October:

October was a good month! Nothing major really happened with Nathan. He did really well health wise. He did quit speaking and babbling though but more on that later. We had a blast at Halloween! The whole family was involved. Mom and Dad went as Princess Aurora aka Sleeping Beauty and Prince Phillip; Oma and Papa went as Queen Leah and King Stefan aka Aurora’s parents; and Nathan went as the dragon! It was adorable and so much fun. 

November:

Transplant Anniversary month! The month started out fine…and then went downhill quickly. Leading up to the Liverversary party, Nathan has his 1 year check up and everything looked phenomenal. They did an ultrasound of his liver and it looked perfect. Nana, Pappy, Uncle Matthew, Aunt Amanda, Aunt Jess, Uncle Matt, Joshua, Caleb, Brantley, and Mason all flew in Friday the 11th for the party on the 12th and we were so happy to have them. Nathan loves playing with his cousins! Aunt Robyn and Uncle Mark, and Aunt Heather and cousin Clint also came to town for the party! The day of the party, Nathan was a little cranky and clingy but we pushed on. The party was amazing and we are so grateful to everyone who came out to celebrate Nathan. Papa made a special video and it was just perfect. Unfortunately, when we got home from the party we discovered Nathan was running a fever. So off to the hospital we went. And because of his port, it was an automatic 48 hour admission. We missed seeing everyone together at church and church showing Nathan’s video. The hospital worked to figure out why Nathan was running a fever and obviously not feeling good. Mark spent Sunday afternoon with his family and took them to the airport Monday morning; Oma stayed in the hospital with me. Of course Nathan had to make things interesting and Monday night as we were getting ready for bed, I laid him down (he was already asleep) to change him when I noticed blood was soaking his gown and diaper. Long story short, one of the connections from the IV pump to his port had somehow broken and because of where it was blood was just flowing. It hadn’t happened very long but it was still terrifying. They had to deaccess his port and then reaccess him to give him additional antibiotics because he’d basically had an open line into his body. Then Tuesday it was decided he needed a unit of blood. The problem: we were leaving for Boston the next day to meet with the pediatric lymphedema specialist and we did not want to miss that. So the team, who did not want us to miss this appointment either, got us discharged late Tuesday after Nathan got the blood. We flew out Wednesday to Boston and met with the doctor Thursday. Dr. Greene was amazing and so helpful. He ordered a test called a lymphesintogram (not sure I’m spelling that right) which has a 96% accuracy of determine if someone has lymphedema. Basically what happens, is a radioactive dye is injected in two spots on each affected limb (so for Nathan the first test would be on the legs and he’d go back 48 hour later for the arms) and special images are taken immediately after injection, 45 minutes after injection, and 2 hours after injection to track the dye. Unfortunately, Boston couldn’t get us scheduled for the test while we were there but Dr. Greene provided us with the protocol to give to Dallas. We spent the weekend in Boston and it was so much fun! Boston is beautiful and such an interesting city. We flew back Sunday and the plan was for my mom to pick us up Sunday night and Monday morning take Nathan and I to his checkup with transplant then on to Arkansas for the week for Thanksgiving. Of course that’s not exactly how it went. Nathan’s liver labs looked great…but his IGG (immunoglobulin- immune system number) was so low it wouldn’t register in the test. Basically Nathan’s immune system was not there so we got admitted again so that Nathan could have IVIG infusions. Thankfully we were able to head to Arkansas Tuesday afternoon and spend thanksgiving with family. It was wonderful. 

December

The lymphesintogram was scheduled for December 12th and Nathan had to go under anesthesia for it. It was weird but they would send the results to Dr. Greene and we would talk with him once he had analyzed them. Mark and his best friend left beginning of December for a trip to Europe. It was something that had been planned for over a year and they were both excited. He had a great time and Nathan and I chilled at home allowing Nathan to recover after an eventful November. Mark got home December 10. And was diagnosed with COVID December 12 and immediately quarantined away from Nathan and I. I started exhibiting symptoms December 16th. Oma and Papa took Nathan to Arkansas in hopes he wouldn’t get it. That’s not our luck. December 18th - Oma and Nathan test positive for COVID. Quarantine party at our house! Of course by this point Mark is fine so we kept him in his sick room away from us. Nathan had a mild case while Oma and I were absolutely miserable. And to make it all better: Papa, Uncle Christian, and Aunt Savannah also got it! Thanks Mark haha. Nathan did end up in the hospital because he started running a fever and even though we knew it was due to COVID, the team wanted to admit him for observation. I was absolutely terrified we would be there for Christmas but thankfully the team saw no reason to keep us for the full 48 hours and we got to go home a little early and be home for Christmas Eve and Christmas Day. Which were fun and exciting! 

January:

Surprisingly January was just busy! We did get to go to Arkansas for a weekend which was wonderful. Nathan was doing great! I mentioned earlier that he had stopped speaking (other than mama) and his team did become concerned. In December he had started saying Dauda (we are fancy over here), uh oh, and Bapa (papa) but that was it. So his team sent a referral for in-home speech therapy. We did have a virtual visit with Dr. Greene about the lymphedema test results. Unfortunately, the test was not done properly and the results were not readable. So Dr. Greene asked us to come to Boston to have the tests performed at Boston Children’s. We are scheduled to go at the end of April. 

February and March:

I’m merging these two because…ugh. This kid. Anyway, February started out great! We started the process for evaluation for speech therapy and things were looking up! We went to Arkansas for the weekend and had a blast as usual. Then two nights after we got home Nathan woke up at 1230 AM and vomited. He then proceeded to vomit every 20-30 minutes until 4 AM. From 4 until 7 he vomited every hour. Despite there being nothing to vomit up. I called his team at 3 because never had this happen! The team said to do clear liquids and we could take him to the pediatrician if he continued vomiting. Not going to lie - I was excited to be told we could see the pediatrician and not go to the hospital. Then he vomited again and that excitement flew out the window. By 7 he seemed to be keeping fluid down better so we let him eat a little bit to take his meds. He then vomited at 830 am and I called the pediatrician. Thankfully they were able to get us in that afternoon. And as I’m sure you can guess - it didn’t go according to plan. Nathan was diagnosed with noro virus and had developed a rash which most people who vomit that much do but they get a rash on their face, neck, and chest. Nathan’s rash was on his arms and legs. The doctor didn’t like it so she sent us to the ER. And at first it seemed they were just going to give him some IV fluids and Zofran and send us home! Then his electrolyte panel came back and it was mega off. So we were admitted. Yay. Nathan needed fluids and IV magnesium plus a special medication for those that have noro and just can’t kick it so they had started all that. The next morning I start feeling nauseous. I get nauseous all the time - I carry Zofran with me because of that - so I ignored it. Until I vomited. Oma made Papa come get me. I officially had noro. Mark came down with it that evening. Y’all don’t ever get noro - it was absolutely awful and I wouldn’t wish it on anyone! Mark was over it in 12 hours. I was miserable for 48. Mark flew to phoenix, Arizona two days later (another planned trip) and I went back to the hospital to let Oma go home. Shout out to the best Oma/Mom in the world. She stayed at the hospital with Nathan by herself for 3 days. I don’t know what we would do without her. Nathan was discharged Monday evening and had to go back Wednesday for labs to check his magnesium again. Wednesday his mag was down again so they wanted to check again Friday. (Mark came home Tuesday) Friday his magnesium was scary low so they readmitted him. Oma and Papa had to go to Arkansas that weekend so Mark stayed home with KK and I stayed with Nathan. They have him several rounds of magnesium and sent us home late Saturday with labs on Monday. Monday the labs were down again but not enough. We were already scheduled for clinic Thursday so they decided to let him wait until then. Monday night we noticed Nathan was puffier than usual. So we watched him more, monitored his salt intake more closely, and did more massage. Thursday his labs were once again really low and his Albumin - component of the blood - was really low so Nathan was admitted again for magnesium infusions and albumin. At this point I had gone back through all of his labs - from when this all started at 6 weeks old to present - and noted all of his protein and albumin levels. There were maybe 10 times that his albumin and/or protein levels have ever been normal. And most of those were after he had an infusion of blood or albumin. Which means, there is something going on where his body cannot maintain a normal protein level, albumin level, or magnesium level without help. More on this later. After receiving numerous rounds of magnesium and a round of albumin and a boatload of diuretics, they finally sent us home on Sunday. His team decided to give his body and us a break and not have him come in for labs for a week. A week later and his labs were once again back down. It was decided that Nathan needed to be on oral magnesium twice a day and Mark, Oma, and I decided to start adding protein powder to Nathan’s milk  and some of his foods. 

April:

When we met with transplant for clinic, several things were discussed. 1) for the first time ever, Nathan’s protein level was normal! Low end of normal but normal. However, I shouldn’t have to give my almost 2 year old protein powder to accomplish this. 2) even with 10 mls of milk of magnesia a day Nathan’s magnesium level was still below normal. However, it was staying consistent where it was and so long as it didn’t drop below 1.2 they wouldn’t worry.  3) Nathan’s albumin level was again below normal. And his team has decided to do monthly albumin infusions to see if it helps with his lymphedema and with his other imbalances. So hopefully we will start that in May. Boston! Boston is seriously beautiful. The procedures went well. The first up was his legs. BCH does not put the kids under anesthesia but keeps them awake and just immobilizes them. Which is a nice way of saying they wrapped Nathan up like a mummy and taped him to the table haha but it worked! The shots were probably the easiest part. The images are with a special MRI/CT/X-ray machine. It was really cool. So like I said images immediately after injection, 45 minutes and then 2 hours. Of course we can’t do anything normal so they needed to do 4 hour scans as well because the fluid did not move out of Nathan’s feet. Tuesday we just hung around Boston until Mark’s friend came to hang out for a bit. It was great to see him and Mark really enjoyed catching up while Nathan went wild at a park. Wednesday the procedure went according to plan! Thursday we met with Dr. Greene and Nathan was officially diagnosed: severe primary lymphedema of the legs and face and mold secondary lymphedema of the arms due to liver disease/transplant. There are two types of lymphedema: primary - born with it - and secondary - caused by something (injury, illness, medication etc). Then there is the severity: mild, moderate, severe. In his legs, the lymph system isn’t working at all, the fluid did not move which makes it severe. In his arms, the fluid moved it was just a little slow. Unfortunately, there is nothing we can do other than what we’ve been doing for a year: lymphatic massage, compression garments, and special wraps. We will go back to Dr. Greene in 2 years. Nathan did finally start speech therapy in April and oh my stars his language is exploding! It is wonderful to see him talking again. They believe he quit speaking due to trauma and a way kids deal is to find and take control of something usually subconsciously - in Nathan’s case, speech. He communicated through other ways but just didn’t speak. But he’s speaking now! He recognizes letters A-E, sometimes N and numbers 1-6, 8 and 9. He knows several colors and of course can tell you what piece of construction equipment he sees. 

May: 

NATHAN TURNED 2! Nathan’s birthday was so much fun! Nana and Pappy came down (thanks Aunt Jess) and of course Uncle Christian and Aunt Savannah and Aunt Heather and cousin Clint!  Nathan had so much fun playing on the playground and with Mitch and Nicole. He may have even given Nicole a kiss 😘. This month he is scheduled to have his first albumin infusion so we are excited for that. And he started swim lessons! The first one was today - he is still on the fence about it haha

Phew okay. I think that was everything. It’s been crazy and just a lot the last 8 months. And now we officially have a diagnosis of lymphedema! Just another facet of this amazing little boy! 

Thanks for sticking with us! I will try to update more frequently I promise. We love all you and appreciate your support and prayers. Love you! #warriornathan