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Sorry for the bullets-so much to say...

• Since my last mega-post we decided we are not doing the Ketogenic Diet right now. Jim (my father-in-law) noticed that if we introduce the Keto Diet and Topamax at the same time we won't be able to figure out which one is working. That made sense to us and also made me feel relieved. This allows us to let Oliver drink as much water as he wants which solves some of the issues with Topamax. Dr. Mikati was in total agreement with us about this but, did ask if we could stick with the Low Glycemic Index for now. I feel fine about this because again, if we go changing too many variables, it makes things more confusing for Oliver's treatment. However, I am going to relax a bit about the LGIT. Go with the flow a bit more and slowly bring back in some carbs. I'll still keep the foods similar for now as we work through all of this. Overall, I feel like the death-grip of the diet has abated.
• The Topamax is controlling the seizures but it is making Ollie VERY dopey. He is like a drunk sailor all day long. He is falling and floppy- a continual space cadet. It is a challenge to keep him from hurting himself as he seems to have no spacial awareness. We are hoping this will get better. We plan to call the doctor tomorrow if there isn't improvement.
• As far as Oliver's development we have no idea where he is since the side effects are so problematic. When his seizures went away before he usually "took off" developmentally. This time we can't tell much due to the fact that he seems stoned most of the time. It is frustrating to "fix" one problem (the seizures) but trade it for another (drunk toddler). I mean we are thankful, but we also miss our wild, alert Oliver.
• The photos above are from his Easter Egg Hunt at preschool. The teachers there are so wonderful. I feel such gratitude for their prayers and love. Those hours each week when I get a break and know that Oliver is safe and well cared for, are precious to me. Anyway back to the hunt, Oliver, just wasn't into it. I just decided to let it be. Another year, hopefully and he'll get it?

Daily Bread

If and when a horror turns up, you will be given grace to help you. I don't think one is usually given it in advance. "Give us our daily bread" (not an annuity for life) applies to spiritual gifts too; the daily support for the daily trial. Life has to be taken day by day, hour by hour.

-CS Lewis (of course)

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Since Saturday Oliver has been seizure free. What a welcome break! Thank the Lord! It gives us a chance to exhale and release some of the residual stress. The break from timing, monitoring and recording his seizures is such a blessing. It takes a significant amount of time and mental energy to sustain that level of care throughout the day. Needless to say we are relishing this current rest period :)

This morning at the pediatrician we learned that Oliver's wheezing is much improved but, he does have an infection. I think that means it is pneumonia (?), in his upper right lung. We are doing all the right things to treat it so, hopefully Oliver will have clear lungs soon. The dr. was encouraged by how well Oliver seemed to be feeling despite the little bit of wheezing. Overall, we feel like we have the worst behind us with this round of wheezing.

While we were there we asked about Oliver's left foot. As many of you have seen, mainly when he dances, he doesn't flatten his left foot. It makes for really cute dancing but, it isn't going away or getting better. It is hard to keep shoes on him (particularly the left foot). He isn't jumping with both feet yet which is clearly related to the left foot issue. Our pediatrician thought that this issue might be due to strength differences but, that doesn't ring true with me. He did send us home with a referral for a physical therapy assessment which, makes me happy. I plan to ask Dr. Mikati about this issue today. I have a hunch it is neurological because when Oliver has seizures, the left side has more involvement. This isn't a huge deal right now but, I fear if we don't intervene, as he gets older, all this won't be so cute.

Can't wait to report on the 6 hour road trip with our ever charming, always obedient, 2 year old :)

Resting

We are home. We are resting. More info later.

Can't Sleep

I can't sleep tonight, at least not yet. My mind is racing, my body is oh so tired. You know this combination. So please forgive me if this doesn't make total sense...never-the-less here is the latest-

At 11:00 Oliver had the nurses come in to give him oxygen. (When his pulse-ox goes below 85, alarms start going off and he needs oxygen.) When the nurse tried to put the oxygen in his nose, he freaked out. I am sure it doesn't feel good; it was definitely a rude awakening. In the midst of that struggle his oxygen level increased enough that we were able to leave it off for now. I truly have no idea how we can keep it on him? He almost ripped out his IV tonight even with a huge pedi-wrap on his arm. All that to say this- the doctor said earlier today that if Oliver "doesn't need oxygen in the night, you can probably go home tomorrow." I am hoping this 11 pm incident won't keep us here another night? We still have a long night ahead of us and who knows what will happen...

When they put in the IV they drew blood as well. Unfortunately, they had to draw blood twice because the first draw came up with some really low potassium and really, really low sodium numbers. I am hoping the new lab work will come back normal! Sadly, during blood draw #2 Oliver had a seizure. This one wasn't so teensy-weensy. He is so tired, so out of rhythm that this is to be expected. I just hated watching him have one right after he was stuck with the needle, agian- it just hurts my mommy heart to see that.

So, yes, this current situation does stink! However, when I see the kid in the room next door, hair totally gone from his head, clearly very sick, how could I feel sorry for myself/us? Being in hospitals, rather frequently, gives me true perspective. My mind also thinks of a baby, from Wilmington, who is currently at NYU having brain surgery. I've had the pleasure of exchanging a few emails with her very brave mother. Baby Netta has uncontrolled Infantile Spasms and she has completed surgery #1 of 3, successfully. Please keep Netta and her parents in your prayers. The team at NYU does a great deal of TSC related neurosurgery. I hope Oliver never, ever has to have neurosurgery but, if he did we would certainly consider the program at NYU.

Their blog:

http://annettasmithsaggese.webs.com/apps/blog/entries/show/6317887-marathon

238

Yep- so we are in the hospital. Room 238. Oliver is already improved. Looks like we'll have to stay the night :( Keep praying for our little guy (and us too!) We love you!

RAD

RAD (Reactive Airway Disease) is one of Oliver's many diagnosis. It is basically asthma. Yesterday, I took him to the pediatrician's office because I thought he might have an ear infection. I didn't think he was wheezing too badly with this current cold. I was wrong. He had a 91 pulse-ox. They won't let you leave the office unless you have a 95 pulse-ox (or is it a 94?) If, after you do a breathing treatment in the office, your child doesn't hit 95, then you are admitted to the hospital overnight. Thank you Lord, after the treatment yesterday, and a nasal suction, Oliver was up to 97! So, we escaped a night in the hospital. He is on another round of steroids to help with this round of wheezing. Hopefully those will kick in and he'll be 100% very soon!

(Totally random side note: Liz (one of my BFFs) was also at the ped office with her daughters. Charlotte, Oliver's girlfriend, was also wheezing. Lily Kate (Char's big sis) came and kept us company for a while. Oliver was thrilled when Lily Kate walked in the door. She kept him entertained for a long while. Liz and I had hoped to have a playdate- guess we sort of did- in a really weird way. Gotta love that providential timing and the comfort of a dear friend.)

This morning we are going back to the ped. office to make sure Oliver is A-OK before the weekend. Since a similar (but more extreme) RAD flare up happened in Boston, they are a bit concerned about our little guy. Apparently, it is worrisome when you have a need for steroids, for wheezing, this often. Dr. Player has already called this morning to check on Oliver and make sure I am bringing him in today. She is a great doctor and really connects in a mom-to-mom way that I really appreciate! We just love all three of our pediatricians! We feel really blessed to have their support and prayers through all this :)

If you read this in time pray that Oliver won't have to be hospitalized. That would be an epic pain in the butt with the diet, meds, etc.

We've seen a few teeny-tiny seizures the past day or so. This is to be expected with the cold and general lack of sleep from coughing and wheezing. Hopefully, when Oliver is well again those will disappear.

The diet has gotten a bit easier. I found a software to help manage the meal planning and calorie count. I think it is saving me 30 minutes or so a day! I am learning the foods that Oliver will eat- cheese, cheese and more cheese. This morning he rejected 2 breakfast options, which is very frustrating. When did he stop liking the cheesecake? He LOVED it Wednesday...these toddlers are fickle folks :)

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Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow"

(Mary Anne Radmacher)

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God is our refuge and our strength;

an ever present help in trouble.

Therefore, we will not fear,

though the earth give way and the mountains fall into the heart of the sea,

The Lord Almighty is with us;

the God of Jacob is our fortress.

(Psalm 46:1-2)