Need to do this more often!!!

I forgot about this and need to keep up it up!

So to get this in writing, I just had to share!  The other day we were wrapping up fair and we were all in the camper eating and joking around and Chris says to me: "Ma, I don't need your comment!"

He doesn't miss anything! :)  He's heard his momma say that a time or two!!

Bang Bang!

Andrew has started shooting sports and who else is his coach...but me!! I can count on one hand how many times I've shot a gun, although this is just BB gun, Drew is quickly learning how big of perfectionist I am! :)

I was helping him with his stances tonight and at one point he was trying to tell me how to do it and I said, no you need to do this and that and so on and so on. As he was correcting me, the instructor came around and said...actually your mom is right! I have held that over his head!

I am loving this little activity we are doing together!

Early Christmas

Driving home from Omaha this a.m./afternoon, I got to thinking about a year ago and what we were doing. A year ago...we (Chris and I) were driving back and forth from Omaha 3 days a week for vital stim therapy. We met an amazing speech therapist, as I have mentioned many times before.

A few weeks ago, after having spent part of August, all of September and most of October with pneumonitis, we revisited our pulmonologist and he asked the question: Do you think he has allergies?

I was adamant that he didn't because it wasn't like my older boys that had been diagnosed. So, we had a little discussion and we decided to test him anyway, since our deductible was met. Sure enough! He had 14 out of 15 positives and he was started on Zyrtec daily along with an inhaler twice daily and 2 inhalers as needed! Whew...that's a lot, but he takes it like a champ!

At the same time we met a new neurologist to Omaha at Boystown and immediately liked what we saw. She was so good with him and joked around and was very down to earth. She increased his seizure medication to the minimum recommended dose and WHOA! What a difference!! You can always tell he is feeling better after a dose increase because he gets wild and in to everything!

We have been doing so good and he had gotten in to a few drinks (7up and chocolate milk) without thickener and much to the moments after me holding my breath...he didn't choke, cough or sputter, so it built my confidence and I spoke with Jen and we got a swallow study lined up! I knew it was because we had his allergies under control.

Today we had our swallow study and he passed!!! Not totally. he aspirated some nectar, but he was also crying at the same time! He did well with thin too with aspirations on large boluses, but managed small boluses well. She said she was comfortable with going to nectar and VOILA! Here we are...after a year of honey thick liquids we get to slowly introduce nectar thick to him.

I wanted to cry as we walked out of the flouro room! I did end up crying when I called Jason but it was all tears of joy!

He has 2 new words that he is using repeatedly...hat and up. He also throws in Papa and ball. We celebrated his birthday last weekend and he has really enjoyed playing with his toys. I'm so excited to see what is to come with him.

Matt-isms

Matt is always one to come up with a wise thing or two to say. Tonight he was on a roll.

Early in the evening we were talking about Christmas gifts and who had called the most beetle bug car colors out for the day. I said I was ahead and of course he argued. I said...I'm sorry son, I think you have it backwards. His reply...I have it frontwards, you have it backwards.

Then later at my mom's house while we were working on his turkey project, my sister and I were giving Andrew a hard time about negativity and we were saying he was a negative Nancy, then she said she was going to start calling Drew a Debbie Downer and so Drew asked what that meant. Without skipping a beat, Matt pipes up...it means you're a loser!

OF COURSE we corrected him and educated him on how that was not nice and inappropriate and Drew was a good sport.

For those that are around Drew for a long time, you will learn that he talks...A LOT! He was once again on a non stop roll and Matt all of a sudden goes...all I hear is blah, blah, blah, when you talk!

Yet more correction.

He had another good one in their tonight, but I can't remember what it is. This kid definitely has his mother's quick wit. Not that Jason doesn't have it, it's just that he isn't as quick to voice it! :)

Dos!

Matthew has 3 little hispanic girls in his class. After the first day of class he came home and was so proud of himself.

He said..."Mom, I said 'Hola' (sp?) to them."

I then asked what they said in return and he explained that they shared the same sentiment. He then went on to say that when they said good bye that the one little girl said "Dos."

Andrew without missing a beat says..."That's the number 2!"

I had to chuckle. Matt argued and of course Andrew had to win, but we got it smoothed over.

Later when talking with my sister we decided that he probably meant "Adios!"

Set Back

So...I was so up on a high for how well we are doing. This week however, we've had a minor set back. Our seizures are back after not having any for 2 months.

Thursday, he was working with his therapist and in the midst of therapy he had an atonic seizure...the ones where he loses his tone. I just had him recoup, but I'm pretty sure that it scared the heck out of his therapist. Then shortly after therapy he had another one and he was standing up and fell and hit his head.

Since he's been very unsteady on his feet and it comes and goes. I'm sure I need to get a call in to Denver Monday, and am expecting them to up his meds, but it remains frustrating. I know he's off because he's been content to lay on the floor and play tractors. Usually he's climbing the curtains.

I guess we will see what next week brings.

Good Things Come to Those Who Wait

We've had some more exciting things happening around the house lately.

On Aug. 6, we went to Omaha and participated in the Nebraska Epilepsy Walk with 19 members of our families. It was a tough day for this ole mom. It was emotional for me because it made it real. The last 6 months have felt like a dream, like we would wake up from it, but we are learning that our reality is different. The whole family had a great time and we hope to have more participating with us next year. It's a great family event to plan on year after year.

ANYWAY, that same weekend Chris had another little sinus infection and cold as I was getting over bronchitis. He started to drain copious amounts of green goo from his eye that was directly above the tube. So we pulled his NG and were told to put it in the other nare. It was like immediately both eyes started draining copious amounts of green goo and so after some texting with our family physician, he said to leave it out and it's as good as time as any for a trial run.

I am happy to announce that we have been tube free for 2 WEEKS!!! He is taking up to 8 ounces of honey thick liquids at a time and on Tuesday of this last week he started to drink out of a sippy cup. Now, mind you, our sippy cup has the spill proof valved removed, but at least it's not an all out mess.

His seizures seem to remain under control and Denver has called to check up on him once since we've been home and continue to be very happy with his progress. They drew one set of labs and they came back negative. Although that is good, still no answers. I'm learning to forego answers with progress!! :)

Chris starts speech on Monday and I am anxious that we will start making leaps and bounds in that category. I should be prepared for baby steps though, as that's about how quickly Matt did it.

This coming Tuesday the two big boys start school and although Andrew says he is not excited, I know he is. Matt is clueless, as always. He doesn't miss much, he just doesn't worry about it. He will go where and when I tell him to go. Andrew on the other hand needs to know what we are doing 6 months from now! They are complete opposites.

Floating on a cloud

So..minus the slight bronchitis set back for me since we've got home...I've been so excited with the progress we made in Denver.

Wednesday they informed us that he had no seizures while we were in the hospital...of course not why would the kid do something that convenient! :) However, they did see more discharges but they were rare. His EEG is still considered abnormal though.

As far as the discharges go. Chelsea explained them in a way like his brain turns on a switch to have a seizure and then quickly shuts it off, therefore not having one, but the trigger is still there. She said this is very promising because it means that his meds are keeping him under control.

She said that she will have to tweek them as he gets bigger and needs more, but her goal is for him to be seizure free for 2 years and then wean him off his meds. However, that means no seizures, not even 1 seizure. But we will get there. I have hope now.

She kept saying that she was so excited and couldn't believe how well he was doing! So she decided that we didn't have to be back to Denver in 3 weeks, but instead 3 months! MONTHS!!! Can you believe it?!?!

Instead in 3 weeks we will had to Omaha, to get in 2 more treatments with our favorite speech therapist, Jen. I'm hoping we are close to no NG by then. He's taking 3 oz orally 3 times a day. I have to get him worked up to 4 to get him off his bed time feeding, but I'm hoping that he will continue to do well and Monday we will start 4 oz with meals and at bedtime. I just need him to suck through a straw, but hey...if that's the worse thing he's not doing...FINE BY ME!

The big boys are bummed that they don't get to go out to Denver with us, but they will live. They were happy to see us home!

Lighter

If you could see my face today, you'd see the large smile that is on my face.

Last night was another long night, but it is more so because I wasn't feeling well and I was crammed on a little bench type bed with my ginormous husband. Chris slept well.

The epileptologist rounded on Chris this a.m. after going over his EEG and they reported that he had been seizure free, but had what they called discharges from the back of his brain. YAY...we got location! :)

These discharges...if i understand right..are the brains attempt to trigger a seizure, but it doesn't get to a full blown seizure. This made me happy and the epilepsy team happy, because he is still having triggers but it's not getting to a seizure. They said that this is most likely because his meds a right where they need to be.

They have been very happy with his progress and at first we were going to have to be back here in 3 weeks, but they changed it to 3 months! :)

They said that his control is good right now and they are very happy with his progress. They will keep him until tomorrow to see if he has any other activity.