Long Overdue Update!

Oh, I have so much to update on, it has been way too long! (Warning, this is a superlong update!!) Chris and I are probably going to buy a new computer Saturday, Yay! Hopefully it all works out, then I can update daily like I need to. Two weeks ago Tucker had his muscle biopsy and lumbar puncture. For the past few years (but not since Tuck's birth), I have major anxiety the night before big appointments and/or any procedure. Big appointments can come with good or bad news, and they usually mean big changes for us. You would think minor procedures would be a breeze for us, but my anxiety actually gets worse each time! The other day I came across this mom's blog, while I have never met her, I think this post sums up my feelings very well: "It is surreal to be dealing with all of this again.I can certainly tell you it is far tougher this time around.When Presley was struggling the first 7 months of her life in the hospital, she was never truly ours.We had always shared her with doctors and nurses and surgeons.She didn't have a toy box full of her own toys at home,or a bedroom she shared with her sister,I didn't know what silly face to make to get a huge belly laugh out of her,I hadn't seen her and Mikah sitting together in the 'big' chair, while Mikah pretends to read to her,she hadn't crawl around the house with naughty intentions,pulled on Gus' ear,or frustrated her big brother by knocking over his carefully constructed blocks.I didn't know the annoying little stinker that would crawl into the kitchen every morning, yelling and screaming for her breakfast,We hadn't played 'Pat a cake' or 'Where's your nose?' or 'Peek a boo!' with that little love we shared with an entire PICU.But we have done all of those things this past year and a half, and we have had to share her with no one...she has been all ours,and our house is not 'home' until she comes back." http://gilesfamilyof5.blogspot.com/ I totally understand this....when Tucker was born, he was "our" baby, we told ourselves that constantly...but he never really felt like ours until the day we brought him home 8 1/2 months later. Thankfully, we have not had another inpatient stay that lasted longer than 2 days since Tucker left the NICU...and that is a pretty HUGE deal when you consider all of his past medical issues. But as Tucker gets older, we know his little personality better, and the docs don't just take back our baby to put under and cut open, they take our bossy little fighter! So...because I knew the anxiety would be with me Thursday night, we had tons of fun Thursday before Tucker's appointment with anesthesia. The drive to Houston takes about 5 hours (at least when Chris drives!) so we like to stop halfway in Lake Charles. That is where my aunt and uncle, along with two cousins, live, so we usually meet up with them. This time we got to Lake Charles in the middle of the day, so they were at work and school. We stopped off at the Lake Charles "beach" so that Tucker could stretch his legs. Wow, he loved it!! We were the only people there, and he had the kiddie playground all to himself. Of course, by beach standards, it is not much of a beach! But this was the first time Tucker had ever stepped onto a beach, and he LOVED it! He walked in the waves and threw sticks in the water. We had a beach trip planned to Gulf Shores in July, but with the whole oil spill, we are pretty positive we are not going. So we will just have to come back to Lake Charles to get our beach fix! I wrote Tucker's name in the sand...the little grooves around his name were his work.

And I got a few pics of him throwing the sticks.

After awhile we got back in the car and headed to Houston. We got to the hospital about 2 hours early. There is a huge zoo right across the street, but we decided 2 hours was not long enough for a zoo trip. So we opted for a train ride. This is all in Hermann Park, which is a huge park with tons of stuff to do. Chris thought Tucker would try to standup the whole time, since the train goes kind of slow. Wow, was he wrong!! (But I am not rubbing it in...right!) Tucker said, "ayne" when he saw the train, and could barely contain himself! We got on the train and rode all around the park, we even went through the tunnel. It was the cutest thing to watch. So we will definitely ride it again next time we go to Houston.

The appointment with anesthesiology was pretty uneventful, except that we had to pass the swings at the park to get to the office!! Tucker screamed for the swings, and we had to promise that we would go back. We went over Tucker's entire medical history, and the doctor was a little shocked that his lungs improved so quickly. We didn't think it was so quick, lol!

The high point was when the doctor asked us if we speak Cajun at home....you could have heard a pin drop! Chris looked at the doc like he was insane! The doctor was obviously from a foreign country, and he was a young resident...so all he probably knew of Louisiana was pictures of crazy Cajuns with their alligators! Which actually is a pretty good description of my father....just not us!!

So then we went to check in at the hotel. We usually stay with Missy, and of course I would have LOVED for Chris to meet that great family and their precious kids! Missy's sister got married that weekend, so they were super busy. She still took time to text me and make sure we were doing okay, though. Her son and daughter were the flower girl and ringbearer, and she said they had a blast at the wedding...although the weekend ended with an ER trip for Samuel and he is still inpatient:( Please send prayers to them, they have been so great to our family!

So anyways, Tucker was very tired from his long day! And when we brought all of the bags into the hotel room, he burst into tears! I guess he thought we were going home! We fought the whining for awhile, and eventually got out to pick up a pizza. We got a little lost, but ended up back at the hotel with our big pizza (hey, we were on vacation, right??). We fed Tucker at 8pm and he fell fast asleep. So Chris and I settled in to watch the season finale of Grey's Anatomy. Oh My Gosh!!! if there was ever anything to take my mind off of Tucker, this was it! Chris is not a Grey's fan, but we both had our hearts racing watching the whole thing! So by the end, we were ready for bed....although Chris kept joking, saying he hoped the hospital did not go into lockdown the next day...not funny!

We got to the hospital the next day...Tucker did amazingly well in the pre-op room. Really amazing, way too professional at this! We had some paperwork problems...for some reason they had the biopsy scheduled but not the lumbar puncture...the LP is super important, and he needed to be put under for it. I told them I was NOT coming back to Houston for an LP, and that Dr K would not want him under again, so figure it out....I told Chris, "Tucker missed his class water day for this!! He is getting this stuff done!" So after about an hour they had all the orders in place. We had already been briefed on the biopsy, but when they described the LP I got kind of queasy...the LP actually took over 1 1/2 hours because they had to get enough fluid...yuck.

Chris and I entertained ourselves with our IPhones (Thank goodness for those!) and by eating both breakfast and lunch. BTW, that hospital has some delicious food! I definitely recommend getting sick while you are in Houston:)

When the doctors came out, they said everything went great, but they wanted him to lay down still for about 5 hours. 5 hours??!! we thought. I texted to many people, "please pray that Tucker sleeps!!" because that was the only way we would get him to lay down. I found out later that many people forwarded on those texts.

So let me just stop here....over the last 4 years, Tucker has been through some "crap" (that's my nice word for it), but we have found many blessings in the weirdest places....meeting certain people in the right place at the right time....having certain things happen exactly the way we needed....that day all I needed was for him to sleep for 5 hours...his procedure ended at 130. At exactly 630, Tucker woke up! And as soon as he woke up, he was saying "out! out!" He was not supposed to walk, he had about a 4 inch cut in his thigh. He was very unsteady, but we could not keep him down! We took him for a walk to the indoor playground on the 10th floor (seriously! an indoor playground, he loved it!), and then a trip to the cafeteria for yet another meal. Chris and I are serious stress eaters, I think we gained 5 pounds each in those 2 days! I always say, "I lost the baby weight in one week....it's the NICU weight I have left to lose!" Ugh, and it's the truth!

So we knew Tucker was completely back to himself when we saw the chips! He jumped out of the stroller and Chris had to catch him! Ugh, Mrs. Mary, if you are reading this, pretend that you don't see the PullUp! We let him hold one as long as we were in the hospital...as soon as we left, we took them away! He did very well with it.

So we left the next morning and drove straight home. We should get the results of all of the tests by the end of July....did I mention the stress eating?? I hope I can fit in the seatbelt for the ride to Houston by the end of July!! Because the next few weeks will be pretty stressful for me, waiting on the results.

I wanted to post a pic that is totally unrelated to Tucker. Last weekend I spent two days at the largest Country Music concert in the South, the Bayou Country Superfest! It was in Tiger Stadium (yay!) and featured Taylor Swift, Keith Urban, Kelly Pickler, Kenny Chesney, Brooks and Dunn, Jason Aldean, and several more! My sister Meagan, her husband Chris (yes, another Chris), and I purchased our tickets last fall, and we have been patiently waiting!

It was great, I love music! And so many of the songs I heard brought me back to my childhood (in the case of Brooks and Dunn) and my teenage and college days...it was a lot of fun. The weather was supposed to be pretty bad, so Meagan told me to pack a poncho. It poured down for about 15 minutes....Chris warned me that he was NOT leaving if it rained, he paid to see Keith Urban, and he planned to stay! I told him I am not a sissy! (which is not really the truth...) and I put on my poncho as well. Well, Meagan is a genius, almost no one else had ponchos! People kept asking us where we got them, as they ran for cover.

So here is a pic of Meagan and Chris....just a little reminder that there is life outside of Tucker...at least every once in a while!!

Thanks for keeping up with this blog, the whole 4 people who read it! It really helps me to get Tucker's story out, and it helps me to remember all of the events in our lives.