Home at last!

As everyone knows Lillie had her surgery a week ago and it could not have gone better. We had to stay in the hospital until Saturday because the doctor wanted to make sure that she was holding her food down good and she was also in alot of pain because of her incision. My poor baby has about a 2 inch cut on her stomach, but she is getting better as far as the pain goes. Now she has a cold, yeah!!!! She was waking up all night coughing and congested and crying. Poor thing, if its not one thing its the other. Please pray that this passes soon because anytime her immune system gets down she has a greater risk for seizures, which is exactly what happened in February. Anyways, I have to go because I have to go the pharmacy and get Lillie some medicine for he cold. Thanks for all of the support and prayers!
Alicia

Hello!

Hi everybody! Just wanted to drop a few lines to tell everybody what Lillie is up to.
Well, with Easter coming up I was trying to find an Easter Egg hunt for special needs children and I actually found one without any trouble at all! I took Lillie to the doctor last week and when I was checking out I saw a flyer for the Special Bunnies Easter Egg Hunt. I am really exited about it. If anyone knows any families with children with special needs and are interested, it will be held Saturday April 4 from 10am-12pm @ Creek Trail Park in Richland Hills on Glenview Dr between 820E and Booth calloway Rd. There is a contact person on the flyer for more info. Her name is Rebecca Perry @ 817-372-1331. Hopefully the weather will be good.
I also want to let everyone know that Lillie will be having surgery for her acid reflux on April 14. We were trying to keep it under control with medication, but I just doesn’t seem to be working that well anymore. The surgery is called a fundoplication, or fundo for short. I probably spelled that wrong, but I’m a mom and not a doctor! Anyway, they will basically wrap the top of her stomach aroung her esophagus so that the acid will not be able to come back up and cause her pain and anymore damage to her esophagus. It is a pretty common procedure, but I just hate the fact that she will have to go through all of it. She’s on tough cookie though, so I know she will bounce back in no time.
Well, I will go now but I hope everyone has a good night and a good day tomorrow. God Bless!!!
Alicia

Hello!

Sorry it has been a little while since the last update, but it has been a little busy around here. A couple of weeks ago I had a garage sale that I actually did pretty good on and all of that money went into Lillie’s account. I know I sound like a broken record, but Nathan and I really appreciate everything that everyone has done for us since Lillie’s accident. It has been hell but it makes me feel better knowing that Lillie has so many people that care about her and are willing to help her in any way they can.
Now, for some awesome news..Another thing I was busy with was trying to get approved for a grant that would give us the means to purchase additional therapy equipment or medical equipment for Lillie and we got approved!!!! I was so exited. It was cool how it happened because I had to fill out a bunch of paperwork for the grant request, which included a detailed list of all the items I was requesting. Well, it was sent for final approval or denial and I figured I would hear from somebody letting me know either way. A few days went by and I had not heard anything, but I didn’t think much of it. Well, I got a delievery from UPS one day, which was not uncommon because I get medical supplies all of the time from them and I’m thinking that was what was in the package. Then I opened it I realized it was some of the things I had requested !!!! I am surprised that nobody called 911 for a noise complaint because of how loud I was being and how exited I was. It was like Christmas in March for me because for about a week I got a delivery almost everyday. I am still exited about it. Lillie got some neat therapy tools that will help her in speech therapy. She got a net swing that has a feeder seat inside of it, which we are going to hang on our deck so she can play outside. She got these toys that are so cute. They are a Giraffe, a pig and an elephant that have what is called a switch that connects to them. Since Lillie can’t really interact with her toys, the switch allows her to activate the toys with just a touch of her hand and it will connect to most of her battery operated toys. The switches have to have a battery adapter for them, so I ordered those as well..What else..She also got a crawler assister which is something she can lean over to be in the crawler position and it has wheels on it so we can push it to help her along until she can do it herself. She also got and pulse oximeter which measures the oxygen levels in her blood and checks her pulse at the same time. Eat your heart therapy companies! We have it all right here! Trust me, if I had a bigger house Lillie would have much, much more! I could go crazy ordering out of the catalog I got everything from.Well, it is getting pretty late so I will go but I will update again as soon as I can. Thanks and God Bless!

I was right!

Yesterday Lillie didn’t have that great of a day and I said today would probably be a good one and I was right! She has had a pretty good day. She even hugged me earlier! It was so cool!. I was on the couch holding her and squeezing her and everytime I would loosen my grip on her, she would squeeze my arm with her arm! Every single time! At one point she also lifted her other arm and tried to either put it around my neck or just tried to put it around me. It was awesome!!!!
Well, that’s all I have for right now so I’ll go but I will give another update as soon as I can. God Bless!!!!!
Alicia

Good morning!

I say good morning because it is now 12:22 A.M. and Miss Lillie Grace just wound down about 45 minutes ago. She has been up off and on since 3:00 A.M. (more on than off). Our best guess is that she just doesn’t feel that good because when she was awake she was whining, but she never got a fever. Anyways, hopefully she will sleep through what is left of the night and have a great day tomorrow. It’s typical for her to have one lousy day and then the next day it was as if nothing was ever wrong. I guess if I had to feel the way she does all of the time it would make me a little grumpy too. I feel so bad for Nathan because when she is awake during the middle of night, regardless of who is handling the situation, he is usually awake and once he is awake it is hard for him to go back to sleep and he has to be up very early for work. I know it wears him down because his job is very demanding but he never complains about it. He is an incredible dad and wonderful husband.
Well, I better go for now but before I do I want everyone to pray for the Hart family. Their little Princess Hayley lost her battle with cancer early Saturday morning so please keep them in your prayers.Thank you. God Bless and I love you all!
Alicia

Hello!

Isn’t this website awesome! I am so exited about it and very proud of it! I will be updating the blog as often as I can so everyone will know how well Lillie is doing. I know we were doing the Carepages before when Lillie was still in the hospital and that kindof faded away, but I am definitly going to stick with this!  This last year has been about adjusting to our new way of life and doing anything and everything possible for Lillie, who by the way is our little warrior. She has come so far since last year, it’s remarkable. I won’t say unbelievable because I have known she was going to get better and she continues to do so. She is a fighter! She always has been and she will continue to fight!

I want to thank everyone who has taken the time to come to this website and read about my little girl.  And thank you so much to those who have donated. All funds raised on this website will go towards Lillie’s Hyperbaric Oxygen therapy. I hope everyone has a chance to read about the therapy because it can have pretty amazing results.

Good night and God Bless.

Alicia Johnson

What? I’m going to HOLLAND?? (posted by Toni)

I heard this poem on the radio one morning and I cried all the way to work. And then I stopped and thought about how Alicia and Nathan have had this AMAZING attitude about Lillie’s condition. They have truly embraced Holland and I’m so proud of them for that. What wonderful parents they are! I’m so glad someone (Emily Perl Kingsley) has been able to put into words the acceptance and gratefulness of life with a child with a disability. It’s a great inspiration and full of hope. Here’s the poem…hope you enjoy:

Welcome to Holland – Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this …

When you’re going to have a baby, it’s like planning a fabulous vacation trip … to Italy. You can buy a bunch of guidebooks and make your wonderful plans. The Colosseum the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says “Welcome to Holland.”

“Holland?!?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a new language and you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I planned”.

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Hello Friends!

Thank you so much for visiting Lillie’s website! It is still “work in progress”, but it is getting there! This website was made as a gift for Lillie, Alicia, and Nathan. Alicia will be giving updates to Lillie’s progress as she has time. If you read the “treatment” page, you could understand her time management is a little whacked right now! I’m sure she could use your encouraging words! Stay tuned as we will try to get this blog in a regular routine of the Johnson household! (o:

Hello Friends and Family!

Welcome to LilliesGrace.com and the blog. Watch from regular updates about Lillie’s treatment and progress on her road to recovery.