Bubba's Back

We would like to thank everyone for their kindness and concern. We've been overwhelmed by the words of comfort, prayers, and offers to help! We are surrounded by such amazing people, family, and friends and we truly appreciate everything!

Bubba is fabulous! He hasn't had any seizures since leaving the hospital a week ago. He has taken to his medication and we see no side effects. He actually really likes the taste of it and gets excited every time he sees the syringe! He is his normal, happy self, crawling everywhere and eating everything. We are so blessed to have him in our home!
(Drake sometimes might not agree with that.)

Wednesday he'll have an MRI and I'll let you know if anything shows up.

Thanks again!

Today we were updated with Bubb's condition. The episodes have in-fact been seizures in the lower left part of his brain, located in the occipital lobe. They are unsure as to how or why they started happening, but could be due to the development of that area.

The seizures haven't caused any damage to the brain or pain to him. Where some seizures cause a body to shake or convulse, his seizures were causing his chest and lungs to constrict and his oxygen levels to drop. They were lasting, on average, about 20 seconds and happening every 1 to 2 hours. Because seizures take such a toll on the brain, exhaustion is normal after having one.

From the monitors, the Dr's told us his activity looked completely normal for his age and that his overall development looked just fine. It seems the seizures weren't causing any abnormal behaviors.

When seizures occur in babies under a year old, there is a chance it could inhibit his mental progress or physical development and, in sever cases, retardation.

He will be medicated for the next two years on Trileptol, which is used to prevent and control seizures. The down-side to this is how groggy and lethargic its making him. We are told as his body gets used to it, after a couple weeks, he should return to his normal self. If he is still tired it means he is still seizing, and we'll have to up his dose or change medications. We will also go home with Diastat (also called Valium) to give in case of an emergency that is used to calm the body.

We will be able to go home tonight, but will return Monday for an MRI. I will update again on those results. If there are any prolonged changes or missed milestones in his development, we will receive at home care for physical therapy and anything else that may seem wrong.

Our smiley little Bubs hasn't been happy like usual, and its very hard to to see him in this condition, but we're grateful for the information we've been given. We hope, with continued care and lots of prayers, everything will return to normal and after two years, he won't need medication.

Last night, before given Trileptal

Today, lethargic and mellow

Somewhat interested in the toys

Tired

These are the brain monitors, being removed

No longer my wizard

Low key

My energetic Bubba is gone for a while, but I hope he comes back soon

Bubba Update

Hello family and friends. As many of you know, Bubba (aka Pierce) has given us quite a scare the last few days.

Two weeks ago we noticed he was very lethargic. He would only stay awake long enough to eat and play, usually about 20 - 30 minutes, before going back to sleep for 10 min to 4 hours. I called his Dr. and was told that this was all normal behavior and probably just a growth spurt. We just watched him closely and after 3 days of sleeping, everything went back to normal.

On Wednesday afternoon I noticed him dosing off again. Now, if you know Bubbs, you know he doesn't like to be held and only sleeps in his crib. As soon as he started falling asleep on the floor, mid-crawl, we started to worry. We monitored him all through the night and everything seemed fine. Thursday morning I was playing with him when I saw his face go blank and pale, and his lips start to turn blue. I blew in his face and shook his arms until he inhaled and immediately went to sleep. The same thing happened three or four times before the Dr. returned my call and told us to head to the ER.

When we arrived at the Bryn Mawr ER, he continued to have episode after episode. The nurses couldn't believe how happy and energetic he'd be one minute, and completely out of it and unresponsive the next. They ran many tests and, although all the tests came back negative, said it could be possible seizures. We were then told Bubba needed to be transfered to the Childrens Hospital of Philadelphia (CHOP), where more tests could be run.

At about 10:00 last night and ambulance picked us up and took us to CHOP. He had another episode in the ambulance, so the Dr. gave him some anti seizure medication. It made him very groggy and out of it for a few hours.

About 3:00am they moved him up to a room where they hooked him up to an EEG to monitor his brain activity, and some heart monitors. There is also a camera recording him at all times. Because he was given the medication in the ambulance, we have to wait for it to wear off to see if he'll have any more 'seizures'. He will be here another night, get an MRI tomorrow, and hopefully his neurologist and cardiologist can give us a reason for these strange episodes.

(Some of you have asked if this was in relation to his broken leg and cast, and we've been told there is no correlation. He got his cast off yesterday morning.)

We had a camera with us because we were told to record any episodes he might have. Below are some pictures documenting his eventful (and terrifying) couple days.

Johnny holding oxygen on him after he stopped breathing for the 3rd time in the ER

He'd go from happy-hyper, to zonked on an hourly basis

EMT's getting prepped for the ambulance ride.

He was fine as long as he got to hold the EMT's iPhone

Here he is requesting to be called Ahmed, I still don't know why.

Groggy in the CHOP ER after getting anti seizure meds

One of the best in the nation, a good place for us to be

Happy and alert this morning.

I've been calling him Wizard Bubba

He is now peacefully asleep, after eating a cookie and drinking milk.

Thank you for the many phone calls and emails we've received. Your offers of help and show of concern are humbling and we are so grateful. Johnny and I are comforted in knowing Bubba is in good hands, and we know if we are ever in need of anything we are surrounded by wonderful people we can call on for help.

PS Drake is great and is being watched by the wonderful Linn family, where he plays with his best buddies Maddox, Kennedy, and McKinley. I'm not sure he'll ever want to come home again.

Please Touch Museum

Last week Johnny, my mother-in-law Mary, and I went to the Please Touch Museum (or the Touch Me Museum, as Mary mistakenly calls it) with our friends, the Fairchilds. It was so great! Below are too many pictures of Drake trying out everything. Bubba didn't get to play much, but stayed happy anyway. We loved it and can't wait to go back!

Watching a cute puppet show with Ben and Gabe (or "Grape" as Drake calls him)

If you...

If you spent the morning with Bubba, this is what you'd see.

You'd be greeted with excitement, after all, mornings are so exciting.

He would smile at you, not breaking his gaze so you could feel his genuine joy.

He wouldn't flinch in his happiness, even though his cast weighs about 4 pounds and is hard to drag.

He'd comment on the weather, and the comfort of the soft carpet.

He share something funny that happened in his crib the night before.

....and laugh because it was so funny and "you just had to be there".

Then he'd rest his cheeks for a moment, because smiling that much can cause wrinkles
(says Drake)

When he gets close enough, he'd thank you for breakfast.

And then he'd put his pacifier in, resting his happy face until lunch.