Back from Destin!

After last week's craziness, Renzi and I were happy that Isaiah started feeling better towards the middle of the week...We got him his antibiotic for his upper respiratory infection and got him regulated on his higher doses of his seizure meds and he started to perk up about Wednesday. We made a game time decision on Thursday and decided that we were ok to go to Renzi's dad's wedding in Destin on Friday! Tricia, our regular sitter stayed at home with Isaiah and Jackson went to Wichita Falls, TX to stay with his cousins Riley, Suzanne and Andrew.

We are so happy that we were able to attend! We had such a wonderful time hanging out with family. We stayed in a condo with Grant, Brooke, Ginny, Dave, Chelsea and Brett(Marcine's daughter and her husband), and Kevin (Marcine's son). It was so nice getting to spend time getting to know Marcine's family and letting loose and relaxing.

The wedding was held on the beach at sunset and it was truely fabulous. I am posting some pics above that I totally stole off of Brooke's blog. (Thanks Brookie!) :)

We returned late Sunday night to a good report from Tricia. Isaiah slept 12 hours both nights, only getting up once each night! We thought there was no way that would be a repeat performance, but lo and behold....Isaiah has slept 12 hours the past 2 nights for us!!!! We are hoping and praying this will become a trend.

Jackson had the best time hanging out with his cousins. I swear he came back more grown up! I sure did miss both of my boys, but it was sooo nice getting to hang out with Renzi alone and take a little break after last week's shinanigans. :)

We got an email last week from Dr. Willafong in Houston and we are awaiting the next steps to prepare for a surgical evaluation at Texas Childrens Hospital. I will let you all know when we know something.

The only bad thing about coming back to OKC, is that somehow I brought back with me an upper respiratory infection. I went to the doc this A.M. and am on antibiotics, but there is no sick days for mommies. :( Praying I heal fast...there is no time for sickness in the Stone house!

Much Love!

Lee

Our appointment with Dr. Norman

So, we had our appointment with Dr. Norman this morning.....

Basically, she prepared us for the fact that we are probably going to need to start exploring the brain surgery option for Isaiah. Usually, you have to fail 3 meds until they will even consider the brain surgery option, but because of Isaiah's prolonged seizure times and because he has already failed 2 meds, she thinks it is time that we go ahead and start scheduling the surgery at Texas Children's Hospital for sometime in the very near future.

The pros of this surgery:

-This could very well be the cure for Isaiah's eplilepsy!

-Because he has focal/localized epilepsy of the left frontal lobe, this makes surgery that much easier of an option because they can probably find exactly where the abnormality in his brain is, remove it, close him up and be done. Fairly simple.

-By doing the surgery at this age (and anytime before he is 2), his brain is still developing and growing. The brain is very "plasticky" and surgery at this point in their lives is better than if he was older. This means he should recover fairly quickly.

-Based on how strong and resilient Isaiah is, he should have no problems with the surgery and should recover quickly and bounce back to being a normal, healthy baby boy.

The cons of this surgery:

-Like any surgery, complications can arise

-Partial or Whole paralysis

-Stroke

-Complications from bleeding during the surgery

-Death

Renzi and I are ok with the surgery. We feel 100% confident in Dr. Norman and know that she will lead us in the right direction. And we are encouraged that maybe, just maybe, we could put an end to the epilepsy and Isaiah will never have to deal with any of this again for the rest of his life. Of course, we are scared and nervous about the possibility of our baby being in a major surgery on his brain, but we continue to feel and know that God will NOT give us something that we can't handle. We have been through so much already and we have not crumbled. (yet! ha! :) just kidding).

Dr. Norman was going to speak with Dr. Willafong at Texas Childrens today and try to get us on the books, so it could be 6 months away, or it could be 2 months away. In the meantime, Dr. Norman has advised us to bump Isaiah back up on the Clonazapam to the higher dose and to start weaning him off of the Zonasamide since clearly that is not working. We will begin titrating up on a new medicine called Topamax in the next few weeks to see if that will work. Something interesting that was said about Clonazapam today was when we were discussing the Diastat and why it didn't stop the seizure on Saturday. Dr. Norman informed us that Clonazapam and Diastat are made up of some of the same properties, so therefore, with these drugs, at some point its almost like your body becomes immune to them because it is already in your system. Therefore, she has upped his dose of Diastat in case of a seizure, which should take care of that. It was nice to have an explanation of why the seizure didn't stop with the Diastat because that has been weighing on our minds heavily lately.

Isaiah is still running a fever, but we are rotating Motrin and Tylenol and it seems to keep him comfortable. His poor little nose is just a running and he has a horrible cough, but as far as we can tell, all of the major drugs/sedatives are out of his system and he is back to full strength of crawling, pulling up, etc. Whenever he starts to get a little fussy or sad, Jackson runs over and gets in his face and tries to make him laugh. It works every time. Talk about a momma's heart overflowing with love and wanting to BURST out of my chest. LOVE, LOVE, LOVE my boys.

I promise we are ok. We are not sad. We are not mad. We are hopeful. We are blessed. We are prayerful. We are loved.

Thank you everyone for your continued support.

With much love,

Lee Anne and Company.

ER AGAIN

You probably won't believe me when I write this....but we had to make yet ANOTHER trip to the ER this morning. Isaiah started running a fever around 11 p.m. last night and it just wouldn't break. Knowing his track record with fevers and seizures we called Dr. Coleman (on call for Dr. Norman) and he told us to go back to the ER to get him checked out. 5 hours later we are home and my poor baby has an upper respiratory infection, probably something that he caught while in the hospital this weekend. Antibiotics have been perscribed, his Clonazapam has been upped, and he was given a half of a dose of Adivan to help combat any seizures he may have today until we have our appointment with Dr. Norman tomorrow morning. We are home now and Isaiah is happily playing in the living room. His fever is down and hoping that he can sleep some of this off this afternoon.

We are all ok and doing fine. Just want to help our sweet strong baby get well! While waiting in the ER Renzi and I decided to talk about all of the positives from the last 9 months and I tell you what...there were a lot more than you would think. Most importantly, we have two healthy happy boys, our marriage is stronger than ever, and we have an even stronger faith in God than ever before.

So with that, I thank you all again for your continued prayers and support. Let's hope for a better post tomorrow!

GREAT NEWS!

Good News! Our Isaiah is such a strong kiddo!!! He has made an amazing turnaround in the last 15 hours. Under his sedation he woke up and tried to sit up and they decided last night to take the tube out early. He has been doing wonderfully breathing on his own, without seizures and his vitals are amazing. We just saw Dr. Coleman, the neurologist on call for Dr. Norman and we now have a plan in place for meds until we meet with Dr. Norman on Tuesday. Dr. Coleman has even said that if we want to we can go home this evening! We are so happy that we can take Isaiah home to get back to normal. Thank you all for your prayers and we will update more as we go through this next week.

"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom."-Isaiah 40:28

"but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
-Isaiah 40:31

Isaiah at Baptist Hospital

Update for everyone:

Isaiah had a seizure this morning that didn't stop with the Diastat administered at home. After 12 minutes I called our the neurologist on call and he said we should call 911. EMSA and the Fire Dept. arrived at our house in 10 minutes and they started administering valium and trying to get an IV started. We went to Baptist via ambulance and when we arrived at the hospital the seizure had now been going on for 55 minutes. The doctors administred adivan and more valium and this still did not stop the seizure. They then had to put Isaiah in a medically induced coma and put him on a ventilator to try to get the seizure to stop.

This worked and Isaiah is now at Baptist hospital in the PICU. He will continue to be sedated with the breathing tube in throughout the night to try to stop further seizures to give his brain a rest. He had a CAT scan while we were there and all looks normal, so the doctor thinks that this seizure did not cause any brain damage that he can see. The only thing pointing to him having so many seizures this past week is the fact that we have been weaning him off of Clonazapam and the Zonasamide is clearly not working on its own. This will all be discussed tomorrow morning when the doctors do their rounds.

Renzi was in Las Vegas and jumped on the first flight out to OKC and made it to the hospital by 6 p.m. We are both worried, but encouraged by the fact that Isaiah vitals all seem normal. Please pray for no more seizures while we are in the hospital and when we come home. We will probably be in the hospital until Tuesday or Wednesday. I will update more when I can.

Lee Anne

Our Vacation!

Well, we survived our first official family vacation! BARELY. :)

We had a really great time and of course, knowing us, we had a few mishaps....

We began the week in Vero Beach, Florida where Renzi had a conference he needed to attend. We rented a cute condo in an area called Sea Oaks. It was a very short walk to the beach and we were told we had access to the pool and tennis and beach club. The first day we were there we packed up our beach bags and headed to swim at the pool and the beach. Unfortunately, when we got to the pool we were told that unless you were potty trained you couldn't get in the pool. EVEN if you had a swim diaper on! So, we scrapped the pool and went straight to the beach. Jackson was loving playing in the "sand box," but he was very wary of the ocean. Isaiah on the other hand, LOVED the ocean and loved eating the sand. EEK!

The next few days it rained torrential rains in Vero Beach....so were were pretty much stuck inside. We did venture out for lunch and got totally soaked. It was really fun though and the boys laughed and had so much fun together in the new double side by side stroller I bought for the trip.

On Saturday, when Renzi finished his conference, we packed up the mini van we rented (yes, I said mini-van) and headed to Ft. Lauderdale where we stayed at the fabulous vacation home of Kathy Taylor and Bill Loebeck. They were so gracious to open their home to us and it was absolutely breathtaking. They lived downtown right near the beach and their house backs up to the Inter coastal Waterway so there were amazing boats that passed our house all day every day. The house had a pool and a hot tub which we loved! Jackson even decided he liked swimming!

We got to spend time with Ginny and Dave who flew in from D.C. and Jackson and Isaiah loved spending time with "Nee and Diddy." They were so helpful to us while we were there and we even got to go out on a grown up date with them Tuesday night. We went to the new W hotel and ate at 954 steakhouse which was right on the beach and was awesome.

There was a little bit of sadness while we were on vacation though. Sunday when Isaiah woke up he just wasn't acting right and seemed to be running a mild fever. We kept a close eye on him and after his afternoon nap when Ginny was holding him he had a grand mal seizure. This one lasted 4.5 minutes and we had to give him Diastat to stop it. It was particularly upsetting because this was his first seizure in over 3 months. We called the neurologist on call and they suggested we go to the ER to diagnose why he may have had a seizure. Renzi and I drove to Broward County Hospital (ironically, this was the exact hospital where Renzi was born!) and the nurses and doctors there were awesome. We got right in and right away we found that Isaiah did in fact have a fairly high temperature. After the doctor came and saw him he was diagnosed with a right ear infection and sinus infection. The doctor also said the tube in Isaiah's right ear was slanting sideways, thus, the reason for the ear infection. Renzi and I were thankful to know that we knew what had caused the seizure and were glad it wasn't just a fluke seizure. We opted to have the 3 day dose of rocehpen antibiotic in a shot for Isaiah just so we could make sure we nipped the infection in the bud. This meant for the following 2 days we would have to bring him back to the hospital for the shot, but we didn't mind doing that.

After speaking to our neurologist, she was a little disturbed that Isaiah had a breakthrough seizure because his medicine should prevent the breakthrough seizures even when he is sick. She upped his dose of zonasamide and we will discuss this and other issues regarding Isaiah with her on Tuesday when we have our next appointment with her. The Zonasamide seems to make Isaiah very very fussy, so I am guessing that we may have to try a new medication. He is also almost finished being weaned from the Clonazapam so that could also be contributing to his fussiness and breakthrough seizures.

Despite all of this, we still had a wonderful vacation and it was good for everyone to get out and see the sun for a few days. We ask for continued prayers for Isaiah and for the right medication. We also ask for prayers for his sleep and fussiness. We know that we will figure this all out, we are just taking it one at at time still and continuing to put all of our faith in God. We know he is with us every step of the way.

Much love!

Lee Anne

Fun Times!

This past week was a great one! Renzi and I took a fun trip to Palm Springs with OU last Sunday, Monday and Tuesday. Renzi was a "celebrity" at the Sooners in the Desert Golf Tourney so he "played" golf (those of you who know him know he doesn't play golf, he just rides around in the cart), and I slept in, went to the spa, laid by the pool, took a nap and ate yummy food. :) We came back Tuesday afternoon and Isaiah apparently decided he had given us enough grief and has been sleeping beautifully since we returned home!

Thoughts on why he is sleeping better:

(1) We are finally up to the correct dosage on Zonasamide, the antiseizure medicine that is for localized epilepsy.

(2) We saw our neurologist when we returned from our trip and we have begun the process of weaning him off of the Clonazapam.

(3) I bought Johnson and Johnson's Bedtime Bathwash. (Who knows? It may or may not be working. All I know is he has been sleeping better since we started bathing him in the lavender!)

(4) God has decided to give us a much needed break! :)

In other news, Isaiah is all over the place! He is crawling EVERYWHERE!!! It's so cool to watch and it is one other develepmental milestone that he has reached with is so wonderful because it means that the epilepsy is not causing any developmental problems! Praise the Good Lord!

This past weekend we went to the OU alumni basketball game against Baylor. We took the boys and Jackson went out on the court when they announced Renzi's name. I posted some pics of the day. Isaiah was so funny. He slept so hard during the game! I guess when I shush Renzi at night I should know by now...when that kid is asleep, he is ASLEEP!!! After the game we headed to Wichita Falls for Renzi's cousin Suzanne's surprise 40th birthday party. We had a ball! There was a band and Jackson danced all night and loved playing with his cousin Riley! I also posted some pics of Jackson dancing with Suzanne. SO Cute!

We are heading on a special trip next week to Florida with the boys! Our first family vacation as a family of 4! My mom is also joining us and so are Ginny and Dave! We are spending a couple of days in Vero beach and then we are heading to spend a couple of days in Fort Lauderdale. I am so excited to show the boys the beach!!! It's going to be fabulous!

I will for sure post pictures from our trip. In the meantime, thanks so much for your continued prayers. We appreciate them more than you know!

Much Love,

Lee Anne