Saturday, September 24, 2011

Sleepover party

Last night, we watched Harding's buddies' Isaac and Haven while their parents (who live across the street and next-door) enjoyed a Friday night out, without their kids. It is probably safe to say that Harding and Shelby go to sleep earlier than any of the other kids in our neighborhood (since we have to wake up so early). Anyway, we told Harding that he could stay up late with his friends last night and watch a movie. He was so excited, but just couldn't do it. These pictures were taken at 9 pm...the movie wasn't even halfway over.

Passed out...good thing Haven and Isaac aren't into pranking yet!

I'm behind the couch holding Shelby up for this picture. She stayed awake for all of the festivities. :)

Back to school transition

Harding, Shelby, Trip, and I have been back to our fall school schedule since mid-August. There have been more than a few bumps in the road in our month of transitions, but we are slowly getting in to the groove of things.

Harding has returned to his old school that he attended before Shelby was born for Pre-K. He calls it his "new-old school" and has settled in really well. He has made new friends and become re-acquainted with old ones, is learning new things every day, loves his teacher (Ms. Kim), and is excited about everything but nap time. It is really neat to watch him learn his letters and write his name...I know that in the next year or so he will be reading and I am beyond excited about that huge step in his development and learning. It is hard for me to believe that he will be in kindergarten next year, where has the time gone?

Thankfully, Shelby did not have much of a transition this year. She is in the same early head start classroom at the same preschool she attended last year, with the exact same teachers and students. We are so happy with her school situation and thrilled that she gets one more year there. Shelby makes it clear to all of us that she absolutely loves school. Any time we put on her orthotics and shoes, she says "school" in hopes that we are headed that way. She talks about her teachers (Tara, Eduard, and Marilyn) constantly. She also mentions her favorite classmates, Taj and Zaraina regularly. In the week after Shelby's surgery, my mom and mother-in-law would take Shelby to school for circle time, because she obviously missed being there. Barbara told me that when they got there and she put Shelby down, Shelby took off immediately for her favorite shelf of musical instruments, and then all the kids surrounded her and were covering her with hugs and kisses. I wish I could have seen it. I worry sometimes about her being the only non-walker there, but with three teachers and seven classmates that all know her and love her, I know she is in good hands.

This year, Trip is taking both kids to school. It is nice for me, but really tough on Trip. Getting two kids out of the house and to their respective schools is no easy feat. Most days we've got it down though. From 5:30 to 6:50 when I walk out the door, he and I are working together to get ourselves ready, and then the kids dressed and fed. As I leave the house, Trip is beginning Shelby's morning therapy routine. Trip also meets Shelby's various therapists and vision teacher at her school a couple days in the week to work with Shelby. Also, on evenings when I have class, Trip puts the kids to bed by himself. Yes, he is wonderful!

I have had a pretty smooth back-to-school transition this fall. I'm working with a great team of teachers and our group of students is delightful. The tough part is coordinating being a working mom with all of Shelby's after-school specialist and therapy appointments AND my graduate classes. Unfortunately, I decided to take two this semester. Huge mistake! I realized after Shelby's surgery that two classes was way too much, but there is no going back now. I'm trying my best to stay afloat and not be too hard on myself, but I am unfortunately not superwoman (the state of our house attests to that fact). It would be safe to say that I am more than a little stressed, but I have learned my lesson and will not be taking so much on next semester.

Since our schedule is so insane, I am once again incredibly thankful for my parents and Trip's parents who help us out in innumerable ways. We could not do it without them, and are blessed to have them close by.

Thursday, September 15, 2011

One week post surgery

Shelby is pretty much back to her old self one-week after her shunt revision. She is elbow crawling all over the place, talking up a storm, trying to pull up on furniture, demanding that her favorite songs be sung (with the proper hand motions, mind you) and continuing to keep us on our toes in terms of supervision.

We went to the pediatrician today (Dr. Love) for a general post-surgery check-up. Both incision sites are healing nicely, and Shelby now has clearance to return to PT, OT, and preschool. She'll resume those activities next week. The only difference we have noticed in Shelby since the shunt malfunction is her eyes. They are far more "jiggly" than they were before and they seem to get stuck upwards from time to time. Her brain was under pressure and the ventricles were enlarged during the shunt malfunction, so I am assuming the eyes may have been affected. I have emailed Dr. Grant (her neurosurgeon) about this and Dr. Love suggested I also contact Shelby's ophthalmologist as well. Possibly all this will go back to normal as the new shunt does its thing. I am really hoping Shelby's vision hasn't been affected by the shunt malfunction...time will tell. 

This experience was scary for sure, but not unexpected. Shunts can stop working for various reasons at any time. Now that we have one shunt revision under out belts, I feel like we know what to look for in terms of symptoms, and we won't question ourselves as much the next time this happens. We are hoping that Shelby will have this shunt for a really long time though. Thanks so much for your continued thoughts and prayers! We felt very loved and supported last week!

Shelbs doing "the elbow crawl".
Trying to pull up (she needs to be using lefty though).
She is obsessed with cars and trucks and says "vroom vroom" as she pushes them. Love it!

Superboy and his trusty sidekick

Harding's interests are quite varied right now. He still loves his trains, but is no longer obsessed with them. He is becoming interested in Star Wars, which is interesting to me, because he hasn't ever seen the movies (notice the Darth Vader hoodie that he is wearing above). The superhero obsession continues in full force though. He wants to put on his cape as soon as he wakes in the morning, and begs us to let him wear it to school. He is constantly tying shirts around Bailey's neck so that the super doggie can have her cape as well. Bailey is not excited about her new role, but every respectable superhero needs to have a sidekick!

Monday, September 12, 2011

Sassy new 'do!

Post-surgery, Shelby is sassier than ever. Now she has a haircut to go with her attitude!
Mommy won't be torturing her with pigtails and braids for a few months which is a bonus as far as Shelby is concerned.
Thanks to the talented Tena at Ananda in Asheville. She does a great job cutting a moving target's hair. Shelby was a bit scared at first, but once she realized that Tena wasn't there to poke or prod her with needles, she did really well. And as Tena told me, the asymmetrical cut is in, so Shelby is at the height of fashion. :)

Sunday, September 11, 2011

Home sweet home!

We got home yesterday afternoon and Shelby and I are so glad to be back here with Harding and Trip. On the morning after Shelby's surgery, she was still only content burrowed into my arms. By that evening, she was trying to crawl across the hospital bed, demanding her toys and her ipad, and just generally raising hell. I am so glad that my cousin Katy was there with us to help me keep Shelby entertained. Anytime the door would open to our room after a soft knock, Shelby would get really still and say, "Oh, shoot." Yep, back to her old self! She learned really quickly what people were there to play with her and what people were there to mess with her. Anytime medical personnel came into the door, she would burrow into me again trying to hide and I can't say I blame her. Yesterday morning was spent waiting around for all the paperwork and procedures to be complete that would allow us to be discharged. As we were walking out of the peds floor and the hospital itself around mid-day, Shelby alternated between saying and waving, "bye bye" and shouting, "hooray". It was pretty cute! When we got home, she went right for all of her favorite toys and was elbow crawling slowly all over the place playing with them. In the past few weeks, she had mostly resorted to commando crawling with her belly dragging across the floor. I don't know if that is because her shunt was slowly failing or if she preferred that faster travel mode. Now she is back on her elbows with her belly off the floor. I am relieved about this because the neurosurgeon told us her abdomen would be pretty sore for awhile (she has an incision there too). That's all for now, I want to get some snuggle time in with Harding while Shelby and Trip are still sleeping. I'll try to put some pictures up later today though. P.S. Shelby has a haircut appointment scheduled for Monday morning.

Friday, September 9, 2011

Surgery, Recovery, etc

Shelby was sleepy and subdued all day yesterday, but her sassiness came out anytime a nurse had to mess with her. She actually won the catheter battle with two nurses--shocking them (but not me) with her strength. We waited a long time for an available OR yesterday, and they finally got Shelby in around 3:50 in the afternoon. The surgery went well. The catheter part of the valve in Shelby's old shunt was completely blocked and there was fluid back-up in other parts of the shunt so they decided to replace the whole thing to be safe. The new shunt is similar to the old one, but it has a non-syphoning valve that is better for standing upright since Shelby is moving in that direction developmentally.

Shelby is a bit sleepy, and obviously in some pain but has managed to sleep most of the night. She has been drinking water and eating bites of applesauce. We'll try something more filling later today. She keeps pulling at her bandages, and I think that might continue as she regains strength. Also, she has a new haircut, where they shaved around the incision that I am trying to not get too sad about. She needed this surgery and everything went well, that is the important thing--hair grows.

Trip just left to go back to Asheville. He is out of vacation time (thanks to three days of jury duty last week) and we didn't want another day without pay. Plus Harding will probably appreciate him being home tonight. My cousin Katy, who lives here in Durham is coming to keep me company (and help occupy Shelby) today. If Shelby continues to do well, she will be discharged tomorrow and we can go home. I am looking forward to a return to normalcy, although Shelby can't go back to school for 2 weeks. Thanks to everyone for the prayers, thoughts, phone calls, texts, and emails. They help so much!

Thursday, September 8, 2011

Here at Duke awaiting surgery

After a series of unexplained calamities that kept us from getting out of Asheville (we are not happy with our experience at the Mission ER), we were finally transported via ambulance to Duke Medical Center. We arrived around 1:30 a.m. and Shelby was assessed and monitored (she is stable but has some irregular heartbeat stuff going on) while the chief peds neurosurgeon did an emergency surgery on another two-year-old. Dr. Fuchs is napping now till the daytime OR folks show up at 6:30. They are going to try to work Shelby's shunt revision in wherever they can find a spot sometime this morning. Trip is napping with Shelby in her bed right now and I will try to nap as well as soon as I eat these crackers the nurse just brought me. We feel good about the care that Shelby is receiving now and am so glad we're finally at Duke. Will update when she comes out of surgery.

Wednesday, September 7, 2011

Shunt malfunction

Bad news...we are at the Asheville ER awaiting helicopter transport to Duke Hospital. It appears that Shelby's shunt is failing. She will most likely be having a shunt revision surgery sometime tonight. We will update when we can but in the meantime please keep Shelbs in your prayers!