Life with Aubrey
Sunday, September 27, 2020
Why Law School, Why Now.
Friday, June 12, 2020
Papa Ray
Friday, April 10, 2020
When Everything is Not Enough
Tuesday was a typical day for us. Aubrey completed two sessions with her paraprofessional, sat through speech, and worked in the living room via Skype with her physical therapist. Seth was on day shift and it was his last day. Those are always the best days, but even more so lately. We were eating dinner and Aubrey resisted sitting with us for more than 2 minutes, not unusual. She escaped to her tent in the living room, which is her new favorite hang out. Seth took her dinner to her and nothing was out of the ordinary. He made a loop around the table to grab his drink and then went back to her tent. She was seizing. Eyes rolled back, unconscious, muscle spasms, seizing. He called me over and I went into reaction mode. I grabbed my phone and called 911, while grabbing her emergency rescue medication. I ran back to her and held her head while talking to the 911 operator. Then it stopped. I cancelled the emergency response, Seth pulled her out of her tent and put her on the couch, I called my mom to come to be with Alexander and we took Aubrey to the ER. The seizure lasted for about 90 seconds. I wanted to have labs drawn immediately so that we knew if there was any obvious cause. The thing with Aubrey is that we don't know how she feels. I don't know if her head hurts, if she's seeing double, I don't know if she feels nauseous or if she had any indications leading up to the seizure. I just have to guess. I have to do everything possible and hope that some of it helps.
The days after her seizure have been tough. She was tired most of the day for two days afterward, but couldn't sleep for more than two hours at a time. I cancelled school sessions and let her rest. She finally felt better yesterday so I took her to the park to rider her PowerWheels. Today we went to the farm and she played on her swing and rode the Ranger. Her neurologist will have to wait on all of her labs results but the initial tests showed nothing striking. At this point, there is nothing different that we can or should have done, it was just a breakthrough seizure.
So, here's the thing, I have spent 30 days living in fear. Fear that someone would carry a novel virus to Divide County and wreak havoc on Aubrey. My fear was that her epilepsy was vulnerable, that she was vulnerable. After the image of her seizing was burned into my brain and we once again experienced a critical health scare, I overcame the focused fear of Coronavirus. Aubrey will always be more susceptible to viruses. She is always going to be higher risk for whatever is going around. While, of course, I wouldn't put her on a crowded New York subway car at the moment, I am going to let her go to therapy next week. It doesn't matter how committed I am to ensuring she completes her reading assignments, she still has epilepsy. Once the world returns to normal and her classmates return to regular birthday parties and not virtual ones, Aubrey will still be happy to eat supper in her tent, because she is still autistic. Just like everyone, I hope this soon passes, but even when it does, my worst fears will sometimes be a reality and if anything, I realize that is not something I can change. It doesn't change with online school or keeping my kids out of the grocery store. I could do everything, but it would not be enough.
Tuesday, April 9, 2019
Sometimes life is not fair
Saturday, February 2, 2019
The End.
A few months ago I wrote about a difficult day with Aubrey traveling for a doctor appointment in Minneapolis. It was an extremely confusing and horrific day for her and all I could do was try to physically remove her from public as quickly as possible. It was just the two of us traveling and Aubrey weighs 85 pounds, plus we had two bags with. To complicate the situation even more, I was six weeks pregnant. That information was purposefully withheld from everyone other than Seth at the time because I was so early in the pregnancy and I felt there was no need to even discuss it. The real issue for me came on the day that Aubrey and I left Minneapolis and headed back to North Dakota. Aubrey was still was not feeling great and just didn't have the strength to walk independently through the airport. This time I was able to secure a wheelchair instead of carrying her, which quickly became necessary because I miscarried the baby. So there we were, just Aubrey and I, in the middle of the Minneapolis Airport and I'm losing a baby. Talk about a mental overload. I called the doctor's office to schedule an appointment right away the next day, but by then it was pretty much all over. By the time we landed in Minot, my mind was made up. When I visited with the doctor, I was going to tell her my desires to have another child were gone. I was not going to put myself or Aubrey or Seth or now Alexander through this again. As much as I believe it is important to have siblings, I also knew that after my 8th pregnancy, my body and mind were done. I have tried and tried and tried and having a big family is not something I am capable of giving Aubrey. Giving Alexander a typical sibling to grow up with is something I have now realized is also extremely important, but I have also come to the realization that it is just not something I am capable of.
I was unsure of what the doctor would say. I knew my options would be extremely limited because of my blood clotting disorder, but as we went over possibilities, I knew right away that salpinectomy is what I wanted. I wanted to have my tubes completely removed. I wanted this roller coaster ride to come to an end. I have two amazing children, I have devoted my life to their well being and I will just have to find a way to make up for all of the brothers and sisters I cannot give them.
I am looking forward to a life that doesn't include morning sickness, extreme fatigue and countless hours in appointments. I will happily use that time to read books to Aubrey and Alexander, review Spanish lessons for fun with Aubrey, push trucks around with Alexander, continue my education and feel like a normal person. A normal person who goes out to dinner more than they go in for an ultrasound.
Tuesday, January 1, 2019
So Long 2018
Just this time last year, I had a 5 week old baby. Now I have a little boy that zooms trucks around on everything and went to lunch with me yesterday and ate broccoli and pizza. He's growing up in what seems like an instant. Over the past year, Alexander has had us all at the edge of our seats. Does he have CP, did the OB at birth change the course of his life forever, does he need a cranial helmet, is he delayed, is there an underlying genetic disorder, why does he have so many ear infections, is daycare going to work for him, will he require extra care, is he lip tied, why can't he drink from a sippy cup, are we taking him to the right doctors. Well, here is where we are at with all of that - Alexander does not have an neurological abnormalities, his delays remain unexplained in most part, but have also gotten to be much less severe. He does still have some noticeable differences in his right and left side, but nothing near as concerning as it was six months ago. He continues to work with Early Intervention, but I am no longer worried about his long term physical abilities. Around the same time we traveled to Mayo, Alexander was also placed in a cranial helmet to help reshape his head. He had front bossing on the right side and flattening in the back. There was some correction however, I made the decision to take him out of the helmet and hope that he doesn't hate me when his older because he doesn't have a perfectly symmetrical forehead. The drives back and forth to Bismarck (4 hours each way) were becoming unworkable with both kids and the winter weather. There are still some delays but now speech is more of a concern than gross motor. We opted out of additional genetic testing in favor of waiting to see if there is continued progress. A microarray was preformed when I was 11 weeks pregnant and that was normal. Anything beyond that is pretty technical and I just do not think it is necessary at this time. Over the past 7 months though, the ear infections have been almost completely constant. He has been on antibiotics so much that I can't even recall the number of times. He had an appointment with ENT yesterday and is scheduled to have tubes inserted in two weeks. He also had an appointment with a pediatric dentist yesterday to have his, newly discovered, lip tie corrected. I'm not sure how that was missed after multiple signs of it, but it was. I am hopeful that it will make a difference with him being able to drink from anything other than a bottle and possibly improve his speech. Daycare has been working great for him. We have loved his caretakers and he has had all of the socialization and learning opportunities that we had hoped for. I am not expecting any major changes in the path Alexander is currently on over the next year. I know he will keep working hard and making progress and we will continue advocating for his wellbeing. He is just a smiley baby and happy as can be.
Aubrey has had more of a consistent year. She is still thriving in school and loving to play outside all day every day in the Summer. This year she had a new caretaker for Summer and I think Aubrey was smitten. They were able to spend a lot of time in the pool and at the splash pad in between school and therapies. Aubrey continued to ride her favorite horse, Mac, over the summer and work with her great therapist. She also had her tonsils out and has not visited the doctor for a sinus infection/sore throat since then. Probably the most noticeable change in Aubrey this year is that she got a pretty extreme hair cut. Her long curly hair was so unruly and the older she got, the harder it was for me to maintain it over her protests. I'm not sure who is more satisfied with it, me or her. Aubrey got to take 3 trips to Minneapolis this year for various appointments, which means she got to spent a lot of time at Nickelodeon Universe. They have a fantastic program for special needs individuals and was a refreshing experience for Aubrey. No real waiting in lines for rides, which means she almost has zero frustration in the park. It has worked out so well each time. I am currently in the process of converting all of Aubrey's specialist to be doctors at Mayo. We were so impressed with the care that Alexander received and it does make a lot of sense to streamline all of her care and appointments. We were already traveling to St. Paul to see her neurologist a few times a year, so the travel is really no different, just less trips to Fargo. That should mean more time that she has to spend on rollercoasters each year, so it seems like a win, win to me.
Seth and I are doing well and made a little transition when we made the decision to rent a place in town to help with winter travel. We were able to get into one of the townhomes by the hospital and, honestly, I cannot believe it took five years for us to stay in town. It is so convenient and easy to get the kids to school in the mornings and the run errands in the evening or weekends. We are right across the street from the park so Aubrey is still able to spend time outside when it is warm enough. The plan will be to return to the farm in the Spring once seeding begins or at least split the time between the two places. It does work better for child care to have a place in town, but the farm is Aubrey's sanctuary and I could never take her away from that. I also expect Alexander will be driving a combine within a few years, so he will need to be around to see how things work. ;)
We were able to make two trips to Mississippi this year. One in the Summer for Drew's graduation and one the week before Christmas. Drew received his B.S. in Accounting and is now in Law School at Ole Miss. He is doing well and is planning and receiving his Masters of Taxation along with his J.D. Tyler moved to Williston at the end of last year and began working for ISCO in Williston, ND early this year. He is settled into his own place in Williston and is probably the happiest I have ever seen him. My mom is still enjoying her Northern Lights sightings and has made a life for herself here in Crosby. We see her almost every day and she cares for the kids a lot while I am working late or have to travel out of town for work. My dad and Marsha have been through a huge transitional year. As long as everything goes smoothly, they will soon go from foster parents to just parents. I am anxious for J.M. to be my official brother and a part of my immediate family instead of my extended step family. Also, the station that my dad had managed for 40 years also closed this year. Although I am a bit surprised at how well he has taken the change, he seems to be more relaxed and enjoying some time off. For the first time in my life, I actually went to lunch with my father in Holly Springs the last time we were there. He is definitely the hardest worker I know, but my goodness it was time for a break.
No matter what uncertainty may lie ahead with our family, I am happy to say that 2018 turned out to be a great year for us. We rang in the New Year with our two children sleeping soundly in their beds (at least at midnight they were), and watching The Marvelous Mrs. Maisel. Uneventful - the best kind of night we can have.
Saturday, December 8, 2018
Hell Of A Day
To say that Aubrey had a hell of a day is an understatement. She and I were set for a fun weekend in Minneapolis, because she has a routine neurology visit on Monday. I decided to make a weekend of it to give her a break from being stuck inside and some alone time with mommy (we left Seth and Alexander at home). The day started off great! With minimal packing, we each grabbed a backpack and hit the road. We flew out of Minot so it was an easy trip to the airport. We were there in just enough time to breeze through security and grab lunch before we boarded. Aubrey was in a good mood, she seemed so excited as I kept repeating that were going to fly, ride rollercoasters and swim today. Seems like a fairly good day for any 9 year old. She wouldn't eat lunch though. I figured she was just occupied and I brought it on the plane with us. The gate agent was nice enough to upgrade us to the Comfort Plus seats instead of giving us the very rear of the aircraft seats that I had actually purchased. Aubrey still wouldn't eat on the flight though. About 45 min into the flight she started becoming pretty agitated. Seemed odd because it was too early in the day for her to need any meds and the flight was uneventful. She's a seasoned traveler and I didn't expect any issues. During decent she still seemed alright but she was making me hug her and unbuckling her seatbelt constantly. Then it happened. It was like a bomb exploded in her tiny little belly. Vomit was projecting everywhere. Everywhere. There was literally nothing I could do to help anything other than try to position her a little closer to me so that I had more on me than she did on her. I called for the flight attendant but she showed up with napkins. I needed a water hose and a gallon of Dawn. I soaked up as much as I could so that we could hopefully make it to the bathroom and remove our drenched clothes. Good thing we had those backpacks with us and not checked luggage. The backpacks were soaked too though. Seriously, puke on everything. By the time we got into the bathroom, there was about 2 minutes until landing. Of course, there is some understanding with commercial flight attendants that you might spontaneous combust if you aren't in your seat during landing, so there was some serious banging on the bathroom door where I was inside peeling vomit soaked clothes off of my very confused child. Anyway, I thought the flight attendant was helpful, just not too willing to let us be out of our seats for landing. So, we didn't spontaneously combust because we made it back before touchdown, I just had to ride it out with chunks on my pants still. Of course I waited until everyone else took their sweet time in exiting the aircraft and then I had an opportunity to get up and start cleaning shoes and backpacks so that we could at least walk through the airport without leaving a trail.
Finished up on the plane and made it into the airport. The pilot of our flight met me at the gate to get the rundown of my plans and to see how he could assist. I told him if he could help get one of those assistant carts things, I could handle the rest. He got me one pretty quickly and we headed to the transportation section of the airport. Aubrey laid her head on my shoulder the whole way and I prayed she wouldn't get sick on the driver. We exited the cart and attempted to make out way to the lower level and across to the taxi line. One problem, Aubrey was spent. She didn't't have the energy to walk. Alright, I guess this is about to really be interesting. I put her backpack back on her. The one she was demanding to carry just a few hours earlier. Put my jacket on her, since of course hers was sent to the trash, along with her jeans, shirt, my sweater and her book and I picked her up and marched through that airport with her 80 lbs just limp in my arms. I went to find a taxi and thought to myself that the taxi driver better not dare tell me we smell like revisited yogurt and oatmeal.
We arrived at the hotel and made our way inside. Check in is pretty quick until Aubrey has to lie down on the floor and proceed to vomit some more. Now my coat is ready to see a waste basket. I let her finish, in my coat, take the elevator to the room and figure out what is even happening. I'm sure everyone thought something bizarre was happening. So much going on and almost no words between us. Just me saying a few times, very quietly, "It's okay" and "Aubrey, everything is just fine".
She just laid in the bed, showered and is unable to do much other than get sick for the next few hours. I decide that it's most likely a virus and that I'll let it run its course overnight and only take her to a doctor if it continues into tomorrow.
At the moment she is sleeping soundly, with half of her body wedged under me, as usual.
I'm am hopeful that she wakes up and has those rollercoasters on her mind again tomorrow. Actually, I'd be willing to bet that she wakes up ready to go, as if nothing happened today at all. She's never too interested in letting a bad day repeat itself.