Thursday, May 26, 2011

The cat's out of the bag!

Well, I'm not entirely sure how much the cat was ever actually IN the bag, but yes, it's official. We're moving to Laurel, Maryland in less than two weeks. Mark and I will be switching roles when we move--I'll be working at the University of Maryland and Mark will be staying home with Timmy. My new workplace has been very gracious about holding the position for me until we felt Timmy was stable enough to move. We're excited about the move, but we do expect it to be a pretty rough transition. Timmy's been helping us get ready for the move.

Chaos has officially descended on our household (not that the chaos ever actually left). I hadn't realized how many different specialists, agencies, supply companies, etc. are involved with Timmy's care until it came time to sort out transferring everything to another state. These days, in addition to making sure Timmy stays healthy (not an easy task!) Mark and I spend what little free time we have sorting and getting things ready for the move and researching specialists, hospitals, and services in Maryland. We're setting things up with a bunch of new services: ENT, pulmonology (both of these will also continue in Cincinnati, so we'll have two of each), pediatrician, genetics (though we're considering keeping that in Columbus), High Risk follow-up (which I was excited to find exists in DC!), urology (though this is not urgent), ophthalmology (also not urgent), occupational therapy, speech and/or feeding therapy, physical therapy, potentially GI, medical equipment supplier, Medicaid waiver, and we're hoping to get Timmy involved in some ASL classes and/or an ASL playgroup. I'm sure there are a few others that I'm not thinking of right now.

And in light of the long to-do list, what am I currently doing during Timmy's nap? Writing a blog post and making my way (rather quickly) through a bag of chocolate chips.

Timmy's journey

This is one of the videos we put together for Timmy's shower. Putting it together was a good reminder to us of just how far Timmy has come in the past nearly eight months. (Please excuse the poor editing! We didn't have time to polish it up!)

Thursday, May 19, 2011

Timmy's shower (more like a deluge)

Another very exciting thing happened on Saturday, and that was Timmy's baby shower!! Because Timmy came so early, and because his mommy is such a procrastinator (and thought scheduling a baby shower at 37 or 38 weeks would give her plenty of time to prepare), Timmy did not have a baby shower. But we are glad, because we think that doing it this way was lots more fun. Timmy got to attend his own shower and his shower turned into a celebration of Timmy and everything that he has been through.

Timmy's shower was organized by some pretty fantastic ladies at our church.

We started out by watching a couple of videos about Timmy. (I will try to post those on here sometime in the next few days.) After that it was time to open gifts. We were very overwhelmed by the generosity of Timmy's friends and family. We have been supported every step along the way of this journey by loved ones, and Timmy's shower was no exception.

Timmy's favorite part was, of course, the wrapping paper.

Timmy's mommy was assisted in the gift opening by two very capable assistants.

One of the other reasons that it was so wonderful to have Timmy's shower so late is that we were able to tell people more specifically what kinds of things he would benefit most from. We made a gift registry on Amazon, and Timmy got all sorts of neat stuff, including sign language videos (for Timmy), sign language books (for Timmy's mommy and daddy), cloth diaper covers, a stroller that was recommended by some other parents of trach kids (because it has a basket big enough to hold all the equipment), a bath chair to make Timmy's bath time safer, a diaper bag with enough room for extra medical supplies, books and supplies for making baby food (which will also be useful if Timmy is using his G-tube for a long time), CDs listen to (including one introducing Timmy to the orchestra!), new toys, gallons and gallons of vinegar and distilled water for cleaning Timmy's equipment, and all sorts of other things. Timmy is also well supplied now with clothes that are more stylish than anything his mommy and daddy own. Here is Timmy sporting one of his new outfits and playing with a new toy.

Wednesday, May 18, 2011

Graduation Day

Saturday was a big day. We were very lucky that Timmy woke up happy on Saturday morning after his rough day Friday. The first big thing that happened was that Dr. Mommy officially graduated with her PhD in Linguistics from Rice University. But because they will not let mooses rid airplanes, Mommy decided it was best not to fly to Houston for the graduation. Instead, Timmy's daddy and I arranged an extra special graduation ceremony for her at home! And even though Timmy did not officially graduate with anything, we decided that he has been through so much that he deserved to wear a silly hat too. So Timmy's daddy made graduation hats for Timmy and his mommy out of brown paper bags. Then Timmy's mommy wore her bathrobe and Timmy wore one of his mommy's shirts with the sleeves all rolled up. And Timmy's daddy sang Pomp and Circumstance and I squeaked along.

Timmy's mommy already had her graduation present. A long time ago she and Timmy's daddy had planned to use their frequent flier miles to go to Ireland to celebrate, but then the frequent flier miles people changed all the rules. So then they decided they would go to Hocking Hills instead, but Timmy changed their plans. So Timmy's mommy got the next best thing for graduation--a Wii!

Tuesday, May 17, 2011

Back to Cincinnati...

Timmy had a busy weekend and Mortimer has a lot on his plate right now, so I told him I'd write a quick post about our trip to Cincinnati, and then Mortimer will try to find time in the next few days to write about the rest of our weekend!

On Friday we went down to Cincinnati for a scheduled scope. We were originally supposed to go down in June, but June is shaping up to be a pretty crazy month, so they agreed to bump up his scope by a few weeks. The best part of the day came first--we stopped up at the NICU and saw a lot of our old friends. Timmy had a great time seeing so many of his old friends. And when we left, we got to take him with us!

After that we headed downstairs to the surgery check-in desk for Timmy's scope. We weren't quite sure how it all worked, since we'd always done this in-patient before. After sorting out some paperwork problems, we headed back to a little room to wait. Timmy got all dressed up in a little gown--we thought he looked like he was ready to play a role in a Nativity scene! They were running late, so he was able to get a little bit of a nap in. The other new thing was that instead of dropping us off at the waiting area, they let us go with Timmy all the way to the OR, so we got to peek in and see what the OR looked like.

We talked with T's docs afterwards. No groundbreaking news. Mostly everything is the same as it has been the last few times. The surgery site still looks good, and though the swelling in his airway has gone down a bit, his malacia hasn't really improved. He also had a large laryngeal cyst, which they took care of while he was under. Once again we were told that Timmy is looking much better on the outside than on the inside. The real-life implications of all of this are that it looks like we'll be dealing with the trach for quite some time--minimum of a few years, and most likely longer. It also means that Timmy is not a good candidate for a speaking valve so we need to be pushing even harder with the sign language! (We got a few sign language books and DVDs at Timmy's shower on Saturday, which will help with that!)

Speaking of sign language, Timmy signs "Mommy" all the time now. Sometimes it's hard to tell whether or not it's intentional, but we think he knows what it means! He also signed "milk" this morning, so we gave him a bottle right away. (Again, not sure if it was intentional, but we're trying to "reward" his signs with the appropriate action.) Watching a sign language video with his Aunt Sara yesterday, Timmy signed "dog" over and over again. (This one we're sure was just mimicry, but we're pretty excited that he's starting to talk!)

Back to Friday...Timmy had a pretty rough time post-anesthesia. It seems like as he gets older he has a harder time coming back from the anesthesia. (This is his 14th (I think) procedure under anesthesia in his short seven and a half month life.) He was a little out of control. The great part, though, was that a bottle of milk actually helped him to calm down!! He napped for awhile in the PACU, and when he woke up he was a bit better, so we decided to go ahead and head home. Saturday morning he was back to his perky self. Saturday we had all sort of fun, and I'm sure Mortimer will tell you all about it later.

Saturday, May 7, 2011

Happy Easter!

Yes, I do know that I am a little bit late with this post, but Easter was a very special day for our family, so I thought I would share a little bit about our day.

We started the day with an Easter bucket for Timmy. (Timmy's mommy and daddy could not find any baske
ts that were not already full of candy and other silly stuff.)

Just getting ready for church wore Timmy out!

One of the benefits of belonging to the pastor's family is getting to take advantage of the pastor's offi
ce. Because we were worried about exposing Timmy to too many icky germs, we hung out in Poppy Pastor's office before the service. It was easier to do crowd control back there! The paparazzi arrived. It was fun to see family. One of Timmy's great grandmas had never even met Timmy before!

It is hard to explain how special it was to bring Timmy to church after more than six months in the hospital. It made it even more special that it was Easter Sunday. Timmy did not quite know what to make of the service. When the first song started his eyes got all big and he could not stop looking at all the people around him. We took turns holding his Farrell bag over our heads--several people later told us they thought we were full of the Spirit--Hallelujah!

During the service we got to dedicate Timmy:

And I think we wore Timmy out with all the excitement!