Tuesday, November 11, 2014

So... Parker said Mama today-- a lot. I am pretty sure it is official now that his second first word is Mama!!!
When they asked "Where's mama?" He instantly looked directly at me several times. When I asked "Where's my nose?" He lunged for my nose and twisted the heck out of it and thoroughly explored the orifices. He's got that one down. As seen by my cover photo... he really likes noses. He also found his own nose today and pointed to his mouth when we asked where his mouth was. This shows so many things! He is understanding what we are saying and following directions. He is spatially aware both of his own body and his surroundings. He can physically cross midline. About a week or two before he fell, I had begun teaching him his body parts, beginning with his nose, mouth and cheeks and it shows he is relearning that. It also shows he can see!
He is still throwing up. With or without the throw up getting enough food in him is tricky and very time consuming. After I posted about the g-tube, I had two wonderful friends contact me and talk to me about their children's g-tubes and what a blessing they are. It takes so much of the stress out of feeding them, giving meds, and making sure they are getting enough calories and fluid... Right now we spend about 5 hours a day just feeding him. This morning it took 40 minutes for him to eat 4 oz... which he threw up. I immediately began feeding him again and got him to eat 3 more ounces plus 10 small bites of muffin and I was super proud of myself. It was over an hour in all. I can't do that when we come home. Thankfully I have 5 hours a day I can devote to that at the moment, but a g-tube is looking better and better all the time. Sometimes people are concerned about the scar, I figure that scar is the least of our worries. This kid has some serious war wounds to show off and be proud of. He is a fighter and has worked hard to earn them.
A big concern that popped up today is our insurance wants to potentially send us home. The Doctors are going to fight for us, but I figure some prayers in the right direction can't hurt a bit. (That's where you come in) Our insurance has been so incredibly amazing so far and I know we will go home when the time is right. As I look back at the past 10 1/2 weeks, our timeline has been in the Lord's hands all along. If possible, we would love to stay as long as possible because he is progressing so much! He gets 3 hours of directed therapy everyday, in addition to what we do with him in the room in any spare time we have. Also, the therapists in the hospital are AMAZING and I am in awe of how well they read him to know how much to push him and how far and help him discover his potential way before I would dream possible. I am not ready for that to end yet!!! Jessica was laughing tonight that we are praying for Parker to stay in the hospital. She found it ironic. Aren't we supposed to be praying for him to get better? He is getting better. Every day.

1 comment:

  1. Nicole Dial Anderson, Cindy Thompson, Tina Winkel Mortensen and 88 others like this.

    Tina Winkel Mortensen Praying he can stay and continue to progress!

    Liana Lindeman I'm happy Aetna has been good to you thus far. I've had to seriously battle with them a few times in order to get them to pay for Benson's care. If your doctors can't get them to cover it, give me a call. I'll tell you what I did, maybe it will help you. (I'll message you my number in case you don't have it.)

    Ashley Drury Swenson Thanks Liana

    Regina Larson Pearson He said "Mama"!!! That's enough to melt your heart!! I can't believe all the progress he is making! I know God is with you all! And little Parker is in my prayers that his tummy will settle and be happy! I fought my daughters doctors for months when they wanted her to get a g-tube. I finally gave in and she got one when she was 11 months old. I'm not going to lie, the first few months were hard because the doctors wanted her to get more formula at night than her tummy could handle and she would throw up every morning. But we slowly worked up to what the doctors wanted and it was only a few months after she got it when I thought to myself "this is soooo much better! We should have gotten this g-tube months ago!" It has been such a blessing to not only my daughter but to her dad and I. It's so nice to not have to stress 24/7 about her getting the calories she needs. You all are continually in our prayers!!!

    Jessica Dahlquist The best word in the world!

    Kristi Perkins I second (or third) the gtube. I wanted to tell you that it's not really a big deal, but also don't want to downplay your concerns. One nice thing ua that you can get a pump that feeds him at a rate he can handle or you can feed him while he's sleeping so he gets enough nutrition but it doesn't interfere with life.

    Megan Ryan Holm Parker IS a fighter! So is his incredibly inspiring Momma.

    Amy Ward So much good news! Yay! Gotta laugh at Jessica's comment...such a smart girl.

    Nicole Dial Anderson He's such a fighter ashley and has a fighter for a mommy too! Good job buddy keep it up! Even if it means getting your nose twisted sometimes:)

    Robyn Thomas Swenson It is so amazing to watch his progress! I'm sure Jessica learned to find humor during an incredibly difficult time from you!

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