So Madilyn and I recently went to Milwaukee for our first 4 day trip all by ourselves. We had our first appointment with Endocrine to track her for possible growth hormone intervention. The doctor and I mutually agreed that this is something that would be years away and will probably never happen. With all of the other medical issues and procedures that she has already been through I don't feel at this point that subjecting her to daily injections just in the hopes of her being 5 feet instead of 4 foot 8 just isn't worth it. They also did a kidney ultrasound and lab work just because they are standard for Turner's Syndrome girls.
We then saw Special Needs Care Coordination, they are my lifeline, my sanity and my sounding board. I would be lost without them and they love Madilyn. They help with coordinating all of her appointments and equipment changes. Our goal is to get everything coordinated so that maybe we will only have to go to Milwaukee once every 3 months next year instead of 11 times like this year............:)
Dr. Ruttum, the pediatric ophthalmologist was next. He is thrilled with Madilyn's vision in her right eye and the glasses are doing their job so we'll see him again next year.
We back-tracked from Milwaukee to Green Bay one day to see the GI doc.......Dr. Gurram walked into the room and was talking and when he saw Madilyn he burst out laughing and said "oh my gosh, she's beautiful, I made her fat!!" He couldn't get over how amazing she looked and how well she is doing. The 3 pounds she gained in the first month after surgery is double what they anticipated so we have now cut back her feeds a little and are working on oral eating too. The progress is slow but it's progress so we'll take it.
Our final appointment (the big one) is Neonatal development. This appointment lasts up to 3 hours and Madilyn is fully evaluated by the nurse, the physical, occupational and speech therapists and then sees Dr. Baer. This appointment is very frustrating for me because they ask questions like "do you think she actually knows who you are?" This question hurts. Of course they very quickly realize that she most definitely knows who I am and that she's capable of incredible things they never thought she'd do. Dr. Baer informed me that according to all medical reasoning Madilyn should basically stay an infant, she should not be able to do any of the things she does much less be making even more progress. She asked me if it was my goal in life to defy hundreds of years of medical research and history....this made me laugh. I told her that was just bonus cause my only mission in life is to give Madilyn every chance possible at an incredible life.
I knew the moment she came out breathing on her own that she would defy everything. My sister thought I was a lunatic because the medical facts spoke the complete opposite of my heart. Madilyn is here to teach us all something and she proves that every single day. At least three times in the past year we have heard that she should not be alive or that she should not have survived the illness she had, but she does and she's happy and healthy now and thriving in every way possible.
This very week one year ago was the absolute hardest week of my life......it was the week that I confronted my daughter's drug addiction head on and chose to go to court to take custody of Madilyn away from her parents. I was adamant for a very long time that we would always be grandma and grandpa and we are but we also answer to momma and dada too...........September 14th is a day that we have chosen to turn into a celebration rather than a sad day. We are going to celebrate Chosen Day every September 14th. It is the day that we chose to put Madilyn first. It is the day we chose to make a better life for her even though we knew it would rip other lives apart. We did what we had to do and have not regretted it for a moment so now we choose to celebrate it.
I have hopes for this next year for much progress and healing for my heart and my family. I hope to eventually begin the healing process and learn to communicate with my daughter again. I hope for no life threatening ordeals and fewer trips to Milwaukee...........I am going to embrace the calm (and chaos) that is my life now and love every moment of it.
