new blog...kind of

I have combined this blog with a family one with updated info on our whole family, not just Hewitt, but I've imported all of this blog into the new one.  If you're interested you'll find it at

http://leroyfam.blogspot.com/

Still Doing Great

Hewitt at Tolmie State Park last week with his cousins.


Things are going GREAT! Hewitt is still seizure free. The only thing that hasn't really improved is his sleep disturbances. We're coming to accept his wakefulness at night as part of this ordeal and hoping he will eventually grow out of it like he is hopefully doing with this awful condition! We are just thankful to have him well, with us, growing, listening, loving and just being an ACTIVE part of our family again. He LOVES his new baby brother and has been so sweet with him. It's still amazing to me that things stopped so suddenly and for so long now. Much praise going up to our Savior!

New Brother

We welcomed Phoenix Hudson on Saturday, July 11th at 2:37 PM.

5lbs. 14 oz. 18 3/4 inches

Open House at School

EEG Update

Back from his EEG. He did so well, thanks for your prayers. He was such a trooper and made it very easy on us! I was certain while we were there that he was having them in his sleep still. Actually having the opportunity to just watch him sleep I saw a lot of movement...still hard to tell if it was seizure activity or just regular sleep twitches. The Dr. came in this afternoon and told me he had to review 4 hours worth of the EEG to even find one discharge...and that discharge was only 1 second long. This is very good news and more than we were expecting to hear. He said the only other discharges (abnormalities) he saw were in sleep transition and that they also were very brief, about 1 second. The Dr. was very excited about the report and seemed pretty amazed that it could look so "normal" after being so bad as recent as January. We are rejoicing in this as it came as a big surprise to us. We will keep treatment the same for now and hopefully he will just continue to do better. I will post pics later, but wanted to get a quick update on here while I had a minute on the computer.

Quick prayer request

One of Hewitt's meds has been switched to a generic and I've heard really mixed things about whether or not it's a good or bad switch. Some say it shouldn't make a difference while others are very adamant about staying on the name brand. His Dr. didn't seem concerned about it, but I hate to change ANYTHING when things are going so well. I'm going to give a call to the epi today and see if he'll prescribe it as the name brand and hopefully the insurance will agree!

Some updates

May is a busy month for our family and I am so behind in blogging! Hewitt continues to be seizure free, although he had a fever last week and I could have sworn I saw some hand twitching in his sleep, but in the daytime we never saw any proof of it. I'll never know for sure, but rejoicing that they're still gone.

Praises - Hewitt is potty trained in the daytime - even through nap. I was beginning to wonder if this would EVER happen and haven't pushed it because of everything else he's been going through, but I feel like we're finally over the hump! (for now anyway)

Last week he woke up having hallucinations about spiders and was up for about 4 hours convinced there were spiders everywhere, including crawling on him and us. It was absolutely horrible, but thankfully it's all over and we haven't seen any more of this night time behavior since. We think it was most likely his medicine, but we're starting to see this side of Hewitt we haven't seen before...he's scared by things fairly easily. Much easier than his brothers. This has really caught us off guard as he tends to be the "tough" guy around here. It's nice to see his sensitive side though. This week there's been a bear roaming around Shoreline and he was very fearful that it was going to claw it's way into our house!

He is memorizing whole books and reciting them back to us as he looks through the pictures. This is amazing and such sweet music to our ears. Not only that but he's retaining all kinds of songs not only from the radio, but also from church. It's so fun to see him engage and have interest in these things again.

Prayer requests - Next week is going to be a very busy week for the whole family. Hewitt does not like leaving home often and we're going to be going A LOT. A few of the things happening:
-we're in the process of moving across the neighborhood, we'll be closer to the church, closer to the school we want for the kids and saving some money. we're halfway moved, but need to finish this weekend
- we have a civil court case on wednesday (27th) morning very early that we're nervous about. someone is trying to squeak 5k out of us, and we hope that the truth will prevail and we will not have to be stuck with this debt
- our annual graduation celebration is the 29th, the friday following our court date and we have much preparation to do for this. we have lots of help, but it's still a lot to be done in one week - hayden will be taking the teens to an event the following morning (30th) as well
- the following monday (june 1st) hewitt has a 24-48 hour eeg scheduled. we're checking up on his progress, trying to see if he's having anything going on in his sleep or seizures that we're not seeing. he still has days that he acts like he's had them even though we're not seeing anything.

So, if you're still with me. We covet your prayers and appreciate your support through all of this. My next update will most likely be after our court date or after the EEG.

Spring in Seattle

The fever bypassed Hewitt, thanks for your prayers! Here's a few pics from this last month...Everett and Lincoln got to spend a weekend at Nana and Papa's for a fishing derby, and the rest are from a trip to a local park. Hewitt braving the twisty slide...it took some coaxing to get him to come down, but he did it all by himself! We are still seizure free and loving it!

About all I can say is...Praise God!

Quick prayer request

Titus is sick with a fever and some stomach issues today, and Hewitt threw up last night. I am a little nervous to see if a fever will follow. So far, he's been okay today, but the last time Hewitt had a fever was in the beginning of January and it triggered a massive amount of seizures. Please pray that he will be protected from whatever Titus has or that the medicine is enough to keep the seizures away even with a fever. We are ready for whatever, but hope that this won't be a point of regression. Thanks!

Birthday Pictures

The boys had a great birthday party this year. We wanted to keep it small, so we asked the Mallory family out at Camp Gilead if they would host a scavenger hunt and sleepover for them. They are friends of ours that have 5 little boys. We invited one other family that has 2 boys, so all together we had 11 boys 7 and under! It was a blast. They had a scavenger hunt around camp dressed up in their hero costumes, cooked smores over the camp fire, ate cupcakes and finished the night by watching Kung Fu Panda, and then got to sleep in camp cabins! Thanks to Camp Gilead and the Mallories, (and the Webers for coming too :) )

It was such a blessing to watch Hewitt run and play with the other boys, even running with a light saber in his hand WITHOUT a helmet. Praise God for this awesome break!

HAPPY BIRTHDAY HEWITT!

Hewitt turns 4 today! I can't think of a better way to be able to celebrate his birthday then enjoying it with almost 10 weeks of seizure freedom behind us. YAY Hewitt! He continues to improve in a lot of ways. I think the most remarkable improvement would be his memory. He is repeating and singing whole songs and often times remembering things I tell ALL the boys, better than his two older brothers. I don't know if I shared this earlier but we've been able to relax a little bit on his diet restrictions and he was able to help with cupcakes that we made for his cubbie class at AWANA tonight. Powdered sugar frosting and all. Hopefully they won't make him sick!

We continue to be concerned about his gross motor skills and encourage him to run and play as much as possible. I will be posting an update on a recent meeting we had with the school district trying to get him some services in thier special needs preschool. But, for today, I just want to say, Happy Birthday Hewitt! (it's also Lincoln's 7th birthday) We are proud of the way he's endured this last year and look forward to seeing how things will (hopefully) continue to improve this next year.

At last, A GOOD NIGHT'S SLEEP

I woke up this morning and realized we hadn't heard from Hewitt ALL night long. After a quick panic, and a check of the video monitor, I was able to rejoice that he made it through the whole night for the first time in 7 weeks! It was similar to the feeling you get when your newborn sleeps through the night for the first time. You wake up worried something is wrong and then quickly realize it's all for nothing...that you finally got a whole night's rest and how wonderful that feels! I guess it's a good preparation for July. A nice reminder of those sleep deprived days that we will soon be enjoying again!

7 weeks!

We have hit 7 weeks and are so excited! Hewitt is back to his old self...curious, talkative (understatement), obnoxious and sweet. He has an insane amount of energy and is still struggling with some social skills, but I believe he'll get there! We are loving (sometimes with an effort) every minute of him and feel so thankful to have such a great break. He is singing songs he's learning at church, and last Sunday he even went up front to lead some hand motions for a song with some other kids. I wish I would've known it was going to happen so I could've recorded it...it was such a great moment to witness. He had no clue what the hand motions were before he went up but watched the others and caught on quickly...loving every minute of the attention! He and Titus have also been developing a very sweet relationship over the last few weeks that did not exist before this break. They are little buddies and love to get silly and laugh together.

It feels good to be able to write a weekly update with good news! The sleepless nights are going better. Not perfect, but it feels more manageable. Thanks for the prayers!

Still seizure free

Yesterday was 6 weeks without any little seizures! 4 weeks without any at all. We continue to enjoy having our boy back, and love watching him play like a 3 year old should. We just praise God for this change and are trying to enjoy it while it lasts! Thanks for your continued prayers. He is still struggling with getting a full nights sleep. He wakes often, scared and crying. We think it's a side effect of the new med and hope it goes away soon. It has been 6 weeks though, so I'm beginning to wonder! It would be a prayer request for the whole family. He often wakes up the other boys when he wakes up screaming or crying, not to mention us! We are all slightly sleep deprived these days. I will try to get an update again soon.

#5

We had our second ultrasound today, confirming that we are in fact pregnant with boy number 5! I am currently without comment on this information.