Addison Rose Davis is an extremely happy and well tempered child. She is daddy’s little girl and mommy’s sweet angel. She has never met a stranger, and knows how to make anybody feel special. Her smile lights up the room and she loves being the center of attention. She is a very social child who loves to interact with other kids of all ages!
November 2019 Update
Addison Rose Davis is an extremely happy and well tempramented child. She is daddy’s little girl and mommy’s sweet angel. She has so much fun with her sister, Peyton and she absolutely adores her little brother, Jackson. She has never met a stranger, and knows how to make anybody feel special. Her smile lights up the room and she loves being the center of attention. She is a very social child who loves to interact with other kids of all ages!
It has been a year and a half since Addy’s Angels last fundraiser, and so much has changed with Addison since then. Within the last year, Addison and her family moved from Lubbock to Muenster. Along with moving required seeking out a lot of changes. New doctors had to be found, and new places for her therapy. The closest place that can fit her specialized needs is in Sherman, and she goes there twice a week for speech and physical therapies.
Addy is currently three and a half and has gained a little brother. She loves to play on the floor with him and is always ready to let mommy know when “bubba cry.” Her favorite word is “no” and she will let you know exactly what she wants. She also started school in August. She gets to ride the bus (which she loves) over to Callisburg (due to that being the special education campus for her age), where she spends half her day. While there, she gets to socialize with other children her age, as well as getting additional speech, physical and occupational therapies several times a week. Addison has made great strides since starting school, with noticeable improvement in her speech and attempt to put more and more words together. She is still struggling with speech apraxia, requiring more motor planning in order to put her words together.
Addison still struggles greatly with her core strength. She will walk around the house and at school, but only with a walker. She understands that she is not strong enough to attempt independent steps, and this a goal we are still working so hard to reach.
Addison has been required to get X-rays every six months in order to watch for scoliosis. Scoliosis is an issue in children with Prader-Willi Syndrome, so we have been watching as a preventive measure. Her most recent scan was in September, and it was confirmed that she is in the beginning stages of developing scoliosis. We set an appointment with a new orthopedic specialist, and while meeting with him, he discovered that she is also struggling with hip dysplasia as well. She now has to wear a hip brace at night that will “frog” her legs outward, hoping that the cartilage grows around the hip bone into a normal position, otherwise, she will need surgery to correct this issue as she grows older.
Addison has been visiting Dr. Miller, the PWS specialist in Florida, twice a year since she was born. She recently came back from her appointment a few weeks ago. It was a very encouraging appointment, with a great report for Addison at this phase. A few of her medication doses need to be increased to hopefully help her core strength. Dr. Miller was also a strong advocator of getting Addison into horse riding to help her build her core strength. She will continue her daily shots of growth hormone, as she will for the rest of her life.
She has not progressed to the hyperphagia stage of PWS, which is a blessing. She is still, and always will be on a VERY strict diet to help curb the obesity and behavioral issues that can accompany the hunger when it does strike. Our prayers from the day we received her diagnosis was for some medication to help control the insatiable hunger that is bound to strike at some point. Dr. Miller has been endlessly researching different medications, and believes that she is very close in successfully minimizing the hunger aspect. The particular drug therapy she is excited about, not only helped older children with their hunger, but helped their OCD, anxiety and mental fog that are characteristic of PWS. This is a miracle, and the answer to many prayers, but there is still research to be done in regard to this therapy. There are still many other areas of Prader-Willi that can be helped, to hopefully give Addison the best chance of a “normal” life.
Addison, despite her syndrome, speech apraxia, scoliosis, hip dysplasia, and continued low muscle tone, takes everything in stride. She went through a phase where she would pull her hair out in her sleep (an OCD and anxiety symptom) and now sleeps with socks on her hands to help her hair grow back. She willingly holds her hands up, and will then ask for her night brace. She doesn’t know that what is normal for her, is not normal for those around her. Addison is a constant ray of sunshine who has blessed our lives and has been a bright spot in the lives of everybody she meets. We appreciate your generosity in helping the research take steps forward in improving the quality of life for Addison, and the other people who struggle with Prader-Willi Syndrome.On July 15, 5 weeks into her NICU stay, Kaitlyn was at the hospital for a care time when she saw the NICU doctor walk through. She asked him if the final test results were in, but that he needed to talk to Kaitlyn and Zach about them. They knew something was wrong, and Zach came to the hospital. They met in a family room and the doctors handed them a printout for Prader-Willi Syndrome and a brief, general overview of what to expect for Addison’s life.
Addison had a mind of her own from day one! Born June 2, 2016 at 1:52 PM via emergency C-section, she was 2 pounds 11 ounces, and 19 inches long. Throughout pregnancy, she had been measuring small for her gestational age. All of the prenatal diagnostic testings had come back as normal, so they thought she would simply be a small baby.
June 1st started like any other day. Later that day, Kaitlyn started feeling spasms, but at 30 weeks even Braxton Hicks contractions weren’t a thought in her mind. Her doctor was contacted and they had suspicions of bacterial infection, and Kaitlyn was asked to come in after work. At the office, the doctor was already gone for the day, so she met with the nurse practitioner. While discussing the spasms, the nurse mentioned Braxton Hicks, and to go home and rest. If they were still happening after a few hours she should go to labor and delivery and make sure everything was all right. During this discussion, a spasm happened and Kaitlyn made a face and the nurse sent her straight to labor and delivery. Zach met her at the hospital and it was confirmed that contractions had started at only 30 weeks of pregnancy.
The hospital gave Kaitlyn a few shots to stop the contractions and thought she would go home that evening. They continued and Kaitlyn was admitted for overnight observation. They told her she was in full labor; the baby was in birthing position two weeks prior, was breech and surgery would need to be done. They tried to stop the contractions again with there still being 10 weeks left to full term. There was no stopping them. Around 1 PM Kaitlyn was prepped for surgery and taken to the operating room.
From there, things happened fast. From being taken back to Addison being born it was about 15 minutes. She did not make a sound after being born. Kaitlyn and Zach saw her for a brief moment, but they could not hold her, as she was not breathing yet. She was then taken to NICU for more work to be done there.
Diagnosis & NICU
The days after Addison’s birth were a blur. Her body was floppy and she was lethargic. Her lungs were underdeveloped, making her have to be intubated to breathe. She had a hole in her heart due to being so premature. She was also tube fed, only 3 mL every 3 hours. She was hooked to oxygen and heart monitors, and while intubated, she could only be held by one person for an hour a day. Some days she couldn’t be held at all, or for just brief moments because her oxygen levels would begin to fall. She was placed in an incubator to provide a more controlled environment to grow in.
When Kaitlyn was discharged, it was the hardest thing to leave Addy at the hospital. Her care times were every 3 hours, and either one or both parents were there from 8 AM until 10 PM. They could change her diapers and hold her hand through the armholes. Sure, she was 10 weeks premature, but the doctors said she was not hitting milestones like she should. Her severely low muscle tone, failure to thrive, and inability to come off the ventilator was constantly discussed. Her kidneys were under-functioning and she was jaundiced for a few weeks, and was treated with blue light.
When her newborn screen came back, she showed to have severe hypothyroidism, which in infants can lead to her symptoms. Her doctors decided thyroid replacement medication could help her make progress, but genetic testing was still sent to be sure to cover every possibility. A FISH and methylation test were run and at 4 weeks old, the FISH test results came back normal- YAY!!! We were told that the methylation test broke down the chromosomes and looked at pieces more in depth, so there was still a chance something could come back.
On July 15, 5 weeks into her NICU stay, Kaitlyn was at the hospital for a care time when she saw the NICU doctor walk through. She asked him if the final test results were in, but that he needed to talk to Kaitlyn and Zach about them. They knew something was wrong, and Zach came to the hospital. They met in a family room and the doctors handed them a printout for Prader-Willi Syndrome and a brief, general overview of what to expect for Addison’s life.
Meeting Dr. Miller
We were fearful for Addison and spent most of the day crying for our perfect little baby who could not get off the ventilator. We were given contact information for the one other family in Lubbock with a child with PWS and an email for Dr. Miller – the PWS specialist – in Florida.
We reached out to Dr. Miller., and within 10 minutes she emailed us reassuring everything was going to be all right. She gave us an overload of information: things to tell the doctors, supplements and medications to start her on, and to keep her updated on Addison’s progress and make an appointment to see her in Florida as soon as we could. Dr. Miller was a godsend!
We immediately went to the hospital and told the doctors what we wanted to do and they started all the medications recommended. We also met with the other child with PWS that week and were reassured that there could be a level of normalcy in Addison’s future.
At 7 weeks old, she was off the intubation moved, to a high flow nasal cannula, and after a few weeks put on a regular nasal cannula. We worked with the doctors on a plan for bringing Addy home. They wanted her eating on her own, or on a G-tube before discharge. We were against surgery in her premature state, as those with PWS have an increased sensitivity to anesthesia. The doctors finally agreed to show us how to drop an NG tube down her nose and feed her, since she still had no stamina or coordination to suck on a bottle.
On August 18, 2016 – 78 days after being born – Addison came home! She was hooked up to 24-hour oxygen flow, oxygen and heart rate monitors, and a feeding pump. She spent most of her time the next few months sleeping and working with mom and dad to eat from a bottle. We were either at home, therapy, or doctor appointments. She worked hard from day one to continually make progress – and is still working so hard to catch up!