Tuesday, May 26, 2009

New workout program

In an effort to bulk Will up a little, we've got him working out in the Creepster Crawler with a little extra weight...


Just kidding... cute photo op though!

Wednesday, May 20, 2009

Another scar

The last time I posted about Will's eating, it was to tell you that we had been to the doctor who told us that Will's lack of weight gain was becoming a serious concern. He challenged us to assist Will in gaining 4-5 lbs in 4 months, or Will would need to get a surgical gastric tube (herein referred to as a g-tube).

We left that appointment with the feeling of a strong kick in the pants. I proceeded to buy butter crackers to smash up and put in Will's vegetables, and Lorne Doone cookies to smash up and put in his fruit. We made it a goal to use up one full tub of Benecalorie per day, and tried to get Will to take 25 ounces of the special high calorie Boost liquid. Anything with calories and fat... as much as we could put into his system.

He responded with vomit. Lots and lots of vomit. That was some really expensive, calorie-rich vomit on the floor.

We found out around the same time that Will had a sinus infection, which was causing a lot of his nasal congestion issues. They prescribed him 21 days of Augmentin, which proceeded to cause more havoc on his little tummy. When that was done, everyone in our house got colds. This meant that Will had a lot of extra snot in his body, which meant a lot of extra gagging.

Honestly, we started to wonder if he was actually trying to make himself sick. It wasn't a question of "if" vomit was an everyday occurrence... it was a question of how many times did he vomit. It was frustrating and sad, and lead to some very short tempers around here. To make matters worse, we were only able to feed Will small amounts of formula during this time, which meant he was waking up every 2 hours, needing to be fed. Lots of vomit, no sleep... bad.

At a check up last week, we learned that Will - not surprisingly - had lost weight in the past month. This was another type of kick in the pants for us. Maybe fighting Will getting the g-tube wasn't the best thing for him. He clearly wasn't going to gain 4-5 lbs in 3 months, considering he has put on less than 2 lbs since January.

We started asking doctors, friends, acquaintances who have children with cerebral palsy, and our feeding therapist for their advice. The resounding advice was to proceed with the g-tube. There was no point in waiting the 4 months that we were "given" to help Will gain weight. The other resounding point that all of our sources of advice made was that most parents, when they finally get to the decision to go forward with their child's g-tube, ask themselves why did they wait so long to do it?

We basically determined that the last thing standing in our way was our own pride and stubbornness. This is kind of hard to say... but we knew that a lot of children with CP had g-tubes and we were so proud to be able to say that our's didn't have one... that he didn't need one. That we were beating the odds, doing more than expected. Part of coming to peace with this decision has been admitting that I feel like a failure for having Will be so underweight. I know that isn't logical. Its just how I feel. I know how much effort we have put into feeding him... how much thought, and imagination, and time and patience. I know that we have done everything we can. I guess I am just one of those moms who feels like I should always be doing more.

On a side note, when we sat down and looked at a calendar, the 4 month window for Will gaining weight ended squarely on the eve of Will's transition from home day care to a day care center. We really want to eliminate as many transitions as we can for the boys, so starting day care, then pulling him out for surgery and recovery, getting used to a g-tube, and then starting day care again seemed like a lot of extra stress for Will.

So we had our pre-op appointment this morning for Will's surgery. We met with the surgeon and nurse practitioner who will be doing Will's surgery and follow up care. They walked us through the procedure - basically they will stitch Will's stomach to the inside of his abdominal cavity and create a surgical opening between the stomach and the outside of his belly. They likened the g-tube to a body piercing! There will be a silicone "button" on the outside of his belly, where we will attach a feeding tube at night. During the day, he will continue to feed by mouth. Night time feeding by tube will just be to make up his calorie deficit for the day.

The surgery is scheduled for Tuesday June 9, and we will have 3 days in the hospital afterwards to ensure that Will is tolerating the g-tube, and so we learn how to use the pump, place the g-tube back if it falls out, etc. It is really a strange feeling for us to know in advance when Will's surgery is, and to know what to expect as far as time in the hospital afterwards. All of our surgeries thus far have been in emergency situations, and typically surgery is in the middle of the night.

The g-tube could be a a short term solution for Will's feeding problems, depending on how he does with his oral feeding over the next year or so. If he starts eating like a fiend, he could be a little fatty in no time. In the very near term, though, we should see a change in Will. He will probably sleep better through the night because he will be getting all of the calories he needs. He will probably have more energy to thrive and develop and play. His over all mood will probably increase because he won't be as hungry or tired as he has been.

All in all, this is a good decision for Will and a good decision for our family. It has been a long path. Not that we're giving up on one day having Will eat everything by mouth again... just that this is a big decision, 2 years in the making. We've fought it for so long, but now, having spelled out how we got here... I finally feel calm.

Friday, May 15, 2009

And on the 22nd day...


Yes, you read that right. After 22 days on the market, our house is now under contract! Almost unheard of these days, right? Well how about the fact that we actually had two offers on the house on the same 22nd day. Unbelievable.

Nate and I went to Las Vegas to celebrate my 30th birthday (gulp). The Kentucky Derby was about to start, we had money on the race, and were in the sports booking area of Caesar's Palace, surrounded by thousands of our closest friends. The horses were being walked to the gate, post time was seconds away... the gates opened, the horses were off... then Nate's phone rang.

It was the realtor - you have an offer! She sent it to our email addresses. We missed the race with our excitement over the offer, in addition to not really being able to hear the realtor over the roar of the crowd.

We paid to check our email, we paid to print out the offer. We reviewed the offer, and had some questions for the realtor. Called her back with our confusion, at which time she told us not to worry about it, because she had another offer coming in! We paid to check our email, we paid to print out the second offer. We spent a lot of time finding the casinos' business offices and paying to print things.

After a little bit of back and forth, we accepted one of the offers! We signed the documents, and paid to fax them back. We close at the end of May, barring something happening (cross your fingers!). I am really not trying to jinx us, but I so wanted to share...

Sunday, May 10, 2009

Happy Mama's Day

Who needs flowers when your beautiful boy has almost learned how to say "Mama"?!?!?!

video

This is a remarkable step for Will, who prior to this point has been able to simply cry or frown when he's upset or click his tongue when he likes something. His speech therapist is really excited about his ability to make the "ma" sound - apparently now that he knows how to make a specific sound and knows that it makes the people around him really excited, he's more likely to experiment with other sounds.

It is not uncommon for children with cerebral palsy to be unable to speak, as it requires serious muscle control to be able to make verbal speech. We have heard a couple of amazing stories recently, though, about other children with cerebral palsy who didn't speak until the age of 4, when they remarkably opened their mouths and had a vocabulary of about 20 words.

So happy Mother's Day to everyone out there! Hope you had a great one! I was the lucky recipient of an extra 3 hours of sleep this morning, followed by a pancake breakfast and two beautiful watercolors from Luke and Will. I received my "real" present yesterday... a brand new toilet seat for the master bath... complete with little kid seat so that we can start working with Luke on potty training!

If you receive the email version of this blog post, please check out the actual blog at www.ncslaviks.blogspot.com for Will's short video!