So we went Milwaukee and had 6 appointments in 3 days......they all went great!!! Genetics was absolutely thrilled to see her and how she's growing and progressing. We received a very thorough explanation of her complex X-chromosome abnormality and better understanding..........or at least as much understanding as possible with what comes along with being a "one and only". She is the only person in the world ever to have her chromosome lines so we will continue to pray that she continues to be as amazing as she already is. They don't need to see her again for 2 years!!!!!! Next was the gastric emptying scan for GI as the pediatrician says it's GERD and the GI doc was insistent that it was a digestion problem. The scan took 90 minutes and she was not allowed to eat anything for 8 hours prior. I thought for sure it was a recipe for vomiting with not eating that long prior but the Peanugga must have known how important the test was and completely cooperated and took a nice long nap instead. The test came back the following morning with normal results!! That equates to grandma = 1 and the GI doc = zero!!! We then proceeded to the GI nurse visit for a button change where grandpa got to watch for the first time and I got to change it myself. I was trained to do this in February by general surgery but this time I actually got to do it. Grandpa was completely grossed out but I thought it was pretty cool. Next stop was the Special Needs Care Coordination Clinic where a physician assistant, Doctor and Nurse all evaluated Madilyn and spent almost 2 hours talking to us about what our goals are with Madilyn and the best way to reach those goals. They will help with all of the frustrations with the GI doctor also. Friday, the final day of appointments started bright and early with a visit to Neurosurgery for an office visit to check her shunt and they were happy also with the progress she has made and the shunt in doing it's job nicely so unless a problem arises they don't need to see her for another year. Last was day surgery with Dr. Han for her retina check. They put her under anesthesia for this as the exam can be painful and upsetting. She did awesome as always and Dr. Han was thrilled that everything looks great. The eye exams under anesthesia will now go from 4 months to 5 and if that one looks good it will go to every 6 months and stay that way until she is old enough to tolerate the exam in the office.
All in all in was a hectic but great trip and we even managed to spend an entire afternoon at the zoo where we discovered that the fish are Madilyn's favorite. When grandpa was petting the sting rays she was squealing and if I would've given her the chance I think she would've jumped in the pool with them.
Madilyn has been making awesome progress with sitting and with the new reflux meds tummy time is no longer the issue that it was which makes us all very happy. She is making up to twenty minutes at a time on the tummy wedge reaching for her toys, playing with the light board and looking all over. It feels like huge strides after all the struggles. She is even able to roll onto her tummy and gets up on her knees and uses 1 arm.....as soon as she gets the other arm to cooperate we'll all be in trouble cause little miss busy will be crawling in no time.
Feeding/speech therapy is progressing too. We are finally to a point that we can get her to put stuff in her mouth again and she is starting to talk more and more. She even told some other children at therapy "bye" when we were leaving last week which absolutely thrilled the therapist and grandma.
My only current frustration is the GI doctor, which we are in the process of switching with the help of the Special Needs team. She has gone from everything being fabulous and wanting us to space out home nurse visits/weight checks to insisting Madilyn needs a G/J tube. Mind you, the rate that Madilyn is growing has not changed and the puking has decreased. The GI doctor has never acknowledged Madilyn's reflux so the pediatrician did and bypassed the GI doc with the referral to pediatric surgery. We are thinking that the GI doc ended up with a wounded ego from this and is now being extremely uncooperative. On top of that I argued relentlessly that it was not a digestion problem and she insisted it was which the scan they did proved I was right and not her, hence, wounding her ego even more. I have had multiple other nurses from her own department as well as physician's tell me that there are multiple other options to try and control the reflux and increase weight gain and the Dr just tells me no. She is learning the hard way that "No" is not an acceptable answer for me. So now with the help of the Special Needs team we will switch doctors and hopefully end up with one that feels Madilyn is worth their time and effort.
For better understanding where our frustration comes from the G/J tube goes directly into the intestines and completely bypasses use of the stomach. Madilyn would be attached to a feeding pump 16-20 hours per day. This would cause great problems with physical therapy, mobility and progression. It was explained to me by nurses in the GI department that they did not understand why this was the only option being given because typically a child needs to be regressing and losing weight and only after multiple dietary changes and all other options are exhausted is a G/J tube inserted because they rarely ever come out. Well, Madilyn is doing none of the above, she is thriving and growing and doing fabulous so we will switch doctors and save us all some stress.
Now if the weather would just warm up so we could go camping all would be right with the world....;)
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