I am feeling the need to vent and be brutally honest about where I'm at. Our journey with SMA has not been an easy one but I really try to be optimistic and thankful for what we have the majority of the time (a healthy sassy 2 1/2-year-old that is defying the odds). We have made it through another winter illness free (knock on wood). Although we were hermits, it is more than worth it to escape frequent Dr. visits and hospital stays and not having to see Lily struggle through sickness. But some days SMA rears its ugly head; some days just plain suck. Today was one of those days.
Today we had a routine ortho appointment in Iowa city; it was the only appointment we had but it turned out to be an all day thing. I knew it would be a long day because any appointment/s in Iowa City always are - they are just long and stressful and tiring for everyone especially Lily. An Iowa City day usually means no nap, being messed with by doctors, poked or prodded, and getting up early or getting home late or both. Today wasn't particularly different from any other day but it was just another reminder of how much SMA sucks and how it makes going anywhere so difficult.
We recently got a van a few months ago which makes transporting Lily much more convenient, however, she is getting so big and so long that getting her in the backseat of the van is still a bit cumbersome. We are in the process of getting a ramp installed so we can have Lily in her stroller with all of her equipment and just roll her right in, tie her down and be on our way. However, the ramp is in process like I said, so right now we have to load Lily along with all of her equipment. Then when we get to our destination unload everything and put Lily in her stroller with her BiPAP, cough assist, pulse ox, suction, feeding, and backpack with all of her extra supplies. It takes at least 20 to 30 minutes to get her loaded into the van and situated. We have her laying on a changing pad in the van and then we use a seatbelt harness to strap her in. We put her BiPAP on, then vent her G-tube , start her feeding, put pulse ox on, get her positioned with pillows and blankets, then get a movie started or the iPad rolling to entertain her on the long drive.
I had told her that we were going to be going to the doctor so as soon as we started getting ready to load the van this morning she was upset-crying and desating, heart rate was high and she was stressed. I mean what child really enjoys going to the doctor. But her stress was causing me stress because it was really hard for me to get things ready when she needed more suctioning and more attention because of how upset she was. For those of you that don't know me, I don't like to be late- I like to be on time (which is early), especially when we have doctors appointments. It makes me very anxious when we are running late. So like usual we were running late lol because it just takes so much time to get everything loaded and situated. And now we have another little person (Mr. Ethan) that is joining us on our journey.
Since we don't have the ramp installed yet I sit in the back near Lily & Ethan but in order to get her in the van I have to put the seat down, load her and her stuff, get her all situated then flip the seat back up. It. Takes. Forever. And by the time I am done I am usually sweating and tired and ready to go back home and drink wine and wait....we didn't even leave the driveway. Thankfully my stepmom Lora braved the journey with us today and she drove so I could tend to the kiddos. By the grace of God Ethan slept the whole way after crying for like two minutes. Lily watched part of a movie and then slept the rest of the way. I was able to close my eyes for a little bit and then I had to pump so when I reached back to grab my pump I noticed that Lily's syringe that I had taped on the seat had fallen over and leaked on her and the seat- perfect! A trip to Iowa City usually isn't complete without at least one feeding malfunction.
We got there and got loaded and it was 2:25 (10 minutes past her appointment time) but at least we made it and everyone was in one piece. We got to her ortho appointment and she needed to get x-rays to monitor for scoliosis. We literally had rolled into the hospital and she started crying. She knew where we were at and she didn't like it. Poor girl-she hasn't even been in the hospital except for her G-tube hospitalization, one other illness and routine appointments, but she has a bit of a white coat syndrome. Then of course she had a big blowout and leaked through her pants which I had all over my hand when I was trying to get her on the table for the x-ray. Crap happens right? She got super upset during her x-ray so I put her BiPAP on for the remainder of our time at the hospital.
After her x-ray, we saw her ortho doctor whom is really great and I really like him; he's been there for a long time and he knows what he's doing. However, today he really cranked on Lily's legs. She has been super tight and we stretch her at home but I never give her the time that I want or the time that she needs to really stretch her well so her feet have gotten really tight. He put a lot of pressure on her feet to flex her to a 90° angle and she grew increasingly upset to the point of almost hyperventilating; she cried the whole time- I could tell she was in pain--she desatted and her heart rate was so high, I had to tell him to stop. I trust he knows what he's doing and I know he would never intentionally hurt her but I could tell she was in so much pain it was just hurting my heart to see her go through that. I couldn't even hear what he was saying or what his colleagues were saying because I just saw her face and how upset she was and it made me want to cry. I almost did it right there in the room. I was just thinking f*** you SMA -this is not fair -this is not fair that Lily has to go through this: drs visits, xrays, pokes, pain. She's not able to walk, she's not able to run, she's not able to move her legs like she's supposed to. I was tired. I was stressed. I was emotional, and I hated seen her so uncomfortable. Even after the doctor and the residents left she was upset and still crying. She cried the whole time I got her situated in the van and the second we got home from the minute she laid down in bed she cried. My poor girl. It wasn't even a multiple appt day or a blood draw day but it was almost worse. It was worse cause she continued to be upset. Usually she calms down after the Drs leave and she knows we're leaving. Not today. I wheeled Lily out of the room and met my stepmom who had Ethan and I started to cry. Crying because of Lily's pain. Crying because of SMA and the things it takes away. Crying because of how hard it was to go to a simple Dr.'s appt. I wish I didn't have to think about stretching her or think about splints or X-rays or therapy. I wish her bones, her muscles, her body was strong. It hurts my momma's heart that her body is broken. That it can't do what a 2 year old body should be able to do. When we were discussing afos (splints), the Dr said it was up to us to decide if we wanted to do them or not because she wouldn't walk, but they could help prevent contracture or deformity. I refuse to believe that this girl wont walk someday. i sure hope and pray that she does and I just cant let my mind go to a place where she never gets to experience that. Her body may be broken, but her spirit is strong and fierce. She always comes through smiling and rolling her eyes at us. SMA- you may have tried to win today but tomorrow is a new day.