Today Lilah had her consultation with Savannah Neurology. Dr. Katherine Moretz was wonderful. She checked Lilah over. We discussed Lilah's medical history. She asked me why we were there. I told her that Lilah's PT, Laura, noticed that she would get quiet and "go away." Laura wanted to make sure that Lilah doesn't have any neurological problems that would prevent her from progressing.
Dr. Moretz talked to us about Peters patients.(Lilah has Peters Anomaly in her right eye) She handed us an emedicine study about Peters patients that is 9 pages long. Peters patients can have "developmental delays, congenital heart disease, structural defects of the neurologic system, spinal defects, genitourinary abnormalities, external ear abnormalities, hearing loss, cleft lip and palate, and short stature."
So....
Dr. Moretz has ordered an MRI(Diagnosis: Transient Alteration of Awareness, Lack of coordination, delayed milestones, ophthalmology abnormality), an EEG(to test her brain function), a Cardiologist referral(diagnosis: transient alteration of awareness, lack of coordination, and delayed milestones), and OT-occupational therapy (diagnosis: lack of coordination and delayed milestones.)
I will not lie and say that I was not taken aback by the long list of referrals. Honestly....I came home and cried while Eli and Lilah napped.
On the one hand I am So, utterly grateful to be having all of these tests done to see what is really going on with Lilah.
On the other hand I am so, very sad that she is almost a year, and we are JUST now doing these tests.
I am overwhelmed with emotions right now because of SO many things in my life.
PLEASE NOTE: This blog is MY way of coping, dealing, expressing, getting it out and praying! The POSITIVE comments from those that follow the blog warm my soul so much. (If you don't like the content don't read. Please refrain from leaving mean, negative, nasty, hurtful comments. I will delete them anyway. No matter how many times you type them!) There are times...MORE times than NOT...that I do NOT want to talk about it. I want to blog about it. CRY. WEEP. WAIL. Talking on the phone and in person is sometimes WAY too painful. I am sorry to all of my family who feels that I don't tell you personally. I just can't sometimes. Repeating the story over, and over, and over again is emotionally draining and I am already so drained. I am sorry that you do not understand why I can't or don't call. I am surviving. I don't JUST have Lilah, and her condition, and her therapy. I have 3 other children, a house to run, and a family to keep healthy and happy. Please understand...or at LEAST respect my wishes... to allow me to not call. You are still getting the information. I just can't tell each person every detail. I am spent. Besides...I DO have four kids to take care of and I do not want to ignore them to tell the 45 minute story individually. My first ministry is my family... The family in MY four walls. I LOVE YOU ALL. I am grateful for you all. But...I process and deal with things the best way I know how. The best way I can so I don't shrivel and die. I must fight, I must survive, I must press on. I pray that through this you will understand me more. Thank you!
The scary part of the information she gave us, and why Dr. Moretz wanted the cardiologist referral, was reading "Mortality may be increased because of other systemic involvement, especially cardiac anomalies."
I am going to TRUST that the Lord has a plan for ALL of this. I LOVE Lilah. No matter what.
I will ALWAYS love her. I know that the Lord has her safely in HIS grip!
Please pray with us for good results from all of the tests Lilah will have done soon. Thank you!
JEREMIAH 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future."
10 comments:
Katie,
I can only imagine the worldwind of emotions and thoughts about Lilah. As you wrote, at least we will finally know. Then, we can be more specific with our prayers, get a medical plan of action and continue loving that precious gift...and...give her kisses on those GREAT cheeks! She WILL live a long and healthy life...all of us who follow this blog know that. This family has stood together before and we have seen the power of prayer...we will not stop now!! Love you!
It hurts my heart to hear you have to go through this. You have so much faith and that will get you through. I love that little girl and your family.
QMM
That is a beautiful pic of Lilah!! Such a sweet smile in this one!!!!
Those anomaly lists sure are long and dreadful to hear, aren't they? You set your mind perfectly when you talked about your solid faith in trusting that God has Lilah in His grip...He's working a plan for her. That plan may not make sense to us right now, but when God writes a story, it's always a best-seller. And Lilah's life, already in her short few months of life...has already drawn so many readers. God is at work in her.
I could tell you were already feeling better by the end of the post. Praying with you. Barbara
I wonder why your pediatrician did not get these tests done sooner?
Anyhow, I am so glad that Lilah is receiving all of the tests now. Better late than never.
How wonderful it will be to understand even more about your sweet Lilah.
Darling picture by the way.
We love you and your family very much. And will always be here if you need us.
p.s. I'm not a very religous person, but I love the Jeremiah quote/proverb?? Not sure what to call it. :) Sorry I never went to bible school as a kid.
HUGS&KISSES,
Laura Jahnke
I pray for tests to be clean ALL OF THEM! We did all of these tests too. I wish you were here or I was there and I could take you out for a LARGE glass of wine and cry together because I have been there. Always praying for you and that sweet Lilah girl. Stay strong friend!
Katie,
I think everything will be ok. Sam had lots of the Peter's PLUS problems and it was obvious EARLY on. He was also so small and is still and I think that's a big sign that more is going on. He was so sick the first year and in and out of the hosital with odd things (not ear infections like regular kids) and he was on a heart machine (still is) The main things were obvious from the get go. Somethings we learned later on but alot of the other things would have been caught or suspected by now with various signs. You are probaly ok. There's a lot of kids that just have Peter's with NO other issues. I think Lilah will be like that! I think your doc is just be super careful to check everything out for you guys. I think most kids with vision challenges have some delays, just because of the vision issues but from your posts she seems to be doing pretty good in the cognitive area. Hang in there as you get the testing done and the hundreds of appts. Hope this has encouraged you:) Yvonne
Hey I had to post again. I just saw the little video that you posted a few days ago! ( i don't checl my blog list too often don't have the time) Wow Sam couldn't move like that till he was probably 2 yrs old. Plus for her to clap show so much cognitive ability! I think everything is gonna come out ok on all your tests. I don't mean to compare her to Sam to make Sam look "bad" cause everything's ok with how he is with us, but I just want to encourage you that she seems to be doing really good for a lillte girl who has had a rather tough begining:) I think all your tests are going to be ok. Hang in there. Yvonne
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