Jace's Song of Love

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As promised - this is Jace's Song of Love!

Enjoy! :)



This is the Stuff

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I heard this song on the radio on the way to work today and thought it was SO truthful!

I love Francesca Battistelli! Her songs are always feel good songs and all about life.

Also, I want to urge anyone that owns or works at a company that would be interested in helping out children with Song of Love to watch this next video:

"Raising Funds, Raising Voices"! is a special program which enables corporations and other groups to help Songs of Love financially and creatively. As a bonus to a group's fundraising efforts on their behalf, Songs of Love staff have been holding on-site recording sessions with our portable studio. People across the country are becoming instant "recording artists" as they all sing on these guaranteed "hit " songs of love!

I have already approached Mustang Engineering, where JB and I work, about this opportunity. I really hope they join in on the "Raising Funds, Raising Voices" Program.

I am still working on getting Jace's song up on the blog but until then check out this great program. You do not have to be a company to donate. Individuals can do so as well.

Jace had no seizures today that we have seen! This GREAT news! I am going to continue with the pill form of his Sabril until this weekend. Then this weekend I will use the powder satchels and see if there is a change.

The Pill vs. The Powder

 



Something To Talk About

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Jace has something to talk about!

He has really been picking up words and actions.

Some new and some not so new. I love watching him hit milestones and do new things. Here are some recent things he has done:

He says "more" and then it sounds like he says "all done" and "please" (of course the last two with signs too)

When we ask Jace what a cow says he says "mmmmmoooo" :)

He picked this up WAY quicker than I thought he would and loves to see cows in Lexington or wherever else we happen to pass by cows.

Last time we went to Lexington JB was making the car shake from side to side and Jace LOVED it. He started to swing his head from side to side in the car seat and when we ask him to dance he does this as well. The only problem is some of the swinging looks like he is BANGING his head into his car seat - OUCH!

We play peek a boo a lot but recently Jace has started the SLOW peek a boo! :) He is too cute!

One of his favorite toys lately has been his cars. When we play with the cars we say "Vroom" and push it around. He picked up on this so quickly and I think he looks so cute crawling on the floor playing cars.

This video isn't the best....he plays more with them on carpet. I could imagine the hard floors hurt his knees after a bit.

Today I put his backpack on him and he walked around with it for a while. I NEED to get him a backpack with his name on it. He likes his backpack just like Dora has. :)

This past week we received Jace's Song of Love written just for him. Its very cute. Once I can figure out how to convert the sound file into a video without actually applying it to pictures I will post it, along with the lyrics. Songs of Love is a GREAT program. You can go to this website (Songs of Love) to find out more information on it. They operate on donations, so if you have the ability to donate I encourage it!

We also received the medicine we ordered from Canada. I was surprised at how quickly we got it in. I am starting to wonder if there is something different between the powder packets to the pills. And then if there is a difference between the pills made by Sandoz and those made by Lundbeck. The days Jace has taken pills crushed up he has less seizures.....this could be coincidence or GREAT news that we seemed to have stumbled upon! We will be sending back pills to replenish the Fielder's stock from what they loaned us. As I have said before there are reasons for everything and God has a path laid out for us. Even after all of this mess with insurance deductibles and co pays, I see more blessings we have gotten out of this ordeal than hassle. If we truly are seeing that Jace is having less seizures when using the pills rather than the pocket satchels then that alone is a blessing. So far today Jace has not had any seizures we have seen. I still have a few more powder satchels and I will see after a few says of using the pills if his seizures are at bay. Then I will test out the powder satchels later this week. How great would that be!! If we can control his seizures with the pills until he can have surgery...God is GREAT!

We are Battling.....

I woke up this morning, got ready for work, and woke Jace up for school. I heard him breathing heavily then heard that infamous seal like barking cough - I now know is classic Croup cough. He sounded terrible and told JB that I can't take Jace to daycare with this. I could only imagine the looks I would get when dropping him off and then the call. I could just imagine it "Mrs. Bryan, are you aware of the terrible cough Jace has? He seems to really be having trouble breathing. We are concerned about it and really think he should see his doctor." Yeah I would win Mother of the Year from his daycare for sure ! HA! :)

After I decided to keep Jace home I put him back down to sleep and he slept until I had to wake him up for his appt at 11 am. He took a nap after the appt and he is napping yet again. It seems like he is going to be like me and sleep his sickness away. Sleep is the best medicine sometimes.

I just hope that with all this sleep during the day that he sleeps well tonight!

At the appt they gave Jace a breathing treatment to jump start the reduction of his inflamed vocal cords They also gave me samples of pediatric prednisone so I would not have to go to the pharmacy and pay an outrageous amount for that medication. This steroid will help to continue reducing the swelling cause by croup. I am hoping this is not something we have to deal with every year when the cold weather blows in and colds are being passed back and forth.

I for sure do not have the time to take off from work but life is not fair or easy. We don't get a break from the regular illnesses that babies get just because we have to deal with greater issues. We have just learned to take what is given to us and roll with it. If I tried to fight it I think I would either go crazy or lose any drive to continue on strong for Jace.

Yesterday when we got home from Lexington we had a package in the mail. It was the medicine that, our friends, the Fielder's sent Jace. They are more of a blessing to us than they know and we can't wait to meet them and thank them in person! Even though I have a few days left of the powder packets for Jace I wanted to see how he would do with the pills being crushed like we do his Banzel. He takes it just fine and it seems easier to prepare than the powder packets that require more precise mixing and it is much less wasting! With the powder packets and at the US rate of $30 a packet I waste $20 each time I administer his medicine to him. That just is absurd! Ugh...I must get off that topic. Its so much more involved than just the pharmaceutical companies charging outrageous amounts.

I asked the pediatrician about the rash on his back and chest and she thinks it may just be a viral rash of another kind and it was not croup that caused it. I am going to call Dr. Von Allmen tomorrow and see what she thinks about possibly the medicine causing the rash.

Tis' the Season....

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...to get sick? :(

My poor baby boy is not feeling well. I am not sure what it is but he looks terrible.

He felt warm Friday night and it seemed to just go down hill from there. I was not sure if he was actually "sick" until earlier today.

Saturday he crawled up into my lap and took a nap.

After this nap Justin came back from doing some work out on the land and Jace was glued to him. When JB wanted to get back to the land Jace was not to happy about this. Since we still had time until we were going to a baby shower we rode out to the land and pulled Jace around in the wagon.

Later on that day Jace and I went to a baby shower for Staci with Misty and Keely. Misty rode with me to the shower and Keely was in the back with Jace. I look back there and they are holding hands! It was SO cute! They even continued to hold hands once we were getting them out of the truck so I had to snap a picture of this cuteness!

Saturday night was a night of TERRIBLE sleep! Jace was up all night long every 10-20 minutes after 4 am.

I don't know if it was the rough night or what but I started to feel yucky today as well. I pray this is all a weather change fluke and we are not getting sick. 

I can handle Jace or I being sick but BOTH of us? That's not a good combination.

My main concern about Jace getting sick is it normally increases his seizure activity.

On a side note, Jace started with a rash on his back a couple weeks ago. I started to put it off as possible confetti lesion that comes with TSC. As the rash started to spread and cover his whole back I started to rethink that. I wondered if maybe it was eczema so I started to put the soothing relief lotion on his back. A week later the rash hasn't improved and actually spread to his chest and tummy. It didn't click until Friday night that it possibly could be a side effect of one of his medicines. I called the pharmacy to find out if it could be and they said it very well could be but we shoudl call his doctor on Monday. I will be calling his epileptologist tomorrow morning to see what we need to do. I PRAY its not his medicine and its some weird heat rash or something viral.

We use a sound machine in Jace's room when he sleeps. He usually never gets a hold of it unless we are at Papa Bryan's. He got a hold of it and had a blast playing with the different sounds on it. 

Jace took our swiffer from the laundry room and was playing with it today when we got home.

He is so cute helping us clean. 

 

I will probably update more tomorrow once I find out what the doctor says about his rash and if we end up at the pediatrician for this nasty cough/cold he has.

For We Walk by Faith, Not By Sight - 2 Cor 5:7

I got a call about Jace's refill of Sabril over Christmas and set up a delivery to us on Jan. 4th. Well, the 3rd came and I got a call from the pharmacy saying they needed to reschedule the shipment. We did and I didn't ask why they needed to. I just assumed that they had some issue and wanted to be sure it would be ok to reschedule for the drop off to be on Thursday.

I get another call from the pharmacy yesterday and after talking with them I find out that the delay was that we needed to pay our copay. With the way our insurance works this amount would basically be our whole deductible. We were approved for an assistance program that would discount the copay to an extent but it didn't take off that much. Even with the discount program applied we would still have to pay $2400!!! This is ridiculous! The worst part was that we had to pay this before they could even ship the medication to us. Basically we had to come up with this much money to continue giving Jace the only medication the works for him. The math equals out to about $30 a packet that Jace takes and he has to take 1 1/4 packets twice a day. I don't get how they can charge basically $75 a day to keep our son's brain calm.

Even with all this "bad" news there are blessings that a occuring in the background. We are reminded that God has brought people into our lives that care about us. There are even people that we have not physically met but are linked to us by TSC that care about us.

Another friend that has a son with TSC told us about a Canadian pharmacy she got his Sabril from and gave me the contact information. We decided to get Jace's doctor to fax an order to this Canadian pharmacy since they offer the medication for $1.30 a pill/packet. We are going to switch from packets to the pills (that we will crush) so we won't waste as much. The packets can't be divided into fourths like a pill can. Since we are ordering through Canada it is going to take longer to get it shipped to us. We were concerned about this since we only have about a weeks worth left from last month. However this is where more of our friends we have not met yet have been a blessing to us. Justin has made friend with a couple on the Texas Bow Hunter Forum that has a daughter battling with TSC. She takes Sabril and they have enough to help hold us over until we can get his shipment in. They live 5 hours away and we were willing to drive there to get some from them. The couple told us there was no point in doing that and they would just mail it to us. God  is GREAT! I have to give a BIG THANKS to Paul and Michelle! I can't wait to meet y'all in March!

Of course we always have family that is there for us as well. We appreciate everyone that has been there, prayed for us or helped us out in anyway! Thank you!

This is the reason why I can easily take all this chaos and see God. He is there and He is working. He is orchestrating our journey to cross paths with people that are meant to be in our lives and to overcome obstacle that make us cling to Him tighter. In all this there is reason and purpose. Our faith may help someone come to know Jesus or make help another family realize they need to cling to God tighter, even in times that aren't difficult. It is hard but I must continue to remind myself that 



On a lighter note, I was asking Jace for a kiss this evening and he kept ignoring me so I wanted to see what he would do if I got sad. I started to fake cry and after about 10 seconds he walked over to me, put his head on my lap, and looked up at me.....I asked again for a kiss and he leaned in and gave me one. He is such a sweetheart! I love how cuddly and sweet he is!

Good night! :)

Monkeying Around and Bouncing Right on into 2011

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Right before 2010 ended Jace became a little monkey :)

Here are some cute clips of him climbing.

New Years came and went as quickly as Christmas did.....and it left me with a question -

Where did 2010 go?

Wow that year FLEW by!!

 On New Years Eve, Jace and I went to the Schumpert's house for Trey's 3rd birthday party. They had a bounce house there on top of all the other toys they normally have out there.  

I put Jace in the bounce house with a few of the other kids and he was baffled at first. After watching the other kids (most were older - almost 3) he realized what he needed to do and started to bounce a little bit. He had a blast with all the kids there. We love visiting Trey and Keely when we go to Lexington. Trey is so easy with Jace and Keely is about Jace's age so they get along well playing.

Here are some pictures and videos of the bounce house and tunnel at the party

Jace loves to climb all over Papa's wheelchair. He was climbing on it and talking to Papa so much this past weekend!

Papa always makes sure there is Bluebell in the freezer when his boys come to visit. Jace finally tried some and check out this response! Typical Bryan boy for sure!

He was asking for "More?" and signing "Please"

Trying to teach those manners early! :)

Jace has really been doing well with his speech and I am so excited about this. The more and more I listen to him I can hear actual words like "More", "Lil Bit", "Door", and so on.....they are here and there but I LOVE to hear this considering I have been so concerned with his speech.

The carrier I rented came in. I originally was going to try the Ergo Baby but was recommended to try the Beco Butterfly 2. I actually loved it and I think Jace did as well. It was so easy to get him on and off of me without assistance. Also, I never once felt like I was toting around 28 lbs on me.

Checking out the carrier before we headed out to try it

Mommy and Jace both liked the Beco

We had off on Monday the 3rd so we took advantage of it and brought Jace to a partial day at daycare since it had been so long since he has been there. He did well and was EXHAUSTED after that day!

He could barely keep his eyes open on the way home

Today was his 2nd day back and it went much better than yesterday. He ate his lunch and took a long nap with all of his friends at school. I think he is enjoying going to "school" right now and I hope that continues.

Tonight I put him in the bath and let him use his bath crayons to draw on the tub. I am convinced that he is a lefty! Here he is drawing on the bath tub with his crayons. BTW - these crayons are awesome! So easy to clean off the tub and they color even when wet!



Playtime with Playdoh

Jace got a can of PlayDoh in his stocking for Christmas.

We didn't play with it until tonight.

Jace is such a texture child. He is picky with food because of textures and sometimes just flat out refuses to touch some foods. I was not sure how he would react to the PlayDoh.

He was a little unsure of it until my mom and I took part of it and played with him.

Still not sure of this squishy stuff

Here is Jace playing with the PlayDoh and then signing "All Done" after he is finished.

Today is my Dad's birthday and so we made cakes for my mom bring home to him tomorrow. They are chocolate fudge cakes - YUM!

Jace didn't help too much more than just grabbing the frosting canisters

and getting chocolate all over himself :)

Jace says Happy Birthday PawPaw!

Oh - we got out professional picture from the Christmas party back. Here it is.....
we look great if you ask me......he is one sexy man! :)

Happy Birthday Jesus!

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MERRY CHRISTMAS
and most of all
HAPPY BIRTHDAY JESUS!

I hope that everyone had a great Christmas!

We sure did....it was busy (what's new) but good.

This is going to be a pretty short (in words) but full of pics and videos.

We celebrated Christmas on Christmas Eve since Jace is still too young to know the difference.

I had been using the plate we got at the Nutcracker Market as a countdown to Christmas but we finally got to use it for Santa and his cookies! 

Jace's letter and cookies to Santa

Jace's letter to Santa



Santa wrote a letter back to Jace

Opening all of our Christmas Eve PJ's - our family tradition.

Our "Christmas" morning we got Jace to the table to eat breakfast without seeing all of the gifts! :)

Happy Baby!

Oh no! Tickles from Daddy!

Oh Mom.....more kisses?!?!

 Here is everything that Santa brought Jace.

WHOA!!! All of this is for ME??

COOL! A roller coaster!

His very first ride on the Roller Coaster He doesn't know how to keep his feet up on the car but he will learn.

He was really liking the roller coaster until he hit his foot into the wall :(

This wagon runs a close race with the roller coaster!

And Yes - he DID like it - HE LOVES IT!!  

His very first slide!

 

He even learned how to slam dunk so quickly!

First Blocks

Along with those toys he also got a Bilibo toy, Colors made for the bathtub, books, and other fun stocking stuffers (playdoh, a toothbrush, goldfish, etc)

Here is JB reading the book Jace got him called "Daddy Loves Me" and then Jace reads it back to him.

Santa was good to JB and got him a Predator Call and some workout shirts.

I must have been good this year as well.

I got my first Coach purse. I LOVE it! He did so well picking it out that I have to brag on him! ;)

JB has started a monster I tell ya! I am hooked on these purses!

Our Christmas PJs

After Christmas at our house we went to Nana's house. It had been awhile since Jace saw his Nana and Aunt Casey. It was great to see them and he enjoyed himself.

Napping on the way to Nana's house

Nana and Jace playing with a bow

There was some Christmas music special on and Faith Hill was singing on the TV. Jace saw her and started to kiss the TV when she came on......watch this:

Christmas Day and the rest of the weekend we spent in Lexington at Papa Bryan's house.

Jace got into Papa's Tupperware cabinet and went wild! He has seen me baking recently which required lots of stirring. He picked up on it way quicker than I thought he would.

He was trying his hardest to make some Christmas goodies for us!

Our Baby Can "Read"

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Reading "Harry the Dirty Dog"

Tonight we did Christmas with my parents. It was early but we have been itching to give them their Christmas present. We got them a few nights in San Antonio for New Year's Eve. We went there a few years ago and the firework show on the riverwalk is beautiful!

My parents got Jace a picnic table that also doubles as an easel for when he is older and does "art".

It's was funny because at first he tried pushing himself back from the table to get up. It took him a few tries to figure out the seat doesn't move and he will have to swing his legs around to get off the bench.

An easel?  No thanks....I just want to sit here and read!

Jace has started to "read" his books recently. My mom said she came into his playroom and he was sitting on his chair reading "Hop on Pop" and she offered to read it to him and he glared at her. She offered one more time and he threw the book. He does this with his paci as well if you ask if you can have it. He will throw it away and I am sure thinking "If I can't have it, you can't either!" He is so much fun!!!

If you look closely he does move his mouth with some of his words.

This is so incredibly cute for the first few minutes.....however he did this for about 30 minutes.

He doesn't exactly have an "inside" voice yet so you can imagine how it can get old.

Even still, I am so proud to know that he loves books and I hope he continues with that love since it really is true - If you can read, you can do anything!

I LOVE this book!!

I can not believe Jace will be 17 months old tomorrow!!! Time just goes faster and faster!

I am waiting for my first gray hair to pop up....with everything going on this past year you would have thought I would have started getting gray already. So far so good....I seem to have my mom's hair.