Thursday, April 19, 2018

New Glasses, new braces and a rant

Lillian recently got new glasses.  They are so cute and this time she was being very difficult about picking any out and then we tried this one pair and she said yes and never waivered.  Little brother also got glasses, so that makes all children in this family plus Mom with glasses.



  Near the end of March we had to get back to the orthopedic brace guy and get into new braces because she's had SOOOO much growth she had outgrown the old ones.  Woohoo!!  We graduated her to ankle height braces and we've, of course, had some foot breakdown and had to make adjustments, but I think we are good for now.

We no longer have respite care in the house, so Lillian is back to going on my grocery day.  Today, as I pulled into Walmart, I saw there was handicap parking on the side of the building and I pulled in to park. I then looked up to see that Walmart had moved all their smoking benches and cigarette towers right in front of all the handicap parking spaces.  There was a lady sitting there smoking and I restarted my car and drove around until one opened up in front.  Seriously???  Did it not occur to even one of the managers of the store that not ALL handicap people are limited to physical disabilities???  In case you are new here, Lillian has chronic lung disease, asthma, COPD and ciliary dyskinesia.  (CD means when stuff gets down in her lungs,  she is unable to remove it.) .  I go in and talk to a manager who basically tells me that it's permanent so people can smoke out of the wind.  She then told me store management is who made the decision.  I ask to speak to them.  After waiting for at least ten minutes for someone to respond, a very young man approaches and I start talking to him about it.  He tells me he will bring it up in the next meeting and nothing is permanent.  He also said he was new there so he didn't know how long it had been that way.  I told him I live here and I shop here and it is fairly recent.

The same thing happened when I was leaving the hospital with her, THE HOSPITAL, that has signs posted EVERYWHERE that there is NO SMOKING ON THE PREMISES.  There were two women sitting on the bench right beside the main doors smoking.  When I asked the staff to enforce the policy, she said "well I can talk to them but it probably won't help" then I had to insist that she ask the hospital security to ask them to move.

PEOPLE, SERIOUSLY?????

I already stress about taking her out in public because of germs, let alone having to walk through a smoke cloud to get into the store.

Just another day in the life of warring for my daughter.  Life can be hard enough...rant over.

On a lighter note, we took Lillian to church on Easter Sunday and there is really no place for her as far as sunday school or children's church, but she sat really well through the service.  Our pastor was trying to shrug out of his suit coat and it looked a little like it was stuck, but it really wasn't, but she giggled loud enough for him to hear and he teased her a little, but all day she kept just laughing and laughing, retelling us how "joh tu e ja"  translated Johnnie stuck in his jacket.  It was so funny and she must have told me alone the story four times.



Tuesday, January 30, 2018

Urology update

Today Lillian had her bi-yearly renal ultrasound and dr visit.  Her kidneys have grown considerably.  They were happy with that.  She didn't show any hydronephrosis, which was good.  She has not had any UTI's or infections, so that is all good.  There was, however, quite a bit of drama when we arrived, because a) we have to travel over an hour to get there, b) we have to push water through her tube to make sure her bladder is full, so c) when we get there she has to "go" so badly she is freaking out because she thinks she's going to pee her pants.  I had to physically restrain her on the table for them to get the initial pictures with the full bladder.  We then race to the bathroom and someone is in there.  (side note, does anyone think it's odd that a urology office only has ONE toilet...for PEDS?) Stressful.  Lots of stress.  After she emptied, which was a LOT, we went back and they said she was still pretty full.  So, back to the potty we went.

If she begins to have infections or incontinent issues, the testing they will need to do have to ramp up.  She said she might need a urodynamics test in the future to test her bladder pressures.  The bladder has more risk of problems because of her chromosome abnormality.  The vesicoureteral reflux will not be addressed unless she becomes symptomatic with infections.  All in all a great visit, minus the arrival drama.


Sunday I was having a bad " mental day".   I had wanted to make a visit somewhere (because we are basically homebound except for dr visits and those we try to push out of the winter as far as possible) I was suffering a little housatosis, but there was always one place I could go safely without concern for getting sick.  That place has been taken away from me.  I was sad and I still am.....just please when you think of us, say a tiny prayer for me.  There are things in my life that I'm settled with, but sometimes the grief of it all washes over me and there's nothing I can do about it.  I have moments of overwhelming discouragement from time to time. So friend, I leave you with this, are you weak and heavy laden?  Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.  Take my yoke upon you. Let me teach you because I am humble and gentle at heart, and you will find REST FOR YOUR SOULS. For my yoke is easy to bear and burden I give you is light. " Matthew 11 : 28-30  I'll rest my soul there.

Friday, January 26, 2018

Dental and growth updates and a bit extra...

First off, shortly after Thanksgiving, Ezekiel got sick and just a few days later Lillian got sick with something that seemed entirely different, so for about a week I had two pretty sick kiddos, very little sleep, he had croup and in between his bathroom steam treatments I was having to give Lillian additional breathing treatments.  Her asthma flared and it took steroids for him and two solid weeks for both of them to be completely well.  

In January, Lillian had her quarterly dental appointment.  She did very well, she is ALWAYS highly anxious, but with some calming essential oils and a hand held diffuser ( a very nifty Christmas gift) she went through it like a champ.  Anxiety, but infinitely better than when we started.  That was the good news.  The bad news...she has a broken tooth.  Can I just say how upsetting and discouraging that piece of news was.  The end process that will eventually take place is NOT something I look forward to.  The dentist is ok with watching it for the next couple of months, unless there is an issue, and going from there.  Lillian had taken a pretty hard fall a week or so before and took a header, I think she broke it in the fall.  Her glasses took a pretty bad hit so I believe that is what occurred.   I have been vigilant about brushing and flossing twice day and she also has a cavity in the tooth above the broken tooth.  Again, something we are keeping an eye on for the time.

Thursday Lillian had her 11 year check up with her pediatrician and I tell you I almost fell into tears when she got on the scale.  She had gained three, THREE more pounds since November.  AND, she grew an inch and a half taller.  It's been about 9 months of real food going in her tube feedings and she has gained at least 6 pounds.  It is just overwhelming how much she has grown physically  n more ways that one.  I find myself wanting to tell random people how much weight she's gained and they look at me like I'm nuts.   HA!  (which I guess is partly true)  I don't even know if they use the terminology failure to thrive with children after they are out of the infant/toddler stage, but it is delightful to see my daughter THRIVING.  She actually has a BMI now.  That's big stuff to this Momma.  I almost couldn't focus on anything else after I saw him push the scale over the 50 pound mark....52 pounds.  Thank you Lord for the wisdom given to me to press forward and the therapist who made the suggestion and the prayers and gift of a friend who made blending possible!!  Did I mention I was excited about her weight??  😂 Rambling on a bit, no?  Moving on....

So, to end my day today I had the privilege of blessing a family with a meal whose daughter has been very ill and has struggled her entire life.  There is nothing like connecting to another Mom who has and is walking through a similar journey.  It is a deep connection for me.  I feel like my heart is tied to them.  The loneliness, the envelops me from time to time, passes in those brief moments of connection.  The Lord is so good and He sends me the best.  this journey with Lillian has and continues to teach me so much about loving and reaching out to others.  

I shared this picture on Instagram and I still can't get over how grown up she is looking.

Saturday, November 25, 2017

11 years and counting

November 25,2006.  The worst, best day of my life..or is it the best worst day of my life?    Waking up without your baby is one of the worst feelings I can remember.  I was not expecting to have Lillian...let alone the trauma that would ensue after her birth.  I can only partly imagine the harsh reality of losing a child.  I do, however, understand what is like to sit on the brink of it.  More than once and actually, with more than one of my children.

I am SO SO SO very grateful for the life of my girl.  Her life has brought SO much to mine.  We continue to be gifted another year to celebrate, when we were told only to expect one or two.  There have victorious mountains climbed and valleys that have taken us low and, at times, kept me there a while.

We celebrated with some of our family on Thanksgiving since we were all together.  She was showered with love and gifts.  She walks around, delightedly, with all her gifts in bags unloading and loading them as she moves from room to room.  She chose her cake and frosting, though she did not partake any of it. She also chose the "sprinkles" that went on top.


Lillian continues to touch the hearts of others near and far with her sweet smile and gentle spirit.  There are few days that go by without a whisper of gratitude to the Lord.

Thank you, Lord for 11 years and counting.  Thank you for the daily reminder to be grateful in all things.  Thank you for the blessings in good times and bad.  

It is amazing to look back at ALL the wonderful encounters her life has brought to us.


Thank you, friends, for 11 years of prayers, thoughts, kindnesses, encouragement, and blessings.

Happy 11 years and counting to my angel.  














Sunday, October 8, 2017

Updates and where have I been

There are so many things to tell, so I will try to keep this brief. I had to go back to my old posts to see where I left off.

Update one: her dental work turned out much more in depth than we were expecting.  We took her in August to have four fillings under general anesthesia in the hospital.  They came out during the surgery and told us they needed to pull one permanent tooth and two additional baby teeth. When we  arrived back to post op, they had actually removed six teeth total.  It was a tough couple days following the surgery, but she is all recovered and her teeth are coming in quickly.

Update two: She gained two more pounds from her last weight check in.  Can I get a woot woot???  So exciting...just brings me to tears.  Real food for the win!!!

Update three: we've had several re-visits for her leg braces.  She has actually experienced some skin break down and all the guy keeps saying is " I've never seen that happen before"....we are not surprised as our Lillian always keeps them on their toes.  He does feel she has outgrown the braces, but we are trying to hold out for another month or so because it is not easy to get these things approved through insurance.

Update four: Her feeding therapy took a big back step due to all the teeth being removed.  Can't practice chewing when you don't have any teeth.  You know, her teeth are poking through, but not enough to balance the big gaps in there. Her PT has improved much since we started and the braces are definitely doing the job of helping give her legs stretch. We will be taking a break from therapies beginning November first to avoid the nasty flu season risks.   Our therapy office moved into the main hospital, so we felt it was in her best interest to pull out for the season.

Update five: Remember those weddings I mentioned, well one of them got moved up and is actually happening this Saturday.  My oldest daughter will be saying "I DO" to a great young man.  My former laptop  kicked the bucket in the midst of creating her wedding shower invitations several months ago.Hence, the lag in posting.

Update six: Today, my two oldest girls and soon to be son, gifted me a new lap top today and I'm beyond grateful.  Just beyond.

There you go, I tried to be brief.  I think I covered the majority of the last few months.  We have had a recent pulmonary visit and that went fine.  OH---and we had her regular dental cleaning a couple weeks ago and let me tell you, friends, she did so great!!  She only shed but one tear and just breezed through like a champ.  Thank you so much for keeping Lillian in your prayers and our family as well.  We are so blessed.

Thursday, July 27, 2017

Growing, Botox, Losing, Growing more....Fillings

Ok, is that a crazy title or what?  Trying to grab your attention.  :) Did it work?   Anyway, I've been derelict at posting updates so I'm going to try to make this quick.  The second month we did a weight check, she did  not gain, but she did not lose...however, she grew 3/4 of an inch taller.  We ( the doctor and I) were both pretty amazed.  So, last Friday she went for another check and she lost four ounces but grew another 1/4 inch taller, so now we will check again in two months to make sure we are progressing.

Botox injections were recommended by her PT/OT for her legs and brachial palsy injury in her arm.  The shots are remarkrable successful in loosening tight muscles.  Today we saw a pediatric orthopedist and after xrays and examination by the PA and the doctor, it was quite refreshing to NOT have a doctor trying to push us into something. She felt that shots may cause the opposite effect for her.  She said that Lillian did not fit the typical mold.  Shocking, right?  Nothing new to us, that's for sure.  Personally, I had deep reservations about her having the shots.  I mean, I would do it if I thought it would bring great improvement, but what she said today helped confirm that we didn't need to do this.  If she would have the shots she would need to be put out with general anesthesia.  She also thought that was a greater risk, with Lillian's history, than the benefit of having the shots.  So, no botox.

We would ask your prayers as Lillian is having dental work in August and she will have to be put under for the fillings.

The last few months have been crazy with all of her appointments, but I'm so blessed to be able to do all this with her. I've been a bit discouraged with eating and speech progress....BUT, she did eat a quarter cup of cocoa puffs in milk and she chewed and swallowed it all.

Side note...two of my older girls have gotten engaged and we are in full wedding planning mode.  Prayers for us all appreciated.

Tuesday, May 30, 2017

Urology checks in and walking a new walk...sort of...

Today we had to be in the Louisville area at eight a.m., yes, I said 8 AM, for a renal ultrasound.  I thought about rescheduling, however, I figured we might as well just get it over with. So up before five and out the door at 6:47.  At least it's summer, otherwise it would likely have been dark.  We had to travel to a different Norton hospital, which is a place we've never been before.  Missed an exit, got lost trying to find actual place we were supposed to be.  Stressful.  By the time we arrived, she was crying because she had to "go" so bad.  Thankfully, they were able to get the bladder ultrasound ( her crying hysterically because she had to go so badly) and the rest of the test was easy.  Then, we arrived for our appointment.  The radiologist hadn't read the report yet, but the NP thought everything looked good.  So, for now, unless she becomes symptomatic, we will just do renal ultrasounds every six months.  She also said it's safe to assume that since she had reflux at age 7 she most likely still does.  If a child hasn't outgrown it by age five or so, they usually don't.  If she starts having issues, as in UTI's then we will have to go back to getting VCUG's and more invasive testing.  Missed an exit on my way home, more stress.  I do not like going new places alone...too hard to navigate.

We also got her braces about a week ago.  She's been doing well with them, although she wants to take them off after she's had them on for a few hours and she's supposed to wear them all the time until she goes to bed.  Good times.

I wanted to share a bit more here, but my brain is scrambled and I keep having to reread everything I type.  Hope I don't sound any crazier than usual.

Here's some pics of her in her braces...she picked out the pattern.


The recently added this play kitchen at therapy and I couldn't get her out of it to take a good picture, but hey, playing is definitely more important!!