"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Friday, February 25, 2011

SURPRISE!! We're going to...

So, off we go....

The kids are running the kids races tomorrow. Even Lilah. She will be walking with her walker in the 100m run. Think about that....
How inspiring will it be for her to know she did that? But even better than that...
for all the Mamas watching her cross that line to know that if Lilah can do it, then yes...they too can run 13.1 miles...and so can I.

Princesss Half Marathon...Team HOPE... Three of my friends and I will have on black tanks with HOPE monogrammed in HOT PINK on the front, tiaras, and tutus. I run for Lilah. I run because she is NOT alone in this fight. I am with her. 10 months ago I wasn't a runner. Today, I am. What an accomplishment for the two of us...for all of us. So, here we go...Disney...RIGHT NOW!

Wednesday, February 23, 2011

Sunday, February 20, 2011

Friday, February 18, 2011

"I don't know how you do it."

I hear that phrase often. I am not sure why, but in my two short years as a Mom to a Special Needs child, I have had a LOT happen to me. The last two years have come with more lessons than I was prepared for.

At the beginning of Lilah's diagnosis, friends and family came out of everywhere trying to "help, pray, support, love." Most had never been near someone with a special needs child. Most didn't know what to say. Most tried as hard as they could to help, but no one really got it. As Lilah has grown, the number of calls, emails, visitors, etc have slowed down to an almost screeching halt. At times this journey has actually cost me friends. People I really thought cared about me. People I thought loved me, wanted me around, and would stick by me through anything. Some couldn't handle that the "new Katie" didn't sit back and get hurt, she was fighting for herself, and her daughter, and stopped allowing people to walk all over me. Some people got tired of "Lilah's story" and needed more "normal" friends with less "drama." a friend of mine who's husband is in the military and deployed often said, "it's kind of like people during a deployment. Many come out at the beginning to offer food, prayers, and babysitting, but as the months turn into over a year, people stop helping. They have had enough. They forget that your pain never went away. You are still in the predicament, even if they walk away to ignore it." (this is not a sad post, keep reading)

The people that stopped being my friends, walked away, didn't know what to say, couldn't handle "it" or me(the loud-mouthed Mama) had to be removed from my life. It sucked. It hurt. I mean it rocked me to the core where I cried day and night, BUT....I was relying on them to fill a void in me that ONLY Christ can fill.

I had to be completely broken, left alone in the bottom of the pit to see that I needed to rely on God for it all, for ONLY He is the constant. People are imperfect, messed up, say and do the wrong things, but only God can heal wounds or holes in our hearts.

God took people from me that I couldn't let go of. He took painful relationships from me because I allowed these "friends" to hurt me and I never said and did anything. I was the doormat. I allowed them to treat me like I had no worth. Having Lilah, having to work and push and fight for Lilah, allowed me to see more than just my worth, it allowed me to know my importance to God and my family. I am not bitter or angry with these people. I pray for them daily. I know that they need a deeper relationship with Christ so they can love others fully, so they can see people through His eyes.

During this time, I also began to try things I never would have before. I began running. I ran my first 5K last April. I ran my first 10K in November. I have been training, since June, for a Half Marathon. On Sunday, Feb. 27th I will be running the Disney Princess Half Marathon. I have had people ask me , "Why are you running?" or in a laughing tone, "You're still doing that?" YES!!!

I don't just run for me, for release of stress, time to pray,better health....I run for Lilah. Go back and watch my testimony from a few posts back. Look closely at the time when she cries and you can see those tears flowing down her cheek from fear and pain. I run because being a Mom of a Special Needs child requires me to get out of the bleachers, stop being a spectator, and fight. When I run and my legs are heavy, I see Lilah's face. I see how hard she works. I know that if my girl can fight to learn to walk, talk, and do "normal" skills...then I can get out and run and push harder each time. I run for my girl. I run because she motivates me to try harder, do something I have never done before. I cannot ask her and coach her to push and work hard if I don't require it of myself.

The Lord has taught me so much through Lilah. He has given me strength to do things I never would have before. He has taken things(and people)from me that I couldn't let go of. The lord has guided me to focus on the important things, and leave all the small stuff out. He reminds me, daily, to give it all to Him. He will sort it out. I must lay it at His feet,walk away, and allow Him to heal wounds that no one else can.

I do it "all" because He gives me strength. I am not superwoman. I am not super Mom. I am just a weak, imperfect human trying to do better each day.

Grateful for the lessons I have learned, and for those painful ones I have yet to learn. I am allowing Him to mold me, because fighting against Him is so much more lonely and painful than growing close to Him.
Thank you, God, for lessons only you can teach.

Thursday, February 17, 2011

GREAT news and a VERY happy Lilah

Today we started with Lilah's new PT. I was, quite honestly, VERY nervous, but I prayed and prayed and asked for prayers, and walked in knowing that I am her advocate, I know her best, and I know what she can and cannot do.
Her new PT came out with a student next to her, asked if it was OK that she help. I said, "sure." She asked me what my goals were, and I was very bold. I said, I dislike how this walker hits the back of her feet, gets stuck on her AFOs, and scares her more than motivates her. I said, "I want you to push her. I know you need to. I won't get mad if she cries. I want to be there to help. I won't cry, but I will want to." I told her that I just wanted her to talk to Lilah and prepare her before she does anything to or with her.
She watched Lilah walk and immediately agreed that Lilah needs a new assistive device. WOOOOHOOO! (FINALLY, I am being heard!!)

The new PT said she thinks Lilah needs to go down to an SMO on her left foot, but keep the hinged AFO on her right. (YAY! For small little improvements!)The entire time we talked Lilah was very quiet. She was obviously taking it all in. She would work with the new PT, but she didn't babble much. I wondered what she thought of all of this and then...

She went to work with Sarah, her OT. By the expressions on her face, the laughter in her voice, and her good mood, I would say that Lilah is happy with the changes....
and she really loves Sarah. But, don't take my word for it. Just watch this:

Don't you just LOVE that Sarah praises her, motivates her, and allows Lilah to be herself?!! ME too!!

Wednesday, February 16, 2011

The problem is...

I can stand and coach Lilah to walk over, and over again, BUT, I don't think her walker should cause problems. I believe an "assistive device" should be just that....an assistant. Lilah's walker gets stuck on her foot, over and over in less than 50m of a distance. I have raised this concern with the PT over, and over, and her response was, "I see it as motivation to make her walk." I see it gets stuck on the top of the AFO, the back of her heel, and other places. Yes, Lilah has a wide gait, but I don't think Lilah should be getting scared of her walker because it pops her in the back of the leg. I asked the PT if we could try turning the walker around or a different device and I got a "No, she's not ready for that because..."

Watch this and see what I mean...

The problem I have with the PT telling me no is this: I am her Mama. I am with her 24/7. I am NOT the kind of Mother who hands her child to you, sits in the waiting room at therapy and plays on my phone. I am THERE. I coach, I help, I sing, I do jumping jacks, anything to distract her from the pain she is feeling. At home I do what they tell me to do. I patch her for 5 hrs/day. (If she takes one off, I put one back on.) I am determined! My wheels are always spinning with ways to help Lilah more. I have heard some of the "pros" tell me that Lilah is not "cognitively there." Oh really....well, my child, the one you are deeming "globally delayed/mildly retarded" is potty training and LOVES it. She tells me when she needs to go. She poops and pees on the potty and claps for herself when she does it.

So, here is one of my problems: the O&M specialist, who actually works with VI people, told me Lilah's walker is not correct for her. The O&M told me Lilah really needs something in front of her to warn her of what is coming. When I mentioned this to the PT she said, "I feel like I can't do anything right." OK, I am NOT here to hurt anyone. I am a HUGE part of this "team." When I tell you I see something, notice a change needs to be made, have another member of our team make suggestions, we cannot take it personal. My job is to inform you as much I can about Lilah so we can learn and grow as a UNIT! My goal, my fight, my determination, my will.... is for Lilah.

I believe that Lilah is a sponge that is absorbing all of this information and is SO ready to spread her wings. Our "team" needs to work together to help Lilah fly. Today Lilah has an evaluation for speech at Backus. Tomorrow we begin with a new PT. I am nervous about this new PT because I hear she is "stuck in her ways" like the other PT. We, unfortunately, didn't get the PT we had hoped. I am praying that the new PT will listen to me, understand my concerns and be willing to try something, even if it fails. If not....we will be leaving Backus and going to a new clinical setting for PT. ( I pray that doesn't happen because Lilah LOVES her OT, babbles with her, giggles, loves her, and is making great strides.)

Being an advocate for Lilah has taught me a LOT. Being an advocate means sometimes making people mad, but I pray that as I learn and grow, I can do this advocacy thing better and better. Prayers are greatly appreciated!

Tuesday, February 15, 2011

The best Hugs...ever(and a prayer request)

She doesn't just HUG...
She wraps her arms around your neck, pulls you in close and squeezes you as hard as she can...

and she adds a little "ugggg" noise through her nose too.
Thank you, God, for the gift of these hugs.
*PLEASE pray for an opening in Lilah's ENT's surgery schedule. We saw her ENT this past Saturday and she needs re-tubes(one fell out and the other is on the edge of the ear) and an adenectomy(her adenoids out) Last night Lilah cried from 12:30 am-2:30 am non-stop. This is VERY un-like her. We are praying that she be on the schedule soon and she will be able to be pain-free. Thank you VERY much!*

Monday, February 14, 2011

My Testimony.

I promised I would share.

Click HERE if you would like to see my testimony, and Lilah's story, shared at my church this past weekend.

Sunday, February 13, 2011

What I needed...

I needed to be changed.
I needed to learn.
I needed to know that God was with me.
I needed to be loved.
I needed to learn to fight.
I needed to grow.
I needed to find my voice.
I needed to shine His light that was hiding in me.
I needed to love like HE loves.
I needed to be humbled.
I needed to be transformed.
I needed to feel pain.
I needed to feel JOY.
I needed to see HIS face.
I needed to understand that there is more than this life.
I needed to understand true HAPPINESS.
I needed to understand the depth of LOVE that God has for me, and YOU.
and God needed me to know...

So, He gave me Lilah.

My Mom sent me a card with a quote from Helen Keller:

"Life is either an adventure or it is nothing."

Thank you, God, for the adventure!

Thursday, February 10, 2011

Eye Doctor and Neurosurgeon Visits

In less than 24 hours we had two very important doctor visits for Lilah. On Wed. Feb. 9th we went back to Atlanta to see Dr. Marc Greenberg again. A few days prior Paul, from Angel Flight, called and said our mission had been picked up by two different pilots. We would fly to Atlanta with one pilot in, one plane and the return to Savannah in a different plane with a different pilot.

So, yesterday morning we boarded a plane and made our way to Atlanta. This plane was a twin engine 6 seater. Lilah and I got cozy in the back. She really liked my headset!

Then she decided she needed to look out the window before take off to make sure everything was ok.
At take off she didn't cry. She actually giggled and raised her hands in the air. WEEEEEEE!

Daddy sat up front with our pilot, Mark. Mark is a flight instructor and was very happy to learn that Aaron has his pilots license.( A gift from Aaron's Dad when Aaron was 21)

Aaron had a great view right up front! Mark talked to Aaron about his kids, his wife, his job, flying, and much more. He was a very kind man!

He told Aaron to take the wheel. Aaron was a little nervous at first because he had never flown a twin engine.( Aaron has his single engine license.) Mark gave Aaron pointers on trimming the plane and how to read the instruments in this type of aircraft. So, Aaron flew us almost the entire way there! How cool is THAT?!!

Can you tell I am really proud of my husband and love him very much?

Lilah and I sat in the way back and had a great time. She was just as happy as can be!

She had a great time checking everything out and decided it was more fun to play with my lens cap. Little stinker didn't want me to have it back!

We just laughed and played and snuggled all the way up to Atlanta.

Lilah sang most of the way!

When we got to Atlanta, Paul from Angel Flight was there to greet us at PDK. The staff members at Atlantic airport fell in LOVE with Lilah. They even gave her an awesome little toy!

We got a taxi and headed to Scottish Rite Hospital. We were the first ones in the office after lunch so they took us back right away. Dr. Greenberg came in and asked us how things were going. I told him that I have noticed changes in her eyes. I told him that I thought her right eye(the Peters eye) was more clear and that the patching was working. I said, "To me, it seems straighter, less turned in and that it works better." I told him I believe the eyes converge, work together, and work alone. I told him about the simple tests I do at home and what I notice.
He did a few tests on her eyes, and really watched her. He opened her eye lid way up on both eyes and got a great look at how they have changed. He said, "That eye seems much clearer" pointing to her right eye. Then he said, "And that left eye, it is nearly PERFECT!" (Yes, you read that right! No surgeries and she has an almost perfect eye and her right eye is clearing ON ITS OWN!! THANK YOU JESUS!!!!!!!)
Then he sat back and talked, whistled, played with toys and really studied Lilah's eyes. He said, "I think you are right. The right eye doesn't seem as turned in. The patching is working. So, I know it would seem like we would back off, but actually we do the reverse. We increase the time. So, your goal is 5 hours a day."
I said, "OK. I'm on it!"
He went on to tell us that Lilah will probably need a muscle repair surgery because her eye muscle is still probably really tight. He said that usually the patching can only do so much and we will want to help it.
(This is where my faith, and my prayer life, takes over. I know what he said, BUT, I also know what God can do. Lilah wasn't suppose to see. AND she was, at BEST, suppose to only have one eye. She now sees with BOTH eyes and hasn't had a surgery. God can do anything!)
Dr. Greenberg went on to say that we would need to do the surgery and then get some pressures, thickness tests, etc while Lilah was under anesthesia. He said that right now she fights too hard and it isn't worth it to try in house. She would need to be sedated to get a proper reading.
He also told us some possibilities for her future. He said that glaucoma is still a BIG risk for her and that she may, in the future, need to be on medications to help that. He warned us that glaucoma could still steal her vision.
He asked me what she sees when she's patched. We talked about the toys, food, crawling, walking with her walker, etc. He said that if she could see a cheerio on our table, while she is patched that that would mean her vision would be in the 20/80-20/200 range.
He said that he wouldn't be surprised if, when she speaks, that she tests near 20/80.
THAT is the third time he has said that number to us in the last 3 visits.
God is way too good!!!!(at birth she was 20/800 at best!)
So, Dr. Greenberg said, "Keep up the good work, and I will see you in 6 months!"
I called Bernadette with Angel Flight and we got a taxi and headed back to the airport.
This time we met Robert, a flight instructor from Atlanta and his student, Paul. We boarded the Saratoga to head back to Savannah.
On this flight we all sat in the back. Together as a family.
I put a patch back on her eye to keep this miracle going strong!

Aaron and I took turns snuggling Lilah the entire ride home.

And I took some really awesome photographs of the view outside my window!

Check out this next image!!!
Look closely....

Do you see the cross in the light?(no, I didn't edit it that way. THAT was all God!)
We cannot begin to thank Mark, Robert, and Angel Flight for this amazing gift they have given our family. The opportunity to fly to see Lilah's specialist, not be gone 13 hours in the car round trip, have to find sitters for our children before and after school....PRICELESS!

Today Lilah had an appointment with the neurosurgeon. We saw Dr. Wil Thompson. I had heard many stories about him. Some were not so great, some were really fantastic, but I wanted to meet him and make my own decision. I prayed long and hard about this visit and realized that today was JUST a visit. That no matter what he said, we would get a second opinion JUST to be sure. We are talking Lilah's spine here.
So, we met his NP first. She asked me ALL the history about Lilah. I filled her in on the last two years. She examined Lilah, her sacral dimple, her legs and her feet.
Then Dr. Thompson came in. He examined her legs, feet, sacral dimple, asked us MANY questions then he asked us to come in his office and review the MRI results.
He showed us several images of Lilah's spine. He showed us where Lilah has an extra vertebra. She has an L6. He showed us several things, then we discussed the brain portion of the MRI.
He told us he didn't see any true "tethering", any signs of Spina Bifida, and he didn't see any problems with the white matter in her brain. He said that in the one cross section he could see how the radiologists could say there is a volume loss, but it was because Lilah has a thin corpus callosum. He didn't see anything to worry about and he recommended that we do NOT do surgery at this time. He would like to see us back in 6 months to check Lilah's progress with PT, OT, ST, and potty training.
Aaron and I are very cautiously optimistic. We will be getting a second opinion JUST to make sure that there are no stones left un-turned.
We are VERY grateful for all the wonderful news this far.
And tuesday....
I had to make some VERY hard decisions to help benefit Lilah's future.
I made the decision to change the PT and the ST. This came with VERY much prayer, a LOT of tears(from this Mommy) but knowing what Lilah can do....I knew it was time for a change.
Being an advocate is NOT easy. Making choices for your child is hard. But, my job is not to keep friends...my job is to get Lilah the best care possible. I love these women VERY much, but at this point in Lilah's care, she needed a change.
The future is open and endless for Lilah...
and God is so very, very GOOOOOOOOOOD!

Love her singing in the morning

Wednesday, February 9, 2011

Missing out because we are going to Atlanta

This morning we will be getting on a plane and flying to Atlanta. I am so grateful to Angel Flight for this awesome service. Pilots volunteer their time, fuel, and planes. Angel Flight gives them a tax deduction and the pilots get to register the hours they flew to remain current with their license. And our family gets a free flight to and from Atlanta(on their personal planes) for Lilah's specialist. It is a win, win for everyone! (instead of driving 11-13 hrs in one day, we are only gone from our older children for a few hours, and sometimes not much longer than school getting out)

Today will be a first (I think that life with a Special Needs child is so full of firsts!) we will be taking one small plane to Atlanta with a pilot we have never met, then we will return on another plane with another pilot we have never met. A little nervous on that one, BUT...trusting that the Lord made this possible for us so we could have a quick visit and get back to our children. (quick is relative to me. Some of our visits with Lilah lasts hours then we have a drive ahead of us, so if the visit lasts 2 hours today and we don't have to drive...perfect!)

I am not that nervous about the visit...not yet. I am more saddened because I will miss seeing Alex, my oldest, receive awards today. She made HIGH honor roll (93 and better), she doesn't get into trouble, she follows directions, she is the student all teachers wish they had. She is funny, creative(my girl will be an artist!), and has one of the biggest servants hearts...ever. I will miss her receiving her awards by 10 minutes for the flight today. I have apologized with tears in my eyes over and over...and she said, "Its OK. I will ask Miss Michele(my friend who is picking them up from school) to call you and tell you all the awards I got." She let me off the hook that easy. Really?!! Not for me. I am overtaken with guilt,grief, and hurting because I am missing it. I need to be there. I need her to know that her Mama doesn't just fight for Lilah, I fight for her too. (for ALL of them)I need her to know that I am more proud of her than she will ever, EVER know. I HATE that I will miss it. To all my friends who will be there today, PLEASE clap and cheer for Alex as loud as you can...for me. Thank you, signed Teary-eyed Mommy who will miss the ceremony.

Today in Atlanta, I do believe that Dr. Greenberg will be very impressed with Lilah's eyes. I have done several tests, on my own with her. I have patched, like a crazy lunatic. I make sure she wears it. To the point that when she peels one off, I put another one on. I do my very best to get to 3-5 hours a day. I believe it is paying off. I see her eyes converge together.(meaning she uses BOTH of her eyes) I have done test with many different objects to see what each eye can see individually and then together. I will say this today, tomorrow, and always... Lilah is a miracle. She can see. I don't know what and how much, but she sees with BOTH of her eyes...and she has NEVER had a surgery. That is a huge praise and is ALL God.

I am nervous about the tests today. Lilah has gotten very smart. She knows when you will put something near her face. I am praying that Greenberg can get her pressures, thickness, run tests, dilation, etc without Lilah struggling too much. I am waiting because I feel strongly that he will say she needs an EUA (exam under anesthesia) and that means another trip to ATL, more missing out, more planning, etc,etc. BUT... I will do whatever needs to be done for Lilah...for all of them.

I am asking for prayers today. Prayers for a safe journey too and from Atlanta. Prayers for both pilots. Prayers for both planes. Prayers for Lilah to allow Dr. Greenberg to do the tests. Prayers that Greenberg will see what I see and be as blown away as I am. Prayers that I will be at peace having to miss Alex's awards. Prayers for my friend Michele watching my kids along with her four.(love you, Michele. Thank you!!) Prayers for peace and trust above all.

Lord, please be with Aaron, Lilah and I as we fly to Atlanta this morning. Please give Lilah peace and calm during the tests. Lord, I ask that you please fill Alex, Sammie, and Eli with LOVE and let them KNOW that their Mommy and Daddy love them very much and hate to be away from them. Please fill my heart with peace at having to miss Alex's awards. Please be with the pilots today. Please guide them with your eyes, ears, and hands as they fly these planes. Please keep us safe during the trip to and from Atlanta. Please let us shine your light for all to see. We know that you gave us Lilah so others could see you. I know it from the way each picture I take of Lilah, YOU are there. It is obvious in her eyes, the light, it all. YOU are with her. YOU created her. YOU gave her to me. THANK YOU for trusting me with this MOST precious gift. I pray that I am honoring you with all that I do, especially with my family. Thank you, in advance, for what I know we will hear from Greenberg today. I cannot do anything without you, Lord. YOU have given me strength, determination, and WILL to fight this battle. Thank you for growing me. Thank you for humbling me. I am grateful and amazed. I love you Jesus. Amen.

Friday, February 4, 2011

HUGE accomplishment

After several mornings of finding Lilah soaking wet...

She unzips her sleeper, puts her hands down and removes her diaper. She hates the feeling of being wet. She hates the cold wet diaper. AND she will vocalize "pu...pu" when she has to go number two.

Now, I am quite certain someone is reading this thinking, "Katie, really?!!? You are sharing your daughter's bathroom habits with us?"

Yes, I am! Lilah may not be walking yet, or speaking words you can fully understand, BUT...

Yesterday, I bought her a potty seat that makes noise when she "goes" just to introduce her to it. I put her on it twice last night. She LOVED it. She was happy, smiling, singing, giggling...proud of herself.

So, this morning when I heard her at 6:37 talking in her crib. Again she wet the sheets and had pulled her diaper off. So, I took her to the potty:

and she smiled and sang and we "talked." Eli came around the corner and asked what she was doing. I told him that she was trying to go potty. A few minutes later Lilah started to make the "pu...pu" sound and she did it! She pooped in the potty!! Yes, you read that right! Aaron jumped out of bed and ran in the bathroom. We clapped and cheered sang the potty song,"Poopy in the potty." Lilah was VERY proud of herself.
And she got a little shy...

This got me thinking: I keep hearing "professionals" tell me how Lilah will follow a certain "developmental curve." Really? Let's think about this again for a minute...

My girl isn't walking unassisted yet, talking in sentences, but she is using the potty. I say, "Take THAT!" To all those who say she is delayed and "mildly retarded/globally delayed" or any other term. My girl just figured out how to use the potty, gave me signs and clues to do it, and was VERY proud of herself.

She even got some really sweet kisses and snuggles from her big brother!

None of us know what Lilah WILL do. Only God knows. But...I believe..

Lilah will do it all. I believe it. I have faith in this. I believe God has a MASSIVE purpose for her.
Lilah has opened my eyes to so much and she has taught me to see.
She will knock the socks off of us.
Just you wait and see...
The Lord has plans for her.
I cannot wait to see what He has in store.
Thank you God for today. Thank you for showing me that checking off a box doesn't show her worth, what she really can do, and what she really is...
She is Lilah...and she is AMAZING!