Saturday, March 30, 2013

good days and bad days

Sweet little Anton had a really hard day. He wouldn't open his eyes after he woke up and he was in a lot of pain all day long. Anton gets corneal abrasions really easily and it seems like no matter what I do it doesn't prevent them from happening. We try to put ointment in his eyes every night but even when we do he still gets corneal abrasions. Anton's eyes are just like his skin, if his eyes get too dry and he blinks he can scratch his eyes or if he rubs his eyes he can scratch them. It is very painful when this happens and it normally takes several days to heal. We keep the lights low, give him pain meds and keep his eyes lubricated until they heal. 

The craziest part about it all is he was fine yesterday. We painted Easter eggs and Papa T and Wita's house (Jason's parents) and he has a great time. Here are some super cute pictures from yesterday.

 If I have learned anything over the past year it is we just have to roll with it. We make VERY tentative plans when we make plans and we make sure that whoever we make plans with knows it all depends on how Anton is doing. Typing it out makes it sound worse than it is, this is just the way our lives are and we don't stress or worry too much about what tomorrow will bring. We take advantage of the good days and rest on the bad days. 

I was talking to Anton today and sharing with him how he can always remember that the good days outweigh the bad. Having bad days are hard but he has far more good days than bad and we can be thankful for that. I was talking to him about how this life is but a vapor and no matter how hard our lives her we can still use them for God's glory. 

So we do not lose heart. Though our otter self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing is for an eternal weight of glory beyond all comparison, we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4: 16-18

I hope and pray Anton will understand the hard truths of God's word from a young age and I pray he will always look more at what he can do than what he can't. I pray he will know that nothing we do in this life matters if we are not doing it for the glory of God. 

This life can be so hard but God is so good and so faithful and so kind! We will praise him through the good and the bad because he is so so worthy of our praise. 

I know I just said it yesterday but I have to say it again, if you are not right with God, if you have never repented of your sins and put your full trust in Jesus Christ alone for your salvation PLEASE do so while there is still time. Please read THIS because there is nothing more important than where you will spend eternity. 

Wednesday, March 27, 2013


Have I ever said how much I dislike trying to come up with a title for my posts? Well if I haven't let me just say I do not enjoy coming up with titles for my posts. I  have decided if for some reason I don't know what to title it then I will just put the date, it's lame, I know...

I was trying to upload pictures from my camera but I couldn't get it to work so I will just post pictures I already have on my computer that I haven't posted yet. 

Yo Gabba Gabba was SO much fun. I still get all giddy every time I think about it. I am going to write a whole post about that night but for now here is my very favorite picture of Anton.

This is the look on Anton's face when the show started.
 He was so excited he was shaking and screaming, I loved watching how excited he was!

The rest of this post is going to be totally random updates. 

Anton has several wounds that are infected with pseudomonas, which is by far the hardest infection to get rid of (well for us it is). The only way we can treat it at home is by giving Anton baths in vinegar.  It is CRAZY painful (Anton is heavily medicated when we have to do vinegar baths) and I HATE doing it. We will start them tomorrow in hopes to keep him out of the hospital. If we can't get them cleared up or if he gets worse (behavior changes, he gets more tired, starts acting sick) we will have to take him to the hospital to get IV antibiotics but I am so hoping it wont come to that. 

Our nurse started March 5th and we LOVE her. The first day she got here I took her in his room and showed her how I get him out of bed and he just started talking her ear off. He really likes her and I am shocked at how well he has adjusted to her being here. He still looks to me for comfort but he lets her carry him around, feed him and change his diaper without any complaints. I didn't think I needed help at all but now that she is here I never want her to leave :) It really has been a HUGE blessing having her here. Just feeding Anton and giving him meds takes up several hours a day so to have help in those areas has been great and she does so much more than that. She is learning how to do dressing change but it will be awhile before she is really able to do it on her own. I know she will get there but it will just take time. She has already wrapped a leg though so we are getting there. 

Anton hasn't been tolerating his feed well and has been throwing up quite a bit and losing weight so we changed him over to a blenderized diet through his G-Tube and we are loving it! He eats (through his tube) 5 times a day and it takes an hour to feed him each time. Five hours a day are spent feeding him (see why I am so happy Whitney is here Monday- Friday) but it is so worth it to be able to feed him real food. Right now we are mixing formula with baby food (2 meats, 2 veggies and 2 fruits), avocado, vitamins and I can't really remember what else right now (I have a list of things to add).  We just got a vitamix blender so once I run out of baby food I will start making his baby food and blending it in the vitamix. I can't wait to be the one who makes his food! If you have to do a blenderized diet for your kiddo vitamix offers a medical discount with a doctors note we did that and saved quite a bit of money.! Oh and my vitamix is blue and I love it, ha. 

Jason and I celebrated our eighth year of marriage on March 5th and I surprised him with an overnight stay at a ranch close to our house. We had a blast!!! We sat in a paddle boat that didn't work but we didn't know until we were stuck in the middle of a pound, rode horses, shot shot guns (that was my favorite thing we did), and relaxed! It was so great being alone with my hubby for a whole 24 hours :) 

Kenya is doing great and has really taken on a love of reading. She could only read small words for about a year but she has finally figured out how to sound out most words (if they aren't huge). I was amazed at how much of her school work she was able to read today. It has been so neat getting to watch her learn as I have been homeschooling her. She is so smart and picks up on things so fast. 

Judah is... well all boy. He is the sweetest and most kindhearted kid you have ever seen one minute and then the next he is hitting you in the face because you said something he didn't like. For about 5 days in a row last week he got in trouble for hitting. He isn't just hitting while playing but he will get mad at someone then just punch them as hard as he can (he is NEVER mean to Anton though). It has made me so sad to see him act that way but I know (well at least I hope) if we are consistent in disciplining him he will stop doing it soon. 

My grandfather passed away on Monday after a short battle with liver cancer. He is the first person I have ever been around that didn't die in the hospital. He stopped eating about a week before he passed away and that was it.  We went to visit him once we found out how serious it was and he got up for a little while, went outside, talked to us and then went back to bed. Then he just fell asleep and slept for a week straight and then didn't really ever wake up again. It has been a really hard week and a half just not knowing what to expect. We would get a call that he was breathing six breaths a minute and would rush up to be with him and then an hour later he would be breathing normal. I don't really know what to say other than it has been a hard week. I am sad that he is gone, sad that I didn't spend more time with him while he was alive, sad that he never really got to know Anton (he did meet him but only once and he was already super sick), just sad. Death is never easy and the only hope in death is found through Jesus Christ. If you have never repented of your sins and put your full trust in Jesus Christ alone for your salvation please read THIS and make sure you are right with God. My Grandfather was older and knew his time was coming to an end but we don't all have that chance.

I guess that is it, super exciting things have happened in the past week and super sad ones. 

So teach us to number our days that we may get a heart of wisdom. Psalm 90:12 

Saturday, March 16, 2013

Yo Gabba Gabba was AWESOME!!!!

Hello everyone,
 We had a blast at Yo Gabba Gabba Live and I can't wait to post a ton of pictures. Kenya, Judah and Anton had a blast and danced more than I have ever seen them dance. I will post a more detailed post soon but I just wanted to share this picture with you guys for now!

I have a lot to do tonight to get ready for Anton's "Happy One Year Home Party" that we totally planned last minute but are so excited about. Can you believe Anton will be home for a year tomorrow?!?! This past year has FLOWN by.

Friday, March 15, 2013


CrAzY exciting news alert!!!!!! 

Some very special friends of Anton's worked for several weeks maybe even months to get him the hook up and we are sooooooo excited about it. 

Our whole family will be going to see Yo Gabba Gabba Live TODAY and will be attending the VIP after party with the characters!!!! The Get The Sillies Out Party will feature music, dancing and healthy snacks... EEEEEEk. How fun is that?!?!?

We are counting down the days and they kids are beyond excited!

Thank you so much to our special friends, our family is so excited and none of this would have been possible without y'all. We can't wait to post pictures for you guys!

We also want to say thank you to CID ENTERTAINMENT and Nickelodeon for providing the tickets to the show and the after party for us!

I don't think there are sufficient words to describe how excited our family is!!!