Sunday, January 29, 2012

Year in Pictures: September

By the time September came around, James and the girls started getting a little stir crazy. Some of James's family still had not met Nadia, so that became a priority both because of familial responsibility and because everyone was looking for reasons to get out of the house. 



James and the girls went for a few walks at Long Hunter State Park. Jessica also took the girls a couple of times. This shelter is halfway through the big trail that goes over the lake. At first, Sofia was content to ride in the stroller. Eventually, though, she would not be contained, and would try to run the whole way. Sofia loved spotting deer at the park. 


James has many grandparents. This is Great-Grandpa George, not to be confused with Grandpa George. George and his wife Diane met Nadia for the first time on this trip. Sofia also got to play outside a bit and chased Cheeto the cat. James took to calling the cat Don Cheeto. Get it? No? Whatever. 



James sometimes proctors ACT and SAT tests in Brentwood, a job that he was set up with by his friend Chad Humbert. On this day, James was also to combine the job with a geocache. Geocaching is a sport where people use GPS coordinates and clues to find caches. Sometimes the caches are located in interesting areas that the person who placed the cache wants people to learn about. This one was in a slave graveyard. James found the inscription flawed. 


As Nadia grew sturdier and Jessica spent more time at work, cuddling became more important. 



One of the ways that James got the girls out of the house on some days was to take them to the zoo, where Jessica works. Sofia could run around a bit, feel closer to Mommy, and get some fresh air. Nadia often slept during these trips. Sometimes James would feed Nadia while Sofia played in the playground. 


Zoo trips were also a good way to tucker the girls out. 


As Sofia grew more capable, there were more and more casualties. One day she got poop all over every toy in her bed. 


Grandma Sandy and Uncle Josh came for a visit in September that is legendary. 



Everyone went to see Cousin Kate in a parade!


Sofia enjoyed her time with Uncle Josh, whom she prays for every night. 



Many vehicles in the parade had sirens. Sofia learned to cover her ears when a car or truck with flashing lights came by. James wasn't too bright in this regard, and Nadia was startled by the first emergency vehicle. Josh pointed the mistake out, and James moved the baby to a safer distance. 




This is a whiteboard outside of the writing lab at Volunteer State Community College. The instructors put up a new quote every week that was meant to inspire, and allowed students to add their own comments. James liked  the challenge of being funny. Sometimes James's responses got erased. Everyone's a critic. 


Nadia had her second Down Syndrome clinic. By that point she was a bit of a bubble baby. For the most part the feedback was that Nadia was doing well, but physical therapy was suggested, as well as a helmet to help with how flat that back of her head had become. 



Meemaw got to meet Nadia for the first time. It was great weather outside, so James, Sofia, and Nadia went to Lavergne to show the baby off. Nadia and Meemaw fell in love, and Sofia got to play with her cousin Abby. 






Nana and Goompa let Sofia spend some time in the driveway on warm days drawing with chalk. 


During another inconclusive hearing appointment for Nadia, James and Sofia explored Vanderbilt Hospital. During a search for a playground that they had spied from a higher floor, they came across this saltwater fish tank that had some of the fish from Finding Nemo, including a star fish!



Nadia's first solid eating started in September. She is much better at it, now. 

Wednesday, January 18, 2012

Helmet Reshaping Therapy Update

Nadia is half way through her helmet reshaping therapy so at this last appointment they took a new scan of her head.  The initial scan showed that she was at 103% width to depth.  A "perfect" head sits around 80%.  Our tech, Jason, told us that he felt optimistic that he could get Nadia in the low to mid 90's by the end of her therapy.  The mid-point scan showed that she is at 94% and has almost another 3 months to continue to improve!  Go Nadia!  She has grown so much.  That is evident by all the clothes she has grown out of, how tall she sits in her car seat, and now how round her head is getting.  We are extremely please with the results.  It was a rough start for us at Hanger Orthotics, I can't say that I would recommend them based on customer service, but the results they have supplied are great.

Nadia will continue to wear her helmet until she is a year old or until Jason tells us that her head is done growing (when all soft spots have closed).  James takes her in for fittings/adjustments every three weeks or as needed.  She hates the thing now.  As she has gotten more in control of herself, she has learned to grab the helmet and try to pull on the velcro piece on the side.  She is nowhere near strong enough to take it off by herself so she is stuck with it.  We hope she won't remember the annoyances of wearing a pink helmet 22+ hours a day for six months.    Two more months, little buddy, and you can show your beautiful head to the world full time.

Hearing


Long time, no blog.  Life, folks…it is a busy one.

Nadia finally got a referral to and ENT (Ear, Nose, and Throat) specialist.  She had numerous tests while in the hospital during her first 6 weeks of life and has had two appointments with the Bill Wilkerson Center since then all of which were “inconclusive”.  Her ear canals are so tiny that they can not see her ear drums and thus can not tell if she has damage or blockage causing her hearing problems. 

Dr. Goudy recommended surgery.  This sounds much, much scarier than it truly is.  Basically, by putting Nadia under sedation, he can use smaller and more precise instruments to see in her ear.  If he sees fluid is built up, then he will take the opportunity to drain it away and insert some tubes.  If not, then we know that blockage is not the problem and we can finally move forward with creating a plan to assist her with hearing (maybe some technological assistance down the line).  Partnering with Dr. Goudy during the procedure will be an Audiology specialist who will seize the moments of baby sedation and conduct an ABR (auditory brainstem response).  “This simple test evaluates how well sounds travel along her hearing nerve pathways from the ear to the brainstem. The test, performed while she's comfortably sedated, shows the softest sounds your child's ears can detect at various pitches” (courtesy childrenshospital.org).    The entire procedure should take less than an hour.

I feel very comfortable with this procedure.  Nadia has been under anesthetics three times before (peritoneal drain insertion and removal, bone marrow biopsy) and has not had any problems coming out of it.  We know that she is suffering from hearing loss and have known that for most of her life.  This has been confirmed by tests from audiologist, our pediatrician, NICU, PICU, and the Bill Wilkerson Center.  We know that she has been on various drugs (including chemo) that can cause hearing loss in infants.  We know she can hear; we just don’t know how much.  I know that she instantly quiets when her sister sings her “Twinkle, Twinkle, Little Star”.  I know that she calms for bed by snuggling to my chest as I sing.  I know that she startles at the doggies barking.  I am elated to be moving in the direction of getting her some help.  Having DS, she will struggle more than most with speech and overall development.  I look forward to being able to give her the greatest opportunities to succeed and right my energy is being focused on allowing her to hear as much as she can. 

Friday, January 6, 2012

Year in Pictures: August


Sofia really grew into her toddlerness over the last few months of 2011. 



Sometimes we have to ask Sofia to reel it in a bit.





Michael and Konica are always great dinner guests. They usually stay with us when they are up from Memphis visiting family. James felt awful the day after this visit. 



Nick Peay, James's first college roommate, played a rare Nashville show at Springwater, James's favorite shit hole. James took advantage of the opportunity to see multiple college friends on his home turf. 


Patrick, seen here on the left, was almost killed when the rail he was hanging onto moved, shorting out the electrical wires that were inside. The shower of sparks was impressive and very scary. I always thought that if anyone were to die at Springwater, it would be from sitting on the toilet, not from the lighting. 


Mommy really missed her girls while working at the zoo.


RJ, a friend of James's. James and RJ always get into conversations that have no place at parties. Graham's going away party was no different. If you go to parties to mingle, do not approach the dark corner which holds RJ and James. You may end up talking about the importance of self-imposed privacy all night.




Thursday, January 5, 2012

Year in Pictures: July


Over the summer, Sofia became much more interested in being like Mommy and Daddy. 


The Marths stuck around for a bit after The Peaches came home. Our appreciation for their help during the transition is unspeakable. Sofia got very used to having them around. 


It is virtually impossible for The Marths to visit without engaging in a project of some sort. I believe there has only been one trip where neither the Peach home or the Sanborn home was changed significantly for the better. Jessica and Gary did the flower bed. This was kinda the year that the yard started to pull together. James seeded the front yard, did a (very) little work in the back, and built a rock wall around the mail box. 


Sofia became more dangerous this year. Perhaps she was jealous of Nadia getting to hang out at the hospital so much. This is probably from when she reached in the dishwasher and burned her hand on the heating element.


They fell in love with each other over the summer. 



This was the year where the animals realized that the house would never be theirs again. They now search for small victories.


Mommy and Sofia went to the pool as many times as they could handle, which wasn't many. 


Nadia and at least one of her parents have early intervention appointments at home once a month on a Thursday with Katie, a care worker. Everyone puts effort into teaching Nadia how to use her muscles properly. It can be challenging. Usually it is fun. 


James and Jessica went to see U2 in Atlanta in 2009. a few months after Sofia was born. The show wasn't very good, and neither were the seats. A few months after Nadia was born, U2 came to Nashville for only the second time ever, and the first time in nearly thirty years. James was ready this time. 


Hoping to get as close to the stage as possible, James and friends camped out all day, starting at six in the morning and ending when the gates opened at four-thirty. James had never done anything of the sort, and will probably not do anything of the sort again. It was exhausting. Stage-hauling trucks lined the sidewalk and ran all day and it was miserably hot. Also, it turned out that the section closest to the stage was so large that the people who showed up at sunrise and the people who showed up at five o'clock stood right next to each other. James was happy to be with friends. 


The show was legendary. James could barely walk after the long day. 


James wondered earlier in the year if Nadia would ever smile. Now it is as if she can't stop.


This is Sofia attempting a thumbs-up. She has it down, now.




Sofia loves Kate as much as anything. Now that they can both scream and run, they are often both screaming and running.



Our church started a third congregation this summer. This is Dave, our new congregation's pastor, at the interest meeting. 


James sat with women. They tend to smell better and have better table manners.