Infusion day

 Yesterday Lillian had her infusion in KY.  It went smoothly, except for the IV which seems to always be an issue.  We got a nurse we knew and I'm starting to recognize people, which is interesting because this is only the second time we've actually seen their entire faces.  No masks.   We are due to see her GI doctor in two months and make some decisions about her next scopes.  They were not joking when they told us her immune system would be compromised.  I can't remember her being sick so much since she was a little girl.  I don't like it.  She's even gotten to the point that she begs me to take her to the hospital.  Heart.break.ing.  I'm not sure, at this time, how much longer we will continue to have the infusions.  

Matt is doing well, still in cardiac rehab and still not yet working full time.  He struggles with fatigue.  Pretty normal I think.  

After our all day event in KY, we had another BIG even to attend that evening.  Our fourth daughter, Madeline, got married to her long time boyfriend in a small, private family ceremony on her now,  Grandparent-inlaws property.  It was short and sweet which is what they wanted.  Hard to believe I have another son-in-law, though we treated him like family anyway.  We enjoyed getting to meet his parents and grandparents.  I cannot believe I have three married kids.  Lillian was not happy to not be involved in the wedding, but she quickly got over it and enjoyed being there.  

Thank you for continued prayers as we "juggle" a lot of stuff in our lives.  

Here's a little snapshot of last night.

And so it goes

All the "normal" milestones she missed.  I remember being ecstatic when she could lift her pinky finger....or the first time she actually smiled.  I also remember crying because she didn't smile at me first.  My heart believed she didn't see me as her mom, but as her "nurse".   May sound crazy, but hey I'm just giving you the truth as it seemed back in the day.  

There is a friend from church that Lillian identified as "one of her people".  When she does this, we usually don't know why...we don't know the reasons.  So, Sondra has been one of her people for a many years.  She seeks her out to hug her on Sundays.  One Sunday, when Sondra was at the altar, Lillian insisted on going up beside her and knelt and prayed beside her.  This past Sunday, Lillian left our seat, when the preaching started, gathered her things and went to sit by Sondra. A few weeks ago, Sondra sat in the same row as us and Lillian immediately picked up her things and went to sit down beside her.  It was not lost on me, that my "teenager" got up to sit with someone else on Sunday morning.  My heart took joy in it. 

I so appreciate the love our friends pour out on Lillian.  I love that they accept her and continue to try to build relationship with her even though she can be shy, sometimes difficult, and a lot of times difficult to just plain understand her communication.  I appreciate that they don't avoid her. I appreciate that they continue to make efforts to communicate with her.  She doesn't have "typical" friends.  I adore when other kids speak to her (even when she often ignores them) 

So, all that to say, thanks for loving us.  Thanks for loving her.  Thank you for adding joy to my days. You will never know how much I appreciate it.  

How is she doing and GI update

 While Lillian has improved, she is continuing to struggle with feedings and retching.  We are back to only pedialyte and she is still not feeling or acting the best.  We saw her GI doctor today.  He ran blood tests, did an abdominal film, he wants stool studies, and a urinalysis.  The stool samples and UA will have to be done here. 

He ordered meds for abdominal pain, a new stomach medication, and more antinausea meds.  Based on my limited knowledge, it appears her blood tests are fairly normal...but I'm no doctor.  Still waiting for his feedback.  I don't know about the film because their computer system got hacked and so there are issues there.  

There was no discussion about further scopes.  

I was trying really hard not to be tearful, and I was doing well. Then he asked me about something and I said to be honest there's been a lot going on in my house and he said like what.....well, that's when I cracked.  My mom chipped in about Matt's surgery but as most of you know there have been many other stressful issues in the house over the past several months.  

I want her to be well.  That is all.  Unfortunately, the fact that she is medically complex makes things so much more complicated.   

Having answers is hard.  Not having answers is hard.  I'm tired.  It was a long day.  

This could be stress, this could be her period, this could be a Crohn's agitation...this could be kidney/bladder driven.  This could be an intestinal infection brewing. So many questions unanswered.  That is where we are.  

Never ending

 Lillian woke me in the night Saturday, I failed to look at the time, dry heaving.  This continued for the entire night and all thru Sunday up to 11pm Sunday night.  We gave her some Pedialyte thru her feeding pump.  Yes, we still keep a feeding pump on hand for exactly this reason.  I prayed.  I prayed and prayed. 

I keep saying I'm looking forward to and I'm ready for a new season.  A season without sickness. My son was so sick this past Monday, Tuesday, and Wednesday, he had to stay home from school...all sinus driven.  He was miserable and could NOT stop coughing.  

Well, guess what?  I'm thinking that is just not my season, YET.  I'm struggling NOT to struggle.  It almost makes me laugh...you know, the maniacal laughter that might sound like I'm losing it?

I love making cards.  I have a long list of cards that need to be made...HAVE to be made. I find it so therapeutic, but I'm even having trouble getting my creative juices flowing. 

I guess that is where the enemy wants me.  

I'm know I'm not defeated.  I know life is hard.  I am grateful.  I guess I can't really describe the exhaustion of walking through being a caregiver 24/7. I could do it 8 hours a day when I was not attached....carrying empathy rather than sympathy.  In this walk, I carry it all.  The burden of suffering.  Watching my child suffer.  That hits so much different (as my kids would say)

So now, in my weariness, I'm grateful she is doing better now.  One feeding in that has not come back out.  She has bruised her lip from biting it.  Her stomach sunken in below her hips, vest hanging because that's how little it takes to ravage her.  (and ruining her favorite day of the week, Sunday)  

I see you, you can't have us.  We belong to the ONE. 

Pulmonary Update

 Everything went well with her Pulmonary doctor today.  Routine and simple.   On the way home, however, I thought I'd not use my gps to drive home because surely I can manage.  Wrong.  Thankfully, only about six miles out of the way, but I hit the toll bridges four times.   SMH.  

Thank you for your prayer for safety and your prayers in general.  Matt started part time back to work on Monday.  He's doing ok, just very tired.  We did hear today that the STD company approved him, so we should be getting partial payment, I think 40 percent but they failed to indicate when.  I *hope* they don't delay since we've been waiting so long.  

Thanks again for continued prayers.  

Nephrology Appointment

 So, apparently, Lillian has had high levels of protein in her urine for some time.  She does not have any other symptoms that would indicate that these are true test results...as in false positives. The only way to get true results is to collect her first morning urine once a week for three weeks and run them to the local hospital for results.  She is also doing some blood work at her next infusion in June to help make an accurate diagnosis for this.  We will see her again in three months for all the results and final final.  She was a wonderful doctor. A lot of this also revolves around the Crohn's.  (which I did not know) She also advised that we give her an additional 5 to 6 ounces of water throughout the day.  All in all, a great appointment.  We head back south tomorrow for her routine pulmonary visit.  Pray for our safe travels.  

Infusion update

 Not much to say except the infusion went well aside from needing more than one stick to get her IV.  The nurse really dug around trying to make the first stick successful. It amazes me that even with the use of a vein finder shining right on the vein, they still couldn't get it.  The second stick was a quick success causing quite a mess, but at least they got it.  I pray they whole time they are going in for a poke.  Next week she sees a new doctor in our ever growing list and then she follows up with her pulmonologist the next day.  

In other news, we were supposed to have had a ramp and rails built onto our house at least two years ago.  That, for a number of ridiculous reasons, has not occurred.  When Matt had his open heart we desperately needed that ramp.  After Matt went through therapy (and still is) he was able to manage getting into the house with the rails and bars a very generous family member installed.  The local Lion's club got involved in volunteering to install a ramp.  Once Matt was home, I told them that while a ramp would still be useful, I didn't want to take away from a family that was more in need.  Present day, I get a message from the builder of the ramp stating a what they are able to do.  In the mean time, since Matt has been home our sewer line completely occluded with tree roots and to be dug out and replaced. A huge expense that we had to take a loan out to afford to have done.  Now, here's where it gets really good.  Had that ramp been built prior to Matt's homecoming, it would have been destroyed in order for the sewer to be fixed.  So, while I'm sick over the sewer expense...I grateful that God is in control and already knew that ramp could not be installed at that time.  

I know my last post probably sounded jumbled and messy, but that is how life is sometimes.  But, God.  Matt has been out of work with no pay for almost 8 weeks.  But, God. I was led to Acts 12 in my reading yesterday and was quickly reminded to pray, to believe what I pray that he will answer, AND be grateful when the answer does come.