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.

18

 An evening spent with family and dearest friends.  Pizza, Cupcakes, presents...JOY!!!! Lunch at Chili's and shopping until you drop with Grandma.

Thank you Lord.

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.  

Rheumatologist Update and other updates

 We had our follow up appointment with the Rheumatologist today.  He had no significant findings that require treatment.  The thought on her joints is that it came on with the Crohn's.  It shouldn't get worse, and it is not likely to be reversed.  (possibly with OT and paraffin therapy with stretching but maybe not) 

He does suspect she might have an additional underlying immune disorder called CVID, common variable immunodeficiency.  It lines up with a lot of her history and there are treatments available, but that will have to wait until September to see them for that.  

I had to go re read my last blog post because so much has happened in just a few short weeks.  She had her appointment with the Urologist and they have ordered a urodynamic study to check the pressures in her bladder.  I'll spare you the details of the procedure, but I will tell you it won't be a pleasant event.  

My second oldest daughter gave birth to our 7th grandchild, a little girl...emergently.  She weighed in at a whopping 1pound 5 oz.  She was life flighted to Riley and on day 3 of birth and remains there in stable condition.  She is a miracle.  Her name is Sunny.  Pray for them all.  Pray for all of us.  This is hard.  

To add to the "excitement" of our lives, our water heater went out Friday night and that is not a cost we were expecting to incur.  

I'm struggling in this season.  I can see an obvious decline in Lillian's health and stamina.  It can be discouraging.  She has been struggling with some type of cold that has required around the clock treatments and she's just starting to come out of that.  

I spent days and many messages and phone calls to get Lillian a new travel nebulizer (which apparently isn't covered by insurance) Her liquid stomach med they want her on isn't covered by insurance.  The professionals who are supposed to help with these things basically throw it back to me when they don't want to make more than one phone call.  I could go on and on and that is just TWO of the issues I've dealt with recently on her behalf. 

 We did have a very dear friend donate the rest of the money for her attorney in regards to her guardianship.  I'm so grateful. I keep telling myself things are going to improve.  If we can just get through some of the next obstacles. 

Transparency: I am not ok.  My heart is heavy.  

When I am weak, He is strong.

Scopes, Rheumatologist, Infusions...

 Lillian finally had her long overdue scopes and it revealed that her Crohn's is in remission.  She did have a few minor issues but overall he was not concerned. Well, mildly concerned, but had no answer to the issue.  She will continue with every 8 week infusions.

She saw a new doctor, a  rheumatologist, and it was a very long appointment.  He had no answers per se, just lots of questions. He did mention some other diseases he wanted to rule out.  He did a very thorough overview of her history.  He ordered some blood tests and about 20 xray films.  It only took them four sticks and 2 additional hours to get all that done. We see him in June again.  I should, by now, be used to going into appointments and coming out a bit overwhelmed.  It's just more.  More to deal with.  More to process, just MORE.  We already have a new a new dr (immunology) added to the list since some of her blood work came back. More.  

We have an upcoming appointment with her urologist.  She'll be delighted that we never got the testing the Nephrologist wanted because it is nearly impossible to collect her first urines of the morning three days in a row and run it to the hospital within the hour. 

Also, there is something weird growing on her big toe and we'll be seeing the regular doctor for that tomorrow.  #winningatmothering (yeah, it's been there a while and we thought it was athlete's foot..but it's not)

She had infusions today which went fine after 3 IV sticks.

She's currently holding a grudge against me because I bought her a dress at goodwill and I bought me a dress at goodwill, she thinks (today) mine is hers.  It's been a great evening. *insert sarcasm*

Prior to all this, I was connected with a woman at the ARC of Jackson County.  It's an advocacy agency for disabled individuals.  Lots of good changes will hopefully be coming our way, but everything is a process and I'm the one doing the leg work to keep things moving.  For the first time in 17+ years, I can finally see that our lives might look a little different. I feel like I have someone in my corner helping me navigate all that is coming.  The agency has connected us to an attorney for the legal guardianship and t we were able to apply to the agency to help cover half the cost.  That, alone, is HUGE.  If that had been the only thing that came of that day, it would have been worth it, but so much more on the horizon.  God willing. Most of all, I hope to have a personal friendship with this woman as our children our similar and walks are too. Meeting someone like us is like catching a life preserver in the ocean.  (to me.  don't get me wrong, we have a lot of very faithful, giving, praying, loving, there for us, friends.)

In other news, one of my daughters is experiencing some very serious complications with her pregnancy.  If you could lift her and our little baby girl to the Lord, we would be so grateful.

Let me tell you, friends...our Lord is faithful.  Transparency...I'm struggling.  I'm just feeling weighed down.  I know the Lord faithfully holds me up.  Life is hard.  This is hard.  God knows, He sees, He hears, He answers.  Keep looking up.