Drew's first birthday cake - should have made it out of potato chips!
If there was any doubt - he still has his silliness!
Daddy could make a living at this job!
Abby, Natalia and Sam
Jordan, Jason, James, and Colin (aka "the Latin Lovers")
My Favorite Clark!
Drew turned one last weekend! Saturday was his birthday and we had a backyard birthday party for him. He slept through the first half but seemed to enjoy the rest of it - it was pretty entertaining! Jordan proved his artistic ability when we put him to work face-painting and the dads all got together and added another level of silliness to the party when they stepped up to be painted too. The moms weren't too sure who they were going home with, but it was fun to see another side of our husbands... James was calling them Latin Lovers, but they looked more like a bunch of ragamuffin pirates to me!
Peyton blew out Drew's candle for him and we tried to convince Drew that ice cream cake is good, but he was more interested in potato chips. I think Maggie ate Drew's share since he opted out!
We were off to see the heart doctor at 8:15 Monday morning for Drew. It was an interesting morning - we have to eliminate certain things from the typical morning routine to get anywhere in reasonable time. With meds, feeding, tube feeding, dressing, and cleaning up (along with any of the three year old detours) we have discovered it takes us about an hour and a half on average to get anywhere! Gotta work on that! Anyone know where I can find an extra 2 hands?
Drew had to get a few things checked out that we discovered when he was in the PICU in May. He had a small hole in his heart and a leaky valve. The appointment went very well and I think we can hopefully close the door on this concern. The doctor wasn't even slightly concerned with the valve, and he said the hole is so small it's inconsequential right now and should grow closed soon. It is a very common defect called a Ventricular Septal Defect (VSD) and is so common that they actually had a pad of paper about VSD with facts and pictures on it in the office to hand out. That was a bit of a relief. I will leave Drew's little heart to God now.
Wednesday morning we were off to the hospital again for an MRI of Drew's brain and spine. He had to fast before the appointment so this was what our night looked like. We put him to bed around 10:00 p.m. and then gave him a tube feed at 11:30 p.m. which was the last time he could have anything other than breastmilk. At 3:30 a.m. I was up to feed Drew again, nursing him and then topping him off with another tube feed of just breastmilk - then I put him back to bed and hoped he wouldn't wake up again as he couldn't have anything after this until after his appointment at 8:00 a.m. The only way he settles back to sleep at night right now is to nurse, otherwise he's awake for at LEAST an hour. I hoped in vain this time - he was awake at 5:45 a.m. which actually worked ok because I had to give him his meds at 6:00 a.m. this time. We were off to the hospital at 7:15 a.m. and he was into his appointment sometime around 8:30 a.m. They had to anesthetize him for the MRI so they gave him laughing gas and he was out quickly. After that, they sent me out to count sheep, drink coffee, or anything to kill time for an hour or two. They then tried to get an IV start on him for the anesthetic but couldn't get a vein for some reason. They tried twice in each arm, a couple times on each side of his groin, a couple times in his neck and then finally they gave up and drew the blood they needed from his head. Poor guy, I'm so thankful he was out!!! He's a little polka-dotted this week! Anyway, due to that, it took a little longer than expected, but eventually I was able to come in and see him again. What a trooper, our little Drew. He was so happy to see me, as groggy as he was. So endearing!
After that, we were off to see Dr. Kirton again. I was a little nervous about this as the last two outpatient appointments with him he admitted us to the hospital! It was better this time and he had pretty good news for us. Drew's weight was up a pound and a bit. The ABR (hearing test) he had done a bit ago showed that he has a slowed response, but not anything that will affect his hearing - many people of normal hearing have the same thing. His MRI was good as well, from the cursory glance Dr. Kirton was able to give it. Drew's brain does not show deterioration, and the MRI of the spine looks ok too. He is going to look at the brain stem a little closer, but he felt we would be able to eliminate one or two of the disease possibilities after looking at this MRI. We are a little closer to an answer, but there are still so many possibilities on the list. We are just trying to check things off one at a time.
Drew has added a strange thing to his repertoire of things to attend to this week - he has started sweating on only one side of his body! So strange! We thought it was coincidence or due to the hot weather this week, but after talking to the dr. he thinks it's how messages are being conveyed down Drew's brain stem. He said it's nothing to worry about, but just to keep an eye on. It is so odd - we go to pick him up from a nap and one side is just soaked and clammy and the other is dry and soft. Oh well, I will take a sweaty baby as long as he's as smiley as Drew has been this week.
On another note, we are increasing one of Drew's anti-seizure med's this week. His seizures have gotten a little stronger on the left side and his left eye is winking quite a bit so we are increasing one of his night doses by a small bit. Hopefully it will help - as cute as the winking is, the charm wears off a bit after a couple hours of it!
Prayers for the week:
Pray Drew will eat solids consistently.
Pray the new anti-seizure med will work to stop the seizures or at least manage them better.
Thankful for the blessing of family and for all the amazing friends we have.
Thankful for the many meals people have been bringing by! We would surely be tired of cereal by now if we didn't have so much help!