Uncategorized 12:08 am
Hi all,
We’re received several requests, nay demands, that we post new photos of Harper. So we’re happy to oblige Harper’s adoring fan base.
We both have Facebook pages where we update more regularly, so check us and Harper out on that site.
Nick and Chel
Uncategorized 9:20 pm
Hi everyone –
Sorry we haven’t posted in January. It’s been busy with visits from Nana, Pop and Aunt Ash, many, many doctors’ appointments, two uriniary tract infections and a really bad diaper rash. Harper had a wonderful first Christmas and received more toys than any six-month-old could ever play with. Her room looks like Toys R Us exploded.
We met with a plastic surgeon in Bristol who says he is comfortable doing the surgeries to remove her birthmark. The good news is that it will take three or four surgeries (Chelsea thought it would take more), and that it can be done in Bristol. The bad news is that the surgeries will leave big scars and there’s a pretty significant risk of doing damage to her facial nerves. The plan is to start around one year of age.
We also met with two orthopedic surgeons – one in Bristol, one in Knoxville – about Harper’s right hip. It’s dysplastic meaning the joint doesn’t fit together properly. The plan is to wait and see how well she can walk before deciding on a course of action. If she doesn’t walk much, we’ll probably not have to do much to address the hip issue. If she does walk well, she’ll have surgery to fix it. We’ll revisit the hip issue around 18 months.
Her regular appointment with her neurosurgeon went well. He says she’s doing great.
Harper has also had two urinary tract infections since December. She’s taking antibiotics for the infection and will stay on a low dose of antibiotics for six months. If she has a break-through infection during that time, we’ll be referred to a urologist which means another doctor in Harper’s retinue. Yay! But we’ve always known a urologist would likely be in her future and are a little surprised she hasn’t had to see one already.
All things considered, she’s really doing well. She laughs all the time and is doing pretty well turning over. She’s bearing quite a bit of weight on her legs too. We think she’s teething which is tons of fun. And, she’s started eating more solid foods like rice cereal and fruit.
Here are some new pictures to enjoy, including one of Harper after Nick tried feeding her peaches. Clean up required a fire hose.
Uncategorized 8:57 pm
Hi everyone,
We want to wish everyone a very Merry Christmas and many blessing in the coming year. We’ve been through a challenging year, but also a year that has brought us unbelievable blessings. Harper’s arrival in July is the single greatest thing that’s ever happened to us. We can’t believe what a beautiful, strong and brave little girl she is and how much she’s changing each and every day. Just last night, she rolled over for the first time and this morning, she held her bottle with no help from us! It’s amazing to see her discovering the world and learning to do new things.
The upcoming year will bring Harper challenges as she learns to walk with braces, and there’s the possiblity she’ll have additional surgeries to remove her birth mark and possibly to correct a problem with her hips. We’ll see those specialists and learn more about those issues in January. And as always, we’ll keep you updated on her status and accomplishments.
There are no words to expres how grateful we are to Harper’s loyal fan club. We want each of you to know how much we appreciate you taking so much interest in our family and Harper’s health. We truly believe she wouldn’t be where she is today without the continued heartfelt prayers of so many. We truly couldn’t have done this without the support of such a great network of caring friends and family members. Thank you each for what your continued support and love!
Nick and Chelsea
Uncategorized 4:45 pm
Sorry we haven’t posted an updated since we left the hospital, but rest assured, everything is OK. Harper is doing well despite having three incisision sites that must be quite painful, especially when we pick her up. She’s smilingm laughing and eating a lot and seems to be starting to teeth as she’s gnawing on anything that comes close to her mouth.
We head back to Knoxville on Friday to have her stitches removed and hopefully get a good report from the neurosurgeon.
As always, thanks for your continued prayers for Harper’s well being. She’s so lucky to have such a devoted fan club!
Here are some pictures we took before her surgeries last week.
Uncategorized 2:13 pm
We’re going home today! Will post more later….
Uncategorized 9:47 pm
Harper’s surgery this morning went well. She did great, and Dr. Harris was able to internalize her shunt with no complications. We were able to be with her in the pre-surgery holding area, and Chelsea was able to sit with her in recovery and be with her on the trip back upstairs. She is now in a regular pediatric room, not the pediatric intensive care unit.
She wasn’t able to eat anything after midnight, so she was a hungry and cranky monkey this morning. She took her first bottle of the day around 2 p.m. and has been resting comfortably since then. (Incidently, everyone here has commented on Harper’s love of food and are amazed by how much she eats. We found out this morning the nurses have had an exceedingly difficult time placing IVs because her arms and legs are so chunky. We have assured them we do not force feed the child.)
Dr. Harris has ordered a couple of radiology tests for the morning to make sure the shunt is working properly along with cultures of her spinal fluid. If all goes well, we’re headed home tomorrow! She still has a ways to go to heal though – she’s got three incisions and will need her sutures removed next week.
Thanks for everyone’s continued prayers for our little girl. We’re extremely grateful for Harper’s network of loyal fans!
Uncategorized 3:16 pm
The cultures on Harper’s shunt and cerebral spinal fluid have all come back negative for infection growth. Therefore, Dr. Harris is going to perform surgery Wednesday at 8:30 a.m. to internalize the shunt. If all goes well, Harper may be discharged as early as Thursday afternoon. Keep your fingers crossed….
Harper continues to be in good spirits and is proving much less whiny than her mom or dad. She’s smiling and laughing and taking all this in stride. Here’s a picture of our sweet girl.
Uncategorized 2:37 pm
We’ve been told Dr. Harris (Harper’s regular neurosurgeon) isn’t going to replace her shunt until Wednesday at the earliest. He wants to make sure the cultures are OK before internalizing the catheter. He did change her antibiotic to a medication that covers the central nervous system better and he can change it again if the cultures indicate any sort of infection. Hopefully, the culture on the catheter tip will be back tomorrow morning, and we’ll know for sure if infection is an issue.
Harper is doing OK. We think she’s getting pretty restless, bored and uncomfortable. She’s managing a few smiles here and there though, and that does our hearts good.
We had optimistically thought we’d be home by the end of the week, but with this latest news, we’re planning to be here through the weekend at least. Sigh…
Uncategorized 6:50 pm
We brought Harper to UT Medical Center in Knoxville late Friday night to have surgery to repair her malfuntioning shunt. She had surgery around 1 a.m. Saturday and has done well so far. We’re waiting to see if the shunt that was repaired was infected or not. We’ll have a better plan of action tomorrow when we speak with her regular neurosurgeon.
We did get some good news today from the neurosurgeon who performed the surgery. The culture of the cerebrial/spinal fluid they took from her brain during surgery does not indicate infection. Cultures on the tip of the catheter aren’t back yet, but we’re taking this as good news. Pray we continue to get good news tomorrow.
Harper is doing very well, all things considered. She’s sleeping a lot, but when she’s awake, she’s happy and active. She’s such a brave girl and we’re so proud of the way she’s handling this situation.
We doing are OK for the most part – just tired, stressed and worried. We did finally get some sleep last night so we’re functioning a bit better today. And we can’t say enough about the staff here at UT. They’re letting us stay in a hospital room here on the pediatric unit. They have a low census and don’t need the room for patients so we’re staying right across the hall from Harper. It’s nice being so close.
We’ll post more as we know it. Here is a photo of Harper we took this morning.
Uncategorized 9:11 pm
We traveled to Nashville on Monday and Tuesday so Harper could see a pediatric dermatologist and a pediatric neuro-ophthalmologist. Both of these appointments were in reference to her birthmark and the possibility of an eye disorder/malformation due to nevous sebaceous syndrome. Overall, we received a very good report from the docs.
We got a great report from the neuro-ophthalmologist. We saw him because nevus sebaceous is sometimes an indicator of significant neurological problems, and with the spina bifida an already obvious neurological problem, we wanted to be sure we weren’t missing anything. He said she looked great, though, with no indicators of anything else wrong. He also checked the optic nerves to see if the hydrocephalus had done anything, but we got a good report there, too. He was concerned about the nevus sebaceous on her eyelids, but he said the plastic surgeon would need to weigh in on that.
We got nothing terribly new from the pediatric dermatologist, though. She was on the fence about removing the nevus sebaceous now or waiting a few years. She, too, said it would ultimately be a call for a plastic surgeon.
So, that’s clearly our next step. Our insurance has selected Dr. Brantner in Johnson City as the surgeon, be we suspect he’s going to refer us to a pediatric specialist, most likely in Nashville. Then, we’re looking at a series of procedures. But there are still a lot of “ifs,” so we’ll talk to Dr. Brantner and plan from there.
Luckily, Harper is a great traveler. She made the drive without any problems and appeared to like staying in the hotel better than staying at our house – she was all smiles both days.
Thanks for the continuing thoughts and prayers.
Smiley girl.
Tired punkin!
The Dirt 
