Saturday, June 25, 2011
Wednesday, June 15, 2011
Sunday, June 12, 2011
|Thu, Jun 23, 2011||10:00 AM||719 Thompson Lane, Suite 24500|
|Fri, Jun 24, 2011||2:00 PM||2200 Children's Way|
|Fri, Jul 01, 2011||3:00 PM||2200 Children's Way|
|Mon, Aug 01, 2011||1:30 PM||719 Thompson Lane, Suite 24500|
|Tue, Sep 27, 2011||10:00 AM||2200 Children's Way|
|Wed, Sep 28, 2011||9:00 AM||Medical Center East, South Tower|
Friday, June 10, 2011
Thursday, June 9, 2011
Saturday, June 4, 2011
1. I promised that the entry would go somewhere less dreary, and I intend to fulfill that promise. Writing is hard to come by at the moment. Please bear with me!
2. The entry is titled "What the Hospital Fixed in Daddy," not "What the Hospital Broke in Daddy." Be patient with the storytelling. It's impossible for me to get across how the transition felt if I don't get across how I felt at the start.
3. At the least, though, I am very satisfied that I sufficiently depressed people. Obviously, I nailed the feelings I was wanting to convey!
4. This is a big one. I am accessible to most of you. If you are concerned, you should contact me. Don't just go in circles with others who are worried. Go to the source. I'm here, and would love to hear from any and all of you. If you are concerned about someone, you should never stay in the shadows. This doesn't just go for this situation.
I love y'all. Now I have to write.
Thursday, June 2, 2011
Nadia had two great appointments this week. Yesterday we met with audiology for the diagnostic hearing test. The technician took Nadia and I into a soundproof room; the sound was so dead that it hurt my head. She put a device into Nadia’s ear that was supposed to test the pressure and detect whether or not she had fluid blocking her eardrum. Unfortunately, Nadia’s ear canals are so small that she couldn’t get a reading. James traded out with me and held Nadia during her 45 minute test while I took Sofia out to not distract the testing.
Sofia and I got a yogurt and a bottle of water then walked around the hospital courtyard until we found a nice bench in the shade to sit on while we ate. It was really enjoyable spending time one on one with Sofia. We’ve had our moments of struggle in the past few weeks where she acts the typical toddler and is very defiant. She’s had this attitude and acts out more toward me than James and I think it is how she is showing her frustrations about so much of my time being directed toward Nadia. During our date in the courtyard she was an angel; I didn’t get one challenging look.
When we met back up with James and Nadia, he shared the test results. Nadia is having difficulty hearing the highest of highs and the lowest of lows. Since they couldn’t get the pressure test, they did some sort of test that bypasses the area where the fluid builds (something about a bone test?). The nurse felt confident that Nadia’s hearing problems are because of fluid based on the result of this test. We are very hopeful that her hearing will continue to improve as she gets older. An audiologist will evaluate her again at six months and see if we need to be referred to an ENT (Ear, Nose, Throat) Specialist to see about tubes.
Today, we had our first session at the Down syndrome clinic at Vanderbilt. The appointments started at 8:00 and were scheduled until 11:30. Sofia spent the night with her Nana so that we wouldn’t have the distraction of entertaining the toddler during the meetings. As we entered the waiting room I was slapped with the obvious realization that Nadia has Down syndrome, I sometimes forget, I sometimes want to forget. I’m reminded every time I see person with Downs. This morning it was an entire waiting room of kids with Down syndrome that made my forgetful denial sulk into the reality that I have a daughter with Down syndrome. Nadia was a hit in the waiting room, the kids swarmed to look into the stroller at the baby (the adults were more discrete but many came over to see her in their own time). James and I were both nervous about today’s appointments, although neither of us shared that with the other until after. After we got checked in, we had to fill out a developmental questionnaire that was pointless for a newborn and put us more on edge. By the time we got called back by the nurse, we were snapping at each other. Not true, it was more me snapping at James over a diaper on the scale and James retreating into his Smart Phone. Nadia weighed in at 9 pounds 2 ounces (another healthy gain) and would not allow her blood pressure to be taken. She hates the cuff tightening on her leg and kicks. I held her foot tight for two separate attempts and the reads were way high, she was so upset that her blood pressure was through the roof. Thankfully the nurse decided that a calm read was not necessary so long as she could get her pulse.
We were shown to our room and all the doctors for each appointment came to us. We met with our main Downs doctor, a Nutritionist, a Speech Pathologist, an Occupational Therapist, and a Physical Therapist. This place was awesome. We ran on time and were given all the attention we needed. They praised Nadia on her eating and praised me on pushing on with pumping and sticking to feeding Nadia only breast milk. Speech offered us some sign language suggestions (it is never too early for us to start using it around her) as children find basic sign language easier than English to express themselves. She was very supportive of Nadia’s skills at sucking on the bottle. PT loved that Nadia can hold her head as well as she can. She stressed the importance of tummy time and introducing toys to stimulate. OT wants us to work on propping Nadia on her side to help her bring her hands together (something I have seen her do only once). Both of these ladies pointed out to us that Nadia favors her left side; she can look to the right but really doesn’t like to and won’t unless she’s really curious. So…we need to make sure that we are encouraging this curiosity to the right. Neither James or I realized this until today, but we do everything on her left side: feed her, hold her on our shoulder so that she turns left to look at us, etc. Nadia gripped the OT’s rattle and shook it around for several seconds. She even smiled at the PT. The therapists left us with a list of several recommended books to purchase/read.
The morning was fantastic. James and I were glowing with pride at Nadia’s accomplishments. The encouragements and praise we received from every member of this team did so much for us today. They showed concern for us as parents as well as the child we expected them to focus on. We spent some significant time with the first doctor talking about my depressive tendancies and options for that (not what I expected at the Down syndrome clinic). The talk somehow did not make me feel cornered or confronted but simply cared about and that is a fine line with me and my emotions. I am not naive enough to think that all of Nadia’s developmental evaluations will go as well today, but I am selfishly grateful for James and my sake that this first was so incredible and motivating and on time and honest. This resource is huge for us and for Nadia. They all want to see her again at six months and see how many more milestones she’s met and what we may need to work on.
Thanks again for all of the support and prayers being said for Nadia and the Peach Family. The power of prayer has pulled us through the previous two and a half months and delivered us from a wonder child who is being more than we ever dared to dream.
Love to all, Jessica