4 years ago this week, Naomi was diagnosed and a whole new way of life would begin our family. Watching blood counts, sanitizing and washing with antibacterial soap constantly, being afraid of what could harm her because of her weak immune system. We had a new calendar of sorts introduced to our family – before AA, after AA, before transplant, after transplant. It all still seems so surreal. Like it is a story I am seeing happen, but it isn’t because I definitely feel the pain of all we have experienced. It is so difficult to watch someone go through this, to lose dreams, struggle in the things we normally take for granted. I am learning to take NOTHING for granted and count the small but significant blessings along the way.
Last night, Naomi pulled out the 1000 vintage candy puzzle we did in Wisconsin. She begged me to do it with her. So I got a cup of tea and joined her. It was therapeutic- and yes, we finished the whole 1000 piece puzzle in one setting! – but Niamh joined us. Somehow we got on the topic of dr appts and Naomi suggested sarcastically Niamh “go to her appt for her.” Niamh perked up and said she would love to go with Naomi. I told her that since this week is Pentamidine it would be good for Niamh to join Naomi and play a game at that time. Niamh was so excited she ran to tell her Dad that Mom said she could go along this week. I then whispered to Naomi, “Niamh ADORES and you. She WOULD go to your appt FOR you if she could.” Naomi nodded and I think she realized for a second how much Niamh loves her. They are both so special.
Naomi had an appt on Monday this week since her dr started hospital rounds on Tuesday. It through us off a bit. We also had a very busy week around the house with the oven breaking, Aaron having long meetings and activities, school work, etc. If it sounds like “normal” life, well, it pretty much is!
At Naomi’s visit, we had prepared for a possible IVIG infusion since her IgG fell to 515 last week and 500 is her lowest acceptable limit. She had been fighting a cold and had a pretty nasty cough last week. But this week, her IgG went up on its own again for the second consecutive cold/illness. So at 595, she avoided another IVIg infusion. We are so very thankful!
She will have labs done the week of 9/20 and then have her monthly Pentamidine (ALREADY?!?) on 9/27. Then, beginning October, we will go to appointments only every other week! We are so very excited. Her cast comes off 9/20 also. With appointments every 2 weeks, she will have Pentamidine at every other visit. We figured that she will have only 13 visits remaining until her 1 year anniversary.
She had A LOT of labs done this week that will be sent to Wisconsin for processing. They are checking her engraftment levels and such. We are anxious to get those results.
As the week has progressed, her cough is completely gone and she is acting like a very normal child – resisting bedtimes and rolling her eyes when I ask how much water she has been drinking. Still on IV fluids 10 hours per day, she said today that she is going to commit to drinking more fluids to get off the bag. I laughed. I have heard that before.
Her labs this week were absolutely amazing. Platelets 325, Hemoglobin 12.5, ANC 6700. Not only was she fighting the cold but her marrow was like super marrow amping up those WBCs and kicking the illness to the curb. Amazing!
We are due for a photo update if I can get one. Those curls are coming back fast now. 🙂
Naomi’s appt Wednesday was quick and painless. She had labs drawn to check her CBC and CMP. Her IgG dropped a little this week. I thought she had been more moody, tired and seemed to be fighting something. It is hard to be sure sometimes because she hides it well and her resounding strength makes it that only I can tell because Moms just know!
Her ANC was 1700, Hemoglobin 12 and platelets 280. Her doctor here will be contacting Dr. M in Wisconsin to see if spacing appts out every other week is acceptable. That would be LOVELY but at the same time there is security in seeing them every week. I can feel some anxious anticipation in the thought of going 14 days between doctor appts. Eek.
Naomi is doing well with school work; she practices Irish dance at home between classes to perfect new steps by the next class; a weak immune system is definitely slowing her down from what she would rather be doing. I am thankful that where we live there is outdoor space for her to run and explore. It has definitely been a good move for the children. In 2 weeks, she will have her cast removed. We look forward to that day.