Memorial Day

First let me say Happy Memorial Day and thank you to all of our service men and women! I know the day is almost over, but I still want express my appreciation for those who serve our country as well as their families and friends.

I apologize for the sporadic updates over the past few days. Since it is the weekend, there has been less activity (doctors/tests/etc) and my time has been spent keeping our sweet girl happy occupied. Today was a little tougher day for Maia. She did not sleep quite as well last night. I was able to coax a few giggles and smiles out of her this morning, but she was cranky for most of the time.

Between the tube feedings and antibiotics, Maia is having significant diarrhea. Her poor bottom is suffering and she is uncomfortable. It's gotten progressively worse over the past several days in spite of butt cream and barrier paste. Our wonderful nurse Kate has left a message asking their skin care specialist nurse to see Maia tomorrow and she did request a change to formula with fiber in an attempt to thicken up the stools. Doctors are not in favor of an anti-diarrheal at this point. I may have mentioned this yesterday... her stool cultures are negative for infection which is good.

The infectious disease doctors were a little concerned about one of Maia's blood counts this morning. It was elevated which may be related to her antibiotics. This has potential to affect her kidney function so it is being monitored closely.

No change from a neurology standpoint. I don't think surgery to replace the shunt will take place tomorrow since we have not heard anything from the surgeons today. My guess is Wednesday at the earliest. But once that is in place, Maia will be able to mobilize a little more. With the current external drain in place, she really cannot change positions (the level of her head) without the nurses present and adjusting the pressure of her drain.

I am hoping that we will see the occupational therapist tomorrow. Physical therapy will begin working with Maia a little more aggresively as well. Two weeks on her back in bed have no doubt weakened many muscles and she has likely become deconditioned. I have to keep reminding myself that this will not be a "quick" recovery.

I went home for a nap this afternoon while Mark stayed with Maia. Although it was not as hard as the last time, it still was difficult. I kept thinking about how our lives have changed over the past two weeks. It will be a different Maia that comes home from the hospital. Yes, she is still our precious daughter and that has not changed. Her fierce determination and stubborness strength are obvious. But, she will not be the same little girl who got on the bus the morning of May 15. We don't know yet if this illness will have permanent effects. I pray that there will not be. In order to be fair to Maia though, I also want to be realistic. This journey will continue to be a path of learning for all of us and we will support her in whatever way we need to.

Matthew also needs us right now. I know that there will be an adjustment for him as well when we resume our new normal. I love that sweet boy and sure miss him.

Tomorrow, we should know more of the plan for the next few days. I will update in the morning. Please pray for rest for all of us. Maia is finally asleep (10:15pm) after fighting for a couple of hours. I'm headed there as well. Mark and Matthew are home. Mark is supposed to hear from the dentist tomorrow about getting in for his root canal sooner. Although he's been on the antibiotics since Friday, he's still quite uncomfortable and today was not as good as yesterday. Thanks for lifting us up in your prayers!