Praise Him for a Fabulous Week!

What a wonderful week we have had here! Isaiah is clearly feeling better because his sleep has been sooo much better! Yay! He is sleeping from 7:30p.m.-2 a.m., then 2:15 a.m.-6:41 a.m. (Isn't that funny? Every morning, it's 6:41 on the dot!). It is absolutley amazing how much better you feel when you have consistent sleep. I think Isaiah is feeling the same way because he is just been down right pleasant to be around. :)

Above is a picture of Isaiah at 7 months old in "the chair." I also posted a picture of him at 1 month old in "the chair," so you can see how much he has truely grown in 7 months!

We celebrated Renzi's birthday a day early with a dinner with some family at our house, and then yesterday he and I braved the storm for a fabulous dinner out at Michael's Grill. So yummy and so fun. All Ren wanted for his birthday was to spend a night at our lake house sans kids so I planned for our fabulous sitter Tricia to spend Saturday and Saturday night and all day Sunday with the boys so Renzi and I could go....well, since our lake house was basically destroyed two weeks ago by a pipe that burst, that fun gift almost seemed to drift away...UNTIL...our amazing friends/neighbors George and Donna Nigh offered for us to just stay at their lake house (just a couple houses away from ours). So, the trip is back on! And we are bringing our friend's the Peters' with us too. Yay! Now, let's hope this snow stops so we can get out of town in the morning! :)

Jackson is being his hilarious self this week...his new thing to say is, "But, I CAN'T Mommy." For example, "Jackson you need to get in your bed." "But, I CAN'T Mommy." "Why not Jackson?" "Because I like Mommy and Daddy's bed better."

He is also still wanting to talk about his boy parts...oh dear me. Why the obsession? He asked me today where my boy part went. I told him to ask his dad.

And on that note....I will leave you....

:)

My soul finds rest in God alone....

What a tiring week we had here at the Stone household. We had two sick babies this week, and believe it or not, one baby ended up in the hospital!!! Isaiah had been sick all week and just wasn't getting better. He was diagnosed with a sinus infection on Tuesday, but had stomach issues as the week progressed. By Thursday, he had officially gone almost 24 hours without a wet diaper and lots of throwing up (all over us! yuck!) and other yucky stuff too (again, all over us, double yuck!). I called our pediatrician who thought that since he couldn't seem to keep anything down (including his seizure meds), he had lost a significant amount of weight, and just wasn't looking great that he needed to be hospitalized for dehydration. :( I, of course, refused to go to Children's Hospital so we were lucky to get to go to Mercy hospital and hook him up to IV fluids there. After 12 hours of fluid and an IV antibiotic drip our little man started to perk up. He continued to get better as the next day went on and started keeping formula and baby food down, so our pediatrician said we could go home late Friday night. Yay!

Needless to say, we were all exhausted, so we have spent the weekend trying to recover and were rewarded with a pretty good night's sleep last night from Isaiah. He only woke up 2 times! Yippeee! That was really a needed blessing since Renzi and I went on a much needed date last night to our precious friend JW Peters birthday party and were out a little later than we normally like to be out these days.

I came across a blog today of a family in Texas whose 11 month old is going through chemo. She was talking about being so tired and she said she found a verse that was helping her push through the tiredness. Here it is: "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken." Psalm 62: 1-2

I need to remind myself of this verse every day because I need to remember that my rest does come from God alone. Continue to put your faith in the Lord and he will refresh you and show you the way. So, here's to a good week full of the Lord and rest! :)

Also, this week is Renzi's birthday! How blessed we are to have him in our lives and how lucky I am to have him as my husband. Through this trial we have been through with Isaiah, I am so proud of how strong our marriage is and how much of a team we truely are. I am without words when I think of how much I love this man and how amazing of a father he is. Our boys are so incredibly lucky to have such a Godly, wonderful man as their dad. So, Happy Early Birthday to the greatest husband ever. Thank you for marrying me. You make me a better person every day.

Cheers!
Lee Anne

Boy Parts....

Here's a great story for your Monday....

I took the boys to the doc on Friday because Isaiah was running a fever. While waiting in the waiting room Jackson was playing with the toys and the other kids in the corner of the room. I looked over and saw that Jackson had his hands down his pants. I promptly told him to take his hands OUT of his pants. He replied at the TOP of his lungs for all to hear, "NO MOMMY, I'M PLAYING WITH MY PENIS."

There are no words......

Home Again, Home Again - Jiggity Jig!

This is what Jackson says every time we turn into the neighborhood (see title of post). One of the highlights of our last six months was getting home and seeing the excitement on Jackson's face to see his parents and little brother return home. It was awesome.

A few updates on Isaiah.

1. We are now on offense. We asked the doctor to help us figure out a solution to Isaiah's insomnia. For six months, he has been getting up between 5-15 x per night. This is not a typo. We tried everything, from hiring help, to trading off to letting him cry to trying to bring him into our bed (he wanted no part of that) to praying to saying mean things to each other to try to get him to go to sleep. Nothing has worked - until now. We are - under advisement of our physician, mind you - keeping the little night owl up all day. That's right, no nap. He hates it, but it has completely worked. We are on night four of sleeping all night with only one feeding. OK, forget I told you about this. I don't want to jinx it.

2. We have received so much love and support. If we have learned anything from this experience, it has been patience, faithfulness and courage to ask for help. Although Isaiah and our family has an unknown future ahead of us, we choose to be optimistic. Frankly, none of us know what the future holds. Isaiah may be a star football player, American Idol finalist (we love that show) or something all together different. The lesson we have learned is to enjoy our family each day. Tomorrow isn't guaranteed for any of us.

3. Isaiah is on the move. He is rolling from one end of the room to the other. Almost pulling up from a laying down position and will stand against a piece of furniture soon. He is developmentally ahead of where Jackson was at this age. He is an amazing baby!!!!

4.  Tomorrow, we go to Dr. Norman at Integris, our pediatric neurologist in OKC. She's going to de-brief with us on our trip to Houston and hopefully get Isaiah transitioned into a long term medication for his epilepsy called Zonegran. Dr. Wilfong said it may work it may not. Either way, we are still thrilled to have a true diagnosis so we know what we are dealing with. Thank you for the well wishes and prayers. We'll keep you updated.

Houston, we have a diagnosis.

Thank you for the prayers and support. We now have a diagnosis.

Yesterday evening, Isaiah had a grand mal seizure - full convulsions and loss of consciousness. As weird as it seems, this was what we hoped to see because the video EEG got a full reading of his brain activity during the seizure. It lasted for 2.5 minutes and he came out of it without aid from the Diastat (valium cocktail), a good sign. 

It was a long night because we knew this morning's visit with the doctor would likely shed some light on his condition. 

We were right. Dr. Wilfong came in this morning and confirmed we had a diagnosis. There are four central kinds of epilepsy with 30 different variations - it is a complicated and random condition. Of the four kinds, there are two categories - generalized and localized epilepsy. Generalized can be difficult to treat because they do not originate in any part of the brain and episodes are random. Surgery is not an option for this type of seizure. 

Localized means that they begin in a central area. Often,  the specific point can be identified through an MRI, although Isaiah's brain is still too young and developing to see this spot. 

Isaiah has a localized form of epilepsy that originates in the left frontal lobe of his brain. It is likely a genetic condition, although we cannot find any family members who have had epilepsy. Frontal lobe affects executive decision making and speech, but Dr. Wilfong does not think this condition will affect either. It is not the best kind of epilepsy to have, but it is certainly not the worst kind either. Isaiah's overall development to date is a positive sign, as is the fact that he went seizure free for three weeks recently. Also, there is no forecast on his future. He'll be who he is and we do not have enough information to know anything more than that his prognosis for a healthy future is probable.

So what's next?

Isaiah will go back on the Clonazapam today and then transition to Zonagram, a safe anti-seizure medicine that has minimal side effects. These meds only work in 60 percent of patients, so we may end up changing medicines to find one that works. If he doesn't respond to medicine, we will then conduct another MRI to try to see more clearly the specific area affected. The current MRI shows nothing, but there is a higher resolution MRI (I think of it as MRI HD) that we can do when he is a little older. An alternate treatment is surgery to the frontal left lobe to remove the problem cells. Obviously we don't want surgery, but Dr. Wilfong said this is actually a good course of action if the seizures are not controllable and the risk is minimal (outside normal risk with operating on a young child) and the ability to solve the problem is high. It is a good option, although not for right now.

A few other random notes:

• Seizures don't hurt him at the rate he is currently having them
  
• His sleep is categorized as "normal" even though we know it is not
  
• We will try store bought formula beginning next week
  
• The care at Texas Children's Hospital has been outstanding
• Prayers for a diagnosis worked - praise GOD
  

We are thankful and relieved. We will continue to live normal lives and we are happy that Isaiah is healthy, developing normally at a rapid rate, and that he seems to be very "normal.: We are so very blessed. We come home tomorrow.

The hits just keep on coming...:)

It's been a pretty laid back day here at the Ranch...oh wait, not it hasn't....guess who has pinkeye in BOTH eyes? Yup, it's me (Lee Anne). I had to go to the ER at St. Luke's hospital next to Texas Children's to be seen by a doctor and literally was in line next to a woman with a laceration across her face because her boyfriend cut her. I felt very silly telling the person checking me in after her that I thought I had pink eye. Anywho, I have antibiotic drops and have to wash my hands all of the time, but am ok to be in the room with Isaiah. 

We can't make this crap up. :)

Here are some pics...our nurse today brought Isaiah an exersaucer to play in today which has been a hit and there is also a pic of one of my eyes. Oh Joy!

Toodles!

A little bit of news

First of all, thank you to all the folks who have wished us well and shared their prayers. We are doing just fine.

Our pediatric neurologist, Dr. Wilfong,  just visited us and shared the first bit of information about Isaiah's condition after monitoring him for the past 36 hours. He said Isaiah had about five myoclonic spasm (jerks) during the night last night that showed up on the EEG - we only observed one. This is a contributing factor to him waking up a few of the times. 

The anti-seizure medicine he was taking is now mostly out of his system, which should help unmask the seizure disorder.  He discussed the fact that he is happy to see that his EEG is normal during the time between the spasms. He also said he is happy that Isaiah is developing like a normal baby and its good to see the normal EEG for the majority of the time. Dr. Wilfong says we are moving in the right direction for a diagnosis and we will just continue to monitor for the next few days to see what happens.

Continued prayers are asked for to diagnose his condition, give us a treatment plan and ask for more (uninterrupted) sleep!

Goodnight!

7:30 p.m. and still no seizures.....Here are some pics from today....I'm going to bed....wish Renzi luck tonight at the hospital with Isaiah! Until tomorrow....

Day 1-Complete.

Good Morning....So, little man did not sleep so hot last night and neither did his momma. He was up every hour for about an hour or two, then would sleep for an hour. At least he did a grand performance for the cameras in our room. Did I mention we are monitored by video and audio in our room all of the time? Well, we are...guess we can't talk bad about any of the docs or nurses in our room can we? :)

Dr. Willafong came by this morning and said that so far Isaiah's EEG looks normal and he has not had any seizures or myclonic spasms (the cluster of jerks he has right before he has a seizure) since taking him off of his seizure medicine. He also said that he seems to have normal sleep patterns (?????????????) and that his EEG looks good while he is sleeping. (Once again, normal sleep?????????).

And so we press on....We are now on Day 2 here, still waiting. Renzi and I are going to ask for a ENT to come by and take a look at Isaiah's ears sometime today or tomorrow just to check them out since that seems to be a cause of a lot of his infections which seems to be the cause of a lot of his seizures. He currently has tubes in his ears, but had an infection in both ears last week which led to his last seizure last week. 

That's all for now. Will update more later! 

P.S. We got a hotel room at a hotel adjacent to the hospital so Renzi and I are switching off nights at the hospital. That way at least one of us is fresh from sleep each day. It is also nice to have the hotel to take little breaks....I left yesterday evening and worked out and showered and came back up the hospital. I think this is going to keep us both sane this week! I am REALLY looking forward to my night of sleep tonight! :)

We are here....

We made it to Houston! Our flight this morning was very very very early and Renzi and I both were having a little anxiety, so needless to say we did not sleep much last night and had to get up at 4:45 this morning. Isaiah did great on the flight, so that was a great start to the day!

We got to the hospital at 9:45 and were in our room and hooked up to the EEG monitor by 11:00 a.m. This hospital is incredible and it was so nice to have everyone aware that we were coming and ready for us. Our previous experiences at another hospital were not so great for us, so this was almost a treat.

We just met with Dr. Willafong, who is Isaiah's attending physician. He seems very nice and knowledgable and he informed us that we are not going to be giving Isaiah any more of his seizure medicine to see if we can induce a seizure so that they can monitor it on the video. Other than that, we are in our room for the time being just waiting. 

I included two pics of Isaiah above....one is right after they hooked up all of the EEG cords, he was so tired that he just passed out. The second is one of him in his "turban" after he woke up. He doesn't seem to know that there is a large amount of cords sticking out of his head covered by some white goo. They put all of the cords in a ponytail like thing and there is one piece of tape that is making his eyes a little squinty and Renzi and I keep joking that he looks like "Kung Fu Panda." (Kung Fu Panda is currently Jackson's favorite movie. Next time you see him you should ask him to do Kung Fu for you. It's hilarious).

So, that's where we are right now. Thanks for reading and thanks for praying!

Love, 

Renzi, Lee Anne, Jackson and Isaiah

Next week is a big week for us.....

We had a fabulous and blessed Christmas this year and we are so thankful for God's blessings upon our family. As we get ready to begin our journey for answers this next week at Texas Children's Hospital I am reminded of this song by Ginny Owens. 

The pathways are broken

And the signs are unclear

And I don't know the reason why You brought me here

But just because You love me the way that You do

I'm gonna walk through the valley

If you want me to

Cause I'm not who I was

When I took my first step

And I'm clinging to the promise You're not through with me yet

So if all of these trials bring me closer to You

Then I will walk through the fire

If You want me to

It may not be the way I would have chosen

When You lead me through a world that's not my home

But You never said it would be easy

You only said I'd never go alone.

--Ginny Owens (If You Want Me To)

These past 6 and a half months have been so hard on all of us, but we wouldn't have made it this far without our faith in God. It would be so easy to be angry at him for putting us through all of this, but Renzi and I know that there is a reason for this and we are constantly counting our blessings and listening for reason.

As we go through this next week we just ask that you all pray with us for strength, clarity and answers for our sweet baby boy. We pray for the doctors who are our attending physicians at Texas Children's that they will hear our cries and heal our boy. We will be blogging throughout the week so please check back here for updates on Isaiah. We love you all and thank you for your support!

Much love,

Renzi, Lee Anne, Jackson and Isaiah.