're back. 

A little after 4 this morning, we woke up to Josiah seizing. Our home rescue meds were unable to stop it, and he ended up getting Ativan at LeBonheur to stop the shaking. After stabilizing, we were transferred to St. Jude for them to keep an eye on things. 

After vomiting a little, Josiah was declared NPO, but that was lifted by dinner. (Thanks again for food, Stephen and Emily!) J was walking and playing for a bit before going back to bed.

As long as tonight is smooth, we should be home tomorrow. There's been more tinkering with meds, and I think Merri and I are just ready for the May 5 MRI to get here.  

Thursday, April 24, 2014

Joisah's new bike & EEG results



First things first! Today, Josiah was given his new bike! We can't thank the amazing people at AMBUCS for making this happen. It's an amazing blessing.

The plan was to leave the bike at St. Jude for a few weeks for him to get used to it, but after he rode, he begged us to bring it home — so we did!

Josiah also had an EEG today. The results are still bad — lots of activity, on both sides of the brain — but the new medicine seems to be helping. He'll have some more bloodwork in a couple of weeks once he's been on the new medicine a little longer.

We're now inside two weeks from his next MRI, and I at least am beginning to get nervous about it. The new meds are helping control the seizures, but my imagination runs away when I think about why this has come up again.

Pray for the next two weeks: for rest, for peace, for patience.

Oh, and Baby #3 is a boy!

Tuesday, April 8, 2014

Adjustments

Josiah is doing pretty well. He's been on the full dose of his new medication for two days now. He is tired and losing a little bit of his appetite, but hopefully both of those things will normalize soon.

He will have his follow up EEG April 24th.

Today was his biannual eye clinic appointment. His left eye has always been weak, but it has gotten much worse since last fall. It could be from time off patching because of headaches and surgery. It could be so many medications making him, understandably, not want to work very hard. Doesn't matter. Before just skipping ahead to glasses we're going to "patch aggressively" as the doctor put it. Three to four hours a day everyday :(. He is going to wish for the bygone days of patching two to four hours a week. 

He takes everything in stride, sweet child that he is: Leg braces, wrist extenders, arm sleeping wraps, eye patches, elbow extending braces, constant reminders to stretch hiiiis woooords ooouuuut. If it were me I would've screamed, "Enough already! This is too hard!" Somehow, he still looks forward to every Wednesday 'playing' with Jess, Kelley, and Angela.

Talk about perseverance.