2.27.16 Birthday #7

Yesterday Aimee turned 7 years old. She had a perfect Aimee type of day. She listened to music, got a pedicure, played with balloons and jingle bells, had a smidgen of frosting, snuggled and gave kisses, tried out chocolate toothpaste (!!!), played with a new bug bracelet, and just enjoyed peace at home. 


Happy birthday beloved star! 

2.25.16 My 7th Birthday

My first best friend was there. I wore a big floppy sunhat that belonged to my mom and a pink dress with white kittens on it. Someone gave me bubble bath and lotion, which is was bordering on embarrassing at that age. My birthday was on a Wednesday, which meant I got to be baptised at church during the evening service. My parents took me out to breakfast and I ordered a gingerbread man pancake. I got my ears pierced and my own bedroom. 

It was a big year. The year I had been waiting for my whole life. Dreams come true at 7. Dreams are wished for, imagined in all their perfect fairytale glory at 7. 

It breaks my heart to think of Aimee's birthday tomorrow. There will be no favorite birthday meal, no little girl dreams to smile over. It is difficult to know how to celebrate her sufficiently in a way she would enjoy. No idea what Aimee is dreaming of in her last night as a 6 year old. A few more hours and the clock will keep ticking forward to 7 on the beautiful life of a patient, joyful, truly sincere girl. 

2.24.16 Appointment Day

Run down of our appointment day.

We met with a new Neurologist, establishing a new relationship. This was an extremely thourough appt with a doctor who wants to solve Aimee's puzzle. She was like many a new specialist that sees Aimee, full of new ideas and enthusiasm to be the one who saves the day. She wants testing for mitochondrial disorders, muscle testing, metabolic testing, updated genetic testing, new bloodwork, a new EKG. Sound familiar? Yes, we have done all of that, but some of it has been 5 years(?!?) and there is new information, more specific tests available. We will go back in to see genetics and follow her requests, cause afterall... We still don't know. 

We are also adjusting her seizure meds to keep up with growth. Nothing dramatic. Ths doctor called Aimee fragile and doesn't want to tinker with too much change at a time. 

Next, we met with her Orthopedic Doctor who originally treated her clubfeet. He was very pleased with her surgery results, though a little less assuring that she will never have to have hip surgery again. Well, we know she will have to have a short follow up surgery this fall. He is concerned that her scoliosis is progressive and quite severe already. As he put it, "the spine drives the pelvis". He said they can't fuse the spine so young, but ideally you would do it first, because it is the strong force and could even correct the pelvis. We'll see what type of plan the surgeon recommends in a few weeks. 

We now are adding back in night time braces again per his recommendation. 

Lastly, we has an updated EKG done at the Heart Center, which was quite simple, but did make for an altogether tiring day. Particularly hard for Aimee, who hasn't spent such a long time in her chair since surgery. 

Monday we met with Aimee's IEP team at school (teacher, OT/PT, SLP, EA, Psychiatrist, nurse). Making a plan for getting Aimee back to school in a couple of weeks with new goals. Maybe even adding a 3rd half day a week. More details to come. 


2.16.16 Life

Aimee had her brace and cast removed this Thursday following x-rays. Her Orthopedic Surgeon was pleased with her progress so far and will have her come for another set of x-rays 6 weeks from now. 
Aimee was pleased to leave the office without extra restrictions, but we were surprised to quit the brace cold turkey. Honestly, we should have listened to our instincts on this one and brought the brace home to transition gradually. Aimee is having a difficult time. She is very jumpy and so uncomfortable with movement that it is really hard to change diapers, ect. We're trying to transition her out of bed, but it is so slow. Add the discomfort her bulging new hips with the hardware just below her skin and we are having to again relearn how to carry and position her. 

In good news, our recent stay at the hospital allowed us to get an advocate social worker. This means we are in the process of being approved for respite care hours. We had already begun using respite care, training my remarkable niece and paying her with funds from Sparrow Clubs, but this money will only get us through about 6-8 more weeks. Having those 20 hours a week off from primary responsibility has begun to shift things. I am beginning to see life again, beginning to have a bit of identity beyond Aimee's caregiver. I will always be her main caregiver, always be her mom, always be focused on her. But there can be room for just a bit more too. 

Hope germinates in my soul. 

2.2.16 High Becomes Low

Aimee's heart rate is going up and she has a fever. Somehow, never leaving her bed and with no sick visitors, she picked up another bug! :( 

2.2.16

Joy bubbles over the brim of my heart this morning. Last night was the first without a single pain med needed through the night!