Updates and updates

 Guardianship: We did go to court for legal guardianship and the judge approved our petition...there you have it folks...we're LEGAL Ha! I still need to get her to SSI to file for disability but time has been not been on our side.

Adult GI: She saw her adult GI for the first time and it was a great visit.  She is scheduled to start her infusions at the adult infusion center come the end of March.

Toe Warts: the warts we had been so aggressively battled on her toes just disappeared.  Craziest thing ever, but really a miracle.  No dermatologist after all.  Whee!

Flu: the flu finally caught up to us from little brother who was home sick about a week and Lillian came down on the Saturday just as he got better.  It has been rough.  We've been dealing with that this week and it has been rough on her.  She still needs frequent treatments but she is sleeping much better.  Again, so grateful to have managed this at home. She's finally up and trying to eat again, which even though she doesn't swallow this girl likes to chew.  She's chomping on sour cream and onion pringles as I type.  

Pulmonary: we do NOT have to move to adult pulmonary at this time which I'm grateful for.  

I am now Lillian's home health aid.  Since she turned 18, I was able to take classes and be state certified to be paid to be her health care worker.  A HUGE BLESSING.

A note about me: I did have surgery on January 31st.  The surgery was not able to be accomplished the "easier" way, so I have been recovering from a very invasive abdominal surgery.  (think of a gutting a deer or dissecting a frog in biology, yes, I'm serious) I spent four days in the hospital and have been slowly, steadily recovering.  I still have lots of restrictions for activity.  I'm still sore and I've discovered muscles in my legs I didn't know existed. I would ask your prayers as I will undergo chemotherapy very soon for a period of three months.  I rest in the sovereign Lord and knowing none of this surprises Him. Am I nervous? Yes.  I'm concerned about my ability to care for children, especially Lillian.  Not to mention maintaining my home. I do have a wonderful village of caring friends and family as well as all you prayer warriors out there.  Keep them coming. 

I'm tired.   😐  This healing and Lillian's sickness have been a double whammy.  I'm grateful we are heading into a warmer season. 

Where shall I begin

 18 brings new and stressful changes.  Today Lillian saw a new GI doctor in the adult med realm.  She will continue treatments just the same but will transition to adult infusion center.   I've been locked out of her mychart because she's 18 and they will NOT unlock it for me until we have proof of legal guardianship.  Our court date is January 29th.  I'm not sure, at this point, how many of her specialists we will transition out of but I'm trying to be prepared for it.  

She's been relatively healthy, although she is struggling with some bowel issues, but it is not a Crohn's flare...the new group wants me to start her on benefiber to see if that helps.  She and I are both at the tail end of an upper respiratory infection, but we've managed here at home.  We can finally get back to church Sunday.  (we moved to the balcony, though and she hates me for it)

Officially, we had her last infusion Wednesday at the Novak center.  Her care will remain in KY. At the infusion she watched the movie FLICKA.  She was crying at the end, but she still enjoyed the movie.  Then we found a DVD of the brady bunch sitcom, and she loved it.  I knew she would.  

I'm not sure if I updated about immunology, but they want to see her again to continue to rule out CVID.

This evening, she got to hold her newest niece who arrived 5 weeks early.  She's such a little peanut and Lillian smiled ear to ear the whole time she held her.  These moments are precious.  

Our little granddaughter Sunny is home and growing.  She is a doll.  She likes to talk, talk, talk.  We got to spend some time with her and big brother on Saturday.  

Life is never without it's surprises and struggles it seems.  I would ask that you continue to hold our girl in your prayers as we brave the flu season.  I would also ask that you keep me in your prayers, though I will not go into detail. All I will say, is surgery is eminent and I'm nervous about it.  My hope is in the Lord, and nothing is a surprise to Him.  If you're in a struggle, try to cling to that because that is what I am doing.  Blessings friends, thanks for praying and stopping by.