Miss Brenna

She's a dare devil, a curious monkey, a climber, a chatterbox, and a true sweetheart. She is really talking lately, a lot of babbling, but her vocab does include Hi, Daddy, Dada, Mama, shoe, go, dow (down - which she thinks means up), ball, bubble, baba (bottle), no (No), no (nose), uh oh, and a few more that I know I'm missing. She says hi to everything, the pictures on the wall, and everyone she sees. Every morning, she says the same things. When I walk in to get her and Carter, she says, "Hi!". On the way down the stairs she says, "guy". This is a new one and not quite sure what it means yet, maybe sky? When we get to the kitchen, Drew is usually eating breakfast, and she greets him with a smiley, "Hi, D!" And then we get to the living room and she says, "baba!". Time for the morning bottle. :)

Wearing Drew's jacket and Spiderman slipper socks!

In Hula gear at Abby and Nathan's party

Snow bunny

And today, showing Emily her NOSE! :)

Mr. Carter

Mr. Carter is so emotive. He always seems to be #2 when it comes to developmental milestones, and his frustration is evident by his body language and vocal tantrums. He eats better than anyone in our house under the age of thirty, always says "tant you", and loves to smile for the camera...

"Juicy"

"Emily, would you like to play with this truck?"

Check me out!

Emily and her new mobile

Last year, during one of the lengthy stays with neurology at CHOP, Emily seemed to watch a mobile that was available to be used during the stay. Aimee wanted us to get it and we searched high and low, but couldn't find one for less than $100. Yeah-$100 for a mobile... Don't get me started.

We eventually stopped looking as this mobile was discontinued and we already had a mobile she seemed to like. That one(from the days of Drew) began sputtering and playing out of tune notes even with new batteries, so I reinitiated a search last week, this time refusing to give up until I found one.

We found one over an hour away for only $20 and had it attached to her crib within ten hours of finding it on craigslist.org. SHE LOVES IT. The following photo shows her smiling and looking at the mobile, a real rarity for her.

Oh Emily! How far you've come...

9 days old, wide eyed in the NICU...

549 days old, wide-eyed in her living room crib...

Emily has been having some ups and downs with her ketogenic diet. We have been keeping quiet about her progress as we don't want to jinx anything, but she has been more alert, has had significantly less seizures, and seems pretty happy most of the time. She has, however; battled a "GI Bug", and recently has had incredible reflux that is causing daily vomiting plus she's having a tough time with an antibiotic we're using to treat a UTI.

I have been making her formula daily, but Aimee handles the meds. What a real job that is! You practically need to put on a white coat to keep track of all the mixing and filling and administering. Honestly, it took me the better part of an hour the first time I made meds for her. Because her diet is highly controlled, even the itty bit of sugar carbs in a liquid medicine could take her body out of ketosis. So it is cut, crush, mix and fill for most of her medicines.

Say a prayer for Aimee every day at 8am EST. At that time, she is getting Drew on the bus, giving Carter and Brenna breakfast, and playing pharmacist at our kitchen counter. And I thought my first period math class was exhausting!

Here is short video of Emily enjoying her mobile.

Allan and Estle

My Pop-Pop, Allan Riddle, showed me how to love out loud and to love God, both through example and through my Mom. He was a fantastic storyteller, would be a friend to anyone who wanted one, and enjoyed every moment of his life. He endured challenges, but in the years I knew him would never allow anything to take his focus off his family and his love for God. He said the blessing at our wedding, and we have certainly been blessed.

My Grandpa, Estle Gollihur, showed me how to be a provider, by example and through my Dad. He worked with his hands his whole life and taught himself many incredible skills by watching and asking questions. With Grandpa, we knew there was only “I can” or “I won’t”, but he’d never say, “I can’t”. He designed and helped me create a hope chest for Aimee, which we built “In faith, hope, and love” — the very skills he exemplified in his dedication to Grandma (60+ years, side by side).

How to love is a skill learned by those who are loved. As a husband and father, all that I have learned about how to love and how to live can be traced back to these two incredible men.

It is with a heavy heart that we will say our final goodbye at their memorial services this weekend. I hope they realize the legacy they’ve left is immeasurable.

Allan Riddle
February 7, 1924 – January 29, 2009

Estle Gollihur
February 18, 1923 – February 3, 2009

Some January Pictures

Carter in the "ball pit", our pack and play filled with balls

Brenna in Drew's hat and grandmom's shoes, or "shoe-wahs!" as she calls them

"Who me? I wasn't going to touch any buttons!"

Drew had fun with the silly string from Aunt Nicole and Uncle Joe.

His class had Career Day while I was at the hospital with Em. Daddy and Grandmom came up with this get up - Drew G. : Happy Homes Real Estate Agent! :)

"Hiya!"

Late night cuddle time for Daddy and Emily

We are HOME! Again.

There was no more vomiting after last night's incident! They really moved on our discharge and we were out the door before 10am!

I have spent all afternoon trying to get one of her prescriptions, but at least I'm doing it from home! :)

Another Day

Emily was doing pretty well with her feedings today. She still was doing a lot of choky, gagging coughs, but no vomiting. We adjusted the feeds to a lower dose at a lower rate. We discussed going home after her 6-8pm feeding tonight.

She had her longest feeding from 1:30 until 5:00 and then I gave her a bath. While I was getting her dressed, she started coughing and vomited again. Since it was so late and they still wanted to see another feeding and do more blood work before going home, I figured we had better stay one more night. The last thing I want to do is rush to get home and then have to come back again.

We hope to leave early tomorrow.

Another Day at CHOP

Just as we were about to be discharged yesterday afternoon, Emily started vomiting again. This time, the throwing up was proceded by a yucky cough. And I mean, the nurse was walking in with the discharge papers as she let it rip. :( That was around 4pm. She threw up a few more times before 7pm. Some of it had blood in it. So we had to stay the night.

They put her on just IV fluids and let her stomach rest until 10pm. Then they started her feeds again at a lower rate and since she was doing better (still coughing but no vomiting) they increased her rate every few hours until she reached her full rate. That was around 3:15 am, and she vomited again and then again, a LOT. :( Off the formula again, back on the IV only.

This morning at 8am, they gave her her medicines, started her back on some formula at a lower rate. No vomiting yet. But her 8am blood sugar was 30 (32 and 31 on rechecks), so now we need to worry about that. It needs to be over 45, and they would like it closer to 70!

My poor baby. I really would like to wave a magic wand, make her better and take her home.

Oh fuuuuudge!

We are back at CHOP.

I'll spare you ALL the gory details but Emily started having diarrhea and then lots of vomitng last night and this morning.

We are staying overnight. They want to keep an eye on her electrolytes because of their concerns regarding her vitamin D, calcium, blood sugar, etc. It could just be a stomach bug, but better to be safe than sorry.

She kept down her medicine and some water this morning. Her blood sugar was just low, so she got some apple juice and has kept it down so far. We are waiting for the IV team so she can get some fluids and they can get some blood too.

GREAT NEWS!

Horizon Blue Cross Blue Shield of New Jersey and CHOP Reach AgreementHorizon Blue Cross Blue Shield of New Jersey (Horizon BCBSNJ) and The Children’s Hospital of Philadelphia (CHOP) announced on January 16, 2009, they reached an agreement that will keep the facility in-network for Horizon BCBSNJ members. The agreement also ensures that CHOP’s physician groups and its facilities in New Jersey will remain in Horizon BCBSNJ’s network.“With this agreement, our members will continue to have in-network access to The Children’s Hospital of Philadelphia and their physician groups in New Jersey,” said Christy Bell, Senior Vice President Healthcare Management.

This is a major victory in the Gollihur household as we anticipated having to either change some specialists or travel further to see the same specialist if this agreement wasn't reached. Obviously, Emily's care depends a lot on this network and we are grateful we can continue seeing all the special people at CHOP.