Pulmonary, Infusion, Endocrinology, and warts, OH MY

 It has been a busy couple of weeks. Lillian followed up with two specialist and also had her infusion.  That's a lot of trips to KY, y'all.   Pulmonary added zyrtec to her meds as she seems to be struggling since we've had some outside time.  It helped immediately, but unfortunately brought on a rough, long nose bleed on Saturday, so trying to find a balance there.  It's a vicious cycle.  Drainage equals irritation, irritation equals inflammation, inflammation triggers asthma.  Sounds like she has to stay on pulmicort nebs twice a day now to manage her asthma.  Discouraging as it indicates worsening lung function.  

Endo ordered spinal xrays due to worsened DEXA scan results.  No fractures from what I read but I haven't been officially notified by the team.  She wants to see her again in 6 months.  Could not pin her down on her thoughts on giving depo closer together.  

Gynecology won't write us a script for depo to be given every two months, she wants me to notify her every time the dose is due to see how she's doing.  (super easy and convenient, right?)

Lillian has been dealing with warts on her toes for some time so we are going to need to add another specialist to the list because despite all of the efforts I've tried, they have failed.  

Immunology wants to check her again in 6 months as well, as she didn't respond very well to the prevnar vaccine.  Her IgG is still low as well.

We no longer have a respite care provider.  So there's that.  

Our little Sunny is very close to getting to come home.  Please keep Sunny, Rebecca, Aaron, and Sloan in your prayers.

Immunologist

 Today Lillian saw a new dr for Immunology.  They are going to run some blood work at her next infusion, to check and see if she might have the CVID.  It will likely turn into this coming blood draw on the 18th, and addtional blood draw 8 weeks from then to coinside with her Remicade infusions.  If, they determine she has this, they can start her on IVIG infusions to help build her antibodies.  It would be tricky with the remicade, but she says it can be done.

I'm tired.  TIRED.  It is such a long day driving down and back, home for 30 minutes or so and back to pick up.  And today, I almost got sideswiped by a box truck and a big pick up truck cut me off and almost hit me.  

There are times when I have done her bathroom duties so many times in the day and night, I just grow weary.  I'm grateful, but weary.  Today, for unknown reasons, I was struck with a grief wave that she will never fall in love or get married or have her own family.  It sounds stupid to even write, but it's true.  

In other news, our most recent granddaughter, now 5lbs from 1lb 5 oz, is still hospitalized, but miraculously has no serious complications.  Feedings are the issue, currently.  Our daughter is frustrated and ready to have her whole family home.  I know the feeling.  It's hard for me to watch others suffer.  It is especially hard to watch my children suffer. 

Our dinner calls for me attention.  

Hab. 1:7 The Lord is good, a strong refuge when trouble comes. He is close to those who trust in Him.