Friday, July 31, 2009

Everything went great in LA today. Mia's bottom looks really good. The plan is to go back on Tuesday during her surgeon's office hours and he will show me how to stretch her at home. Pray that I would be able to do that because if not it will require lots more LA trips and anesthesia, which we don't want. Continue to pray for soft scar tissue also.

In this past week, we have been working on squats and pulling to stand, Mia's leg strength has increased substantially to the point that she is almost pulling to stand on her own. How exciting!!! Tonight I was practicing with her walking sideways with the couch (for the life of me I can't think of what they call it, maybe cruising using furniture)...anyway, she can do it on her own, but she is real wobbily, but she's never done that before, so I'm so excited about her progress!! Keep on praying for more leg strength! And Praise God that He has given her the ability to this, what a miracle!

Thursday, July 30, 2009

What a cute baby!



I took these pictures the other day and was trying to get Mia to smile real nice for the camera...no such luck. A year ago she would roll over and smile for the camera if you brought it out, we could take pictures all day long and have tons of opportunity. Somewhere she decided enough was enough and she will only play along for a few moments, if that. Oh well. :) I like her angry faces anyway.

Tomorrow we go to LA for her surgeon to put her under and do a serious stretching. I think after that I will be doing it at home, if possible. Pray for safe travel and that everything would go smoothly, that her bottom would be 100% healed and that it would be scarring softly.

Saturday, July 25, 2009



Today we went to LA for a doctor visit at Children's Hospital LA...it's kind of nice to have a Saturday appointment so Brad can come too. We were seeing their plastic surgeon who does cranial vault remodeling surgery too. Since there was a possibility that we might do another skull surgery, we've been following up with him instead. Anyway, we've already decided that we aren't going to do another because Mia's head looks really good at this point. He was actually really pleased with her head too, he did still think it was a bit tall, but did note that he does this for a living so his eye scrutinizes kids' heads more than the average person on the street. He thinks that it won't be that noticeable when she is bigger. He talked about how we can possibly do a minor surgery when she is 6 to fill in any missing stuff from the front so she doesn't have the ridgeline anymore. So, that was good news and of course we were happy with our visit today.

After that we were off to Palmdale to visit my brother's family and their lambs. Two of their kids are doing 4H and are raising two lambs (they become sheep when they are older...) for the fair this fall...the lambs are Sassafras, because she's sassy, and MoMo, because she'll bring in MoMoney. MoMo is real gentle and let Mia sit on her and pet her...which she thought was great. Sassafras was bit more skittish, however, Mia couldn't stop laughing when we said her name...she also got real excited when the lambs chased each other around the yard. I think Mia will definitely be an animal lover someday...well, she already is now, but I definitely forsee animals in our future with this little girl and it's great, I'm glad she gets enjoyment out of God's creation.






My other brother who lives in Sacramento with his wife and 4 boys, yes, 4 boys, were down to visit this past week and their youngest boy is 3 months...I have to say it was really neat watching Mia learn to love this little baby. For awhile now she hasn't wanted anything to do with dolls of any sort, she gets real bashful around them...well, the same thing happened when she met our new nephew, Jon-Luke. She got extremely bashful and didn't want anything to do with him, but slowly, over a couple of days, she learned that she really liked the baby. And at one point, he was crying, and she crawled over to him with a look of immense concern on her face. Very sweet. So, we got to see them today also and Mia immediately wanted to be by the baby and touch the baby, she loves the baby. :)

Friday, July 24, 2009

Thank you for praying, we had no adverse reactions to her immunizations! Praise God!

Her bottom looks wonderful, I'm actually very excited to start the stretching process. I know Mia probably isn't, but it's nice to know we are finally moving forward. Pray for soft scar tissue and the ability to control her bowels.

Wednesday, July 22, 2009

Immunizations

Today we went and saw Mia's pediatrician for a check-up and to update her on everything that's been going on with Mia. Plus, we needed to get some more of her immunizations done, so pray that she doesn't react to them, that she doesn't get a fever. At this point, we only have the MMR and chicken pox immunizations left, so we are getting close to the end of the road on those, but those are the scary ones, but we're not there yet. Overall, she thought that Mia looked well and still thinks that she can talk someday, even though our neurologist doesn't think so, so keep praying that she would learn new sounds and develop more audible speech. We still keep working on sign language with her, but we know and trust that if God wants her to speak audibly, He will work it out so she is able.

Mia weighed in at 21 pounds, she is now 32 inches long...what a long string bean! I haven't talked much about her weight recently because I have truly given it over to God. I don't worry about it anymore, I trust that she will continue to slowly gain weight and grow at her own rate. I still want her head to keep growing, but I also trust that in the end it will be the perfect size for her body.

Here in our town, our pediatrician runs a new NICU at one of the hospitals and they are learning how to do an infant development test that Mia gets done all the time at UCLA when we attend their NICU follow-up appointments. So, our pediatrician asked if Mia could be a guinea pig for them and if they could run the test on her and see how their results compare to UCLA's results. :) Of course, we'd be happy to do that, so next week Mia will be helping them out. I think it's great and I think it will be nice to get the test done a second time and see if the results are similar.

Her bottom is healing great, please keep praying for soft scar tissue and that God would be preparing us now for the stretching process.


On a side note, I think of how God has used so many of you in your faithfulness to prayer and the miraculous results we see with Mia and I think of how that's how it should be in the body of believers. I'm so grateful for all of you who continually pray for Mia. I'd like you to remember another young man from Bakersfield in your prayers if you think of him. His name is Andy Smith and he was in a motorcycle accident a week or so ago. He was burned very badly and has quite a tough road of recovery in front of him. Anyway, he is a believer and I know that he and his family could use your prayers. He is 26 and I don't know much more, but if God places it on your heart, will you remember him in your prayers. Will you pray for a miraculous recovery, like Mia's. Here is his website and you can go there to get updates and read more about his story.

http://www.carepages.com/carepages/updatesandprayersforandy

Monday, July 20, 2009

Physical Therapy

Today we started going back to physical therapy. At first Mia was totally ok with working with her therapist, but after about 10 minutes she didn't like it anymore. We had quite a few tears, but then the therapist brought out some bubbles and that seemed to do the trick. Overall, she's doing well, she's much stronger than before, but still needs to learn how to pull herself up before she'll start walking. So, that's what we will be working on alot over the next weeks/months. :)

Friday, July 17, 2009

99.5%!!!!!

The surgeon just finished Mia's procedure and says she is 99.5% healed, thank you Lord! He said that she should be finished in about a week and he wants to see her in two weeks to start the stretching process. So far everything looks great. He said now we have to be concerned about how she scars, just the right amount and not too hard, so will you please continue to pray for that. And the next question is whether or not she will tolerate me stretching her at home, so please pray that we are able to because if not there will be lots more trips to LA and lots more anesthesia.

We are just so excited about the great news today. Will you praise God with me that she is 99.5% healed! Yay!!!!

Wednesday, July 15, 2009

The Dentist


Today we took Mia for her first dentist appointment, you can never start too early. It went well, she cried a bit, but it was over fairly quick. Her dentist was surprised at how many teeth she has because she has quite a few of her 2 year molars and were not 2 yet. The only concern is her gums seem to want to take over her teeth, but he thinks we can just watch it, it isn't a major concern at this point. And she got a very pretty pink toothbrush for going. What a big girl she is!
In between appointments yesterday we took Mia to see the turtles in the Botanical Gardens at UCLA and then to see the ocean. She liked the turtles, but was not too keen on the ocean. When we put her feet in the sand she was ok right away, but then when we got by the water it scared her and when we tried to put her feet down she cried. She did get them wet though, but she didn't like that either...next time. :)

Here are some photos.

(I just found out we are going back on Friday for her surgeon to put her under and looking at her anal opening...pray for good progress by then!)







Tuesday, July 14, 2009

His mercies are new every morning

Yersterday, Monday, July 13th, we went to the helmet place in Torrance and got an adjustment. That went fine, and they said that her head looks great. As long as her head continues to grow, we will continue with the helmet. Sidebar: daddy saw that traffic on the 405 northbound was terrible, so he thought he would take the senic route back to UCLA. We went west to Redondo beach on surface streets, then just above that, Manhattan beach. Lisa decided we needed to relocate to Manhattan Beach after she saw her first Chocolate/Shoe store. Not Chocolate SHOES, but the best chocolate while you try on the best shoes. I just drove faster. Note to self, my detour added about an hour to our return trip. Lisa said, you could have just stayed in the carpool lane, we would have been fine. Man, I intensely dislike it when she's right. :-) Then, we had a 2:30 appointment with the neurologist. It was very busy there, and service was slow. First we saw this nice lady, she was a "fellow" neurologist. She looked Mia over and tested her reflexes. She answered lots of questions we had. We asked if our prior diagnoses was wrong, when we were told Mia would never have any higher cognitive function. She said, it totally depends on the individual. She said Mia had the most damage in the back half of her brain. Then she gave us a very lay person list of what areas control what functions. The very back of the brain controls ( or interprets) sight. Then, moving toward the front of the brain, speech, legs, eating, and finally, personality. (if any medical professionals are reading this, all mistakes are mine, not hers). The fellow had asked us if Mia could see and if she had a vision test. Mia clearly demonstrated for her that she could, in fact, see and we told the fellow about the diagnosis of being nearsighted when we visited Childrens Hospital, Los Angeles. She said that it is possible for other areas of the brain to take on new roles as a result of brain damaged areas. For example, Mia might be able to see because the part of the brain that controls hearing is doing the role of interpreting sight. (Or, God could have sent spare parts from heaven, and answered our prayers :-) ). They were not as impressed as we are about Mia sign language ability. They said that's good, but being a proud papa, I wanted them to do cartwheels in the halls, yelling that everyone should come see the miracle child with their own eyes.
The fellow neurologist left us to go talk to the doctor in charge, the attending neurologist. And we waited. And waited. And waited. (Now I know what Noah must have felt like). After 40 days and 40 nights, we saw the attending neurologist. He didn't have anything new to add, but I asked him about the possibility of needing a shunt in the future. He said that it was unlikely for her to need one this late in the game, as she hadn't had a problem with pressure in her brain from too much fluid after her stroke, but that we should just keep an eye out for the symptoms of building pressure, headaches, vomiting, unable to look up with her eyes. So that was good news.
This morning, we saw the bum surgeon (Not his official job title) for a check up. He said it looks good, but we forgot to ask for a percentage! (Shoot!). Mommy made an appointment to have Mia's bum dialated next week, while under anesthesia. So far, so good.
We have several hours to kill now, so we going to the beach at Maibu before the Nicu followup appointment this afternoon, then we are coming home. :-)

Saturday, July 11, 2009

Pictures





Mia now sits at the table like a big girl to eat her food, this is what happens when she gets her hands on the plate.


Mia styling with her "whale spout" or whatever you want to call it...isn't she just the cutest?!?!?!




Our friends Summer and Roy and their daughter Hillary came to visit us today. Here are a couple of pictures of Hillary and Mia, Mia loves music and really enjoyed playing the piano with Hillary.

Wednesday, July 08, 2009

So Smart!

I know that I am biased, but Mia is so smart. I am amazed at how much "stuff" she already knows and I am grateful because a year ago we didn't know if she'd know anything. God is so good! So, what does she know???

Well, she knows alot of colors, she knows animals...she can pick out the animal I ask her to from a line up...she got a toy bus with all the alphabet letters associated with some object and I will put two in front of her and ask her to pick out the T or the R, for example, and she'll grab that one, it's amazing. Just from playing with these toys she's learned so much! She knows about 8 words in sign language, and we keep learning more. She knows at least 12 body parts, that is just so amazing to me! If I ask her to do something, she usually does. I just wanted to take a moment and say, Praise God! Because we know that she is able to do all of this because of Him.

We just need to keep working on walking and talking and eating, some areas we are making progress and others not so much, but we know in time it will happen. As for her bottom, keep praying, we see the doctor next Tuesday and he'll decide if the home dressing changes are working. And continue to pray for no UTI's because she still has that catheter in. And thank you for praying!

Oh, and doesn't her head look so good! Some of you mention it now and then, but her head shape is almost completely normal, that's a miracle in itself, thank you God!

Monday, July 06, 2009

We are back from LA. The surgeon took Mia off the wound vac and I now get to change the dressing on the wound myself 3 times a day. I think it should go well, he thinks she can heal the rest on her own. This way she doesn't have to be put under anesthesia every couple of days. We actually didn't have any anesthesia today, she cried alot when he took the old dressing off, but was fine after it was done. Pray that she will heal quickly. She still has a catheter, so pray she doesn't get an infection there. We are scheduled to follow up in one week to see how she is doing. If he isn't happy with it, then he said he would put the wound vac back on. We are glad to be home and not have to do another trip until next week.

Thursday, July 02, 2009

93 Percent!


The surgeon changed Mia's dressing this morning and said her bum is 93% healed. (yay!) He also said we are going to come back one more time on Monday to have the wound vac removed, and then he is going to demonstrate to Lisa how to change the dressing herself at home. Whew! That will be scary and exciting! Mia is home again, Thanks for praying for our baby!! :-)
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