Never a Dull Moment

I am going to just stop asking for breaks. Things happen at certain times for my family and I to realize blessings - some we don't figure out until way after the fact.

So.....I do not want to complain but I have to say we never have a dull moment. :)

Honestly I don't think I would know what to do if we didn't have to be going non-stop.

What are you smiling about? Its 6 am!

Seriously I am NOT a morning person!

As you can see from the pictures I took while playing with our camera.....he was feeling good this morning.

I was very wrong about Jace not being really sick. I have been thinking this cough was residuals of the bug we just kicked over a week ago. When he woke up this morning he had that goopy thick snot in his nose but again I didn't think much of it. I gave him saline spray in his nose before bed and had the humidifier running all night so it would make since that the snot would be coming out.

We got a call from the daycare around lunch telling us that Jace was running a fever of 102.5 and had gunk coming from his eyes. YUCK! I picked him up and remembered that I had to get more ibuprofen for him and I knew I would need it to alternate between that and Tylenol. We stopped at Dollar Tree they didn't have any so I stopped at CVS. Poor baby boy was such a trooper dealing with me stopping at TWO stores when he felt bad.

That reminds me about something that happened this weekend. We forgot Jace's booster seat for meals and so at Papa Bryan's I just let him sit on the chair to eat. He was a bit short but he managed. Yesterday morning he was eating breakfast and was kind of twisting and playing in the chair. Well he continued to eat but he was sitting sideways. I was across the table from him so I couldn't see exactly what he was doing. I get to get him cleaned up and his arm was caught in between the back rails of the chair. I went to remove his arm and it was STUCK! There was NO budging that arm. He whined every time I tried to move it so Papa got us some soap and that helped slip it right out of the rail. Jace is too strong for his own good.....he didn't complain once about his arm being stuck. Just continued to sit there and eat breakfast like it was nothing. I will surprised if he doesn't end up with a bruise around his arm.

Knowing his tolerance for pain and not feeling well I can tell he is not feeling good one bit today! He tried to play very little but majority of the time he wanted to just be held or sleep. He napped for about 3 hours today (and I got to nap for about 2!) and woke up to eat dinner, get bathed and go to bed.

I hate bringing Jace in to his well checks sick! It seems to happen more than not with him. I guess I should appreciate that his immunity is building before he gets into real school. I made all my calls to the other mommies of the other children that Jace played with this weekend. I wonder if other parents do that or if I am just one of the few. I would rather the parents be prepared that the little one MIGHT get sick than for it to sneak up on them like it does for us and Jace. I really wish someone would tell me if their kid gets sick after being with Jace so I can prepare. Of course this has happened very few times - that may be because he is the one always passing the bugs. I am pretty sure the daycare doesn't seem to pass along the info unless its bad....like RSV in the infant room or a bad tummy bug.

Anyway - Jace is still not feeling great but after a hot steamy shower he seemed to perk up some. I am hoping his humidifier helps him with that cough enough for him to rest.

Mommy, I don't feel good :(

I'm just going to rest right here for a little bit

I bought a Playtex cup that is a stage 4. This is a sippy cup that doesn't have a spout so he can learn to drink from the edge of a cup rather than sucking on a spout. It was suggested for ages 2+ so I was surprised that he picked up using it so easily.

Mmmmm.....I will drink out of a new cup to get juice.....

C'mon mom - so I can drink from a new cup.....get that camera outta here....

Yes I AM a big boy!

Since Jace's fever was still returning tonight before bed I called my mom to see if she could come tomorrow after Jace's appt to watch him. Justin and I are VERY VERY lucky to work for an incredible company that is so caring and flexible to allow us to take care of our family. We have been blessed in so many ways and that is a major blessing! Justin and I were talking about that earlier.....any other job I probably would have been asked to quit or been fired with all the time I have had to miss with Jace. I hate to think about how other parents struggle balancing a career with a company that doesn't value family and a child that requires more attention than others. It would break my heart to have to choose between my job and my family. Oh it just breaks my heart for those that do. Another major blessing is my mom. She is always here to help out when we need her. That is another thought that is sad - daughters that don't have their mothers to turn to in their journey in motherhood. Thank you mom!

I have to end on a good note - I didn't see any seizures today! Even though Jace slept most of the day I am still thankful for another good seizure day.

Some Things Are Not Always What They Seem

*pause music on left sidebar before watching videos*

I thought that the pill form of Jace's medicine was helping but after this past weekend it doesn't seem to be the case. It is so disappointing however I am very grateful for the many days that his seizures were not occurring often. Now, I just need to be sure the daycare is paying enough attention to catch them since I know they have to be happening. I am trying not to be too wrapped up in catching EVERY seizure and recording them all since we know they happen, we know when its out of his "norm" seizures and we know at this point the medicine is not working as well as we hoped. 

We went into Lexington this weekend to see the progress on the barn.

It is so exciting to see the barn from the VERY start to the VERY end.

I can not wait to see it when its complete.

Peek a Boo

I see YOU!

WHOA!! This is so cool!

Saturday night when JB was doing the Varmint Hunt with his buddies Jace and I went and had dinner at the Schumpert's House. Derek was with JB so it was Misty and I with the kids!
I think Jace loves eating dinner with friends.

YUM! Pizza party!

Jace was being silly earlier today and I caught some of his silliness on camera.

I don't know one kid that has not put this toy basket over their head and walked around like that. I was wondering when Jace was finally going to and he did!

And Jace loves to sing or preach....whatever he is doing it is something that he is passionate about!

He really was putting on a show - he was spinning and dancing for us after he sang.

Poor Jace has been coughing ALL weekend! I have no clue what he has this time but he has to be miserable. No fever - THANK GOD - but a nasty cough. He even coughs in the middle of the night while he is sleeping. We don't have a humidifer in Lexington but we are using one tonight and so far it seems to be working. I have not heard him cough once since going to bed.

His 18 month check up is Tuesday so hopefully they can check into this cough then too. I pray his ears are cleared up and this is just a small virus that needs to run its course.

I will update again after his check up on Tuesday!

Forks and Closed Mouth Kisses

Jace used his fork properly for the first time all on his own tonight!

He had Mac-n-cheese, Gerber Graduate Meat Sticks and left over sausage for dinner. He actually got some of the mac-n-cheese on his fork and ate it right off it! However, he quickly decided that it was much quicker and easier to just use his hands!

I was so proud of him and let him know that too.....he probably was thinking "mom - you are nuts getting excited over something so silly!!" That's what mommies do right?

Before bed, Justin was holding Jace and  I leaned in to give him a kiss. This is something that is hit or miss with him. Well tonight he decided he wanted to give me a kiss and proceeded to with his mouth closed, lips puckered and even made the kiss sound "MUAH!"

Oh it was so cute and heart melting! :)

Today I decided to listen to a CD Justin and I received when Family Life came to the bible study at work when I was big and pregnant. It was a story about a family that lost their first baby, a little girl, after just 7 days of life so I decided to put off listening to this story until after Jace was born. The CD came across my mind today and felt very compelled to listen to it finally.

All I can really say about it is WOW! Even if you have not lost a child this story still helps you to remember that God is with us in all of our battles. He can and will step in as He sees necessary to glorify His kingdom!

I was taken by surprise thinking this baby girl was born with heart issues or was expected to have issues but she wasn't. She was expected to be perfectly normal but after birth they found she had brain damage that would require extensive brain surgeries she would likely not survive through. This really hit home! I could relate with this family and its comforting to hear their faith grow through their journey as well. Obviously Jace's actual life doesn't depend on surgery but his quality of life does. I know what kind of thought process the parents went through thinking about the decision of brain surgery. This family inspired me to continue to let go and place my battles, all of them - big or small, in God's hands. I am reminded that we all have purpose in life and we will all leave a legacy. Our legacy should include worshipping and glorifying God's Kingdom. Even though our lives can have incredible struggles on this Earth we will one day be in the arms of Jesus. His timing is perfect and though we do not know WHY we go through what we do and when we do this is a great purpose He has in this all. I have come to realize in the the past years reflecting back on all the hardships and good times I have encountered to see the bigger picture. I still have questions about things but I know in my heart He has a path for my family and me.

If you want to hear this CD, it can be purchased here.

We are headed back to Lexington this weekend and get to spend time with family and friend there. Jace is really starting to enjoy the country! I love that he gets to experience both the city and the country. I know he is going to love Lexington as much as Justin and I do.

Blessings in Abundance

Blessings are in abundance if you open your eyes to see them!

And I am seeing SO many blessings right now!

Our barn is being built tomorrow (well will be started) and I am SO excited to see it this coming weekend!

JB will be there when they start it to be sure all the plumbing, placement, and all that jazz is lined up. 

We are very blessed to have the ability and means to have this built.

Another major blessing is our insurance deductible has been met with the assistance we qualified for Jace's medication. Basically the way the program worked is the claim still processed through our insurance and the company providing assistance fronted the bill for what we owed out of pocket! This was more than we could have asked for and this will make the following appointments and other medication refills much more manageable.

Jace's eczema is starting to clear up, slowly but surely. The daycare is great and is putting lotion on him through out the day to help out. The bad parts of the eczema is healed and now he just has some of the tiny bumps.

However, he is now dealing with an ear infection! Grrrr....this is ok. He has ear tubes that were placed back in May of last year. I know they are working because the left ear that is infected is draining as it should with tubes. Its great to say this is the first infection he has had since having the tubes placed! I called his pediatrician about this thinking since it was so obvious that it was an infection that they could call in Rx ear drops. I know he doesn't need an oral antibiotic since there is no fever or any other issues - just on going ear drainage and the ear is bothering him. Well, they told me I had to bring him in. We were just there on FRIDAY!! Had the doctor done a FULL exam and not just looked at his rash I bet he would have caught this. In order to avoid having to miss work for this appointment and pay ANOTHER unnecessary co-pay I called his ENT that did the tubes. Luckily they agreed to call in a Rx for ear drops.

I also made the decision to switch back to the original pediatrician we started seeing with Jace from Day1. I like her a lot and I only switched to a male doctor for the sole fact that when Jace is older he would not be as embarrassed about having to show his privates to a woman. I decided since I am the main person dealing with the doctor still that I wanted someone I know better and has been there from Day 1. Don't get me wrong - the new pedi was a good one but I just want to go to someone I feel Jace is much more known by. His medical history certainly is no walk in the park. Also, this original doctor is much closer to my work. I was not thrilled about having to go the opposite way of work and past where I live in the middle of a work day.

Anyway - I have rescheduled Jace's 18 month check up with his original pediatrician and it is set for Feb. 1st. What is great about this is his ears can be checked up on since that will be the last day of his ear drops and the infection should be cleared up by then!

Timing seems to be working out lately for us in every aspect and I owe all the thanks to God for that!

I asked and I have recieved, I seeked and I have found, I knocked and the door has been opened!

It's Time to Start Planning the Party

.....for Jace's 2nd birthday! As of Saturday the 22nd, he is 18 months old!! 
(YES....I NEED 6 months to plan)

I thought time flew when I got out of high school. No way, once you have children it vaporizes!

Bounce bounce bounce....

Uh oh....almost lost it....

ok.....this is better....bounce bounce bounce.....

I took Jace to the doctor on Friday and found out that his rash is in fact just eczema! Thank God!

We were given 2 presciption lotions and instructions to wash him with Dove soap, use cooler water for baths and to lotion him up all the time, you can't lotion him too much when it comes to eczema.
I am SO happy to know this is just eczema. Apparently it is VERY common in babies in the winter time.

This past weekend we went into Lexington. We have been planning on building a shop on our land. It will be much nicer when we go in to visit and have our own place to stay at. We love visiting with Dad but 800 sq ft with an 18 month old is not always relaxing. Not only that but usually there are other grandchildren visiting Dad so this will just help everyone enjoy their visits to the country :)

We had the land cleared last year but had more done to get the building spot situated.

We took Jace out there when Justin was burning some wood piles and he loved it. He saw us picking up roots and sticks in the building perimeter and started to "help". He walked around picking up sticks for about 30 minutes. It was so cute!

Here are some pictures that JB took while we were out on the land.

You put that camera up! NOW!

The stie of the future Bryan Family Retreat

Who you lookin' at??

Oh - the big camera......

Let me have it....?

I WILL get that camera!

I can't wait to be able to stay out there. Jace is going to LOVE it! We all will!

Saturday we went to the Schumperts to hang out with all of them.

Jace loves going over there and so do JB and I. 

We had dinner over there and to our surprise Jace actually ate Mac N Cheese......2 helpings at that! 

I started to think maybe I need to make dinner dates with other children to get Jace to eat. He eats right along with his friends. When its just mommy and daddy he likes to act like he hates all food. Grrrr...... 

After dinner we were talking and JB went to check on Jace in the play room. He goes in there to find Trey with blue marker all over his hands! HA! Its was so funny. Derek and Misty went in the room farther and found he had drawn on the walls. I would have thought maybe Jace did it but the marks were too high on the wall to have been done by that shorty. HEHEHEHE....its was so cute...Trey was caught blue handed. :)

Thankfully the marker was easy to wash off the wall and there was no permanent damage.

On our way home today Jace was talking and talking away!

I love to hear him talk and it makes me feel good that he is developing his verbal skills but today was almost annoying. Here is a video clip of what he pretty much did the full 90 minute ride home.

He was clapping, screaming, talking, blowing rasberries, humming, and just going off.....Part of the problem was he wanted his paci and he had thrown it. I have come to the comnclusion that I KNOW he doesn't need it and when and if he throws it then he loses it. He will learn.

I went back to using the powder packets of Sabril this weekend and just as I thought....he had more seizures! I switched Saturday morning but I didn't see the increase until today. When he is on the pills he has 1/2 as many seizures and they are not as intense. Today he had about 6 seizures and they were longer and intense again.

I plan to call his epileptologist tomorrow morning to tell her this and see if we can get his prescription written for pills rather than the powder packets.

And more pictures just for fun...and cuteness! :) 



You woke me up for this?? Seriously? Its 5:45 am!



Go away mommy.....I don't wanna take this now

Do we HAVE to do the picture now?

More Proof of God's Hand at Work

With Tuberous Sclerosis you can't expect medical bills to be cheap at all! So as they began to build up before we hit our out of pocket max Justin started to collect the bills and put them in order. He was slowly sending some money to certain bills to help make the mountain not look so impossible.

This morning he called to make a payment to the Texas Children's Hospital bill that we have from Jace's first hospital stay last year. This stay was extended way too long because they were rescheduling Jace's MRI that required him to not eat for at least 4 hours. Since he was 6 months old at that time going that long without eating was a stretch and every time they said his MRI was going to be at this time it ended up being WAY later. We would end up having to make them reschedule us since having a hungry 6 month old is not pleasant for anyone. Well after this stay we received the bill and it was pretty outrageous. I wrote a letter to them to explain my frustration about this. They called us and said they were going to cut the bill in half. What a blessing!

We were blessed again today! Justin called to make a payment towards this bill, just like he did last month. The lady told him that the account was at a $0 balance. He said ok and hung up. Then got to thinking how in the world can it be a $0 balance?!?!?! He called back and they said 2 weeks ago they zeroed out the account and closed it.

Yet just another act that proves God's hand is at work!

Prayers are being answered! Thank you to anyone and everyone that has said a prayer for us and Jace.

They are working!

Jace's new coat came in the mail today! I only had light jackets for him and after the freeze last week I knew I had to get him a heavier coat. There was a great deal on The Children's Place website so I ordered one.

I ordered 24 months even though he really only wears 18 month in hopes that it will still fit next winter too! :)

A friend of mine says her sons still fits in his from last year so its possible.

I had to try it on Jace when we got home. He looks so handsome in it :)

The best part of the coat is its 3-n-1. There is a removable hood, the fleece liner can be removed to be used as a light jacket itself, and of course it can be a huge coat.

Uh Oh Spaghetti - O

*Pause music on left sidebar before watching video*

First off.....only one seizures today!!! WOOHOO! At least only one that was seen.

I posted last week about a rash that Jace has. He still has it and although it is not getting way worse it certainly is NOT getting better. It has gotten worse on his stomach but the back is the same. I am so boggled over this rash. The lotion used for eczema is not working and it get pretty red when he takes a warm bath/shower. I would think maybe heat rash but he doesn't sweat.....and would a heat rash last 3 weeks?!?!?
Here is a picture of the rash....I am calling the pedi tomorrow to see what they think. I just PRAY it isn't a reaction to any of his meds since it can affect his liver and other internal organs.....sometimes the first sign is a rash. That really concerns me.

After posting on Facebook about Jace not eating my food at home he made me a liar!

He must have a FB account somewhere and was like "I am going to prove her wrong! Watch!" HA!

He has gobbled down his dinner all week. He was eating as if we never offer him food!

Although he is still somewhat picky about what he eats he is at least eating something.

I decided to be a little creative since he stopped eating his veggies so well like he used to. (Yeah I was THAT mom that always bragged about how he would eat his veggies and now he is making me eat my words). So, I know that he will not touch a noodle normally so putting pureed veggies on to noodles like you would spaghetti wouldn't work. BUT I knew that he would eat almost ANYTHING on a slice of bread.

I took a jar of baby food peas and spread it all over a slice of bread, gave him pieces, and he scarfed it down! He seemed to like the Pea Sandwich. At least with this maybe I can get him accustomed to the flavor of veggies again.

Since I still had some peas left I gave him that again tonight. I also put some beans on his plate that he would touch tonight. That is ok because when I was eating some left over spaghetti he was pointing at it like he wanted it. I put some on his plate and he ate it. I think he ate more of my dinner than I did. HA!

I was thinking tonight about how easy we have it when it comes to taking his medicine (please don't make me eat my words again!) twice a day. He gladly takes them like they taste good. I think the main reason for this is that he really only had milk or water given to him to drink. So to get juice it must be a treat to him. Up until recently I would hardly ever offer him juice. I just didn't want to deal with him one day throwing a fit for a sugary drink when he really needs water. I have recently bought some V8 fusion that I offer him at dinner if he hadn't eaten any veggies at daycare or at dinner.

Anyway here is Jace gladly taking his medicine, eating spaghetti and his pea sandwich. :)

Ok....I think I like this

C'mere noodle....get in my BELLY!

 

More??



Please......now?

What a mess? Glad we have Lil Bit who loves to clean up after him.