Millie’s Medical Team
This photo was from Camilla’s stay at the hospital in January 2019, I don’t take any pictures of her during her surgeries/procedures but I did snap a few that weekend because despite everything going on she was so happy.
Camilla has a roster of doctors/therapists that she either sees each week, each month or every few months to check on her progress in a variety of areas. We have moved doctors and therapists along the way but all have been for the better! At 6 months we moved pediatricians more for my sanity then anything. There was so much being thrown at us as new parents in the first 6 months we never got a break nor felt we received the explanations behind all the referrals to see specialists that were being given. We also would receive calls at 7pm from Camilla’s doctor to discuss some additional thoughts she had after our appointment earlier that day, this happened on more than one occasion.
When we were thinking of switching pediatricians we were a little hesitant. In a sense you are ending a relationship, we had been seeing her doctor for the past 6 months and weekly at some points but we knew we needed to move to someone we felt was better for all of us. One of my dear friends gave me great advice, “Never feel bad or apologize for switching doctors. You ultimately have to do what is best for your child and your family and if your gut is telling you to switch you switch.” Looking back it all seems so crazy that we were nervous or felt bad and we’ve since changed a few other doctors with no hesitation. If you are thinking of switching or find yourself in this spot in the future, don’t hesitate for one minute and listen to your gut and parental instincts.
Millie has weekly therapy sessions for physical, occupational and speech all through Riley Children’s Hospital and we absolutely love her therapists! Therapy was another switch we made after seeing her previous therapists for 6 months. There were a few reasons for the switch to a new organization/therapists and Camilla has grown so much with her new therapists, we wish we would have made the switch sooner. All of her therapists take the time to talk to us and see how we are doing as we navigate through everything; it makes all the difference in the world for us that we can talk to them, and even shed some tears about Camilla in a way nobody else really understands. Her therapists have a delicate mix of knowing Millie from both a medical standpoint and a personal one and just able to give unique insight and advice.
Starting from birth Camilla has been going to different specialists to help diagnose and treat a variety of things. At first we were seeing a doctor, if not more, every week but that has slowed down to about every 3 months for check ins. A few things that Camilla has had going on from birth are horrible GERD (acid reflux) and poor/slow weight gain, her eyes would cross in at times (her right eye tends to turn in more), she was falling behind on development milestones and a few other things but these were the major areas. Every doctor had their own tests and follow throughs they wanted to perform to see if they could find an answer to “X” problem; we think most doctors were trying to figure out if things were related to her brain injury or just so happens she also has said condition on top of the injury. I made a quick list of all the specialists Camilla is currently/has seen and all her procedures she has had in a span of about 27 months. Girl has been through the ringer and such a champ about it all! Some of the procedures require anesthesia, she has received anesthesia 4 times so far and more to come in the future with surgeries and scopes to be scheduled.
Doctors/Specialist: Procedures/Tests:
Pediatrician Numerous blood work by various doctors
Ophthalmologist Eye Surgery
Neurologist Brain ultrasound (4 months) & two Brain MRIs (5 months and 2 yrs old)
Endocrinologist Hand X-Ray (see if her body “thinks” it’s the correct age Cardiologist EKG
Gastroenterologist (GI doctor for GERD/spitting up) Endoscopy (two so far and a stomach biopsy)
Dietician Stomach Emptying Scan (involves an x-ray)
ENT Doctor Swallow Study (involves an x-ray)
Therapist (Physical, Occupational, Speech) Feeding Study (involves an x-ray)
Craniologist (to see if she needed a helmet, she did not)
Developmental Pediatrician
We feel like we have a good team around Camilla now but there were and are still some appointments we leave with more questions then we went in with. For awhile it was a lot of I’m not sure what’s causing this but I’m going to refer you to see this doctor…it felt like some weird game show called “What Doctor Will We See Next?”. It was getting very frustrating and at one point we said enough Millie (and ourselves) need a break from all these visits, medicines, procedures…poor girl had been getting stuck with needles and put under a microscope her whole life and she was barely 1! We took a little breather and I think it helped us all regroup and begin again. The appointments have slowed down and she has standing appointments with her Neurologist, GI and Ophthalmologist. In June she started on a new medicine to help with her spitting up, which is only liquids and another head scratcher, and it seems to be the most successful one yet! She’s always had the appetite of a champ but now she can keep down her milk and keep on the pounds. We take all her medicine and doctor’s visits one day or visit at a time but for now things are looking to be on the up swing!
