I'm constantly reminded of the pain and devastation and heartache and instability of Mito. My little man reminds me, as well as the other little Mito warriors in our group. It's so hard.
My tiny man has had a rougher few days. He's had his cough, and has had some blood sugar instability. Today he ran a fever again (highest we've seen for a few weeks) as well as had some blood sugar drops. He has a bright red rash on his cheeks and has been very sleepy. Yesterday he had a lot of drainage, but today that is gone. Some upper respiratory crackles but nothing down in his lungs. Not sure which way it's going to go but it's definitely been getting progressively worse over the last few weeks. This week we meet with his pulmonologist /sleep study doctor and I'm anxious for that. I'm hoping we can find some relief for the restless leg syndrome and for the breathing issues. His Mito doc AND his endocrinologist don't believe that the growth hormone is causing the increase in issues, BUT his pulmonologist and pediatrician believe that it is. His Mito doc doesn't sugar coat anything and he simply feels it the progression of the disease. I hear docs say that but I struggle so very much to believe it...to grasp it. I'm tired of hearing it. I can't give up and I wish they wouldn't give up. Any way you look at it, this is a major appt and we are ready to get some solutions for the sleeping issues. It's so hard for a kiddo who already has energy issues to struggle so deeply with sleep, it makes the energy ten-folds worse.
We also will be making some phone calls this week to change around a few meds as well as to rework his feeds. He's still swelling quite a bit, and waking up many a morning with a very swollen face. Hoping to get some answers on that as well.
Emily is super busy this week. She's got to be at school early every day to help run the united way fundraiser. It's also spirit week at school and since she's part of student counsel she is actively involved in that as well.
Jace is going to hopefully be meeting with his doc. He again lost a lot of weight this week and we can't go like this much longer.
Ben has his 1st field trip this week to the pumpkin patch. He's excited to get to go.
Ari enjoys every week of school!
Tomorrow is Bob's birthday! We are hoping to have a nice quite family evening at home. We went to the farmers market this last weekend so we have a lot of fresh yummy veggies to make up this week!
Please keep some of our Mito kiddos in your prayers. There are a few in the hospital right now who are really struggling. Please pray for them, their families, and their doctors!!!