We got a second (and third) opinion today on Emily's condition. Basically all doctors are in agreement that we have to wait it out. The concensus is leaning towards a tethered spinal cord which will start to show symptoms as time goes on and Emily starts to "outgrow" her spinal cord. If and when this happens she will lose strength in her lower extremeties and will need surgery to repair the damage.
We are encouraged by the news today and know that with continued, faithful prayer God will once again heal our little miracle.
I was talking to my sister today about our news and the prescription to wait. She mentioned that many times God's answer to our prayers is to do just that... wait. I started thinking about how right she was and was encouraged by all the times in my life when God answered my prayers by making me wait things out. So we find comfort in the waiting. I know that Emily is in God's hands and there is no better place for her to be.
We are trying to live in the here and now as we see a healthy six month old kick and stretch her legs. As for the future, I know God's plans for Emily are far better than anything Wayne and I could dream up for her. Thanks for your continued prayers for our little family. God is answering them!
Thursday, September 27, 2007
Sunday, September 23, 2007
Sisters
My girls are becoming fast friends. Lila has always been a little mommy when it comes to Emily and her needs. She is always bringing me a pacifier or a bottle for her 'sissy'. She loves to point out her eyes, nose, mouth, ears, fingers, and toes... unfortunately she has had to learn the hard way (a few spankings here and there) that you can't actually put your finger in her eye when pointing it out... Lately Miss Emily's face lights up when Lila talks to her. We have been working on being very expressive and dramatic when talking to her (part of her therapy) and have been getting lots of smiles out of her, but she saves the biggest ones for her sister! I love to watch Lila interact with her and see that grin from ear to ear! It is the sweetest thing ever! Last week Lila kept climbing in Emily's papasan chair to watch TV with her sister. We kept having to get on to her for fear she would dish out a little injury with that lovin'. At times it's hard having them so close in age(lets face it... it's really hard) but I love that they are going to grow up being the best of friends! Their friendship is blooming and I couldn't be more proud!
Their first meeting from the NICU window!
I think Lila was a little unsure of her new sister here! That's my sister????
It's been Hugs from the first day home from the hospital!
Bath time is always fun... if Lila remembers sister doesn't like water poured in her face!
Emily has the 'deer in the headlights' look here... it was either the camera flash or Lila is squeezing a little too tight! We are still learning how to be gentle... poor Emily!
Their first meeting from the NICU window!
I think Lila was a little unsure of her new sister here! That's my sister????
It's been Hugs from the first day home from the hospital!
Bath time is always fun... if Lila remembers sister doesn't like water poured in her face!
Emily has the 'deer in the headlights' look here... it was either the camera flash or Lila is squeezing a little too tight! We are still learning how to be gentle... poor Emily!
Update
Many of you have heard the latest bump in the road for Emily but I wanted to post about it so that more people can be praying for our sweet baby girl.
We found out earlier this week that there is a strong indication that Emily has spina bifida or a tethered spinal cord. We noticed a small hole on her lower back around her tailbone a few weeks ago and asked the pediatrician about it at her six month check up. An MRI is needed to determine her condition and severity but she would need to be sedated with anesthesia and our doctor thinks we should wait until Emily is stronger and better able to handle sedation due to her respiratory distress at birth and prematurity. Both of these conditions can be quite serious and require major surgery. Obviously we are devastated by this recent news and not prepared for what may come of either diagnosis. I have been told that worst case scenarios could leave her paralyzed from the waist down, in a wheelchair or in leg braces.
I look at my sweet baby girl and can't imagine her not being able to dance herself silly, ride a bike, or have a daughter of her own someday. I am just in shock that everything we have been through these past six months is not in fact over and behind us. Please join us as we go to The Father on behalf of our Emily, begging for her health to be restored. Faith as small as a mustard seed can move mountains. God can heal Emily. He gave her life when she was born early. He can give her legs strength to run marathons, her back and hips flexibility to be a perfect gymnast. He can answer our prayers and fulfill our dreams for her. He can do anything. God has been so good to us already and has seen us through our every struggle. I know that God's plan for Emily is bigger than I could ever dream myself. He is in control and will see us all through this next chapter in her life. Right now everything is just so scary. We have a second opinion coming up this week and hope for some more information and a plan other than waiting. Please remember Emily in your prayers today.
We found out earlier this week that there is a strong indication that Emily has spina bifida or a tethered spinal cord. We noticed a small hole on her lower back around her tailbone a few weeks ago and asked the pediatrician about it at her six month check up. An MRI is needed to determine her condition and severity but she would need to be sedated with anesthesia and our doctor thinks we should wait until Emily is stronger and better able to handle sedation due to her respiratory distress at birth and prematurity. Both of these conditions can be quite serious and require major surgery. Obviously we are devastated by this recent news and not prepared for what may come of either diagnosis. I have been told that worst case scenarios could leave her paralyzed from the waist down, in a wheelchair or in leg braces.
I look at my sweet baby girl and can't imagine her not being able to dance herself silly, ride a bike, or have a daughter of her own someday. I am just in shock that everything we have been through these past six months is not in fact over and behind us. Please join us as we go to The Father on behalf of our Emily, begging for her health to be restored. Faith as small as a mustard seed can move mountains. God can heal Emily. He gave her life when she was born early. He can give her legs strength to run marathons, her back and hips flexibility to be a perfect gymnast. He can answer our prayers and fulfill our dreams for her. He can do anything. God has been so good to us already and has seen us through our every struggle. I know that God's plan for Emily is bigger than I could ever dream myself. He is in control and will see us all through this next chapter in her life. Right now everything is just so scary. We have a second opinion coming up this week and hope for some more information and a plan other than waiting. Please remember Emily in your prayers today.
Therapy
Emily is doing great in therapy. ECI comes to our house twice a week to work with her on feeding, tummy time, muscle tone, etc. Right now she is at the level of a three to four month old. Emily has just recently started kicking her legs and is making more cooing sounds. Because of her hearing loss we have to be really expressive when talking to her and use a lot of facial expressions. I feel a little silly talking to her like this but she LOVES it... she is all smiles and it melts my heart! We are spending a lot of our therapy practicing tummy time which she really dislikes. She is up to tolerating a good 3 1/2 minutes before she tires out and lets you know it! We really like Ms. B and Miss K. They are so nice and great with Miss Emily. I am so thankful that God has put such amazing and patient women in Emily's life. We have seen a huge difference in the past two months and are so grateful for all their hard work. We are so proud of Emily rejoice in all her little accomplishments! Next week we are going to start learning how to roll over... stay tuned!!
Check Ups...
Lila's Two Year...
We've moved up on the growth charts! Lila now weighs 22lbs. which puts her in the 5th percentile (she has always been in the 3rd percentile). She has always been average in height but her head circumference cracks us up... she is in the 90th percentile there!! I guess she is just all brains!
Emily's Six Month...
Emily has now graduated from the preemie growth chart to the regular, big girl chart (thus the hip, hip hooray photo above). She weighs in at 11lbs. 1oz. Yay!! That puts her in the <3% but at least she is getting closer... She ranks in the 10th percentile for height and the 50th for head... another brainiac!!
I know some of you must be thinking who cares? Why is she posting all this? But people are always asking how much they weigh now so I just thought I'd share with our blogger friends!
Both girls got shots. Not fun, especially since I was by myself and having to hold and comfort two screaming babies! Emily was so good though... she cried for a minute and was over it... Lila was still sniffling at McDonalds a good thirty minutes later! We get to go back this next week for flu boosters... that should be fun!
For the rest of the day Lila had to keep lifting up her dress to show me her ouchies (as if I forgot what a 'fun' experience we had that morning). I tried to keep her busy for the rest of the day to keep her mind off it... You can tell by the picture below that I must have done a good job of it... she fell asleep during dinner... actually both girls did!
Six Months!
Emily is six months old! We had to break out the party hats again (mainly because Lila couldn't ever put them away) and celebrate one more time but who cares... with Emily we have a lot to celebrate! You've come along way baby!! Emily is precious! She is our joy and we are amazed at what our God has done! Happy 1/2 Birthday sweet girl!
Birthday Girl!
Happy Second Birthday Lila!!! We did a lot of celebrating this year, first we had our Elmo party at my parent's house over Labor Day weekend, then our sweet friends from playgroup threw Lila a surprise party (Barney cake and all!) and finally our little family celebrated on the big day! And celebrate we did... all day!! We started the celebration with Emily and I waking Lila up wearing silly party hats and singing happy birthday. Then we had Lila's favorite breakfast (blueberry muffins)which she helped to make (her favorite part). We went to the park where Mommy lost count of all the times I had to go down the slide per Lila's "Come on Mommy, Come On!" We had lunch at Chick-fil-A, where Lila eats more polynesian sauce than chicken, and came home for a much needed nap. When Daddy got home from work the party continued at The Zone where we bounced in the bounce houses and went down the great big slide up to the point of exhaustion. We filled up on pizza and came home for cake and presents. Lila just about fell asleep in the bath tub and we all went to bed that night with enough celebrations under our belt to last the whole year through! I really can't believe how fast the past two years have gone. I am absolutely amazed at Lila and the spunk she has for life. She is my heart and I am so proud to be her Mommy! Happy Birthday Baby Girl!
Saturday, September 22, 2007
Labor Day Weekend
We went down to my parents house for Labor Day. Wayne wanted to get in a little hunting and we celebrated Lila's second birthday with the family this year. I was really worried about how Emily would do on the plane but she did great..slept the whole way there and back. She really is the best baby... so laid back, calm and patient. Completely the opposite of her big sister!
Summer, Brandt, Charlie and Kate came down for the weekend as well so we had an Elmo party to celebrate Lila's big 2!! It was so fun and my aunts, uncles, cousins and grandparents enjoyed meeting Miss Emily for the first time. Happy Birthday Lila! (just a little early!)
Summer, Brandt, Charlie and Kate came down for the weekend as well so we had an Elmo party to celebrate Lila's big 2!! It was so fun and my aunts, uncles, cousins and grandparents enjoyed meeting Miss Emily for the first time. Happy Birthday Lila! (just a little early!)
My mom bought a bunch of pools for the backyard so the kids could have a good time and we wouldn't have to worry about life jackets, arm floaties, etc. The kids loved it. Charlie caught two frogs that ended up swimming with him, but Kate and Lila weren't sure about them... I guess it's a boy thing!
By far the funniest thing all weekend was Kate (she usually steals the show... she's hillarious!). Anyway, Kate has this infatuation with her Papa. She always wants him to hold her, play with her, read to her, she even sleeps with my parents during her stay... while she was waiting for Papa to take a shower she played with my mom's make-up... but according to Kate "I just used one thing".... yeah, waterproof mascara! This is how my dad found her and brought her down to show the rest of us... that's kate for ya!!
Catching Up....
My thyroid surgery was a success, no cancer was found, but it has taken me a whole lot longer to bounce back from it than I anticipated. If I had known beforehand just how bad it was going to be I would have waited a few months to mentally prepare. Who knew something so small in your body could cause such chaos when it was gone! I think we are finally on the right track now with a few minor tweaking of the medication and I am starting to feel like myself again. So I'll be updating my blog... filling you in on all that has been happpening, which was alot!
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