Her heart, her feet, her teeth---OH MY

Lillian had her biyearly cardiology visit.  All was well.  He said it will be a few more years before we can spread out her appointments even further, but for now biyearly will be the visits for now just to make sure her scar tissue is growing with her body.  He did tell me her PFO (hole in the heart) is flappy but he doesn't see blood flow through it, so they consider it closed.  Her blood pressure, this time, was considerable high...she is always anxious, so that concerned me because we've never had a high reading and she's always highly anxious.  The doctor did not seem concerned.  Good visit all in all.

Lillian got new braces for her feet because she is growing so well.  Still not on a chart, but her feet are definitely growing bigger than we can seem to keep up with those afo's. She was fitted for them at least 6 weeks ago and we just picked them up.  They are custom made for her feet, I guess that's why it took so long even though it usually only takes a couple weeks.  We also have a new person in that office taking over her care.  She's super nice.  I do miss our previous guy.  She was asking me questions that I just can't remember the answers to, and I'm like can't you look into her chart for notes?I mean my goodness...I do remember a LOT in regard to her care, but that kind of stuff just doesn't always stay with me.  I'm telling you, we have to jump through a whole lot of hoops to get these things new more than yearly and she we do everything they ask and then they ask me to bring her in with them so they can have a picture as proof for the insurance even though her doctor has written a note indicating why she needs new ones.  Super frustrating.

We had another visit for a teeth cleaning and this time she did super amazing.  The hygienist says to me, what's she drinking?  I say, 1 mountain dew a day.  If she drinks anything else, it's a tiny bit of milk.  She then says, well I can see we aren't going to get rid of drinking  mt dew......um no, no we're not.  I actually heard another one of them tell a child not to drink fruit juice. Not don't drink much, just flat out don't drink anything but water because every thing else is bad for you. Come on...I mean really.  Just come on.  I am doubtful that all those people only drink water all day every day.  Aside from that, hello, we are the parent.  ACK, I'm not even going to keep on going.  I just find it aggravating.  My child is very well cared for.  Her mouth has been through so much trauma, none of which we've had control of.  My daughter has so little choice in the realm of her life, if she watns a mt dew every day, she'll get to have one and as my mom would say period dot end.

She is remaining healthy which is awesome.  We've resumed schooling here in the home since Christmas break and she is less than thrilled.  Such is life...tee hee.  She knows she can't get out of it so instead she just refuses to engage.  Today was better than yesterday, we'll just add a little more each day to get back up to speed.

We see her pediatrician for her 12 year check up here at the end of the month and I'm going to share her weight and height changes since switching her to real food in her gtube.  It is AMAZING!!  I still pray and hope she will eventually take to swallowing food.  I get discouraged sometimes but then I look back on things that have happened that I never thought would and remember that God knows my desires and hears my prayers.  So, until next time, be blessed and thanks for taking the time to read about our girl.

12

Lillian has celebrated her 12th birthday today.  I have had a hard time not crying all morning.  I stood in church this morning just whispering... praying thanks to God for the opportunity,  the blessing of being her Mom.

Having a medically fragile, special needs child has taught me to have gratitude each and every day.  We celebrate the smallest milestones.  We rejoice when she happens to swallow a small piece of food.  We talk for years later about "that time she said guacamole" so clearly.  I'm so delighted that I can speak about her life in the past years....YEARS!!!

  She wanted to attend church, but when I told her she had to wear a mask,  I got a very dirty look and a very preteen " tay ho" response ( she hates to wear a mask) .

She got to spend the day with most of her favorite people.  All her siblings pitched in a got her a real mini fridge full of her favorite drink.  She was lavished on with new clothes, Barbie toys, a little cash and some bath and body works soaps and other various things.

She's currently playing in her room with all her new goodies. It has been a delightful day.  I'm beyond grateful.

Happy Happy Birthday Lillian.  I love you!

Urology Update and then some

So we started out early this morning to head down to KY for Lillian's long awaited ultrasound regarding the free fluid in her abdomen above her bladder.  I had a quick stop to make at GFS to pick up my preferred yeast because it's the only store that carries It,  and it is super cheap there. While perusing the store I found a great deal on b/s chicken breasts, less than a dollar a pound, but must purchase 40lb case.  I bought my yeast and decided I'd mull it over throughout the day and went on our way to our appointment.  

I'll make this as brief as possible, but I really want to be transparent about my thought process today.  As we waited, long past our scheduled appointment, with Lillian and Ezekiel (5).  I became very weary.  I am so totally grateful for drs and hospitals that do help my daughter, I find myself extremely tired of the going and waiting. Not to mention the concern that rises up every time someone who is so obviously sick and miserable is coughing nearby. It is wearisome.  Grateful....but weary.  Lillian is so much better than the early years when appointments were constant, and I'm thankful for that. I'm thankful for the journey, but tired nonetheless.  

So, probably no less than 25 bathroom pit stops...LOL and three people washing hands and pant pulling up and all that good stuff, we have the ultrasound and set off to the dr office for results.  

Now, let me paint a picture for you, this waiting room is kind of like a very skinny, very small trapezoid shape.  Upon hitting the door, the MOST awful odor assaulted me.  AND...it was in that room, not going anywhere.  A room, in which we had to wait around 2.5 hours to be seen ( because they can't schedule the appointments back to back because that just makes too much sense and I don't want to have to make a additional trip down there for results and they can't possibly give them by phone even thought they provide NO physical exam on her....*sucks in breath*) Even though they say they will see us, they never do.  So at the one hour and a half mark there is us and two other ppl left in that room, and we were not the stinkers if you get me drift.  (and there are more details of this particular day, but I will spare you but to say I'm thankful for underwear on other ppl and some folks might need to consider covering their lady business) So we wait and wait and wait and they take us to a room where we wait further, but praise the Lord, we have gotten away from the smell.  I turn on some praise music which causes Lillian to break down into tears and then I wanted to to as well.  

The NP finally graces us with her presence to announce the fluid pocket is gone!  Gone gone gone!!  Praise the Lord.  I'm so thankul I listened to His prompting in holding back on the CT.  It is not often well received when you go against the wishes of the practitioners...ask me how I know...but I digress, I'm just so so thankful.  All glory to God who hears and answers.  Thank you to your friends who pray and intercede for our girl.  There are not enough words.  

Thanks for hanging in for the post if you're still reading...and if your wondering , I did pick up the chicken on my way home and I may be seeing chicken in my sleep tonight.  I was further blessed tonight by sharing food with some friends.  God is good.  All the time.  

Life has been crazy!!

Sorry, for such a long time between posts.  My life has just been crazy.  Updates on Lillian:

1. We will continue to keep an eye on the broken tooth, xray does not appear to show any abscess
2. Pulmonary (lung) Dr was A-Okay...and you know how I obsess over her sats, well, she's back up to 99.  I give her albuterol daily and that seems to do the trick.
3. May was a pretty rotten month for her, she was sick for most of the month, requiring extra breathing treatments and several rounds of antibiotics.  Thankfully no hospitalizations.
4. Her urology appt showed us that she has a sack of fluid above her bladder in her abdominal cavity.  I'm praying it will just disappear and at this point, we are awaiting scheduling for a    pelvic ultrasound to further investigate.  If it is still there at that time, we will have to go for a sedated CT.  You just know how much I love that, right?  They want to skip right to that, however, I'd just like to pray that fluid away and avoid the CT altogether.
5.Lillian is now an AUNT!  Our third daughter gave birth three weeks early to a baby boy.  He had a rough start and is struggling a bit to gain weight, but he's just beautiful and extremely adored by one and all.

Keep our family in prayer, we have another grandchild due to come at the end of September and my Momma heart needs a little more easy....Being a grandma is surreal.  I'm so thankful for the experiences I've had to prepare me for what has transpired over the last few weeks.  Most people would likely not think having your baby in the NICU is a blessing, however, it prepared me for my grandson to be there.  It equipped me to help my young daughter going through a similar path.  (very thankfully not to the degree of our walk, but still.)  It is fun to have a baby in the house again and be able to have so much peace with him.

This year has held a lot of serious, difficult situations to walk through as a family with our children.  We've seen positive outcomes, praise God.  Though it has been difficult, I have been driven to my knees almost constantly and there is peace in knowing the Lord is in control at all times.  My emotions may be all over the place, but I KNOW He is near and I can trust in Him.

When I'm tired...

A glimpse:

This past week our refrigerator failed, our repairman was unable to fix it.  We went on a hunt because we were hosting our daughter's graduation party at the end of the week. (yesterday) Guess what? At the time  the fridge was supposed to be  delivered as promised, got a call that it is in fact NOT being delivered.  SO we hosted a party out of coolers and stored food at our church, so grateful for that.  It has been a stressful, long week.

 Lillian also had a dental appointment last week and it did not go well.  She completely regressed and cried and acted out through the entire cleaning.  Thankfully, she is not combative.  Her broken tooth is worse and the cavity above is still there.

Sunday, we all attended church as our third daughter graduated and several others, as well, were honored.  It was a whirlwind day all including LOTS of anxiety by Lillian.  She gagged all through the entire day, she cried terribly when we entered the gym.  My older daughter did some brushing and joint compression on her before we left and we had ear plugs shoved in her ears the best we could, but it was just stressful.

This morning, I asked her to get dressed and that brought on an onslaught of tears, because she simply did not want to change into regular clothes.  This led into terrible crying and gagging as I insisted on brushing her teeth after she had her turn.  This all lasted about 15 to 20 minutes, but it now has me in tears.  The tears come on me just as they do her.  Only, I know why mine fall because in these moments I'm hit with just how different and hard this daily, yes, DAILY walk is and can be. Things that you can't really discuss with all the regular people in your life because they just don't live it.  Or they tell you things that would work for "normal" children. I have raised a few,  this is not my first rodeo.  

Life is just hard sometimes and sometimes you live daily in hardship.  And no one really knows the extent.  Sometimes it's hard to remain optimistic and not discouraged and overwhelmed.  It's 12:51 and no one is crying now.  I'll be thankful and look towards a better day.  Say a little prayer for Momma, I'm a tired and a little emotionally drained today.

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.

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.