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

Cherish Every Moment!

We have had a bit of a rough week here at the Stone house....Isaiah has clearly hit a growth spurt, which is a great thing, but it also means his medicines have to be tweaked. He started waking up again every hour at night and was wide awake for hours at a time. We spoke with Dr. Norman who had us up his evening dose of Clonazapam to see if that would help. The thought was that since he had been eating so much and growing that his dose of medicine was probably not strong enough for his weight now. Dr. Norman said that is what is hard about babies with epilepsy, they are constantly growing and you are constantly having to tweak the medicine to keep up with their growth. So, upping his evening dose didn't do the trick, so we then upped his afternoon dose and it "seems" to be doing better. :) Last night was a fairly good night. He was up 3 times and went back to sleep pretty easily each time. We have started Isaiah on his new medicine as well, but we have to slowly titrate this medicine and he will fully be at the correct dosage next week. Next week we can start to wean him off of the Clonazapam and hopefully the new medicine (Zonasamide) will work and this will be the medicine he will be on forever.

Other than the sleep issues, the boys are doing great. They both continue to grow and amaze us every day! Isaiah is now getting on all fours and rocking and doing an army crawl. He will also "scoot" from one end of the room to another! This is all new to us because Jackson never crawled....he just started walking when he turned one.

Jackson is being his hilarious self. That boy loves playing basketball day and night! I posted a video of him interviewing his dad about the All Star Game. He is such a sponge and he soaks up everything he sees and hears. I am really having to watch what I say these days. The other day Annabelle was barking and Jackson yelled out, "Annabelle SHUT UP!" Oops. That one is totally me. EEK!

All in all, we are still feeling so blessed and are thankful to God for every hour of sleep that we get. We know this season of life will pass by soon, and are still continuing to take every day as it comes and cherishing each great moment.

Love to you all and hope everyone has a fabulous week!

Lee Anne

2 basketball stars in the making!

Here are some pics from this morning....I now officially have 2 basketball stars on my hands! :) Also, Isaiah is pulling himself up to standing! I walked into his room after his nap yesterday and he was standing up in his crib and was so proud of himself. What a big boy! Guess its time to lower the crib mattress!