I finally feel like we have a grip on Demi’s labs and I’m extremely happy and grateful for her hematologist!! This week we gave her an injection Sunday, ran her labs Monday and then again Thursday prior to the next injection. This allowed us to see her high and low! Her high level was a little too high and her low was very low. So the next adjustment is… 3 injections a week instead of 2 and just a little smaller dose. Hopefully this gives Demi a little more consistent neutrophil count and we can cut out the extreme highs and lows.
I also plan to take her somewhere a little closer to draw her labs. That starts Monday! Tuesday she will receive her 4 month vaccines that we missed. That is strategically placed for the day following her injection with two more to follow quickly after! She is doing so well with her toxo meds and giving me no trouble taking them! Huge breakthrough!
Demi is really doing well! Hitting milestone after milestone on her own timeline, of course, but it’s pretty close to what would be expected of a typically developing child! (For anyone who may not understand or missed an explanation from me.. children who have visual impairments of any sort can be a little delayed in some developmental milestones. Also, toxo babies can have some other affects with development that we just haven’t been able to determine with Demi yet. Although, please remember we expect the best results for her and we are pushing for that and praying for that!) She is grabbing her toes now which is huge and it’s an extremely consistent behavior now. She is showing so much physical strength! I’m so proud of her! We celebrated milestones for Beau because I was a worried mom who looked for each one. When Beau was a baby, I checked the charts for milestones often to know exactly what to look for and by what age to expect to see it. I will say that the milestone waiting game is a little different this go round. Each milestone is HUGE and brings a certain amount of reassurance to me. Everyone is different with this and many people would likely tell me not to over analyze…. but if you know anything about me… no way in crap I’m not over analyzing EVERYTHING!! It’s just who I am! No surprise to me that Demi is doing amazing with this! I expect nothing less of her!
So many more big things to come from our warrior! She is teething and she is moody and dramatic! All girl! Somehow I manage to still get some sweet kisses out of my fussy girl and that’s just everything I need!
Beau is loving his new school and playing soccer now! His first game is just around the corner! He is the best big brother and we are so very proud of him!