Blakely's Medical Fund
Donation protected
On November 26, 2014 their lives changed forever. Blakely was born a happy 7# 6oz baby. Little did they know their lives would be very different than ever expected. At 3 months old, Blakely came down with what seemed like a nasty cold. Quickly, they found themselves at Children's Hospital for the first of many times to come. RSV and Coronavirus had taken over Blakely's whole body. She was in the ICU for 2 weeks. During this stay she developed a urinary tract infection. After testing, they diagnosed her with Kidney Reflux. She was prescribed daily antibiotics to avoid any more infections. If the reflux does not get better, she will have surgery in her future. Going home for them was almost more exciting than the first time they got to bring her home.
Soon after, it was evident that she had more going on in her little body than any of us knew. A swallow study at 4 months showed that she was aspirating everything that she ate. She had lost a significant amount of weight and was put back in Children's Hospital with Failure to Thrive. She had a feeding tube placed in her nose, for what they thought would be a short amount of time. During that stay is when Doctors informed them that this was much bigger of an issue then they anticipated. Rather than the original 3-4 month time frame for a feeding tube, the Doctor told them they would probably be looking at several years at the least.
Blakely was scheduled to come back a few weeks later to have surgery to have a more permanent feeding tube placed in her stomach. This was also the start of various specialists in her life. She was seen by genetics while in the hospital to determine if there were any genetic disorders. One of the tests they ran was for Cornelia de Lange Syndrome (CDLS). As an update to this piece, all genetics tests have come back normal/negative! Doctors are still researching CDLS as a possible clinical diagnosis, rather than a genetic diagnosis. Updates to come.
After her GTube was placed, she was invited into the Special Care Clinic at Children's Hospital. From here she has had a number of Specialists (Neurologist, Genetics, Ear Nose Throat, Urologist, and many more still to be seen). With the help of a Speech therapist (to help her learn to swallow), an Occupational therapist, and Physical therapist, over the past 4 months, she is making great progress. A typical week for Blakely includes 3 therapy visits, each on a different day, 2 of which are 30 minutes away. She has at least 1 doctor appointment every other week, that could be up to 1 hour away. This chaotic schedule has put a hardship on the entire family. Closing the day care was the best choice to make sure Blakely has the care she needs. While trying to maintain all other pieces of their lives together, Riley is in preschool 3 days a week, and Nate is continuing his career picking up the extra pieces when he can.
At 10 months old she is developing her muscles to help hold her head up on her own as well as roll around on the floor more. She has passed her second Swallow Study for pureed food and honey thick liquids. She has been working hard to start taking food by mouth.
Prayers and thoughts are most appreciated. Over these past 5 months the compounded medical expenses were put on hold, putting Blakely's care at first priority. They would greatly appreciate any help with these medical bills, to help alleviate the additional stress that they have added.
Soon after, it was evident that she had more going on in her little body than any of us knew. A swallow study at 4 months showed that she was aspirating everything that she ate. She had lost a significant amount of weight and was put back in Children's Hospital with Failure to Thrive. She had a feeding tube placed in her nose, for what they thought would be a short amount of time. During that stay is when Doctors informed them that this was much bigger of an issue then they anticipated. Rather than the original 3-4 month time frame for a feeding tube, the Doctor told them they would probably be looking at several years at the least.
Blakely was scheduled to come back a few weeks later to have surgery to have a more permanent feeding tube placed in her stomach. This was also the start of various specialists in her life. She was seen by genetics while in the hospital to determine if there were any genetic disorders. One of the tests they ran was for Cornelia de Lange Syndrome (CDLS). As an update to this piece, all genetics tests have come back normal/negative! Doctors are still researching CDLS as a possible clinical diagnosis, rather than a genetic diagnosis. Updates to come.
After her GTube was placed, she was invited into the Special Care Clinic at Children's Hospital. From here she has had a number of Specialists (Neurologist, Genetics, Ear Nose Throat, Urologist, and many more still to be seen). With the help of a Speech therapist (to help her learn to swallow), an Occupational therapist, and Physical therapist, over the past 4 months, she is making great progress. A typical week for Blakely includes 3 therapy visits, each on a different day, 2 of which are 30 minutes away. She has at least 1 doctor appointment every other week, that could be up to 1 hour away. This chaotic schedule has put a hardship on the entire family. Closing the day care was the best choice to make sure Blakely has the care she needs. While trying to maintain all other pieces of their lives together, Riley is in preschool 3 days a week, and Nate is continuing his career picking up the extra pieces when he can.
At 10 months old she is developing her muscles to help hold her head up on her own as well as roll around on the floor more. She has passed her second Swallow Study for pureed food and honey thick liquids. She has been working hard to start taking food by mouth.
Prayers and thoughts are most appreciated. Over these past 5 months the compounded medical expenses were put on hold, putting Blakely's care at first priority. They would greatly appreciate any help with these medical bills, to help alleviate the additional stress that they have added.
Organiser and beneficiary
Alicia Leighton
Organiser
Broomfield, CO
Amanda Mulholland
Beneficiary