Sunday, October 23, 2011

Family Pictures

This past Thursday we took some family photos and captured Carter at 9 months!
Honey-pie was not sure about the cold, and definitely wasn't a fan of his first encounter with grass... but he did really well!
A big thanks to Lindzie Smitherman of The Lindz Photography! We had a great time and they turned out AMAZING!











Thursday, October 20, 2011

One-tooth Wonder

It’s official! As of this past Saturday, Carter has his first tooth!! My friend Alisha watched Carter for me while my Dad and I went to the Florida/Auburn game, and she called me shortly after I left with the news that she found a tooth! He’s so cute with it, and thinks it’s funny when he bites you and you pretend it hurts :)

In other news, Carter is now 9 months old! He weighs 20 ½ pounds now (he gained a ½ lb in 2 weeks, so Mary Jane is pleased!) He’s still not sitting up by himself, but his tummy muscles get stronger everyday! He gets up on his knees and rocks, and grins because he knows he’s done something. He squeals and giggles and flaps his arms. He loves puffs, and chews them well. He watches intently when Josh and I eat, and smacks along with us! I’ll have to post a video of that soon. He’s starting to experience stranger anxiety, but is still really great in crowds… only occasionally does he get upset about someone talking to him or approaching him. He went to his first birthday party this past Sunday – his friend Kade. He did so good! And of course, Meemer fed him some cupcake! He loves my parent’s dog Tebow and their cat Noel, and is starting to get more comfortable with Maverick. We’re taking 9 month pictures this afternoon, along with some family pictures, and we’re doing Christmas cards this year! I’m so ready for the holidays and getting to capture so many memories with family as we enjoy Carter’s firsts!
Now, on to the medical news. We saw Dr Harmon in General Surgery last Tuesday, and he said Carter looked great. It’s not ideal for his bag to be covering the fistula, as it is supposed to drain once that “loose end” of the intestine fills up… it has to have somewhere to go! However, we did schedule an MRI for November 3rd (we’ll check in the night before to appease Nephrology for an IV for fluids). This MRI will be looking at the musculature near the rectum, to see if he’s developed any more muscle since his first MRI around 1 week of age. It will also show if the fistula is filling up, which isn’t necessarily a problem… it will force itself to reopen if it needs to, or Dr Harmon can re-dilate it to allow it to drain. We also talked about the Prune Belly Syndrome part of our diagnosis, and whether or not any muscle-tightening surgeries would need to be done on his abdomen. He said that our urologist would be more heavily involved in that part of his diagnosis, but that typically they don’t do those surgeries because they don’t always correct things, and sometimes do more harm than good. Plus, he said Carter’s is not too floppy compared to most, and that if he’s able to sit and pull up that he’ll be able to tighten them naturally, but may always be a little floppy.
We had an appointment with Dr Conklin, our Orthopedic specialist, this past Monday. They did a scoliosis series x-ray, since the tethered cord usually points to some form of it. He has a 14 degree curve. Scoliosis begins at a 10 degree curve. They consider bracing around a 20 degree curve, and surgical procedures are necessary for degrees of a much higher value. He said Carter’s is mild, and that it shouldn’t get worse since his tummy muscles are strengthening more and making him more stable in his posture. They’ll just keep an eye on it. As far as the arthrogrypossis, he said Carter’s movement is really great. Typically kids with arthrogrypossis have extremely stiff joints and have a lot of pain with movement, but his seems to be fine! He’s a little stiff through his knees and has always had some neck issues, but is doing really well overall. He said that they would not plan to do any surgeries on his hips unless he has hip pain once he gets old while walking, and even then that may not be our best route since it’s such a hit or miss surgery. In order to fix them they would have to pull the bone down (his sit up behind the socket that never truly formed) and cut a segment of bone out to make it short enough for the muscle and replace it on the pocket of the hip. Then, he would be in a series of SERIOUS casting to heal the cut bone and try to form a socket on the hip, which may still never happen to the extent that it would need to be pain-free. This is more easily done if it just one side, but becomes much harder when dealing with both hips, since he would be off-balance if they didn’t get it just right. So, he said he may walk with a slight waddle, but all-in-all should be able to walk! We’ll take that! He would like to do a foot surgery sometime next year to help completely correct his foot placement. The boots have helped tremendously in stretching his muscles in his legs, but his feet still turn up significantly. The tendon that runs down your shin and flexes your foot is too tight on Carter and runs toward the inside of his ankle. The surgery will be to snip that tendon on both feet, drill a hole in a bone on the top of the foot, and place the tendon there. Since the bones in the feet are so small right now, he wants to give him some time to grow and develop on his own before they plan a surgery. We’ll follow-up in March to see if he’s got enough bone to work with. Did you know that the typical white male child doesn’t walk until 13 months? Carter will more than likely be behind because of his conditions, but it actually is in our favor, because he’ll hopefully be getting around some, but not enough to be setting him back too far when he’s in casts for 6 weeks! Thankfully these casts will only come above the knee a little ways.
We’ve been out of the hospital for well over 2 months now, and we’re loving it!! I can’t tell you how great it is to be able to enjoy this sweet child at home. Thanks so much for your prayers, and keep ‘em coming!
waiting for Dr. Conklin

video
showing off his good movement :)

Saturday, October 8, 2011

Bottoms Up

The past 2 weeks we have been shoving food in Carter’s mouth every 2 hours while he’s awake. Here’s our “Champion Eating Schedule.”

0630: 2 oz water
0800: 6 oz bottle
1000: 2 oz juice with 3 tbsp oatmeal
1200: 6 oz bottle
1400: 2 oz fruit
1600: 6 oz bottle
1800: 2 oz veggie
2000: 6 oz bottle
I think his tummy has finally stretched and adjusted, because the past couple of days, he’s actually finishing two or three of the four 6-8 oz bottles in a day. The 8 o’clock bedtime bottle usually gets neglected because he’s just TOO tired to eat… but he usually takes at least 3oz. We’re averaging about 22oz of formula now… still not the 24oz they want, but it’s progress :) He’s also getting 2oz of juice and 2oz of water, for a grand total of 24oz of fluid intake. Still, not the 27oz they want… but it’s something!!
He had follow-up labs drawn last Friday to make sure the kalexate adjustment worked. Mary Jane called Monday and said everything looked great, and she’d like us to see our pediatrician in the next couple of weeks to weigh Carter just to make sure he’s not losing. We’re hoping he’ll have gained quite a bit thanks to his new diet!
Carter’s Uncle Greyson’s birthday was Friday, so we went to dinner with them after a busy week. Thank goodness it’s a long weekend! Tuesday, we’re off to Birmingham again for a follow-up with General Surgery. We “missed” our last appointment due to being admitted, but his resident did come around to see us. Hopefully we can get an MRI scheduled to see what Dr. Harmon thinks about Carter’s muscle function in his lower bowel area… this will be a major determining factor in possible pull-through. Thursday we see the pediatrician for Carter’s 9 month check-up, so hopefully his weight will reflect an improvement so I can call Mary Jane with good news :) The next appointment will be Monday, Oct 17 with Dr. Conklin in Orthopedics. I’m anxious for this appointment, because we’ve only seen him one other time outside of being admitted, and growth is the driving factor for any orthopedic surgeries he may have. At our first follow-up, he said he didn’t expect us to do anything before he was a year old. I’m still praying for a miracle – that the next ultrasound shows his hips in the socket! A girl can hope :) We’re also hoping that his feet have corrected quite a bit from his new boots, which he wears every night to bed without fussing about them!
The next few months will be super busy with the holidays. I’m going to try to update as much as possible, and to capture all of Carter’s firsts – pumpkin patch, Halloween, trip to Georgia for Thanksgiving, CHRISTMAS! He’s even going to his first birthday party, his friend Kade’s first birthday, next weekend! Pray for me… I have to go to Maryland/DC for a week in November for work, and it’s stressing me! I know Carter will be fine without me, but I’m sure going to miss him!

 still no teeth!

 getting BIG!


 going for a walk!

little pumpkin