Sunday, May 23, 2010


I wrote a long post explaining the events from this past weekend and then promptly lost it! Argh. Here goes again:

Sometimes when Abby has a fever she will experience something called "seizure clusters," it's when she has seizures one right after another with very little break in between.

This happened over the weekend after a fun filled Saturday with Aunt Connie and Uncle Matt. It came on suddenly and she quickly looked like she was headed for a status seizure. We gave her the Diastat and things settled down for the night. She slept well.

The next morning the seizures started back up again, so we called our neurologist who gave us instructions to give extra medication, alternate Motrin and Tylenol and take her to the hospital if it continued. We could not give more Diastat unless we were en-route to the hospital. (too much of this drug can suppress her drive to breathe).

Sunday was spent giving meds, watching her seize and praying we wouldn't have to go to the ER again. This continued through the night and Monday was spent resting and recovering from the weekend.

We are all exhausted; physically and emotionally.

The Lord has been teaching me several things over the course of this past year. One of them is to really live one day, sometimes one moment, at a time. The words "grace," "peace" and "surrender" have taken on new meaning as well. He has been speaking to me through His word, through other books I'm reading, through loving family and close friends that care.

We are taking to heart that our true hope won't be found here in this life. Our hope is found in the Lord. He is sovereign and promises to work this all out for good and for His glory. I'm reminded daily how shallow my vision is and how large my need for His strength has become.

So much in this life is out of our hands, but are safely in His.

On the lighter side, Abby is now on her 3rd g-tube button this month. They are supposed to last 3+ months and have in the past. We are juggling with the insurance people, her gastroenterologist and supply company to come up with a solution to this problem. The balloon inside her stomach holding the button in place keeps popping, causing the button to literally fall out. (could be caused by excess stomach acid, a product defect or possibly the medications she gets through it)

We may be compelled to revert back to a BARD button (instead of the Mic-key) in order to prevent a number of problems, the least of these being insurance coverage. She started out with a BARD in 2004 so we are very familiar... it doesn't have some of the features we like about the Mic-key. Not sure if BARD makes a GJ tube yet.

Visual of a Mic-key button:

(new button- deflated balloon)

(testing the balloon before placement)

We shall see.

For now we are enjoying a mostly normal Tuesday.

Friday, May 21, 2010

11 Months

Our little cruiser has become our little climber in the past few weeks. Good bye floor, Hello stairs! Levi is now racing upstairs like he's on a mission... but in 11 month old fashion. So we have to keep the toy room doors closed or the gate put up to keep him from escaping.

He only has 4 teeth but has really broadened his meal time options. Snacks can include bread, cheerios, bananas cut up, cooked peas, hard boiled eggs, tiny bits of chicken or apple and his favorite... graham crackers! It's so fun to feed him, and so effortless. He's practically a bottomless pit!

He is saying "Ma ma" more consistently now and also signing "eat" and "more" as before. Diaper changes have become more challenging and he really prefers to be naked!

This is such a fun and interactive stage, and Levi continues to amaze us with his many skills!! Today he enjoyed pushing a ball back and forth. His favorite thing is to follow Josiah to his bed room and play with what ever he is playing with: cooking utensils, magnet tiles or pirate ship stuff. For the most part J is happy to share, but now that L is more independent playtime can be more like destruction time.

(taken just after the first, but before the 2nd was pulled)

Abby's wiggly loose bottom teeth finally came out last weekend! I don't think she was too thrilled with the process but it has to feel better now that they are out.

When Abby was in the NICU we received a sweet gift from Patrick's Aunt Mary Lou. It was a soft pink bunny with her name embroidered on one of his ears. The bunny has on pajama's and sports a small pocket on it's hiney. When I first noticed the pocket I wasn't sure what it was for. Aunt Mary Lou told us it was for the tooth fairy! At the time it was hard to imagine the joy of loose teeth, we didn't know if we would ever get to that point.

To celebrate Abby's first lost teeth (except for the one knocked out 3 yrs ago during an intubation... that one didn't count) we put her pink bunny to work. In the morning Josiah was very excited to find two lollipops in place of the teeth. He brought the bunny (and candy) to us early the next morning, eager to share in Abby's reward.

Abby seems to be doing well this week. She has had 1 or 2 seizures so far which is great! Her incisions look sore and are still healing after 3 weeks. She has been such a trooper keeping up with therapies and her usual appointments. Next week is the last week of the school semester and we are all looking forward to a break.

During the summer she will benefit from 3 weeks of summer home-bound services including PT, OT and our teacher for the hearing impaired. This will be good for her since Abby has taken several steps backward due to illnesses and surgery.

Next month she will also get to go to camp! UCP is offering summer camps ("I Can Camp") for children with physical challenges and Autism. Abby will go from 9-12 am for 5 days. The kids will have fun playing with water, petting animals and other carnival themed activities, all the while working with therapists on their individual challenges. We hope she will have fun.

Saturday, May 15, 2010

Recovering Again

Abby is stable and at home. Her seizures have calmed and she is recovering from this whole ordeal... as are we.

The boys are getting used to having all of us home again, but we can tell the upheaval has taken a toll on them. Josiah is glad to have his sister back in his room again. Levi is becoming a little less clingy, and for the most part things are slowly getting back to 'normal'.

It's interesting to listen to J play with his toys. The new scenario now is that his pony and motorcycle rider are being rushed to the hospital b/c it's an "emergency." He instructs us all to be quiet because they are "very sick".

Here are some images from this week:

Tuesday, May 11, 2010

Crazy Seizures

Abby is back in the hospital after having over 12 seizures yesterday. Even after giving her emergency medication (Diastat) she continued to seize.

She was admitted through the ER last night after finding her blood work to be normal. This is a huge praise as infection (post shunt surgery) was a big concern.

She continued to have seizures through the night and this morning. Her medications have been increased and an extra IV dose was also given this morning. Another CT of her head was ordered. We don't know the results from this yet... assuming no news is good news.

My mom is here! We are enjoying her company and help very much. Abby is snuggling with her while I spend some time at home with my boys.

Heading back to the hospital in a few... it's soo nice to be only 5 minutes away!

Friday, May 7, 2010

10 months

This post is about 20 days late, but I wanted to share some cute pictures of our littlest munchkin.

Levi continues to grow by leaps and bounds while acquiring all kinds of new skills. He is officially cruising the furniture now, although still a little wobbly. He is copying facial expressions and is particularly fond of what we call "the bull dog" face... scrunching up his nose and snorting like a dog. It's pretty funny!

He giggles more often now and even laughs when Josiah startles him or rough houses with him... most of the time. I find them playing together more and more as J learns to really share his "stuff".

We are still digging foreign "material" out of his mouth during most of his wakeful hours... carpet pieces, crumbs, small toys and even bugs! I know, it's gross. Lets just say he is very curious!

(chillin' with Dad during Abby's surgery)

(passing the time during A's surgery)

(How we traveled at Children's)

Two top teeth are barely peeking through now making it easier to eat his new snack... Cheerios! We are excited b/c these are so much cheaper than the baby puffs.

He is understanding more words like "night night" and "no". There are plenty of opportunities to practice the second. (fire place, computer cords and anything else not edible) During their recent visit Papa actually thought he saw L sign "no"!! I'm not surprised, he sees it often enough.

It is so much fun to see him growing and changing every day. He is wearing mostly 12 month sizes and will be going for his one year well-check at the end of this month.

(Loving on Abby after surgery)


She is still recovering and seems to need pain meds from time to time. Toned down versions of therapy have started back this week. I can tell she has lost some muscle strength in her trunk and for holding her head up.

Before the shunt emergency happened her GJ tube fell out while we were in K-ville. We put in a temporary G-button in it's place, hoping to give her a trial run without having to place the GJ again. We think she might be refluxing some, but it's hard to tell.

Well, today her new G-button fell out while we were at UCP! I couldn't believe it and was rather unprepared. After examining it I found a leak that wasn't visible from the outside of the balloon. Our insurance won't pay for another replacement this soon, but I worked with our supply company to get the manufacturer to reimburse them for the defective tube. whew!

Just a little tid-bit of the excitement that comes with caring for our little sweetie.

Saturday, May 1, 2010

Home Sweet Home

Recovery is going very well for Abby since coming home Thursday. The days have been full of rest and times of comfortable alertness. She has even played with some of her toys! This is a great sign.

Papa and Grandma came to our rescue and have showered J and L with some much needed attention and fun. They both slept till after 8:30 am this morning! Needless to say, we are all getting some extra rest.

Their presence here has given me special time to cuddle with Abby and keep her comfortable. My heart is full of thankfulness that she is doing so well. I'm reminded what a fighter she is! And what a special gift she is from the Lord.

This week we are all grateful for the little things... just being together as a family.