Mia,

Mommy and Daddy love you so much. You are doing so good! And you are so cute, we love how you smile at us and laugh at us. Daddy especially loves all your words, it is so good to have them back. You've even been feeding better (with the exception of one feeding today where you threw up...). Last night you even slept for 6 hours, which was real nice for Mommy and Daddy. One of the really cute things you've been doing lately is sticking your thumb in your mouth while drinking your bottle. We pull it out and you put it right back in again...it makes for some real cute noises. God has definitely worked a miracle in your little life and we continue to trust Him for everything.

We love you baby girl!
Mommy and Daddy

A Helmet

Sweet Pea,

Today we went back to LA for some follow-up appointments. You did just fine in the car on the way down. Our first stop was at the ear, nose, throat doctor. She looked into your right nasal canal (the one she had unblocked in March) and said it looked great! You don't need to have a quick fix it surgery because there wasn't any scarring that needed to be removed. In fact, this might be the last time you'll have to have the probe stuck up your nose. She also looked down into your throat and said it was a little red by your voice box, but she didn't think it was too red and so she thought it was ok that you not take anymore zantac for reflux. We were happy to hear that also.

We then went to see the plastic surgeon who had done your skull surgery and he thought you looked great. He was even impressed that you are taking all your food by bottle now! He gave us the address of the place that is going to do your helmet. They've been doing this for years and come highly recommended, so mommy and daddy are encouraged that they'll help your misshapen head.

We drove over to the place and met the owner and his assistant. They are both real nice and have been doing this for years (that's a good thing). They looked at your head and thought a helmet would definitely help. Mommy asked them if they'd even seen a head that looked like yours...and they said they'd seen lots of misshapen heads and given time they could definitely correct yours. So then Mommy asked them how long you would have to wear your helmet and they told her that because your head is on the extreme end of misshapen it might take anywhere from 12-18 months. We're going to pray that it happens sooner, but we'll also be patient and wait on God's timing for this. So after that they scanned your head. We'll be back in a couple of weeks to get your helmet and have them do the initial adjustment. We know that it seems like a long time, but we think it is worth it for you to have a normal shaped head.

Do you notice anything different about your picture today? Yup, you're right...no more nose tube! Mommy pulled it out last night because you are taking everything by bottle. We still have a few more from the hospital in case we need to put it back in, but you haven't used it in a couple of days so we thought it would be better not to have it in (less risk of infection) if you didn't need it!

We love you!!!

Mommy and Daddy

Therapy

Dearest Mia,

You had your first "feeding therapy" today. Mommy and Grandma Cheri took you to see a speech therapist who also works with feeding therapy. She was real impressed with how well you are doing eating from a bottle. She even thought your breath, suck, swallow looked really good considering what you've been through. And she gave Mommy a few pointers to help you, but she didn't think you needed any therapy! Snooky Great! We are going to see her in a few weeks again because Mommy is going to introduce solids to you again and she wants to see how you do with that.

Tomorrow we are taking you to LA to have some follow-up visits with different doctors. They are also going to fit you for your helmet.

We love you sweet pea,
Mommy and Daddy

Tired But Thankful

Being home is real nice. Mia has improved so much since we've gotten home. We've been feeding her by bottle the entire day and night and she's doing great. Each day she gets a little better with her feedings. Since she doesn't take a lot during her feedings we end up feeding her a couple of times at night. It's just like having a new baby again. Hopefully as she continues to gain strength she'll feed better during the day and we'll have to feed her less at night. She also continues to gain strength in her neck and she's been reaching a lot more with her left hand. We are so blessed at her progress, God continues to be faithful. Thank you for praying!

Doing Well

Dearest Mia,

We didn't know what to expect coming home with you. It reminded mommy of when you came home for the first time from the hospital. We were a bit nervous, yet very excited to be home. Well that is how it felt yesterday. Now that its been a day, we are getting into a routine and it feels better. We love you and are so excited with how well you are doing.

You've taken all your food by bottle today. You've been feeding every 2 to 2 and 1/2 hours, taking about 70cc's each time (a little over 2 ounces). Yesterday you had some vomiting issues, but today you haven't vomited at all. That makes us very happy. Last night we fed you through your nose tube with the pump the hospital gave us, but tonight we are going to let you sleep and feed you when you wake up and are hungry. We imagine it will be like when you were a new baby and we might be up every 2 to 3 hours again, but it's ok if you take your food by bottle and don't have to have the nose tube anymore. We'll leave it in for awhile just to be certain, plus mommy says it is really nice for giving you your medicine, we don't have to struggle with you getting it in your mouth.

Sometimes when you are sleeping you start to whimper and it makes mommy and daddy sad. We wonder if you are hurting or if it is just baby nightmares.

You are regaining the strength in your neck again and can now hold your head up pretty good when mommy carries you around on her shoulder. And we get lots of smiles out of you during the day. We love you so much and are so encouraged by how well you are doing. God continues to heal your little body and we are grateful.

Love,
Mommy and Daddy