Thursday, January 29, 2009

Today at occupational therapy (for her fine motor skills...putting blocks in containers, etc.), her therapist was so pleased at how much she has improved...and I can see her progress weekly, which is so nice. Anyway, we were discussing that Mia is at an 11-12 month level, and so she's not so far off from her actual age...not yet 16 months. There was talk that maybe, if she continues to progress like she is, in another 12 weeks (that's how often they reevaluate) she might no longer need occupational therapy. I was almost in shock when she told me that! But Praise God at her progress! And, our dear friend Lita left a comment on how well she is doing considering what they told us she would NEVER do...and it was a powerful reminder of God's healing miracle in her little life. She's come a long way from just "eating, breathing, smiling, and laughing". We are forever grateful at the mercy God has extended to our little Mia...and so grateful to all of you who continue to encourage us and pray for her (and us too!). Thank you God!!!!

Wednesday, January 28, 2009

Yesterday Nana and I took Mia to LA for a follow-up visit with her NICU doctors. They always get so excited to see Mia because she was in the NICU for so long and we are there all the time that they have such a good relationship with her. So it is always fun to visit them. They love seeing how big she's getting and her blonde hairs...

One of their physical therapists did a development test on her again...she had one done around 9 months, so this was to see how much she has progressed...areas she might need more help, etc. They had these cute little square box chairs (I wish I had taken the camera and taken a picture :( Next time!) Anyway, she sat in one, like a little princess, all prim and proper, and the other one pulled up to her like a table. She loved it. They tested her to see if she could take blocks out of a cup, put blocks in a cup...could she find things under washcloths, she did pretty well with everything...she didn't always use her left hand, but when I forced her to use it, she was able to do pretty good. They had a problem solving thingy...a clear plastic box that had an opening on one side. They put a duck in it, so she could see the duck and had the opening facing her, she was able to reach in and get the duck out, but when they turned the opening to either side she wasn't able to do it. How snooky of them!

Anyway, she scored very similar to her last test, even though she was able to do much more, the bar was raised higher for her age. She's definitely behind (we knew that!), but she's furthest behind in gross motor skills (we knew that too!). Crawling, Scooting, Getting into Sitting, etc. We continue to work on those...the other thing though is that her language score was a bit lower, but that's because she's not saying much, so pray also that she would develop her language skills and learn some basic words. They said the next time they evaluate her (21 months) if she is behind in language they can write a prescription for speech therapy...we'll see what happens then. The test was also a little biased because she got marked down for not knowing the word "no"...but we never use the word "no" with her (she's an angel...), well, she's just not crawling and getting into things that she shouldn't get into. The test didn't recognize that she knows what to do when we say "turn the page" or "roll me the ball"...so they said at 21 months I can also place her where I think she is on the scale...mostly they were just concerned that she's not saying alot of other sounds besides, m's and n's and aye! So pray for her to learn those other sounds. :)

That was kind of verbose, good thing women have more words then men...Mia at least has that much extra going for her!!

Sunday, January 25, 2009

Will you praise God with us!

So one of our struggles all along has been getting Mia to gain weight and eat food, well, she is now 18 pounds 7 ounces, she's gained 1 1/2 pounds in less than a month, that is phenomenal for our little girl, usually she barely makes 1 pound in a month, so we are so excited about her weight gain. Thank you God!

Mia has also slept through the night 4 times in a row, which is also amazing. And we are ever so grateful for that. We know it is beneficial to her and to us also. By the way, we haven't had to cry it out yet...still an option if there are nights of sleeplessness, but we are grateful she's doing it on her own.

Her head is growing slowly, another praise! And we continue to pray that the helmet will fix the step down in front and reshape her head properly. Thank you for continuing to pray for her, God is so good!

Please also pray for crawling and walking, we know it is possible, we just don't know when. Help us to be patient as we wait on God's timing for this!

Friday, January 23, 2009

Yesterday we went to feeding therapy and got some good advice about getting Mia to eat chunkier solids. The feeding therapist said that a "guru" in feeding therapy hates stage 3 baby food with chunks because children get confused and don't know if it is a solid or a purée. (Stage 3 is pureed solids with chunks.). He recommends going straight to feeding tiny pieces of food to your child, and I think that is true for Mia, so we will be working on that with her.

Two nights ago (the first day I tried one less bottle and more solids instead) Mia slept through the night! We were so excited, and we knew it was possible. Thank you God! Last night she made it until 4:20 and we weren't ready to cry it out, so she got a pacifier to help her back to sleep, but no bottle. So I think we've agreed she doesn't need a bottle and now we will have to decide when we are ready for her to cry it out...maybe tonight??? We will see.

She is also doing real well gaining weight, she is now 18 pounds 4 ounces.

Wednesday, January 21, 2009

Mia is doing well from her shots so far, which we are very grateful. We know her immunizations are important, but we don't want her to have anymore seizures either. Mia weighed in at 18 pounds 1 ounce this morning, she's getting to be such a big girl!

At the pediatrician's office yesterday, she told us she wants Mia to be getting 3 meals a day and no more bottles after 18 months...that's seems a bit daunting to us, but we're going to do our best to get there. Pray for wisdom on transitioning to more solids and chunkier solids. Mia tends to make herself gag with chunkier things, so pray that she'd figure out how to eat those things...we will be seeing her feeding therapist tomorrow and she should be able to give us more advice on this also.

Pray also that Mia would learn to feed herself. She will pick up food, but never put it in her mouth...she'll put toys in her mouth, but not food, so pray that she'd make progress in that area.

We are considering letting Mia cry it out at night also, instead of giving her a bottle, so pray for wisdom there also. We want to do what's best for her and getting her to learn how to sleep through the night is really important, so pray for us in that area too.

We are leaning towards not doing surgery on her skull, pray that if God wants us to do that, He would change our hearts. We aren't for certain, but that is kind of where we are at right now...we are definitely not rushing into another skull surgery.

Monday, January 19, 2009

Mia weighed in today at 17 pounds 15 ounces! We are so close to 18 pounds, I can feel it. :) She continues to eat well and we've only been getting up once in the night, which has been alot better, we'll pray that she'll get the sleeping through the night eventually.

Tomorrow Mia gets some immunizations, so please pray that she doesn't have any adverse reactions to them.

She's doing really well otherwise, we can't wait to see her crawl one of these days. The occupational therapist listed a few things to work on with Mia last Thursday, one of which was taking her socks off, she can do that no problem, we just hadn't worked on it, so we are pleased with the progress she is making. And she's picking up language really quickly, or at least that what it seems to me, she's able to pick out who her Nana and Grandpa and Grandma Cheri are, she even knows who Uncle Paul is, it's really neat to see her respond when you talk to her! God has been so great to her, we continue to be very thankful of His graciousness!

Saturday, January 17, 2009

Bath Time!


We don't normally stick Mia in the bathtub, we usually just give her a sponge bath, it tends to be easier with her bag, but we decided to let her play in the water today...she's got to get used to it sometime...so I was in the process of changing her colostomy bag and decided it would be a good time to get a bath. She loved it. She had a lot of fun playing in the water, we'll have to make it a regular routine when I change her bag now. :)



I also got this nice picture of CindyCat the other day, she's such a good kitty and does so well with Mia. Sometimes we think about finding a new home for her because of my allergies...we'd want her to go to a really good home though. Does anyone want a really nice kitty?? We would definitely need visiting privileges...

Thursday, January 15, 2009

Monday I went to Children's Hospital Los Angeles to have them take another look at Mia's skull. The plastic surgeon thinks that the only way to correct her head is to do another skull surgery. As you can imagine, my heart sank into my stomach when he told me that. He thinks her head is too tall and he'd like to take some off the top to lessen the height, he then would like to fix the front at the same time. He said we can wait to fix the front until she is 5 or 6, but he wouldn't be able to take away the height from the top of her head at that point, so that's why he'd like to do it now instead. Please pray for us in a decision regarding this, we don't want her to have to go through surgery again and this is only cosmetic, but at the same time, we know that teasing is rampant with kids who look or act different. So there's a lot of psychological implications regarding this. Sometimes when I look at her head I do think it is tall, but then sometimes I don't, so please pray for wise discernment regarding this, if we do the surgery it would happen fairly soon...in the next couple of months.

We also saw an opthamologist while we were there and she said that Mia is near-sighted already! We are just going to monitor it and she'll be checked out again in another 4 months to see if there is any change, if there isn't then she won't need glasses, but if there is, she might be getting glasses already!

It ended up being a very long day, we were there from 8-5 and so we were thankful to finally get back to Bakersfield that evening. The next day we headed back to LA for a helmet fitting. That went well, she made some minor adjustments and we'll follow up in another month with her.

Today we started therapy again! Mia is doing really well and she continues to make progress...she just started using her pincer grasp, and we'll continue to work on those fine motor skills. Pray that she'd start crawling and walking, I know she wants to so bad and I know it is completely possible, nothing is impossible with God! So pray for our patience and for her to gain those skills.

Sleeping is definitely hit and miss, last night there was one feeding, but the night before 2-3...she's eating so much more, which is great, but we want her to do all of it in the day! And she's putting on weight, she's now 17 pounds 12 ounces...I feel like there is hope at getting to 20 pounds in the next couple of months. That would be so nice!

Sunday, January 11, 2009

LA Childrens Hospital Appt on Monday

"Mia takes a break from her favorite toy, Junior Asparagus"



Lisa, Mia and Grandma Cheri went to LA sunday night to be at LA Children's hospital bright and early for Mia's appointment with their cranio-facial clinic. The unknown is always scary, and we don't know what they are going to say tomorrow. Lisa and I are very grateful for how Mia's head looks, it looks so good! We are hopeful that God will continue to re-shape her head, and she won't need another cranial vault surgery.
The three snookies will return to Bakersfield Monday afternoon, and on Tuesday morning, will drive back over the hill to Torrance for Mia's helmet adjustment/appointment. So, that is a couple of very long days for them, and we are looking forward to the day of not having to make the trek over the hill. :-)

Wednesday, January 07, 2009

Learning Language


We've noticed that Mia has definitely acquired some language. When we ask her to smile she does that immediately. If we ask her to show us her hands, she'll hold them up and look at them. If we start saying Pat A Cake, Pat A Cake, she'll start clapping her hands. And just today, when the song If You're Happy And You Know It Clap You're Hands is playing, she'll join in and clap her hands. There are a few other words she knows and phrases...and whenever Elmo comes on TV, she says, "AYE", really loud. :)

Mia got this table for Christmas and it's been really good practice for her standing...she likes her table alot. Next week we are going to start therapy again, so pray for good progress with that, we'd love to see her crawl and walk eventually. And there is my hair, the only semi-decent picture I have. :)

Monday, January 05, 2009

Mia got her 3rd round of Synagis this morning and has been doing fine since. I'm trying to stretch out the time between her feedings so she'll take more at each feeding, but she's not too keen on that idea. :)

I also chopped all my hair off because it was time. Mia would run her fingers through it as a comfort and so I didn't want to do anything drastic before surgery or immediately after, but she's healed enough that we agreed it was ok to do. She kept putting her hands up to touch it for awhile, but now she's used to it. She still likes to play with my hair, but now she doesn't yank it quite so much...nice for Mommy, I didn't like the headaches I was getting before. :) I'll have to find a picture and post it. The new mommy hair that is!

Friday, January 02, 2009

Vacuums are Friends, Paper Shredders are not

Mia told me today in no uncertain terms that the paper shredder is not a friend, in fact, it is a horrible enemy that must not be allowed to speak at all. She welled up in tears every time I tried to grind a paper. I told her it was not bad, it was ok, but that did not help at all. I then pulled out the vacuum and she told me it was fine, the vacuum is her friend, I can vacuum all that I need to.

Aside from that we are doing great, Mia was supposed to get a Synagis shot today, but it wasn't ready, so she'll probably get that on Monday instead.
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