Bye Bye 2008!

I can't believe it is the end of 2008? Where did it go? Well, much of it was spent driving to LA for doctor visits and doing therapy at home in Bakersfield. It's been quite a year. We're looking forward to a more relaxed 2009...less doctor visits, that's on my wish list! What can we expect for 2009? Mia still has at least 2 more surgeries to go, both intestinal...so probably in March/April we'll do the first one of those and then over the summer we'll finish up. We continue to pray that the helmet will help the front of her head straigten out so that she doesn't need another skull surgery...she probably has another 10 months or so of wearing the helmet. And of course we continue to pray for developmental milestones, like crawling and walking and feeding herself...those will come with time and I've learned to be very patient and not compare her to others...or to the book for that matter, her life hasn't been a typical baby life. :) We are ending 2008 on a very positive note, Mia has now reached 17 pounds and we continue to be grateful that she is putting on weight. God has truly been gracious with our little girl. And we continue to be so thankful to all who pray for her, she is quite a loved little girl! Who can resist those chubby cheeks and big smiles?? We sure can't.

Family

We've been so busy with family this past week that I haven't written a post in so long. So long for me anyway! We were enjoying time with my brothers and their families...lots of nieces and nephews to play with Mia. At times there was so much going on she wasn't sure what to make of it, but she was very intrigued by all these other little people. :) And then we spent the other half of the time with Brad's family and his sister who was here from Portland, Aunt Goose. Needless to say, we've been busy.

Christmas was really nice. She got lots of gifts that Mommy and Daddy had to struggle opening. ;) Her biggest gift was a new wagon...it's quite the wagon too, it comes with seat backs and seat belts and cup holders...the only thing lacking is a GPS. One of her favorite gifts (chatter Elmo) came from her boyfriend and his brother. Sometimes Mommy puts him away because he chatters too much. :)

She's been eating really well and I weighed her today, she's gained the weight she lost and is now at 16 pounds 15 ounces, thank you Lord! And sleep is still a struggle, but it has been better the last two nights...we've only had to get up for one late night feeding and she's went right back to sleep when she's finished, so there is definitely improvement there. We'll keep praying for good rest.

So sleep is getting better...but she's still not gaining weight, she's down to 16 pounds 8 ounces, so pray for wisdom on our part and insight into what's happening. She's never been a big eater and she isn't eating any differently, so we're not really sure what it's about.

She has started rolling on her tummy again so that tells us that she is feeling better and her chest is healing! We are thankful for that.

Right now she is on my lap pulling my hands away from the keyboard because she does not want me typing. Very cute. :)

Please pray for Mia, she has started to lose weight, and I'm not exactly sure why...she's down to 16 pounds 10 ounces. And she's not sleeping well at all anymore, so please pray for us as we try to figure out what's going on!

We were supposed to take Mia to LA today for a helmet adjustment, but decided against it with all the weather going on...we noticed this morning that they were escorting cars over the grapevine and decided we didn't want to chance it and get stuck on the road somewhere with the baby...not a great idea, so we'll wait for another day to do that.

In the meantime, we weighed her this morning, she's now 16 pounds 13 ounces...maybe she'll be so fortunate as to gain the 5 pounds everyone else does over Christmas?? Probably not, but we are grateful that she continues to gain weight.

She is also on an antibiotic now because I emailed a picture of her incision to her doctor in LA on Monday and they didn't like the redness at the top along with the fact that there was a slight green tinge to it, so as a precautionary measure she's on an antibiotic for 10 days...she should be done just in time for Christmas. :) Since starting that on Monday her scar looks so much better and there isn't the green anymore and the red is going away too.

Sleep continues to be hit and miss, sometimes she does well and sometimes she doesn't, but I have noticed that she isn't so fussy anymore and I can get things done in the kitchen while she is playing in the living room, so that has been a nice change. :)

We continue to be grateful for progress each day and for all your prayers!!!

Mia is doing really well. We took her steri strips off her incision yesterday with this product called Detachal (spelling?). Anyway, it loosens the sticky stuff so it doesn't hurt and I am happy to say that Mia did not cry at all! There is a small red spot at the top of her incision we are watching to make sure it doesn't turn into an infection, but otherwise it looks great. We also felt a new tooth starting to come in today, so that might also be contributing to her fussiness. Some nights are better than others for sleeping, we continue to be patient and pray that we'll get into a better routine soon. Pray that she would eat better during the day, we continue to work on that.

Mia went to see her pediatrician today and she thought Mia looked great. Each day is a little better at home, but she still gets upset if we leave her alone for any amount of time. They decided to take her picture at the pediatrician's office and I thought ok, she likes her picture taken, but as soon as they got the camera out and took a picture she immediately started crying. But if I take a picture of her...or her grandparents do, she poses and smiles for the camera...

She got weighed there and is now 16 pounds 11 ounces...so she's doing great with gaining weight. Please pray for continued healing and that she'd return to her normal happy self soon. Pray also that she'd sleep better at night, we know it will just take time. :)

We are doing well and each day I feel like Mia gets a little bit better. This last surgery wasn't easy for her and we are finding that she's having a harder time sleeping. This might be because she wakes up uncomfortable or because she is still a bit traumatized from her hospital stay. Anyway, sometimes the only person that can console her is Mom...not even Dad, so pray that her sleeping would get better...it's almost like having a new baby at home again. :( And of course her tummy still isn't quite healed, but getting better, so pray for that and pray also for her eating, she's slowly getting there with her feedings...but she is pretty much refusing all solids still. :( The good news is that she has put on some of the weight she lost from the hospital stay, she dropped 9 ounces when we were there...down to 16 pounds 3 ounces when we came home, but now (1 week later) she is up to 16 pounds 6 ounces...so I feel like we are making good progress even if she isn't eating that well! I know it is just a matter of time...it takes time to heal, but it's no fun to watch her be uncomfortable...and we do give her Tylenol, but we try to make that a last alternative, if nothing else will console her. But we continue to be grateful how well her little body is healing.

The Baby Jesus

I haven't been blogging as much because I've been trying to get all our Christmas stuff up so we can enjoy it before Christmas gets here. Last year we didn't put anything up because we didn't come home from the hospital until December 20th...so this year, Brad put the tree up on the Monday we were home from the hospital. This is Mia's first Christmas Tree...she really liked the lights. Then I started going through all the Christmas stuff and she really enjoyed looked at the trees and Santas. Well, when I unpacked the nativity I was showing Mia all of the different characters/animals...and she wasn't super interested, until I showed her the baby Jesus and she immediately grabbed it and took it...we thought that was neat, maybe she knows!

Yesterday we went to LA for a couple of different things. It was time for Mia to get 3 small stitches out and they also wanted to check and see how she was doing. In the morning we noticed she had a hernia near her stoma, so we also got that checked out by a doctor. She didn't like getting her stitches out, but the doctors told us that her incision and stitches looked great. Next week Friday, I get to take off the steri-strips that cover the actual incision, myself. That probably won't be fun either!

After the stitch removal, a different doctor looked at her intestines and he thought they looked ok, we should just watch them for a couple of days and make sure it doesn't turn into something serious, so please pray that her tummy will start to feel better...I think it is because of all the new meds...that they aren't sitting well in her tummy...the good news is we got rid of some of them and in a couple of weeks she'll be back to only her seizure medicine and 1/4 of a baby aspirin a day.

Then they did an echo on her, where they used the ultrasound machine to look at her heart...and they said that everything looks PERFECT! The surgery couldn't have gone better, Praise God!!! And her cardiologist doesn't want to see her for another 4 months! That's how good she is doing!

After that, a quick chest x-ray to make sure her lungs were ok, which they were, and a quick stop at the pharmacy...and we were back to Bakersfield. And if her tummy/intestines sort themselves out by themselves then I don't think we'll need to go back to LA until January...that's exciting!

Not a big deal!

I just got a text from Lisa that the doctor didn't think her hernia was anything serious, just to watch it and they limited the amount of new medication she is getting.
Praise the Lord! :-)

Hernia

Mommy discovered this morning that Mia has a very impressive hernia underneath her colostomy site. It's hard and very painful for Mia. This sheds some light on why she has been crying and restless at night, her tummy hurts! And we didn't know what the problem was because her colostomy bag was covering it up. Being a level headed father, I immediately freaked out. We called the pediatric surgeon at UCLA, and he said, "Is her skin red?" no. (We have an appointment at UCLA today for her surgery follow-up) "Well, then I'll take a look at her when you get here today." I was very relieved to hear that the surgeon wasn't nearly as panicked as I was. So, Grandpa Flash and Mommy are driving to UCLA as I write this. They are going to remove some surgery stitches and the GI surgeon is going to examine her hernia bulge. Would you lift Mia and her tummy up in prayer today? Thanks and God Bless! Brad

Tomorrow Mia gets another Synagis shot...please pray that there are no complications, especially since this is so soon after surgery, but the doctors feel like the benefits outweigh the risks...since her body's immune system is so low, they don't want to risk any infections. And please keep praying for a routine/sleep schedule...we know we'll get there...just a little bit of time.

Hospital Photos

Here are some photos of Mia post operation. She is doing well, but not sleeping well at home...so please pray that we'll get back to a schedule that works for her.