Saturday, June 27, 2009
Friday, June 26, 2009
Yesterday was a very long day. We woke the kids and put them in the van at 4am. We drove to Atlanta for Lilah's appointment, took them to the aquarium, and made it back home at 10:30pm.
Normally Aaron and I take Lilah alone. Normally we are so full of emotion and do not really know what to think, say, or feel. This time we added the kids to the mix, so we are still recovering from the trip; not to mention Aaron had a surgery today.
Okay, so I have tons to tell about Lilah's visit with Dr. Lee.
- Both of Lilah's corneas are clearer! PRAISE GOD!
- Lilah's pressures were great. (18,19) AND she was fighting so they were probably even lower than that.
- Dr. Lee does not see any Nystagmus (yet) in Lilah's eyes. (Another Praise!)
- No Glaucoma is present right now.(Another praise!)
- I asked what Lilah's visual acuity is right now and he said "20/100 in both eyes"
- Lilah's diagnosis has been changed:
Dr. Lee said that if Lilah does have Peters, it is an extremely mild case. He said that certain parts of Lilah's eyes did not form properly. I asked him a million and one questions. I told him that I had heard that Glaucoma can be present, even if pressures are good, and still cause damage. He said that Glaucoma is not a perfect science and that the only information they really know for sure is that one way to stop the symptoms is to control the pressures. I told him that I wanted to know if Lilah's retinas and other parts of her eyes were okay. I told him that Lilah had an ultrasound of her retinas at 12 weeks at Dr.D's office, (and they were good)but I wanted to know if there was any unseen, unknown damage. I also asked if she would need glasses, and when.
I asked and asked and asked.
When he was finished examining her, and as we asked questions, I sat Lilah up facing him on my lap. The entire time we talked, Dr. Lee stared at her and at one point said, "See she's looking right at me. She can see me!"
This is what our next steps are:
- Keep Lilah's pressures under control by giving her the Trusopt drops 2x a day(Glaucoma is still the largest side effect and could take what sight she does have)
- Keep strengthening the muscles of the eyes by stimulating her with lighted toys
- We go back to see him on 7/30/09
- Soon Dr. Lee will want to do a procedure on Lilah where he will put her to sleep and do a much more thorough exam of the eyes. He said this would tell us her prescription and if and where there is any damage
- CONTINUE to pray daily for complete healing
Dr. Lee said, "I know I say it each time you are here, but it is unbelievable how well she is doing." He said he is still amazed at her progress. THANK YOU LORD!!!
The best part of the visit was when he told us that Lilah's left eye is near perfect and will not need transplant surgery. He is still not sure whether he will need to do the transplant on the right. But she can see something out of both. He said she will definitely have vision in her left eye and at worst be legally blind in her right. That is incredible news!!!Aaron and I are beyond grateful for the prayers. They are working and the Lord is hearing and answering them all. Thank you for your continued support, love, and prayers. We serve an amazing God!!
I told Dr. Lee that Lilah is our miracle baby. He said, "She sure is. Take care of your miracle!"
Wednesday, June 24, 2009
Tuesday, June 23, 2009
Monday, June 22, 2009
Sunday, June 21, 2009
Friday, June 19, 2009
Wednesday, June 17, 2009
there are parts of me that wished I could've said...
"Excuse me...how dare you?"
"Does my child look like a cartoon duck?"
something very not nice
I took the opportunity to tell Alex and Sammie(Eli would not have understood)
"People may judge and say mean things about your sister, but we never say those kinds of things, right?!"
And my girls said...
Tuesday, June 16, 2009
Monday, June 15, 2009
Friday, June 12, 2009
Here are the Lyrics:
My life has led me down the road that’s so uncertain
Now I am left alone and I am broken
Trying to find my way
Trying to find the faith that’s gone
This time I know that you are holding all the answers
I’m tired of losing hope and taking chances
On roads that never seem
To be the ones that bring me home
Give me a revelation
Show me what to do
‘Cause I’ve been trying to find my way
I haven’t got a clue
Tell me should I stay here
Or do I need to move
Give me a revelation
I’ve got nothing without you
I’ve got nothing without you
My life has led me down this path that’s ever winding
Through every twist and turn, I’m always finding
That I am lost again
Tell me when this road will ever end
I don’t know where I can turn
Tell me, when will I learn
Won’t you show me where I need to go
Let me follow your lead
I know that it’s the only way that I can get back home
Wednesday, June 10, 2009
She LOVED it!
It was a lot of work for her body and her senses.
Then I decided to use the Bumbo
Which she liked better because she didn't have to work her abs as much
Monday, June 8, 2009
I am quite happy to report that it went GREAT!
I told Lilah's PT, Dr. Jennifer Lander, as we were talking about Lilah and working with her, that I am very sensitive when it comes to Lilah. (Thank you Barbara for the suggestion.) I told her that I am always wondering if I am doing enough to help Lilah, if I am over stimulating her, or if I am doing it all wrong.
Sunday, June 7, 2009
Lilah's initial evaluation with BCW was hard for me. VERY HARD. It was done on my birthday and the PT had the nerve to ask, "Are her toes like this because of her syndrome?" I went off..."Lilah doesn't have a syndrome. I had a blood test done to prove that she is of normal chromosomal make-up. Her eyes, her condition, it is an unexplained thing." Again....the questions. (I don't care who you are. If your question about my daughter offends me...watch out! So...just don't ask. I do not care how curious you are. Curiosity killed the cat! Lilah is my child. I am sensitive about her. I have a right to be. If you don't like my sensitivity about her...get over it!!)
So Lilah's PT is the same person who made the comment. She comes tomorrow morning. I pray she is more thoughtful. If not....I will request another PT. I pray to hear from the vision therapist SOON!
My coordinator for BCW is GREAT! She gave me tons of material on vision impairments,etc. I told her exactly what I needed, how I needed it, and what was best for Lilah. I was SHOCKED to receive a pamphlet about the Savannah Association for the Blind that works with visually impaired preschool children. This got me thinking...frustrated and not understanding how something SO close by was NEVER offered to me by the MD who diagnosed her. (I know this guy has a great brain, but COME ON...DR. D....grow a heart!! This prompted me to write the post below.)
Saturday, June 6, 2009
This is frustrating. Whether a disability is known, rare, seen in x number of births,etc,etc. Doctors, specialists,etc. should have a system, a booklet, ANYTHING to give parents when they tell them the news that their child will forever be different. Doctors should not just deliver awful, painful, shocking news and then walk out of the room. Someone in their staff should help you through the process. Someone should tell you where to go....without you having to ask. Someone should say something like "Here are four websites, two support groups, eight families,etc.etc." Why do they assume that you know what to do? They went to med school to help people. Then help...in every way!
Lilah is 6 months old and no one has told us where to go to get our answers, feel understood, feel....normal. My only REAL team that understands has come from the two women I have met through this blog. They are not in the same city, town, or state. They cannot come to my house wrap their arms around me, cry with me, BUT they cry with me via the Internet. AND they get it...without asking all the why questions! (Thank God for Lisa and Kristen)
I have had to research and research... and I am still getting information. I am appalled at this. Does anyone understand how lonely this is? When you don't know who to ask questions? Does anyone understand that I am not a mind reader? I am new to this! Having a child with a disability doesn't come with a handbook, BUT it should. It should be offered. It should be given without someone having to pour their soul out and not get answers.
The past six months has been a roller coaster of emotions. I have cried more in the past six months than I have EVER cried! I have felt more lonely, more isolated, more sad than I thought I ever would. I would have LOVED to have had someone here...in my own town or at least a drive away...that I could sit with, be with, learn from, help, encourage, share, grow,etc.
So...after months of not knowing where to go or what to do....I am finally getting more information. I am getting more help. I am going to find some answers. I am going to help Lilah....anyway I can.
Lilah has her first PT (physical therapy) appointment this Monday. "Why PT?" (Someone has already asked...I am SO tired of ALL of the questions...this is why I write the blog...so I do not have to repeat myself and reopen the same wound 15 times a day. (Please do not ask me why why why about Lilah....I will tell you if I want to. If I do not explain it...I don't want to talk about it!) Because Lilah cannot see like a "normal" baby, she isn't moving as much as a "normal" baby. So, PT will help her with her physical milestones. I am waiting on the vision therapist to call. She is suppose to come...once a week. THAT will be incredible...if it happens. (I pray that they are not as slow to get in touch and stay in touch as I have been told they are.)
I wrote this not just to vent. I wrote this because I hope to help someone else. I pray that some MD is reading this and realizes that the way in which news is delivered can greatly alter the course of treatment. There is a way to make this process easier!! I pray I can help. I pray that Lilah will be an inspiration.