CRAWLING!
Lilah's PT, Laura, is going to flip out!
Lilah has worked SO hard for this...
GO LILAH!
Thank you God for movement!
Sunday, February 14, 2010
Saturday, February 13, 2010
Lilah saw snow!
Yes...it snowed in Savannah, Georgia!
Lilah giggled.
She LOVED the feel of it...even through the gloves!
Happiness.
Joy.
Contemplation.
Perfection!Friday, February 12, 2010
EEG Results
This morning Lilah had her EEG.
The LAST of the "lets rule everything out" tests.
I prayed, but above all I trusted God's plan for Lilah.
Results:
Normal!
So, that's it!
No more tests. No more questions.
Monday, February 8, 2010
Perception
I love how the Internet can bring so many people together and is a great resource of knowledge.
Through a few different blogs I came upon Barbara's blog. Barbara is a PT/OT. She has great insights for all kinds of patients with a wide range of disabilities. She recently posted on vision.
Please click HERE to read her thought-provoking post.
Thanks Barbara!
Sunday, February 7, 2010
The way she soothes herself
I have frequently gone to check on Lilah while she's napping and this is what I find:
I have been curious as to how she can be such a Houdini at 14 months old..AND
I use to wonder how she does this.
Here is the story:
Lilah is very tactile... Meaning Lilah uses touch to explore her surroundings.
She loves to put her hand inside my shirt and gnaw on her fist through my shirt.
In a way to soothe herself, she will take her left hand and reach over to her right sleeve. She then pulls on the sleeve with her left hand. She is trying to get her left fist inside her right sleeve to comfort herself. The harder she pulls to get that tactile sense, she will pull her entire right arm out of her shirt. I have often worried that she will choke on her shirt if it gets wrapped around her neck..so I check on her quite frequently.
At bedtime we roll her sleeves up so she has to work to get them unrolled and then soothes herself without removing her arm from the sleeve of her sleeper.My little cutie pie certainly is a magician...of sorts!
Friday, February 5, 2010
What more can I do?
For the last few months I have been taking Lilah to therapy after therapy after therapy. Some of those therapies come to our home. Lilah has made great progress. GREAT progress.
I am the type of person who is always thinking.... what is our next step. (I was worried that this may be a lack of acceptance. Thank you to Joey, my Ga Pines rep, for calming my fears and helping me to see that I just want Lilah to get and have the best.) I have been researching vision services in Georgia... Teachers, Therapists, Preschools, Services, Plans, IEPs, etc.
Even though Lilah is only 14 months, I am constantly thinking about what she needs to help her. What can I do better? What have I missed or forgotten? What are we as Lilah's team(me, PT, OT, VT, Representatives, Coordinators, etc) doing that is helping Lilah? What are we as her team doing that isn't giving her the absolute best?
I have learned in the past few days that Georgia doesn't have a preschool for Visually Impaired Children(0-3). Georgia is lacking Vision Therapists and Vision Teachers. There aren't great options here in this state for visually impaired children. From what I have been told, and read ,and learned is... that most children with vision impairments have other disabilities, too. So the vision impairment is usually pushed to the back burner. Children like Lilah, that only have vision impairments, are kind of...forgotten about. I have been told many, many, many times that "it could be worse" or "you are lucky it is just her eyes." These things may be true to other people, but in our home...this is our life. It is a HUGE deal to us. This is all we know. I do not know what it is like to live someone else's life, have someone else's child, or do what they do. I would never judge them, what they do, or how they cope. I am not asking for pity. I am asking for answers. For HELP! I am asking for Lilah to be able to receive services, treatments, therapy, help, etc. that she needs. That she deserves. Vision is what motivates us to change, move, laugh, play, talk, act, etc. With a lack of vision...delays occur.
Lilah is 14.5 months old and she is not crawling....yet. She is not pulling herself up....yet. She is not babbling very much....yet. Lilah isn't "doing" what they would like her to do. YET! BUT she is making amazing strides.
So my frustration is with the lack of services offered to visually impaired children in my state. My frustration is not, in anyway, shape, or form with Lilah. If Lilah never crawls, pulls herself up, walks, talks well, etc. that is perfectly fine. But I, her PT, OT, VT, Doctors, etc. know she will do those things. We all want the best for her!
Besides move to another state, what options do I have to help Lilah get the most and best she deserves?
I am the type of person who is always thinking.... what is our next step. (I was worried that this may be a lack of acceptance. Thank you to Joey, my Ga Pines rep, for calming my fears and helping me to see that I just want Lilah to get and have the best.) I have been researching vision services in Georgia... Teachers, Therapists, Preschools, Services, Plans, IEPs, etc.
Even though Lilah is only 14 months, I am constantly thinking about what she needs to help her. What can I do better? What have I missed or forgotten? What are we as Lilah's team(me, PT, OT, VT, Representatives, Coordinators, etc) doing that is helping Lilah? What are we as her team doing that isn't giving her the absolute best?
I have learned in the past few days that Georgia doesn't have a preschool for Visually Impaired Children(0-3). Georgia is lacking Vision Therapists and Vision Teachers. There aren't great options here in this state for visually impaired children. From what I have been told, and read ,and learned is... that most children with vision impairments have other disabilities, too. So the vision impairment is usually pushed to the back burner. Children like Lilah, that only have vision impairments, are kind of...forgotten about. I have been told many, many, many times that "it could be worse" or "you are lucky it is just her eyes." These things may be true to other people, but in our home...this is our life. It is a HUGE deal to us. This is all we know. I do not know what it is like to live someone else's life, have someone else's child, or do what they do. I would never judge them, what they do, or how they cope. I am not asking for pity. I am asking for answers. For HELP! I am asking for Lilah to be able to receive services, treatments, therapy, help, etc. that she needs. That she deserves. Vision is what motivates us to change, move, laugh, play, talk, act, etc. With a lack of vision...delays occur.
Lilah is 14.5 months old and she is not crawling....yet. She is not pulling herself up....yet. She is not babbling very much....yet. Lilah isn't "doing" what they would like her to do. YET! BUT she is making amazing strides.
So my frustration is with the lack of services offered to visually impaired children in my state. My frustration is not, in anyway, shape, or form with Lilah. If Lilah never crawls, pulls herself up, walks, talks well, etc. that is perfectly fine. But I, her PT, OT, VT, Doctors, etc. know she will do those things. We all want the best for her!
Besides move to another state, what options do I have to help Lilah get the most and best she deserves?
Thursday, February 4, 2010
Another Milestone
When Lilah was born my mind began to race with questions, thoughts, how-tos, what-ifs...my brain went into overdrive. Having not known of her disability before birth, I didn't have time to prepare. When she was placed in my arms...Mommy Mode kicked in. Feeding, changing, loving, and bonding.
One of my concerns was whether or not Lilah would reach certain milestones because of her visual impairment. Having a child with special needs was new to me. I was learning. I asked questions, begged for more information and help, but was still so unaware and yet at the same time I am a MOMMY....My first and most important priority is to love my children with all my heart, figure out their unique needs as a person, and love them according to their personal love language.
I remember thinking about little things...crazy, small, out of the blue...where in the world did this come from type thoughts..."Will she smile?" (because she's happy or because like sighted children she is mimicking), "Will Lilah know when I leave the room?" (Separation Anxiety) "Will she be able to look in the mirror and know how beautiful she is?" "Will she crawl?" "Will she walk with or without a cane?" "Will she walk at all?" "Is it more than just her eyes?" "Will we ever really know?"
Yesterday, Lilah did something I have never seen her do. I was playing with her on the floor. I heard Sammie ask for something from the other room...so I kissed Lilah's head and proceeded to get up. I barely made it to the hallway and looked back and there Lilah was starring at me... crying.
She didn't want me to leave. She officially has Separation Anxiety. Something so basic, so little, so small... something that drives other Mama's nuts...warmed my heart. She is growing. She is learning. She is aware. She knows what she wants and that is a VERY good thing!
One of my concerns was whether or not Lilah would reach certain milestones because of her visual impairment. Having a child with special needs was new to me. I was learning. I asked questions, begged for more information and help, but was still so unaware and yet at the same time I am a MOMMY....My first and most important priority is to love my children with all my heart, figure out their unique needs as a person, and love them according to their personal love language.
I remember thinking about little things...crazy, small, out of the blue...where in the world did this come from type thoughts..."Will she smile?" (because she's happy or because like sighted children she is mimicking), "Will Lilah know when I leave the room?" (Separation Anxiety) "Will she be able to look in the mirror and know how beautiful she is?" "Will she crawl?" "Will she walk with or without a cane?" "Will she walk at all?" "Is it more than just her eyes?" "Will we ever really know?"
The questions went on and on and on....
Yesterday, Lilah did something I have never seen her do. I was playing with her on the floor. I heard Sammie ask for something from the other room...so I kissed Lilah's head and proceeded to get up. I barely made it to the hallway and looked back and there Lilah was starring at me... crying.
She didn't want me to leave. She officially has Separation Anxiety. Something so basic, so little, so small... something that drives other Mama's nuts...warmed my heart. She is growing. She is learning. She is aware. She knows what she wants and that is a VERY good thing!
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