Wednesday, February 8, 2012

what you've been missing

Dearest Lily,

Tonight I am just wondering.... what has been going on in that sweet little head of yours?




Because today when I took you to the doctor, I found out that you haven't been hearing things like you should. The last time we had your hearing checked they couldn't get a good reading- there was too much fluid behind your ears. So today we went to the ENT and an audiologist for a follow up visit. I've been very concerned about your hearing and how it is affecting your ability to talk. You seem to hear some things- if we're looking directly at you and asking you something, or asking something loudly, you respond.


But many times we'll call your name and you won't even turn to look. It's hard to know if you've just been engrossed in something, or if you're just being stubborn, or...if you're not hearing us. Josiah reminded me of this today - he would call your name and you wouldn't respond, but he always just thought you were ignoring him on purpose. We do know you can hear some things- you're signing so well in response to words, and you always respond to music or loud noises.


Anyway, call it mother's intuition or perhaps just my natural inclination to question things, but I have felt all along that there was an underlying issue that was contributing to your lack of words. Because I know you're smart. You figure things out, and you demonstrate a desire to learn, and you are so able to communicate your needs to us through sign language, that I felt there must be a reason- other than Down syndrome- that you haven't been talking yet. And I know that children with Ds tend to talk later. But there's a disconnect going on here, and I have not been convinced this is just a natural delay in development due to your designer genes.


   
So today when the doctor told me that you've been hearing as if under water...or as if you someone was holding their fingers in your ears...I wondered- what have you been thinking? Watching our lips move and our facial expressions, knowing we were trying to tell you something or ask you something- what has it felt like to want to know what we were saying, but not be able to hear it? How much have you heard, and how much has just been picked up through your own intuition or ability to read our faces or lips?


But the good news is: we have a solution. Two weeks from this Thursday you'll have tubes put in your ears. Just a ten minute procedure to make a small incision in your eardrums, drain the fluid, and insert tubes...and then we wait for you to wake up. And just typing those words makes me very nervous, but so many mamas are already reassuring me that their children had tubes put in, and they did just fine.

So I'll just pray between now and then, and trust that in just a few weeks I won't have to wonder any more just what's been going on in that sweet little head of yours.

I just can't wait to see your face...when you hear what you've been missing....



All my love forever,

Mama oxoxox


********************

Dear Readers,


The Dirkes family traveled today to see Charlotte and go to court to adopt her. They still have a little less than $5,000 left to be fully funded- which needs to happen to bring her home next month. Kelly will announce the winners to her Covered for Charlotte giveaway soon- I promise to let you know as soon as she does. I imagine packing to see her girl took up those last minutes between the end of the giveaway and their departure, and having drawn winners for giveaways many times myself I know what a process that is. Keep checking back for those announcements, and thank you to all of you who donated. Please consider continuing to help the Dirkes family make that last trip next month by donating to their grant fund on Reece's Rainbow. (Charlotte is listed as Maria there.)
And If you love Scentsy products, I'll be hosting Charlotte's Basket Party all month long- all of my commission will go to the Dirkes family.


I would also like to tell you about another opportunity to help orphans- and this is a pretty special situation. I'm going to let my dear friend Jane tell you all about it....just take a look at this picture and you'll know why it is so important that you go read her blog.


Those precious crosses stand over the graves.... it hurts my heart to type this...graves of children from the orphanage Jane is going to. PLEASE. If you don't read anything else in this post- PLEASE HELP.


My little worries about Lily getting tubes in her ears seem so small in comparison to those graves. We are so blessed here in America. SO blessed.

Thank you so much for sharing my burden for these children- some nights, like tonight, that burden is so heavy I can hardly stand it. If you can't give, you can share...share these children's needs with others and pray for miracles.


And if you missed my post from yesterday, please go read about other children who need some miracles....

Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you. James 1:27

20 comments:

Jane@flightplatformliving said...

oh sweet lily! wait till that little munchkin can hear her MAMA properly!xxxx

thankyou Patti xxxxxxxxxx

DeAnn said...

Oh. Sweet Lily, the most beautiful sound you are going to hear clearly first is going to be your mama's voice <3 And, over time, you are going to be busting out new words and sounds and just amazing everyone, cause your so smart like that! I will be praying for you daily sweet girl, as well as the doctors and nurses that will be taking care of you and watching over you so closely. But Mama, you and Daddy will get some special prayers, because I know what it's like, when you want so hard to believe what everyone tells you, "She'll do great! We do these types of surgeries everyday, with no problems.", but the evil one is tossing his arrows of doubt and fear right into your heart. I pray that the Holy Father will wrap you in His arms of peace, and comfort you. For each of my children's surgeries I've had to keep walking by faith, knowing that God would give me the peace I so desperately hoped for. It didn't always come when I wanted it, but always when I needed it most, often just hours before surgery. For Sarah's heart surgery it was truly in the midst of the storm, as tornados ripped through our neighborhood, touching almost every property except ours. I felt His hands on me, on Sarah, and I knew we would be fine, in this moment and in the ones to come. I pray this same peace will wash over you and give you comfort in your storm. <3

lovemy3 said...

What sweet pics of Lily! We are battling the "what is she hearing", "what is she not hearing" saga right now too. Hopefully we will have answers soon. I can't wait to see how Lily reacts to being able to hear everything!

Mrs. K said...

Dad said it is kind of like how he hears at times. Kiss my Lils for me please.

Jenny said...

That's great Lily will be getting tubes, I bet it will make a world of difference! Such sweet pictures of Lily on here, I love this girl :)

Lexi said...

Oh this whole post made me ache inside. I'm sorry about Lily's hearing. It is a big deal. Sometimes we try to feel as though all of the big things we know about in the world should make our little day to day stuff not so hard..and sometimes it isn't...but this one is a big thing.

Those pictures made me cry. There is more I can do. There's got to be. Thanks for the reminder.

Runningmama said...

Oh, you will be amazed when she gets her tubes! Emily had a set placed at a year old and we saw a dramatic improvement and then they fell out about 4 months ago and she was really irritable and frusterated most of the time, then she had a new set placed because she had a ton of fluid and we have our girl back, she is chattering away, saying new words everyday! The surgery is so quick and Emily was up and about and back to her peppy self by the time we got home from the hospital! Lilly will do great and I can't wait for her to experience all the things she has been missing :-)

Lori said...

So glad about your doc appt. Lily is going to love to hear herself ;)
Love, love, love all the cute shoes and dresses she has - always so sweetly dressed!

Anna Theurer said...

Ooh Lily! She is going to be amazed by how well she can hear once those tubes are placed. I know it is scary to hand your child off to a surgeon. Believe me, I know. I used to work as an ENT NP, but I still get nervous every time Ellie gets ear tubes. It is a mama thing. Keep us posted!

Crystal said...

I had tubes in my ears as a child, and so did my brother. It definitely helped! Lily's gonna love having them!

Line-Marie said...

I just LOVE Lily's dress!! SO pretty!

Regina said...

My daughter just got her 2nd set of tubes yesterday! She had a ton of fluid in here ears and wasn't hearing well. She got her first set at 9 months and honestly we noticed a difference like, later that day. She started making more and different sounds. The surgery is super fast. The worst part is when they come out of anesthesia. She will feel wierd and not understand what's going on. Plus she will be hearing more which is going to be strange for her at first. My daughter cried it out for a little while and then relaxed. Both times after a good nap she was totally fine like nothing happened. Lily will be fine and tubes will definitely make a difference for her. Keep us posted!

barronfamilyus said...

Lily will be in my prayers for a smooth procedure!

ParkerMama said...

Lily is perfect indeed.

teal915 said...

LOVE her shoes : )

cara said...

Oh Patti- I am SO happy that you all were able to figure this out. But also know how your heart is feeling as you wait for this anticipated day. You know we will ALL be praying and praying for Lily and you all. I will also have my church pray as well. God will carry all of you as you wait and go through this. I cannot wait until you tell us what Lily first looks like hearing your clear, clear voice. We love you all!! May God give you His abundant peace right now.

I will go check out Jane's blog right now. These orphans just break my heart. I want to do more.

Karly Jaco said...

You put so perfectly into words all the I have been thinking since i found out ava needs to get tubes. I am right there with you. keeping you both in prayer and just know that it's gonna be so awesome when the "earplugs" are taken out for lily. (and my ava too) God is good!

Lisa said...

We are on set #5 for Cate and they make such a huge difference. The recovery is minimal - no more difficult than putting in drops. You can even swim without plugs these days. Have you thought about getting them to do an ABR while they are in there just to get a baseline and verify the nerves are all working correctly? It was a big relief for me I know when I got back the results saying it was just the fluid nothing more.

Kelly Marin said...

Patti some of those pics u should blow up and put on your walls!!!The ones of Lily I mean. My kids say she should and could be a baby/toddler model! So thats from the Marin house:)

Kelly Marin said...

Also Patti, I forgot to say in my last comment that Adri had ear problem 50% hearing in one ear and only 20% in the other and she was going to have hearing aids at age 13 and we prayed for her and God did a miracle and she now has 100% hearing. So believe God for a miracle and I know the tubes are going to make all the difference!!! Its awesome to see the difference in their hearing. Although we do have some funny stories about her "ignoring" us:)