Please take a moment

to pray for two special girls.

Ashley (Ashley's Journal) and her family are in need of support and strength. Sweet Ashley is in distress at this time. Time will give the doctors and her family answers. Waiting is the most difficult and discerning times for the children and their parents. Click on Ashley's Journal to read more specific requests from Ashley's mom.

Please send your love and support to
Copeland Farley's family.

God bless +

peek-a-boo

5 Minutes For Mom posted an article about Ivey and her :bitty braille: t-shirt on their site. It is a true blessing that so many people love and think of Ivey. We are all blessed.

bitty braille

Doesn't Ivey look precious in her new shirt! Thank you :bitty braille: for thinking of Ivey. Thank you to 5 Minutes for mom for making the connection.

My pink happy baby is back. Long story short, things were worked out and her breathing treatments have been switched back to Xopenex. For the record, it makes the difference between a happy smiling pink colored little girl and an irritable coughing pale little girl. Ivey could not clear her lungs to breathe well. Yeah to Xopenex.

Ivey also had a GI appointment this morning. He was happy to see her chunky monkey thighs. So now Ivey weighs a whopping 14.3 (give or take a few). That’s 14 ounces of weigh gain since June. Whoo-hoo.

Other than that, all things are plugging along-what I am really trying to say….things are pretty boring around here. Well with a couple of exceptions, but more than likely no one, especially me find them exciting. It’s naptime around, and somehow Walker has developed a case of ‘mommy I have to poop’ at the sound of the word nap. (This has been happening at every nap and bedtime.) This scenario will take a good thirty minutes of naptime. It exhausts me, he laughs, Ivey needs a feeding, Knox needs ‘quite time’ (yeah right) and I am trying to figure out when bodily functions, especially other people’s body functions, will stop dictating my life. At this very second I am rolling my pants legs up because there seems to be no escape from poo.

Oh, and that brings me to one of the last things that the GI doctor said to Ivey this morning. Upon wondering if she had a little compacted poo, he helped her poop some out…..I’ll leave you to wonder how he did that. He noted that it was of good consistency and that ‘wow IT smells’ as he carried the ‘tainted glove’ from the room because other patients would be using the room today. So - is it a compliment to our little sweet pea that the doctor who tends to deal with poo more than the average, thinks that her poo is a little on the stout side? What is it they say …? Dynamite comes in small packages.

I received this as an email tonight. Just wanted to share it with everyone. g.

Ivey Kisses

Ivey gave away her first kisses today. She rolled her bottom lip under her top lip then made a little 'pop' sound, followed by a grin of course. Tonight she gave the boys good night kisses. (She is only doing it when someone kisses her.) So sweet.

She is imitating more and more. This week she started making Indian sounds when I put my hand to her mouth. Now she can do it with her own hand. This morning Walker was crying and she scrunched her face up to cry too.

Every time she takes a step back (like last week with seizures) she rebounds 10 steps ahead of where she was.

uhhhh...

I have been trying to create some exemplary title to this post just to portray the emotional ride of this past week. Can't think of one-my mind is mush. So quickly I will condense the madness of the past week into a few short sentences and pictures and forgo the minute details and give the great overhaul.

Last Tuesday Ivey had another seizure. For the record, I should not get so worked up over them – they are here to stay- just part of it. We just need to nail down what and why these might be happening. For now, they are happening because of her genetic condition, which basically say ‘no one knows’. However, for the record, they scare the daylights out of ya. Hence, we (me, Matt and Ivey) spent the day here in the ER. Thanks to M. and T. for picking the boys up from school. Wednesday while I was taking Walk to school, she had another one. Therefore the neurologist wanted her at the Scottish Rite ER. Hence, we (me, Stacy and Ivey) spent the entire day and evening in the Scottish Rite ER. Matt and my dad held down the home front. Thursday early am the neurologist decided he wanted Ivey in his office, which is across the street from Scottish Rite. This time we (me, my dad and Ivey) spent the day in his office and in traffic while Beth and Willie held down the home front. Friday I canceled her appointment at Scottish Rite which had been planned for two months. Enough is enough.

That brings us to this weekend. Walker had one heck of a birthday weekend. So, yes we are exhausted, but wouldn’t trade it for the world.

Day One:
The Tailgate








Going for BugJuice








The Game











Cake made by Gran-Gran (my dad)









Day Two: A few of Walker's friends from school


Back in the saddle again.......
Can you guess which book we are reading right now?
You got it. It's Wilbur. We decided to name the spotted pig Fern, and she is a he. We even had chicks. Surprisingly they all made it through the day. Even though Walker tried to wring one's neck. Literally - he almost loved them to death.

kindred spirits

Ivey continues to be graciously blessed. Last Thursday Ivey stood in her very own stander for the first time. Bittersweet is the only word to describe the moment – the memory. Earlier this summer a family lost their little girl. The family knew of Ivey and decided to pass Maddie’s equipment on to Ivey. Humbly we accept the equipment that will help to change Ivey’s life and help to give her wings. As overjoyed as we are, it is unimaginable the road as to which we come to this place. Bittersweet.

Thank you. Words can not say enough.

loving her new stander

Ivey is up and standing. She has on her new shoes and AFO's. Heather, Ivey's speech therapist, gave her the green tube last week also. Ivey will chew on any tube she can get her hands on (she may be blind, but she can find any of her tubes) like her suction tube, venting tube, feeding tube, nebulizer tube and her humidifing tube. This tube is actually made to be chewed on, can you believe that? She loves it. She is great a manipulating it with her hands.

ivey's new stander

Whenever you hear us talk about Ivey's passy, we are talking about the purple thing you see one her trach. {When I first saw her passy I wondered why on Earth they made it purple so that it stood out so much. What you won't see here is her coughing it off and it shooting across the room like a bullet. It's purple so that it can be found easily.} Her passy is a one-way valve that allows her to breathe in through the trach, but push the air up and over her vocal cords, thus allowing her to speak (or make lots of noise in her case). Ivey has been pracitcing with her passy for a while. She has been working up to longer and longer intervals with it. The passy does make her cough, which is normal.

Ivey also has new conformers and they are much larger than her last pair. This pair finally 'flipped' her right lid out. Now her lashes on her right eye are out and not folded under the lid. She has really long lashes!!

We are going to miss you Rebecca! Thank you for arranging everything with Maddie's parents. You are one incredible PT! We'll see you in a couple of weeks and then again in a year and a half.