Oh my. It's July! Josie LiNi update . . .

And June flew right by.
Josie has had the central line in place for 6 or so weeks now and we are learning to manage it.

It is definitely more work for Mom and Dad (except that so far we don't have 2 am wake up calls because a Sub Q site fell out) but overall it looks like a good decision. Even though there is more work the stress level for both Josie and us is lower. And her skin is calmed down and starting to heal up. We took a little trip to the dermatologist and got some tips for better management of her tender skin.

Actual travel is just a bit more than we can imagine right now, so we did 4 days vacation about 25 miles away. It was perfect and Josie got to stand in a pool (with Mom right next to her holding the IV pump) and play in the sand at the beach. We went to LegoLand as well, and it was just about perfect for all of us.

Prayer and thoughts please for:

• Healing! for heart and lungs!! - Josie looks and feels so good it is hard to know how she is actually doing on the inside.
• The central line to stay clean and infection free. Summer is tougher because Josie sweats and it gets damp under the bandages. Not good.
• Mom and Dads learning curve. Right now equipment management is pretty time consuming.
• Healing for Josie's poor abused skin too. Right now the Doctors don't think we can do anything about all the scaring she has from using the SubQ to deliver her medication, but I'd like to prove them wrong.
• Wisdom! There is a oral version of the medication we use the IV for - and they are preparing for pediatric trials right now! We are talking and praying about whether Josie would be a good candidate for those trials. It would be an amazing quality of life improvement.

Related request - I am working on teaching Josie to swallow pills. Tough going for her (JJ got it first time), but she has to be able to do that for the drug trial, plus it would make other medication management easier too . . .

And if you please - prayers for Josie's little friend Naya too. She has now been in the hospital 5 months healing from the aftermath of a heart correction that she did not adjust well too.

For more about Naya
My Winding Road

Yea, that's Josie in one of the bottom pics on Sarah and Naya's site

Thanks for all the kind thoughts, prayers and support