The tooth saga comes to an end...

 We saw Lillian's oral surgeon today to revisit her lingering tooth root.  He said it is well covered and well healed.  He feels very comfortable leaving it as is unless the root decides to grow up through the gum.  He does not want to see her again unless that trouble arises.  The root is right on top of a nerve, that if damaged, would permanently numb her lips.  Just exactly what we don't need.  Not to mention we have much bigger fish frying at the moment.  

Christmas came and went with its usual chaos, we had tons of food, a full house and gifts galore.  It is very nice to get gifts, it's even better for me to give them, but most of all my family was here and that was the highlight of the day.  

ALL of my kids and grandkids attended church service with us Sunday and we took Lillian as well.  The service was wonderful and we all had lunch together and then supper at our house after kids had naps (and me too).  

The stress of the upcoming days and the last month melted away and I just tried to soak in this precious time.

I struggled with decorating my house this year and only did it because I have children at home and grandchildren too. I want them to remember Nana's house at Christmas.  After getting everything up, I have enjoyed it so much and am actually dreading taking it down.   So, it will remain until New Years.

There is another iron in the fire that I will not go into detail about, but a big change is on the horizon.  I feel really good about it, I think the Lord has given me peace over the situation, as I have bathed it in prayer for months now.  I will share the news, hopefully soon, when the time is right.

Infusions to start

 Lillian will start her new med infusions the first week of January, then another in two weeks and then another in 4.  She will then go to every 8 weeks.  If all goes well with no reactions the procedures will last four hours at a time.  Each appointment is the same time every time.  1030am.  Please keep her in prayer for no reactions.  Please keep us in prayer for travel and that the transitions here at home are good. 

Let me tell you about my day so far....I've been on the phone with 6 different people in regards to medicine, infusions, more medicines, pharmacy screw ups, how to compound my child's medicine myself, more infusion appointment talk, setting up childcare for my son on infusion day one. Rescheduling a case meeting we have for her. Trying to prep for Christmas.  My laundry is overflowing and being washed.  My dog, pulled off, and chewed up a wooden ornament from my tree that my 4th grade teacher made for me.  I've paid our bills for this pay period, computed, tabulated and just did it all again because my mind is all over the place and I'm worried that I screwed something up, because last pay period I totally forgot to pay one of said bills and people...I have it ALL written down.  My bedroom light has decided not to come on, maybe a squirrel chewed the wires ?  I just don't know....it worked earlier.  I have administered meds, breathing treatments, vest treatments, vented her belly 3 or 4 times,  administered 2 tube feedings and have just scanned and emailed documents to a company to see if we can get reimbursed for her new med that isn't covered by insurance because it is LIQUID and she CAN'T SWALLOW.   I have presents that HAVE to be wrapped tonight, and here I am typing all this out because I'm overwhelmed with it all at the moment.  I rehung all our christmas cards because they kept falling down, cleaned up my paperwork on my desk, trying to tidy the kitchen...but feel like I can't really make any real progress.  AND tell me how in the world it's already almost 2pm???  My to do list only has one check mark....OH, and let's not forget that I CANNOT keep the toilet clean because my delicate little flower poops so much and it sticks EVERYWHERE. EVERYTIME.

Anyway, fam...when you come on Christmas, if the floor is dirty or you see poo on the toily, or you glimpse some dust on the furniture or my house stinks like a dirty dog.... keep it to your ownself. K?  

Much love and Christmas Blessings from my family to yours!

GI appt today

 Today we saw Lillian's GI dr in Louisville.  We were double booked so I anticipated a loooonnnnngggg wait, but it didn't turn out that way and he didn't seem rushed at all, which was very nice.  

He explained a lot.  He said of the irritable bowel diseases, Crohn's is the worse.  It is worse because it affects the entire GI tract from mouth to butt.  She will begin remicade infusions in the next week or two, we have authorization from her primary insurance, just have to wait for secondary auth.  She will have three treatments very close together. Then infusions will be every 8 weeks.  She will have lab work prior to each infusion.  Her treatments will last at the least amount 2 hours and the most, potentially 4 hours.  Due to the severity of her case, he is going to start her on a higher dose than they normally give. We will see him again in eight weeks to assess her current medications.  In eight to twelve months,  they will do another scope and more biopsies to see if she has gone into remission.  That is when they will reevaluate the infusions.  She will have repeat scopes for the rest of her days as needed.

Many friends have reached out asking how she is doing...well, she has 8 to 10 bowel movements a day.  She is very bloated and requires venting at least 4 times a day.  She is emotional and dealing with "roid rage" as I call it, from being on so much steroid.  She will continue that for another month at least.  

Many friends have asked how this all started.  The week of November 8th, she was having quite a bit of bathroom issues.  We had to skip a few feedings and this is something we do deal with from time to time.  By the following week, we thought her ladies days were coming and hormones were in high gear.  Her behavior was pretty out of character.  By that Wednesday she began to bleed with bowel movements, which again we thought was hormonal. By Friday the 19th,  it was very clear to me that that was not the source of the bleeding.  We saw her pediatrician that afternoon and things just went downhill from there.  

In general, when things go wrong with her medically, we've been dealing with it here at least a week or two trying "figure out" was is happening.  In the past, it's always been respiratory.  This has been a whole new area for us as far as chronic diagnosis.  

I am struggling.  Each week is better.  I weep because my child is suffering.  I don't know if I can explain it better than that.  I'm heavy hearted, but better.  We have much to be thankful for.  I am so grateful we are home.  Our lives will be different....again... I now can add the title PI to my long list of duties....you know, poop inspector?  

Merry Christmas from our family to yours.  Keep us in your prayers.  Many changes  and challenges facing yet another year.  Hug your babies, love your enemies, and  remember the Lord is in control and HE knows it all from beginning to end.  

Sometimes it just feels like this

 In the Shallows

In the shallows so long, forgetting what's wrong. 

The tide rolls in, the tide rolls out.

My head above water, the waves calmly go.

It's a manageable place, then the waves start to race.

I'm farther from shore, in the shallows no more.

The waves..they get bigger, they grow and grow.

The sun is still out, those on the shore continue about.

Nothing is different for those on the sand.

They wade in the shallows, they don't seem to know.

I see, in the distance, another soul with persistence.

Their wave's a bit different, also unseen, unexpected.

We'll get back to the shallows, but, when, we don't know.

I think I might sink, the waves get bigger with each blink.

My breath harder to catch in the ocean I'm given.

Hard to forget about all of the sorrow.

Time seems to still as I gasp and spill.

To the others around me, I'm just out for a swim.

I need back in the shallows. I need a tow.

I try to hold fast to He, the ONE who holds me.

The waves dying down, my breath easy now.

In the waves, in the shallows, He IS where I go.

November 9, 2021 written by me.

Can I share my week with you? The tooth saga continued...

 or root saga whichever you think fits.  First off, this past week has been a rough one.  Tuesday, Matt, who is very rarely ever sick...it takes a WHOLE lot to knock him off his feet, well Tuesday morning he started a vomit fest which lasted 2 days, he stayed in the bed and barely ate or drank until Friday.  He missed work all week, although he tried to go back Wednesday but came home after half a day.  He is at work today, so I hope he's over the hump.  Ezekiel started vomit fest Saturday and continued into Sunday.  He seems completely better now.  Lillian was taken down almost four weeks ago with a two day fever and nasty drainage that my grandkids all had and is STILL needing extra treatments because her asthma is flared up.  She's still draining like crazy but it's clear, but still messing with her asthma.  I struggled with just a mild headache off and on all week and yesterday I think I hit the wall, so my sinuses are now jacked up, no rest for the weary. HA.  Please, please pray that this stomach thing passes over myself and Lillian.  I'm already declaring we will NOT get it.  

So, we say an oral surgeon in Greenwood and he has determined that we will hold off on the surgery for 6 months unless troubles arise before then.  I'll spare you all the minute details.  

Anyway, it's been a crazy week with lots of upheaval in our routines.  Keep us in your prayers.  Thanks for reading.

Dental and Pulmonary Update

 Big stuff coming for Lillian this summer. First, she had a routine dental appointment last week and it went much better than before.  Very few tears.  We have, however, come to the point where the broken tooth must be dealt with. She is scheduled for dental surgery in August at this time.  She will have the tooth pulled and a couple fillings and sealants placed.  

We saw her pulmonologist today. She will need to have a chest CT this summer to get a look since it's been 6 years.  He suspects some bronchiectasis, so this CT will show that finding if it indeed exists.  I think medication is the answer if that is the case.  

We now, officially, only have two children at home .  Seems so very strange.  

Continue to keep us covered in prayer as I continue to deal with medical issues in multiple areas.   

Milestones to me

 Today, 14 years and almost five months later, Lillian is moving OUT of her car seat.  I know it doesn't seem all that life changing to most...but it is a huge milestone to me.  I even have the tiniest anxiety about it...BUT...it's time.  Her legs hang out way over her booster and it's just a safer place for her to sit in a normal seat.  

Good bye booster.  Hello regular seat.  Really hard to believe.....

Celebration and Love

 Today we celebrated one of my grand daughters' first birthday.  Time certainly flies.  Seems even faster than my own kids growing up.  It was immediate family and a few family friends.  It was a joyful celebration.  Hazel Basil, as we affectionately call her, is a lover and cuddler.  She is just starting to toddle around but far prefers to be held.  

As I sat visiting with my lifelong best friend, we were catching up on my former church family and how folks were getting along.  She shared about a gentlemen who has a special needs daughter.  I remember her through all my growing up years.  Since his wife passed, he has been mostly caring for her, she was fairly independent.  Michelle shared with us today that she developed Alzheimers and her father had to put her in a nursing home and how broken hearted he is over it.  My mind collapsed, crumpling like a wadded up piece of paper.  As the news sank in, the tears started to overtake me and my heart broke for his. I can't really explain it any other way.  I  tried to regain composure, but it was hard.  Tears fall, as I try to write about it.  My chocolate birthday cake turned to sand in my mouth.  (and I love chocolate cake, friends).  

Life with a special needs child is tough.  It's heart breaking, difficult, with never ending challenges.  It's joy filled, tear stained, and blessed beyond measure.  

I'm a lot a bit wrecked tonight, because love hurts sometimes and I'm hurting for a daddy who is hurting for his little girl.

She loved the dukes of hazard, I hope she still does and I hope it still brings her joy.

Lillian insisted on taking a walk today, even though  there was a cold wind trying to blow us off the sidewalk.  She still wanted to walk. So we did.   I sit here, listening to Lillian "scare" her dad as he gets to her room to get her to bed.  Hold on to the momemts.....they pass quickly by.

Pediatrician Checks In

 Lillian had her 14 year well child appointment last week.  She had gained six pounds in a year and is just an inch shy of five feet tall.  She had a good visit, but I did ask for a blood draw because she has complained about being tired for quite some time.  I cried a little as we discussed the changes she's going through and some of the possible scenarios we should consider. She did pretty well with the blood draw, but it's heart wrenching to actually hear her say through tears, "I'm  'care".  

Did get the call today, she does have a very low vitamin D level so we'll start a supplement for that.  Her hemaglobin was good, and she had no corona antibodies.  Her metabolic panel was also fine.  

As she sat there on the table, legs crossed, hands in her lap, waiting I was struck by how grown up she is.  I nearly started to cry again.  When she was a year old and we had professional pictures made, I cried while previewing the photos because, first I was happy she had made it to a year old.  Second my heart was gripped that these might be the only photographic memories I would have of her life.  This day, at 14, I'm just grateful and in awe.  So, I said, can I take your picture and she said, "yea".  There is so much captured in that one moment.  

  So, if you're reading to this point,  this might resonate with you...we weren't given what we prayed for...ie a healthy child.  As we prayed in those early days and the years since we haven't been granted the desires of our hearts for her development and health issues.  We HAVE  been given life, we've seen miracles, we've seen prayers answered in other ways.  I've grown in the fruits of the spirit and closer and closer to my Strength and Shield.  Your story, your faith WILL touch others in ways you won't even know.  You are strong and this is not over until HE says it is.  

Heart Dr Checks In

 WHAT A DAY!  I felt confident that we would have a great cardiology appt for Lillian and I was right.  Her heart looks great and he doesn't foresee her ever needing heart repair to her original repair.  Since she doesn't grow in super huge leaps, it's actually been a good thing in regards to her heart defect.  Now, I move on to story time....I left town about half an hour earlier than needed and had been on 65 for about 25 minutes when we came to a dead stop.  There was a crash ahead and there was no telling how long we'd be sitting.  After 25-30 cars ahead and behind me made illegal uturns, I called the dr to tell them what was going on.They stated I could be 15 minutes late with no problem. I, then, tried to make an illegal uturn myself, only to be caught by a state policeman.  Now, mind you, I thought, these other people were not making the best decision, but I was also starting to feel desperate.  So, I turned myself around and was just settling in for the wait when the police officer, who was young enough to be my son, tapped on my window. He proceeded to chew me out, very kindly, about my "almost fatal" decision to make a uturn.  I told him I agreed completely and then he continued to lecture me about almost killing ourselves.  He said he wasn't going to give me a ticket and I told him I he should because I deserved it.  He finally proceeded on his way and I felt like a total idiot.  We arrive at the dr office and I am busting tale to get in there, my time read exactly 15 minutes over our appointment time.  We walk into the office and the front desk/medical assistant was ruder to me than I've ever encountered in my life.  I was biting back the tears.  She continued to talk to me very rudely to the point, where my old fleshy side nearly chucked that clipboard right back at her.  I told her I called and she was so so rude...I sat there on the seat thinking be kind to your enemy, don't return evil for evil.  She took Lillian back and was a different person toward her and I finally made it to the bathroom and cried.   

The doctor did say he was sorry for my trip issues and I said, well I got chewed out by a cop and your receptionist was not kind to me at all.  He said he was sorry for that too.  It was a rough day for me, stressful, I should say.  I just hope there was no injury to the people involved in the wreck.   

Also, we had a good report with her pulmonologist in December.

Never a dull moment.