I recently got a phone call from an amazing sweet couple that were clients of mine. He left me a message and when I returned it the first thing he did was ask how maverick was. I of course told him all the ins and outs and updates and then said but enough about that. What's up with you guys! I was thinking they were questioning a print or order ect from our last session. He got quiet for a second and said, "our baby died" every part of me froze and started to hurt. Tears flooded my eyes. I felt selfish for not hearing the pain in his voice that I clearly recognized in that second. After talking to him and hearing his story, I hung up and just sat in the wegmans parking lot for I don't even know how long watching people in and out with seemingly normal happy lives unable to get his voice out of my mind. I've never heard such pain behind a voice. All the sudden I got angry with myself. Everyday I worry about something with maverick or the girls and now they seemed so unimportant because at least they are HERE. So what if he can't play certain sports or has to lead a life a tad different from others...he's here. I get to hold him and hug him, all of them. It could be so much worse. I'm so guilty of dwelling on the negative things and putting the cart before the horse and I really have made a promise to myself to try and not do that. God won't give me more than I can handle. This I can handle.
To the M family...I don't know if you read this but your in my mind, my heart and my prayers EVERY day. I'm so deeply sorry for your loss. I'm here for anything you need.
Maverick had a good week. He is now an official sitter. Which will add some more grey hairs to my head making sure he doesn't roll and fall onto anything leading to a head bump but I can handle that!
He didn't grow in length again. So he's 1% now. He did gain 10 ozs though. That was awesome!
Last week his platelets were 135,000. We decided to cut out his night time dose altogether. That was about a 40% reduction of meds!! I was prepared for a drop this week in levels and it did. Down to 58,000. His specialist said he was comfortable with that though and we dropped another 25% of the meds!! We go back on July 5th. I'll be really happy with anything above 40,000. That's my wish but if it's lower...that will be ok too because no matter what his number is, He's here and he's happy and he adds so much joy to our family everyday.
HI, Monica Henry pointed me to your blog. We are going through some very similar issues with our little boy. We are currently in Vanderbilt Children's Hospital since Sunday and they can't keep his platelet counts up. Thanks for blogging, it helps to hear that we are not alone
ReplyDeleteI'm so sorry!!! How old is he?? What is his number right now? Is it platelets only?
DeleteWhen he was admitted last Sunday it was below 4k and the red blood cells were also low (they have since come up and seem to have stabilized). We can't seem to keep his platelets up though. He has had platelets 3 times, blood once, IVIG and they started steroids 3 days ago. Friday they were up to their highest of 38k only to drop down to 8k yesterday. They did a bone marrow biopsy and reassure us that it looked good, but they still aren't sure exactly what is going on or how to treat him. How old is your son? My email is adiane79@gmail.com and I'm on facebook - Amy Young.
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