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.  

We're a go...maybe??

 Lillian's scopes have been scheduled for 5/21 pending a blood test result and the approval of pulmonary and cardiology.  That's Dr Lungs and Dr. Heart.  We had a work in appointment with Dr Blood Monday morning at 900am.  He was a new to us provider in the group.  I liked him, he did not rush and took his time with us which I didn't expect.  He also questioned my about her some of her physical issues such as her brachial plexus palsy and her crippled fingers. He decided she should see a rheumatologist.  Yet another specialist. I kind of laugh as I contemplate it.  

By the way, she'll be 18 this year.  We will need to get a lawyer and become her legal guardians.  I'm not sure how that will work considering we don't have money to pay an attorney.  Pray about that would you? It is something we HAVE to do. There isn't an option.  Also, turning 18 makes her a legal adult.  I'm learning that her specialists may all have to transition to adult medicine.  I'm just telling you, all of this is overwhelming.  It is A LOT.  I'm writing about it so I can unravel some of it from my brain.  

By the way, 18!!!  She'll be 18.  I'm grateful.  God is good.  

Dr GYN and Dr GI visits

 Lillian had a visit this week with her GYN dr.  She has missed mutliple appointments for various reasons on their end as well as her being sick.  They have decided to give her depo shots every 3 months to see if that helps reset her body and then space the shots back apart.  If that does not help her they want us to consider an IUD.   Secondarily, she ordered another bone density scan because Depo can affect the bones.  

We saw Dr GI today and he felt she looked good and blood work has been good.  As we left, they gave us a letter giving us the date of her scope.  It is May 21.  Please pray she is able to get this scope done.  It is well overdue.  Again, due to recent illnesses her pulmonologist has not cleared her for general anesthesia.  

We left and scheduled her follow up appt and went to lunch where she had a total breakdown with huge tears as she questioned me about the procedure.  She also doesn't want to stay in the hospital which is a possibility depending on her other specialists.  This is not typical for her.  I told her not to cry because it wouldn't hurt and then I said, go ahead and cry, it's ok to be afraid.  Heart.  Wrenching.  

He asked us before we left if we had any fun summer plans.  How do I answer that question other than no.? No, we don't.  

In case you're new here, I have been Lillian's primary caregiver her entire life.  I could not return to work after her birth.  By the grace of God and his provision over the years through friends and family we have stayed afloat.  And that is still true today.  

That's the update this week.  Please pray for her to stay healthy.