January 28 - Blood Work

Levi did amazing at blood work today!! Not a single peep out of him. He set right down in the chair, held his little arm out for the "nice nurse" and let her stick him. I didn't even really have to hold him still at all. The only peep he even tried to make was when the second nurse decided to try to cover his eyes, he didn't like that, apparently he is like me and wants to watch what is going on.

Levi waiting like a big boy!

Numbers came back this morning at 359. So we are definitely trending down. If this continues at the same trend it looks like we will be doing plasma next week while we are in Lebanon. Which works right in to the 2-3 week cycles. So we shall see how it is next week.

For now Levi is being his normal happy little self. Maybe he will sleep later then 6:30 tomorrow, that'd be swell for Mommy and Daddy!!!

Hope you all had a great day!!

UPDATE: He didn't sleep later then 6:30... in fact he was up at 6:20! I don't know why I set an alarm clock this week, he's been awake before it every day!

It's a good thing he's cute!!

Watching Sophia this morning while I figured out what the plan was as we had no daycare last minute. 

January 25 - Blood Draw

This mornings blood draw didn't go quite as well as Thursday's, but still way better then can be expected from a 19 month old. Since we no longer have to register its just a quick walk into the lab. We put our name on the list and set down to wait. There was only one gentlemen in front of us, so I was looking forward to a short and easy wait. A grandmother, mother, and young girl (4ish) came over from registration and were clearly annoyed, saying quite loudly "I don't understand how some people don't have to register and can cut the line for the lab". I wanted to look at her and say "Thank your lucky stars you aren't here with your child twice a week. If not having to wait for registration is a "perk" he gets, then so be it", but I didn't, I held my tongue. The little girl was allowed to run around in the waiting room, something we do not allow Levi to do, he gave me a few looks and definitely wanted to go join, but I would simply say to him, sit down on your bum like a big boy, and he would sit right back down in the chair. I am so proud of my little guy!!

Being a big boy and sitting in his chair waiting at the lab.

We went in to do blood work and the nurses were quick and efficient, just like last time. We try to make things not so scary and overwhelming for Levi, so on Monday and Thursday mornings we tell Levi we are going to see the "nice nurse" on the way to daycare. He has learned this and will tell us at home, "visit nice nurse?". Today before she drew his blood she was finishing prepping everything and he looks at her and goes "Nice Nurse!!". We all got a good chuckle out of that. The blood draw was quick and he had his minion band-aid and was off to pick a treasure from the treasure chest. Today he picked a blue bath fish to match his purple one from Thursday!!

I got the call around 11:45, Levi's platelets are at 528 today!! Still very good. Lower then Thursday, but still amazing!! :)

Upcoming Plan: Next blood draw is Thursday. Then next week we will be heading to the CHaD for Clinic to see Dr. V. He wants to access Levi's port and see how that goes. If that goes well, then we will begin the process of getting a home nurse for blood draws instead of going to the lab and having to poke the vein in his arm. (The home nurse can access his port, where as a lab tech can not). If that doesn't go well we will continue lab draws and go back a week later to attempt a port draw again.
We have also submitted all of the paperwork to be included in the USS Registry, this is the current research being completed. They will run genetic testing on Levi, Jay, and I for research purposes and will gather all sorts of information to hopefully help us all, and all the other families out there.

January 22 - Blood Draw

I was very worried about this morning's blood draw. By the end of the hospital stay Levi wanted nothing to do with nurses or anyone touching him. He would freak out if a doctor or nurse even walked in the room. I informed the lab tech of this while checking in, and she did AMAZING with Levi. She was quick and efficient, had everything laid out, talked to him, made it fun for him, and even had a minion band aid for when it was done. He never even cried. Was a little upset but no crying. When it was done they let him pick from the treasure chest. He picked a purple bath tub fish. Overall a great lab experience.

Waiting at the lab. 

And to top it off his numbers are 671! No plasma infusion today! We are good to go until Monday. :)

Hospital Stay 1 - Day 5

January 16, 2016 - Day 5

We are going home today!!!

Dr. V came in this morning and told us that his numbers were up and we were good to go home. He had slept all night and the surgery area looked fine. :)

We waited for breakfast and for the nurses to come in to take out his IV and line into the port. Once those were out we were free to go home. Levi walked himself out! Proud and happy to be free. :)

Of course it was snowing, but we didn't care. Took it nice and slow and made it home without an issue. Stopping for Slushies and chicken nuggets for lunch.

On our way home!!!

Once we got home Levi was very happy to see all of his toys and to play. He hit a wall around 2pm and we put him down for his regular nap.

We went out for celebratory ice cream after dinner at Friendlys!

It sure is nice to be home!!! :)

Current Plans:
We are going to do blood work every Thursday and Monday to keep a very close eye on his levels. Currently his port can not be accessed so those are still vein draws. If his platelet count drops below 150 we will be back in Lebanon for Plasma infusions. We are trying to determine a regular schedule for infusions, but need to see what his highs and lows are in the mean time. We are hoping infusions can be every 3 weeks, but they may need to be more often then that. At this point it is still a giant wait and see game!

Hospital Stay 1 - Day 4

January 15, 2016 - Day 4

Surgery Day! Today is going to be a long day. The morning started at 4am with a blood draw. Once again they didn't want to use his IV in case they did something to it, so they determined that they would do a heal stick again. It went AWFUL. Levi Screamed and screamed. Today's nurse was definitely not as good as yesterday's. And then to make matters worse they came back in at 4:45am and told us that the blood had clotted and was no good. The IV team came in and stuck his other foot two times before getting the blood they needed. What a rough rough morning! Thankfully we were able to get Levi to go back to sleep until around 8am.

Lots of distractions throughout the day.

He watched a LOT of TV and videos. 

After 8am the long day started. We were told that surgery was scheduled for 4pm, but that if they were able to get Levi in sooner they were going to. His surgery was considered an add on, but not emergency, so they did not want him to have anything by mouth all day. Have you ever told a 19 month old they can't eat or drink all day?! It was awful! Around 9am they started an IV for the day, it was a very slow drip but did give him some sugar. Although this wasn't going to make him happy or make him feel full, it did help a little with his brain not sending constant signals of feed me. But it did pose the additional problem of being hooked to a line all day. We did the best we could with trying to teach him how to walk while attached to a pole, but well, he's a toddler. The day was filled with lots of movies and TV. Around 12:30 he went down for nap. And I hid in the bathroom and ate two donuts and drank an orange soda. There was no way I was tempting fate of him waking up and seeing me eating.

He finally napped.

At 3:45 they came in and told us the surgery was on and we needed to clear as many of his stuffed animals and blankets off the bed as possible. We assumed that they would be right back in, but we waited and waited. Around 4:30 they came back in, they had had to find where he could go. Due to the fact that he was under precautions for his cold he wasn't allowed to go to the normal child pre-op waiting error.

Eventually they brought us down stairs. Levi enjoyed the ride in the crib! Once we were down there he hated being in the crib. At first I didn't think they would let us hold him, but they did. They would allow one of us to go back to the OR with him until he fell asleep. So I gowned up. Levi gave hugs to daddy, and I lugged him back to the OR. Once we were back there things went pretty quickly. He did not want to let me go, so I actually fully held him this time while he went under. Once he was out, I layed him down, gave him a kiss, and the ushered me out.

Now the waiting begins. Normally I am a great waiter and am calming Jay down, but during surgery it was the other way around. Jay was eating a sandwich and relaxing, and I was a nervous mess. It seemed like FOREVER, but finally our pager went off and Levi was in Recovery. The surgeon came out and talked to us, he said surgery went well, the port went in without a problem, and should last him several years depending on how quick he grows. He said post op care is pretty easy. He could take a bath on Sunday and besides that just don't submerge him until the sterri strips fall off, give tylenol for pain as needed, and nothing else. Seemed pretty easy.

We got back to recovery and Levi was still asleep. He woke up several minutes later and he was MAD. I don't know that I have ever heard Levi scream and scream and scream the way he did as he was coming to. About 30 minutes later he fell back asleep again for about 5 minutes, when he woke up he was better but still angry. We offered him a popsicle and he wanted nothing to do with it. After about another 30 minutes he finally smiled and asked for the popsicle. We gave it to him and he lounged around and ate it. When it was gone, he handed me the stick and said "more". Well no mom is going to resist that and he began eating the second popsicle.

Popsicle Number 1.

At this point they determined he could head back to his room and he went for another ride in his crib.

Popsicle Number 2. And a ride in the crib.

Once we got upstairs he wanted to walk around and we let him. He also asked for a third popsicle. Sure we said. He then ping ponged around the room, eating a bite here and a bite there of everything in site. Goldfish, ice cream, pasta, crackers, apple, granola bar.

At this point it was past his bedtime but we didn't care, we were going to let him stay up. About 9:30 he hit a wall and was done! We put some PJ's on, and put him in his bed. About 30 minutes later he was out cold.

A very long day!! But now he has the port which should help in the future with blood draws and infusions. Hopefully he has a good night and tomorrow brings good news.

Hospital Stay 1 - Day 3

January 14, 2016 - Day 3

The morning started very early. Blood work needed to be done at 4am so that they could get the platelet count back before his MRI which was scheduled for 7:30. If his platelet count was too low they would put off the MRI until plasma could be administered. Due to Levi's age he had to be sedated for the MRI so no food or liquid after midnight. Once again they didn't want to touch his IV for blood work. This nurse chose to get the blood with a heel stick. He hasn't had one of those since he was an infant, so it was interesting to see how he reacted to it. It definitely ticked him off. But they were able to get the 1cc of blood that they needed fairly quickly and Levi rolled over and went back to sleep, so that was nice.

Good Morning!

At 7:20 they came and got us for the MRI. We were able to walk Levi to pain free and were sitting and entertaining him, getting paper work signed and such. Things were moving slower then I anticipated so that was weird. Then we found out why: There had been a scheduling error and Levi's time slot for the MRI was gone. UGH. We were moved to 9:50. Not such a huge deal, but Levi still couldn't eat or drink and was now wide awake, he was definitely angry. We did find out that his platelet count was at 73!! Yay for WAY better numbers.

We went back to the room to wait. Grammie and Grampa came over from the hotel to help with distractions, and we all survived the two hours, but it definitely wasn't fun.

At 9:45 we went back to Pain Free and things moved right along this time. We changed him into a johnny and hospital pants even though he was wearing cotton PJ's so that the MRI technician wouldn't have a problem. Then it was time for him to be sedated. Was the weirdest thing I've ever watched as a parent. He cuddled right up to me as they put the meds into his IV, and suddenly he just got limp against me. We laid him down on the table, gave him a hug and a kiss and left. Now came the waiting part. My parents took us down to the cafe for a late breakfast and to kill some time. But I was definitely watching the clock. They said it would be about 90 minutes. In the end it ended up being almost 2 hours before we were paged back to pain free, and those last 30 minutes were definitely nerve wrenching and constantly staring at the clock and the pager (the same thing you get while waiting for a table at a restaurant).

MRI Time.

We got into Pain Free to pick him up and he was still asleep. They asked us to let him wake up on his own, and said that he had definitely had a rough time with the sedation. His cold was still going strong, and he hadn't been able to cough while sedated so the had to suction out his nose and throat a lot. I felt so bad for him. Once he woke up, we picked him up and snuggled with him, but boy was he ANGRY!! He was just screaming and screaming. We finally got him calmed down enough and they let us take him back to his room. Once he was there he settled down some and fully woke up and the sedation meds wore off, and then he was hungry. Once again, Grammie and Grampa to the rescue. They had gone to Dunkin Donuts on the way over and there were 2 donuts with sprinkles on them!! Levi licked them both and picked all the sprinkles off. He was having a grand ole time.

Waking up from the MRI.

Dr. V came in while Levi was eating his second donut (well frosting and sprinkles) and told us that the MRI had been reviewed and that Levi has had no mini strokes to date! That his MRI is clear and everything looked good. Oh what a relief. This was a fear of ours. When Levi is in the middle of an episode he gets very wobbly on his feet and zig zag walks, and we were worried that something neurological was going on, but it wasn't!! :) yay!!

Donuts are the BEST!

Then it was time for Levi's third plasma infusion. A positive of being sedated for the MRI, was that they were able to move his IV line, from him left foot to his right forearm. So not only could he walk, but he also had full use of his arms. He was definitely very happy about this. :) The third infusion went off with no problems. No fever this time. He slept through part of it and was awake and watched a movie for part of it.

Plasma time.

After his issues with sedation for the MRI we assumed that surgery was off the table for any time soon. While Levi was napping Dr. V came in and talked to us and said that surgery was on for Friday. He and the surgeon had discussed the options and determined that it was the right thing to do. With a head cold/respiratory infection like Levi's your airways can be restricted for up to 6 weeks after you get over it, so if we were going to put off surgery for that then we should wait 6 weeks, and Dr. V doesn't want that, he wants the port put in, so the surgeon agreed that we can go forward with surgery as planned for tomorrow. At this point we have no time set for the surgery.

After nap and infusion Levi is having a grand ole time zooming around the room and is getting into lots of mischief but is also having lots of fun. The rest of the night is spent playing and eating dinner. We attempt to get him to eat a lot as we know he can't have food or drink after midnight again but he doesn't really want food. We end up resorting to a popsicle and some icecream, at least he ate something.

Running Around. 

Popsicle for dinner.

Night Night all. Tomorrow is going to be a long day.

Hospital Stay 1 - Day 2

January 13, 2016 - Day 2

We woke up in the morning fairly late, Levi actually slept in. The nurse said that she would need to do a vitals check every 4 hours. So we were expecting her at 12, 4, and 8, but she didn't show until after 8:30. We were able to sleep through the night so that was nice.

The first struggle of the morning was to get his Levothyroxin for his thyroid. The nurses didn't understand the need for him to have that first thing in the morning as he has to wait an hour to eat after. They said it was scheduled to come up from the pharmacy at 9:30. We put our foot down on that one, and thankfully it came up around 8:45. We distracted him until breakfast.

The nurse then needed to get blood for a CBC to see what the plasma had done yesterday. We assumed this would be easy. They would just draw out of his IV and then flush it, but we quickly learned this wasn't going to be the case. The nurses were so scared of losing his IV that they wouldn't even touch it. So he was poked in the arm. Thankfully she got the vein fairly easily and the blood draw was quick.

Playing with Daddy before he left. 

We decided that today would be a good day for Jay to go home and get a few things and to work for a few hours. So we settled in for a long Mommy and Levi day.

Snack and Cuddle with Mommy.

The doctor came up a little later in the morning and said that Levi's platelet count had gone up to 20. An increase, but not a great one. The plan was to wait and see how his body would do on his own. and do another CBC at dinner time. We settled in for a long day.

Waiting and Seeing involved some playing.

The IV in his foot was really frustrating Levi, so we requested to have it moved. The doctors agreed so they sent up the IV team. They tried his arm and weren't able to get it. :( The IV team asked if any staff from the NICU could come over and try as they are more skilled in tiny veins. A little while later a NICU team came over and attempted in his hand, but they also weren't able to make it work. At this point Levi had had enough, and I said "no more" we will just leave it in his foot and deal with the fact that he can't walk.

Thanks Aunt Martha, Uncle Chris, Makayla, Kennedy, and Kyle! I love the balloon!!

Levi and I were playing and relexaing, watching more Christmas Monkey, and waiting for Grammie and Grampa to come for a visit, when the doctors came back in. Change of plans. They had talked to the specialist in Switzerland. Wait and see was not an option. He needs plasma every day until his numbers are back up. They have already ordered plasma number 2 from the blood bank just waiting for it to come up.

While waiting for the plasma Levi fell asleep. The nurses were amazing and were able to start the plasma without waking him up. At the 15 minute check Levi had spiked a fever. The plasma was immediately stopped until a doctor could come in. The doctor ordered the plasma to be restarted but at a slower infusion level, he wanted Levi to be given tylenol for the fever and to be more closely monitored. We were told that fevers are a common side effect. The body is fighting off the foreign blood and that if there is anything in it that his body doesn't like it can spike a fever. It is normal, needs to be watched, but is not alarming. We were also told that it all depends on the blood and the donor on if he will get a fever or not. So sometimes he will and sometimes he wont. Oh boy, more things to think about.

A nap while he got plasma. 

Dr. V came in while Levi was napping and him and I were able to have a long talk without any interruptions. At this point we are unsure what the future will be for Levi. He is hoping that we will be able to do infusions every 3 weeks and keep him healthy, but those will need to be done at the CHaD so we have to think about that. We also have begun discussing having a port put into his chest to help with IV's and blood draws. And Dr. V is ordering an MRI for tomorrow to see if there have been any brain issues. We also talked about getting a visiting nurse out to the house to take Levi's blood draws. And lastly he is also looking into using HCF or Factor 8 instead of plasma as these are able to be administered by a visiting nurse at home, however would be twice per week instead of every three weeks. However this is an off standard use for those drugs, so he will need to work with our insurance. We were told that Factor 8 costs insurance half a million to a million dollars a year, so if insurance doesn't cover it, that's just not an option for us. (Unless I win the powerball!:) )
Grammie and Grampa arrived!! And Levi woke up! He finally ate lunch (at around 4pm) and boy was he hungry. We talked, played, colored, and cuddled while his plasma finished. They had slowed it down to take approximately 4.5 hours, so was a long afternoon.

The hospital takes there toddler food very seriously. His hot dog was cut up before being put int he bun and brought to us.

The evening went off without a hitch, well except for a sippy cup to the eye, but ya know it happens! We all hung out until bed time. Then Grammie and Grampa headed over to the hotel, and the three of us settled down in our comfy beds again.

Tomorrow is MRI day, so will be an early morning. The nurse says that she needs to draw blood for a CBC at 4am to make sure the MRI can happen. So good night for now!

Hospital Stay 1 - Day 1

January 12, 2016 - Day 1

We got back to the hospital and checked back into clinic. The nurses attempted to get an IV into Levi, a problem that would become a big issue with this trip. They were finally able to get one into his left foot. Which meant that he wasn't able to walk. :( A major issue for a 19 month old. He got very angry that he couldn't play with the toys and stand in the play room anymore. They drew blood and we awaited the results. Dr. V wanted to make sure that the platelet count wasn't an accident (though he didn't think it was). We went and had some lunch and then came back to clinic. His platelet count was 12, we were officially being admitted.

Last meal before being admitted. 

After what seemed like forever they got us a room upstairs and we headed up. Levi had a head cold so we were put under precautions. This meant that any time anyone entered his room they had to have on a gown, mask, and gloves. It also meant that Levi was not allowed to leave his room. This meant he couldn't go to the play room. We settled down for a long stay in a tiny room.

Being a goober in his crib.

Around 6:30 they started his first plasma infusion. We had signed consent, the first of many. What a freaky thing to do as a parent. Knowing that you are helping your kid, but also knowing that you are signing a piece of paper saying there could be major risks involved. The infusion was 200mL of plasma and would take approximately 3 hours. He didn't understand a tube being attached to his foot or what was going on. We put on a movie and he watched for a little while. Thankfully they had a Curious George movie, unthankfully it was the Christmas episode. Oh well Levi loved it. His dinner came and he ate really well, for the first time in several days, maybe his cold was starting to get better.

First Plasma Infusion. Relaxing and Watching some TV. 

At 9:30 his infusion was done, and we settled in for a night of sleep. Levi slept great. I can't say the same for Jay and I, between the emotions, the tiny room, and the super uncomfortable chairs that make into beds that squeak if you so much as blink it was a long COLD night.

Let's see what tomorrow brings.

First USS Doctors Appointment

On Tuesday January 12th we headed to the CHaD for our first doctors appointment with the hematologist post diagnosis. We had no idea what to expect. We went loaded with questions and ready to be given all kinds of information.

Levi walking into Clinic.

We were definitely given lots of information. However the biggest piece of information we were given was "this is rare and I am learning right along with you!" Our hematologist had spent the past week and a half learning as much as he could about Upshaw-Schulman Syndrome. He had had conversations with specialists who are doing research, primarily out of Switzerland. He had talked to multiple doctors within the CHaD system as well as specialists in several other states. The amount of time he must have spent learning about, researching, and having discussions about Levi's case is huge! We are so appreciative of our doctor.

We also learned that is indeed USS. Due to Levi's age it was fairly certain that it was USS and not TTP, however our hematologist had Levi's blood sent to Milwaukee after the University of Cincinnati found the ADAMTS13 to be less then 5%. Milwaukee determined that there is no antibody present which is the cause of TTP which makes his diagnosis 100% sure to be USS. Although we had already suspected this due to his age (currently the youngest documented case of TTP is 9) it was nice to have this conclusive test done.

The hematologist looked at Levi and then we did some blood work before heading on our way home. We discussed that our next steps were really up in the air and that we were still in the finding out information phase and that the doctor would continue finding out everything he could to make a plan. Usually we wait at his office for blood work to come back, but Levi was looking great (very little bruising, fairly healthy except for a normal toddler cold, no fever) so he said there was no reason to keep us waiting and that he would call us that night with the CBC results.

We started the 2 hour drive home. Thankfully about 5 minutes into the drive Levi fell asleep. Jay and I began talking about everything. We realized that we were in for a long road ahead of us. And that it was quite frustrating to be leaving there with not much more information then we came with. All of our questions were answered with "I'm not sure" or "I can't answer that right now" or "who knows what the future will hold".

Levi asleep in the car on the way home,

About an hour into the drive we received a phone call from Dr. V (The Hematologist) he was incredibly apologetic saying he never would have let us leave if he thought Levi's CBC was going to come back off at all, but he really needed us to come back to clinic. Levi's platelet count was 6. :( The lowest number we had ever seen.

We turned around at the next exit and headed back to the CHaD. Not knowing what was in store for us.

Intro and Diagnosis

Hi! My name is Michelle and this blog is primarily about my son, but also includes our families Journey with Upshaw-Schulman Syndrome. This is a rare genetic disorder.

A little about our family. Our family is myself, Michelle, my husband, Jay, and our son Levi. Levi is currently 19 months old and a crazy active toddler. He loves to play with trucks, cars, tractors, go-go sets, little people, baby dolls, kitchens, ride on his truck, and so much more. He loves Winnie the pooh, Curious George, Paw Patrol, Thomas the Train, Elmo, and Mickey Mouse, just to name a few. We also have two cats, Cindy and Jazzy. We live, work, and play in New Hampshire.

This Year's Holiday Photo

On December 31, 2015 we received the diagnosis that Levi had Upshaw-Schulman Syndrome (USS). But our journey begins long before then.

When Levi was an infant we would often notice that he had bruises on his body in odd places. And that he would get a bruise between his eyes that would get brighter and darker at different times and then would almost seem to go away. Like any concerned first time parents, we brought this concern up to his PCP who said that it was just a blood vessel and not to worry about it. We put is off and moved on with our lives. Levi got bigger and started moving around more. At his 12 month well kids visit (May 2015) I brought up his bruising again. At this point he was skooting along everywhere and would often get bruises on his back, legs, and arms, but they seemed to come out of no where, and were slightly alarming. Our PCP again said that it was normal child hood bruising and not to really worry about it, but if we really wanted to she would give us labwork for a CBC (Complete Blood Count). However she said it wasn't high priority and to just do the labs the next time we were doing labwork for his thyroid (Levi has congenital hypo-thyroidism). To make a long story a little shorter, the labwork came back with a platelet count of 46. For a child his age the platelets should be around 195. We got an immediate referral to the Childrens Hospital at Dartmouth Hitchcock (CHaD) to see a pediatric hematologist. We made the two hour drive to see him just 5 days after the original blood draw. While there they repeated the blood draw and his platelet count was normal. At this point it was considered to be a lab error, and we went home feeling all was well.

Fast forward to Thanksgiving week 2015. Levi got a stomach virus (oh fun) and was out of daycare for several days. By Thanksgiving day he was feeling much better and we traveled around to see family. By Friday afternoon Levi was covered in bruises. We joked that he was our spotted son. We tried to keep him from getting into too much mischief, but the bruises just kept coming. We were keeping a careful eye on him and yet it didn't seem to matter, new ones just kept popping up. On Monday I rushed him to a lab for blood work. His platelet count came back at 67. Once again we were referred to the CHaD. After talking to our hematologist we were referred to a nephrologist with a possible diagnosis of Atypical Hemolytic Uremic Syndrome (aHUS). We began to run tests to get a definitive aHUS diagnosis and went home. Over the next few weeks the labs were coming back and non of them were pointing to aHUS. The week before Christmas the nephrologist gave us the choice of running another set of blood work or waiting for the last aHUS test to come back. We decided to move on to the possible next diagnosis and did blood work for a B12 absorption deficiency and for ADAMTS13 issues.

On New Years Eve 2015, our nephrologist called and Levi's ADAMTS13 activity was <5%. A normal range is >60%. We had our diagnosis. Levi has Upshaw-Schulman Syndrome. We were told that we were being transferred back to the hemotologist for primary care and that this was an urgent condition but that we were not in critical need, and we could enjoy the holiday and we'd see doctors the next week.

I went to bed that night knowing that 2016 is going to be a learning year and a lot of things may change. Little did I know just how quickly it would all change.