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.

Cerebral Palsy

Alexander celebrated his half-year birthday last week.  It's hard to believe that it has been that long since he graced the world with his smiley little face and easy going attitude.  He really is a happy baby and is so easy, so to speak.  He sleeps well, eats fairly well and just laughs and plays with us and all of his toys all day.  Daycare is much better than I could have imagined and I give a lot of credit to Ashley for the care she gives him and the comfort level I instantly had with her.  She just loves the babies she cares for and I have a lot of respect for her.

There is something going on with Alexander though and after several months of hoping it will just work itself out or not exist, it does and it's time to discuss it.  Alexander has been working with Early Intervention Services since he was two weeks old.  It was recommended just because of his size and the birth history.  The first visits went great and we thought he was progressing just fine.  There was an issue with tightness in his left side which has caused a little unevenness in his head, but we'll get that corrected easily with a helmet.  After he worked through that, I thought he would be right back on track.  He works so hard during his sessions with therapists and gives it his best for every appointment.  We have saturated him with occupational therapy and physical therapy, both private and through services provided, and of course Seth and I work with him non-stop at home, but there's still delay.  There is gross motor delay but specifically, there is more delay on his right side.  There is enough to suggest that Alexander may have cerebral palsy.  It is likely mild, but it is there.  We are patiently waiting (9 weeks of waiting) for an appointment at Mayo with a pediatric neurologist to confirm, or deny.  His right hand cannot grasp like his left and he cannot bear weight on his right side like he does on his left.  At this point, he is not rolling over from belly to back, among other delays.

After massive amounts of research and days of crying and crying and crying, I felt ready to face it.  I was hopeful that we would have had an appointment with specialist by now, but either way, I know that he will always have to work harder to to have strength and typical movement on his right side.  I don't know what caused this, other than the lack of oxygen at birth caused by the wrapping of the cord and lack of a doctor being present for his birth, but that's not the focus at this point.  I want him to be given as much support and opportunity as possible in his early little life.

The idea that broke me when I first realized what was happening was the idea that Alexander could be more special needs than Aubrey.  Now that I have processed everything, I don't think that is actually the case, but my heart still breaks for him knowing the challenges that likely lie ahead.  It is difficult to watch him playing or in therapy but he has all of the determination in the world, but just can't accomplish some of the tasks.  You can see that the connection has been made in his mind, but his body just can't do it.  He definitely does not lack the drive though.  He is not easily discouraged and has so much willpower, even at 6 months old.  He will continue at daycare, unless his needs become significant enough that they cannot accommodate.

Seth and I still make plans for Alexander's athletic future as if nothing is standing in his way.  We know that it will take extra support on our side and a heck of a lot of work on his, but we will anticipate that he will enter into hockey practice at age 3.  Aubrey will be in the stands cheering him on and a special little boy with have a special little girl to gain strength and encouragement from.     

Update 7-8-18

After many weeks of waiting, Alexander has appointments scheduled at Mayo the last week of this month and the first week of August.  He will have an MRI and see a pediatric neurologist, along with a host of other specialist.  His appointments are spread out over a week, so Aubrey will be going with us.  My dad, Marsha and John Michael will meet up with us, and they will be able to help with Aubrey while Seth and I are with Alexander.  Seth was luckily able to utilize paternity leave so that he can make the trip with us. Alexander is making progress and is continuing to work with his therapist, but he is still delayed and showing signs of possible CP.  He is also being fitted for a helmet this week.  His little head is still protruding on the right side.  Hopefully he is only in the helmet for around 4 months and ends up with a little round noggin.  He has a busy few weeks ahead but hopefully have answers to help us make the best decisions for him. 

Aubrey, Alexander and 1200 Miles

This weekend we made our first of many trips to Minneapolis to see Aubrey's neurologist.  This was a new trip for us as the neurologist had moved from Sanford in Fargo to Minnesota Epilepsy Group in Saint Paul.  We had pushed it out and begged for refills without appointments for long enough and my pregnancy and a new baby could no longer be used as an excuse for not being able to travel.  Usually we love to travel but, honestly, a ten hour car trip with a 4 month old and Aubrey during winter.... probably not the type travel I long for.  We broke it up by staying in Fargo on the way down and in Grand Forks on the way back, so that did ease the pain a little.  We started out a little late in the day because Seth worked the night before and I had clients that I really needed to see in the morning.  Everything was going pretty smoothly until a little over 3 hours in.  We stopped at a Dairy Queen for a little ice cream treat.  I got Alexander out to change and feed him and he vomited everywhere.  All over me, all over him, lots and lots of puke.  Ice cream? No thanks.  Aubrey was shuffled from the front seat to the back and front and back while we cleaned up, changed clothes and started all over with the changing and feeding.  Keep in mind that at this point Aubrey hasn't worn pants in months, so we are dragging her in and out in shorts and it's around 10 degrees.  Perfect parenting.  Whatever, we get everybody in and settled, find a trash to throw all of the hazmat in and keep going to Fargo.  We made it there without further incident and both kids had passed out by the time we got there.  The next morning we got up fairly early and headed to the Cities.  I had to move from the front seat to back a lot to keep Alexander content but otherwise that was a fairly easy drive.  We stopped to see Seth's cousin, Lindsay, as soon as we got to town, which was a nice break and Aubrey got to chase some cats around.  Then we made to to the hotel and settled in.  I wanted to take Alexander swimming for the first time ever with Aubrey so we all got dressed and went down to the pool. Holy hell, there must have been 50 screaming, wild kids in that pool.  He got in for like 30 seconds and we called it quits.  Even Aubrey and Seth cut it short and Aubrey was glad to get out of there.

Sunday morning we headed to the Science Museum, which was awesome.  Aubrey was so engaged and seemed to really take interest in a lot of the interactive exhibits.  That was a nice treat for everyone.  We stayed for a few hours and it was a nice place to take her.  I didn't dare take my phone out to take any pictures because I definitely did not want to ruin the vibe by letting her catch a glimpse of a phone. We grabbed a bite to eat and then caught the shuttle to the Mall of America for Aubrey to push her limits on the rides.  Again, screaming, wild kids everywhere.  Two hours and only four rides later, Aubrey was over it.  She definitely loved the rides that she did get to go on but the lines were just too long for her and Alexander was way too over stimulated - even though he did catch a quick break when he and I snuck off to Baby Gap quick.  We caught a cab back, ran a few errands and called it a night.

We decided that Aubrey really needed to get some time on some rides, so we made another trip back to the Mall before her appointment Monday morning.  We were the first in line and she was able to flip, twist and roller coaster her little heart out.

By the time we got to the doctor, she was exhausted.  She cried or at was at least on the verge of tears for the entire appointment.  The doctor was great, as usual.  She made a few adjustments to the seizure meds and the sleep meds.  She warned us that she is uncomfortable increasing the sleep meds anymore though and Aubrey will need a sleep study before any additional changes are made.  Sounds easy enough but I already know that attaching 1000 wires to Aubrey and then thinking she will go to sleep, without meds, is absolutely not going to happen.  I'll deal with that when the time comes though.  First, we need to have her tonsils out and see if that improves anything and then she will do a sleep study in Minneapolis.  We are already following up with an ENT in Fargo because Aubrey has had so many sore throats this year and refuses to eat, which turns into quite the ordeal. Anyway, we will follow up with all of those appointments and see neurology again in 6 months.

Okay, so back in the car and headed home.  We make it to Grand Forks, which is about a 5 hour drive, and call it a night.  We get to the room and Alexander just loses it.  Poor little guy is just beat.  Both kids pass out and all seems well.  The sleeping arrangement for the whole trip was Aubrey and Seth in one bed and Alexander and I in the other.  With the long days, and swimming and extra activities, Aubrey had been sleeping all night, but Alexander was sleeping so much in the car that he was up several times during the night.  I suggested to Seth that we should switch for the night so I can sleep and that I'll drive the next day.  I know in my mind that the doc has just increased her sleep meds and I should be guaranteed to get some actual deep sleep.  He takes me up on the offer and I'm excited to not make bottles all night.  Sucker, sucker, sucker.  4:00 a.m. and Aubrey is laughing her head off at nothing and rolling herself up in the sheets.  Why did I rock the boat.  At 5:00, I set her up in the living room with a blanket and cartoons.  At 5:30, she's back in bed with me being a human burrito in the sheets.  It's hard not to laugh at her because it's nice to see her so happy and entertaining herself.  She would never have so much fun playing by herself at any other time of the day.  Then Alexander gets up and I know playtime is over and we might as well get ready to go.  6:30, Aubrey passes out.  Oh no sweetheart, not now. Then there it was, that moment that always hits me when I'm so tired and I just want her to comply, the moment when I have to help my 8 year old hold a glass of milk and slowly bring it to her mouth so that she can take a drink to wash down medications to keep her brain from seizing something like twenty times an hour and medications to help her control the anxiety that comes with the frustration of not being able to speak which leads to biting herself, sometimes until she bleeds. Yeah I can hold this glass of milk and yeah I'll be tired doing it, yeah I'll drive us home and yeah I'll still be tired tomorrow, but I'll do it again and again for these distant appointments because I still have to hold that milk for her, so I know she needs all of the help we can find her.

We head for home and she sleeps for 2 hours on the road.  Made it home with no issues other than Alexander is still coming down from an eventful weekend and maybe a little too much to take in for such a small chap.

Back to school and daycare tomorrow and then two days out for Spring Break.  I would say that for our first family trip, it was a good, but there is still a learning curve there with having two kids now.  We will get plenty of practice with all of Aubrey's upcoming appointments though.         

How is that new baby, how is Aubrey doing with him?

Alexander will be 3 months old next week.  He has made it this far and has only been bitten once, his leg tugged on pretty hard once and a few little pats to the face.  I'd say, so far so good.  Aubrey is beginning to settle into the idea of having him around.  She has realized that she still has our attention and honestly, it's probably better than having a tired, pregnant mommy all of the time.  I've gotten my footing with having both of them at the same time and have learned to prioritize their needs in an instant.  If Alexander is vomiting everywhere and at the same time Aubrey is having a freak out and biting herself, it's easy enough for me to decide which one actually needs immediate attention and not feel like I'm a neglectful mother.  Situations like that did take me a few weeks to get control of though.  When Seth first went back to work, I thought that this situation was going to be impossible.  I was completely on edge and pretty much thought I'd gotten in over my head.  Now, twelve weeks in and I'm finding time to make phone calls and cook dinner again. 

I still don't have the mix of work and baby quite figured out, but that's my next goal.  Liz has been so flexible and we've even pulled an overnight from 7pm - 8 am to get stuff done while Seth and my mom could be home with the kids.  Alexander does have a nice little setup in the office but he's too curious to relax and sleep there so it's impossible to work while he's there with me, so I've been winging it and doing a little bit here and there to try to keep up.

My biggest concern was always how the nights would go when Seth is on nights.  We have found a pretty simple solution... let Aubrey take our bed.  There seems to be something very comforting to her about sleeping in our room, instead of hers.  I've taken up quarters in her room almost exclusively.  When Seth is home, he just sleeps in our room with her.  Probably not an ideal situation, but it is working for now and keeps Aubrey from being up all hours of the night.  Being up with a baby during the night is hard, being up with an autistic 8 year during the night is hard, doing both at the same time, chaos.

I've been trying to get Aubrey to engage in some playful activities with Alexander and she will participate a little.  She seems to realize that we are doing it to entertain him, but I don't think she'll be too interested in that until he gives her some sort of responses like laughing or asking for it again.  That will all come soon enough though. 

Aubrey has an appointment to see her neurologist in Minneapolis on March 5, so that will be our first trip with both of them.  It's about a 10 hour drive, that should get fairly interesting after about 30 minutes in the car.  Hopefully, we aren't ready to stop by the time we get to Minot and catch a flight instead.  haha.

Casey

This week I was faced with the news that another dear friend had taken his own life.  It came via text from his old girlfriend.  As soon as I got the text I knew she was going to tell me he was gone.  What I didn't expect is that she was going to tell me that he took his own life.  I even wrote back "are you sure?"  It didn't seem possible to me.  I had talked to him on Monday and this was Thursday morning.  I should have realized something was wrong since I hadn't received 100 Snaps from him since Monday, but I just didn't think of it.  How could things have turned so dark so soon.  Casey liked to consider himself one of my biggest fans in life.  Always trying to be supportive of my goals, always offering compliments to my achievements, just always a good friend.  He was so happy that Alexander was healthy and doing well.  He was checking in on me often and needed to know that I was okay.  He cared so much for others, but didn't care enough about himself.  He loved to read my blogs and always encouraged me to write a book.  I wonder what he would think about me having to write a post about his death.  I wish it weren't the case, but it is.

This is now the third close friend that I have had take their own life.  Danielle, Russ and Casey.  All three broke my heart but when I think of how heartbroken they must have been in those last moments, I know mine pales in comparison.  I wish I could take it back for each of them, but I can't.  I wish I had somehow intervened but I didn't.  I have a very small group of friends that I consider close friends and it has been cut nearly in half by suicide.  I could write about how you should seek help if you are contemplating suicide or how there's help available if you are feeling low, but I feel like everyone knows that.  What I want my message to be is, take a minute to consider how people feel after you take your own life.  Take a second to realize that you may be hurting, but imagine how your mother is going to feel when she gets that call.  If I have any other friends going down that dark road, seek help and don't leave us all here with regrets and sadness.

If Casey had considered that I would spend nights rocking Alexander and sobbing over the fact that he is gone, would he want to do that to me, absolutely not.  If he had considered the amount of strength his mother would have to muster to sort through his personal affairs, would he want to place that on her, I'd like to think not.  Maybe you cannot think through those processes though when your mind is made up that you do not want to live, maybe none of that comes to mind.  Take the time to know it now though.  Take the time to realize how you impact others.

Everyone will have their stories of Casey.  How he was the life of the party, how much fun he was and so outgoing.  People will think about how they first met or their last encounter.  I will think of the countless articles he sent on cures or new research on autism.  I will think of how he loved to hear about trials or other interesting work I was doing.  I will think of how he needed to know how I was adjusting to having a new baby how he recognized my joy.  He cared so much about so many things in my life but failed to realize how equally important his own was.  If I could go back, I would be sure to tell him that.  I would tell him that no matter what someone throws at him, we could find a way to fight it or mitigate the damages.  I would tell him that when his son is older he will be able to make his own decisions and to hold out just a few more years and see if it turns around.  I would tell him that he cannot leave us because we will all be lost without him.  It's too late for all of that now though.  So, instead, I will travel to Little Rock on Wednesday to attend his funeral on Thursday.  I will pay my last respects to another dear friend who left us too soon.  I will cry my eyes out and search for some sort of closure.  I hope that you were able to find peace Casey and I now hope you know that I will miss you forever and always.

Update: Studies show that an average of 20 veterans commit suicide each day. Mission 22 is an organization that helps fund groundbreaking treatment for Veterans with traumatic brain injury and post traumatic stress. During Casey’s funeral, his mother Barbara showed amazing strength and courage by speaking in support of the Mission 22 organization. Her son’s life could have been saved by receiving the type treatment this organization funds. I, along with many others, have donated in memory of Casey Ham. Please take time to do the same.