I packed my first 7 boxes today....

because as if we didn't have enough on our plate already...we're moving! But don't worry, it's just 10 minutes down the road. (Brittny helped me pack these- I can't take all the credit). We weren't actively looking to move, but we became aware of this opportunity because we are friends with the family that has lived here 18 years -give or take a few years, I don't know exactly. They are subdividing their property, so they will be building house next door and we'll be neighbors!

Front of house

We like the house for many reasons. Although it is older, it's a little bigger, and we will be adding to it before we move in. We love that most of the house is a ranch (we feel as though we're not using all that space we have upstairs), and we really love the yard. It has shade and various places that are good for congregating. We have no trees in our backyard. It's a lot more private as well. They have horses, chickens, and various other animals. It's still in Wake County, and it's even a little bit closer to Chick-fil-A. Also, the land is a lot more country-feeling rather than suburban neighborhood feeling. We'll miss our neighbors here, because we've got good ones. However, it is just time to move on. We closed on the house last week, and it looks as if it might be 6-8 months before we will actually move in. Then we'll put our house on the market to sell. Exciting times!

Backyard

The big tree in the backyard and all the neighbors gathered around

Broviac Free!

"Before"

Brett in pre-care, watching Mickey Mouse Clubhouse. (The blue cap is the end of the catheter through which we administer medications and fluids as needed directly into his bloodstream. The tube curls around under the dressing then disappears into his chest where it is sort of snaked through to a major artery.)

The Broviac central catheter removal procedure went very smoothly, as we expected and hoped. They told us afterward that Brett was able to be sedated just by breathing the anesthesia medications through a mask - he did not require any kind of apparatus to be placed down his throat. This is always a good thing, because foreign objects down his throat could easily lead to an infection. This was his 3rd Broviac, thus his 3rd removal procedure.

He was first on the docket for the day, which meant that we had to get up at 4:30am to get there at the time they wanted us there. (And so did our sitter!) That stunk, but the positive part about that was that we didn't have to wait and we were home by 10:30! Many time we are there most of the day and get stuck in rush hour traffic on the way home.

"After"

Broviac-free! Let's get outta here!

In the PACU (post anesthesia care unit), he was smiling, clapping, and blowing "raspberries" at the nurse. I don't think they're very used to babies behaving that way in recovery! I guess for him it's "old hat." For Brett, this was a very minor procedure. After a short albuterol nebulizer treatment, we were sent to recovery and discharge. He was so cute and was clapping when we walked out of the hospital too. We have to wait a few weeks before we can submerge his chest in water, but we can begin to get him accustomed to the bathtub/pool up to waist high now. What a relief! Thank you for the prayers and concern!

It's 7:35 AM, and Brett just went back to begin his surgical procedure. We woke up at 4:45 in order to make it to checkin at UNC at 6:30 The surgeon that has done all Brett's major surgeries, including the one that saved his life on the day he was born) is removing the broviac central catheter today. This is an elective procedure that we are doing to give his body a break from the "hardware" being in his body, as well as the fact that we will be able to put him in the bathtub and the pool. Also, there is always a risk of the line becoming infected. It has been infected twice before. So now that it's summertime, we feel it's pretty safe to go ahead and get it taken out. Its possible he end up back next month needing access again, but we decided that if that happens, then so be it. We will cross that bridge when we get there. So now we wait- probably an hour or two and pray everything goes well in the OR. We are going to be napping in the hospital hallway!

Brett's Clinic Visit & Swallow Study

Gantt and Brett turned 14 months old today!

Brett's check-up at UNC last Wednesday went very well. We saw his surgeon, did a swallow study (x-rays of how the food goes down his throat), and discussed various details about his treatment with his pulmonologist. The main points are as follows:

1. that he is now finished with his IV antibiotics we've been doing for 3 weeks. We're soooooooo glad

2. his swallow study was completed and he has no structural problems in his mouth to inhibit the proper eating process. He just needs feeding/speech therapy and practice to learn to use his mouth and tongue effectively.

3. basically, is surgeon is not comfortable putting in a port until he a bit older and bigger. It is a gray area, there is no real black or white. If it were a situation involving a specific need for a port, he probably would, but it is only a desire. After discussing it for a little while we decided together that we would remove the Broviac central catheter and not replace it with anything right now. This is an outpatient surgical procedure (usually) that is scheduled for tomorrow, June 3. This will be his 3rd Broviac removal and he has not had a problem before. The last time was in December of 2009 and he was able to come home that day. He has been under anesthesia many times and tolerated it fine, but there is always a risk. Please pray that everything goes well as it is expected to and it will indeed be an outpatient procedure.

4. We have been tapering the steroids for a few weeks now. He has not been on any oxygen since the weekend of May 9. So hooray that they have been working for Brett. We ended up doing 6 weeks at the high dose, 3 weeks at the medium dose, then 4 weeks at the low dose. We still have 2 more weeks to go before we will discontinue the steroids. Since the steroids have complicated things, we still aren't sure the extent of his immune deficiency, so for now still no live virus shots. Gantt will probably be able to get his next month, but we will still hold off on Brett until we have more complete information about what is going on in his cells.

5. As far as the swallow study goes, he did not enjoy it! We mixed the barium with his applesauce and fed it to him. He aspirated on the first bite, but not at all after that. Even with the thin liquid he cried with his mouth full of it until he finally took a breath and swallowed, but didn't gag. Part of me wishes that he would've gagged a lot, because I feel like they didn't necessarily get a good picture of what sometimes happened. I am going to ask about this because I wonder if we really got all the information we needed or could've gotten that might help us to treat him better.

Well, you're all caught up now! I'll text updates to this blog and to Facebook as we go tomorrow. As always, thank you for being interested enough and caring enough to keep up with our family.

Mark's Birthday at School

Mark's 7th birthday was May 19, which fell on a Wednesday this year, meaning it was a school day. I think it's actually more fun to have your birthday at school when you're young. He had a special cookie cake - we looked at the designs online, and he chose the fish. Online they're all in that chocolate and white icing, so I copied the shape of the fish and he colored it. Then we went to the cookie store to turn in his "order"! The ladies there thought it was so cute - one of them talked about taking a picture because they had never had anyone get THAT detailed on how they wanted their cookie cake to look! I wish I had taken a picture of it.

When I look at photos like this, I just can't believe how he's growing up. He's such a joy to have in our family.

Twin Time

Lest you think the twins were left out because they didn't go on the trip with us, here are some photos to prove otherwise! They had plenty of fun and love with GG and Pop here to take care of them! (I think GG and Pop had a little fun, too...)

One of very few photos of Gantt without a bottle in his mouth - ha!

And Brett reaching out for Pop's nose, which "honks" when touched! And below is a one minute video of Pop being Pop.