Carmen is doing much better. She hasn’t had a fever in 24 hours and seems almost back to her normal. She is still on oxygen and likely will remain on oxygen. This makes going out and about a little more complicated but I would rather carry another piece of equipment than know that Carmen is struggling to breathe. Carmen sounds labored and works her tummy and neck muscles to breathe despite the added oxygen but I don’t think it is quite as hard a struggle.

Please keep the whole Hospice/Private duty nursing dilemma in your prayers. We have a couple of possibilities in the works. We shall see.

As I am writing this, I am holding Carmen. She is such a soft and comfy baby! Lauren is at a friend’s house so I have some just me and Carmen time.

This past Sunday Sarah from Soulumination.org came to our house and took pictures of our family. We have seen a few preview pictures and we are so excited! Sarah was so relaxed and fun and took 500 pictures in 2 hours! Thank you Sarah!

Thank you to Unjoo for the bulgogi! I am so impressed that you remembered that we love bulgogi! Thank you to Lori and Azeb for watching Lauren. Thank you to Karen for the yummy pasta/sausage dish and thank you to Tammy for bringing lunch today. It was great to catch up!

And a big thank you to Janice for the adorable Naartjie outfits! Lauren claimed the orange one and has worn it several times! That works out just fine because the bigger size fits Carmen. I’ll take a picture of the girls in their cute new outfits! Naartjie is my very favorite brand for my girls. Thanks so much!

Carmen is doing better. She is now on Azithromycin and it seems to be helping. Still on oxygen but did not have a fever after starting the new antibiotic today. She seemed uncomfortable today though and I am not sure why.

The verdict is in and our insurance will not cover both Hospice and private duty nursing. For a few days I had hope that the direction we are going would change and we could effectively handle Carmen’s care at home. We want to keep Carmen comfortable and really enjoy our time with her. No offense to doctors but running to one after another is not my idea of fun. I am TIRED. Maybe there is another way to have Hospice without losing our night time nursing. Please keep that thought in your prayers!

I feel totally torn between so many things and I really need to focus on giving Lauren the attention she needs. I have a hard time multitasking (isn’t that usually a “mom” trait? Seems I am missing that gene!) and often push Lauren to the side while trying to focus on whatever medical phone call or visit or treatment I am in the middle of. Tomorrow I am going to plop right down and play Polly Pockets.

It’s been a hard few days and we sure do appreciate all of your prayers.

Big thanks to Rachinee who so kindly picked up Carmen’s antibiotic (and invited the pharmacy employees to Carmen’s birthday party in July!) and entertained Lauren and Morgan for several hours. You have the gift of seeing a need and meeting it! I forgot to tell you that Lauren made an online Winnie the Pooh book and she had to pick a friend’s name to have in the book and she picked Morgan!

Carmen is still sick. She is still on oxygen and having fevers. She had an allergic rash reaction to Ceftin, the new antibiotic, so hopefully we can get another antibiotic tomorrow. We have been able to keep her home and despite everything, she seems comfortable.

Yesterday we met with Hospice. I really hope we are able to get Hospice care for Carmen. We need so much to have more people in our lives who truly understand terminal illness and how to handle Carmen’s care. Hospice would help us manage Carmen’s care at home and cut down on doctor’s visits and hospital stays. As of now, I am running to 2-3 sometimes 4 doctors’ visits per week plus hospital stays every couple of weeks, mostly due to her increasing breathing difficulties. I am getting very weary and this is not the life we want for Carmen. And, this is not the life we want for Lauren. So, we wait to hear if our insurance will approve Hospice care and also allow us to keep Carmen’s night nurses. We know we cannot survive without sleep so the nursing care is imperative for us.

Thank you to everyone who has signed our guestbook!!! Thank you to Tana for watching Carmen and to Azeb and Karen for watching Lauren. And thanks to Monica for coming over “just because”!