Thursday, July 3, 2008

Extra, Extra Read All About It!

Welcome to our new blog! Although CarePages has been very good to us, we've decided to transition to something new. This blog will consist mostly of Addison updates but there will be updates on Dee Dee and myself too!

For those that don't know us, Dee Dee and I have been together for almost 10 years. We live in Lake in the Hills, Illinois with our daughter, Addison, my mother, Nan, Dee Dee's sister, Michelle and three dogs, Fiona, Mason and Joe. We both work for MetLife. We're a pretty laid back family. We enjoy hanging out at home, going to movies, playing with the dogs, spending time with family and friends and taking trips.

Our daughter, Addison Mackenzie, was born at 24 weeks and 6 days gestation. Dee Dee was pregnant with twins and our son, Riley Parker, was found to have low amniotic fluid around 17 weeks. We were prepared to lose him in utero however he held on until Dee Dee went into labor and delivered them on November 9, 2007. Addison was born first and weighed in at 1 pound 9 ounces and 13 inches. Riley followed a minute later and weighed in at 1 pound 7 ounces and 11 inches. Both were intubated immediately due to underdeveloped lungs. Riley passed away in our arms about four hours after he was born. Subsequently, Addison was transferred to Children's Memorial Hospital where she remained until her May 22, 2008 release. Addison has been diagnosed with the following conditions: Respiratory Distress Syndrome, Chronic Lung Disease, Retinopathy of Prematurity, Gastro Esophageal Reflux, Bilateral Grade IV Intraventricular Hemorrhage, Hydrocephalus, Periventricular Leukomalacia, Patent Ductus Arteriousus and Necrotizing Enterocolitis. She had a total of eight surgeries while in the hospital. She currently has a shunt for her hydrocephalus and a g-tube for her feeding. She is also still receiving 1/8L of oxygen via a nasal cannula. She's a pretty amazing little girl with TONS of people who love her. Addison currently gets at-home care which consists of visits from a speech therapist, two physical therapists and an occupational therapist. She is also still followed up in-office by a Neurosurgeon, Pediatric Surgeon, Pulmonologist, Opthamologist and her Pediatrician. If you'd like to read more about Addison and her journey prior to this blog, please visit and do a search for AddisonGile.

So, speaking of Addison. Time for an update! I completely spaced telling everyone about her speech therapy appointment last week. It went awesome. The speech therapist was very pleased with Addison's assessment. She's happy Addy seems to have no oral delays other than language. We're going to see how Addy does with speech therapy and she may end up getting a swallow study. We are definitely proceeding with caution so that she doesn't have another choking episode as she had while at Children's. We've been giving her tastes of milk with most of her feeds and she loves them. We also got these dental wipes called "Spiffies" which are flavored mouth wipes for babies. It definitely assists with oral stimulation. There are three flavors: grape, mango and apple. Addy has only had grape so far but is already addicted.

Addy also had her second visit from the physical therapist for the study she is in. It was amazing to see the difference since the last time the therapist was at the house. Just like the speech therapist - she was incredibly impressed with how well Addy is doing. Both speech and physical therapy has made comments that it definitely helps Addison that she has so many people that love and support her. Anyway, as I've mentioned before, the therapist holds Addy over a miniature treadmill to get her brain to recognize the walking movement. Last month, Addy was NOT having it. She cried and pulled her feet up or let the treadmill drag her feet with it. This time Addy was actually making walking movements!!! It was so amazing. Our goal is to keep her very mobile to hopefully inhibit any possible tone she may develop in her extremities. Tone is a very common thing with Cerebral Palsy so anything we can do to keep her active is definitely beneficial.

Addy went to the Pediatrician yesterday. She's 13 pounds 5 ounces and 23 inches. Good news is no more multi-vitamin needed! One less medication she has to receive. Also, we can probably stop her iron next month. We're also going to try to eliminate her midnight feeding by spreading it out over her others. Cross your fingers it works.

Our agenda this weekend consists of going to Auntie Lindsay's family's house for 4th of July to watch the parade and spend her birthday with her. My Mom is going to cook ribs that evening. Saturday we are thinking of going up to Summerfest and then possibly to a co-worker's BBQ.

Happy Birthday to Grandma Jill and Auntie Lindsay!

Hope everyone has a great 4th of July weekend!

1 comment:

Dianne said...

Happy 4th and I hope you have a great day!