Back to Normal…Whatever that is…

1 Year 3 month 14 days

Another great week and it feels like life is getting back to "normal" (whatever that is). Saturday Jett had his very first baseball game through Chandler National Little League (who made it to the Little League World Series a few times). He was so excited and I am happy we are taking the time to do this for him. If you even knew how packed our schedule is and then adding this 2 times a week. But let me tell you, it was WELL worth it! We had to be to the field by 7:45 am. We ALL went as a family! It was GREAT! After opening day ceremonies, we had time to run home, feed Santana and then get back for Jett’s noon game. After that we went to lunch with James sister, her boyfriend Jeff, and James’ mom. From there we went to the store and then off to a birthday party. We did not get home until after 7pm. That was a long day but WELL worth it to get Santana out of the house.

I had to start with that. Other great happenings was my cousin Eric and his wife Crystal coming into town and them along with my brother and his wife Meredith, and Lorili and my Grandma, came over to eat a YUMMY home cooked meal from Grandma. Then James, Jett, and I went out with Eric and Crystal to dinner on Thursday night and had so much fun. It was good to see them! They would be a good reason to move to Colorado for. Not only that, Colorado has WAY more benefits and therapies than the state of Arizona. My friend gets I believe 3 of each therapy a week for her daughter. But, it would be a lot harder to see my family and WONDERFUL support system.

Friday night I went to dinner with a friend I grew up with on our street and 2 others from Jr. High…Go Powell Patriots! It was nice to get together and chat. I would have hung out longer but had to get home knowing the morning was going to come fast and we had a lot to load up with going to the game. Thanks Amy, Lisa, and Jennie!!!! When I came home, It was nice to see James and Santana cuddling. They don’t get to do that often enough because I am a Santana hog. I LOVE laying with him!

Oh yeah! AND…Monday we came on our 7th Anniversary! No 7 year itch for us! So far we have made it through this. We have had 7 years of marriage and almost 9 years of seeing each other. Crazy how time flies! NO ONE could be better for my husband and father of my AMAZING boys! I don’t think I could have ever found anyone to stand by my side like James has.

As far as Santana’s health, still having seizures. We can NOT get them under control. I am worn out trying to figure this one out. Yeah, the Neurologist said that the medicine I can get out of the country is the perfect one for him, but I am not sure I want to risk blindness. Well, I am SURE, I do not want that risk. So next is the diet. I am not looking forward to spending a WHOLE week in the hospital, but it is what is best for Santana.

Please pray that his seizures GO AWAY and for continued restoration of his little brain and may he continue to strive each and every day!

A GOOD Good Friday and a GREAT Easter!

A GOOD Good Friday and a GREAT Easter!
March 23, 2008 – 1 Year 3 month 7 days

While sitting at our church watching our illustrated Easter Sermon, and if you have been to Phoenix First Assembly, you will know they do not sugar coat anything and it is rather bloody..just like watching the Passion. But as I was watching them whip him and the (fake) blood all over, I could not help but to think that the people of those times were not the only ones who crucified him. Every time I doubt that Santana can get healed or be negative towards our situation, I put one of those deep, bloody gashes into his body. And then, that thought was confirmation, at the end, Pastor Tommy talked how we are the ones who crucified him this century. By denying him, by not accepting him as our savior, we are crucifying him. Just like what Mel Gibson has said in his interviews, he crucified him, not just one group, we all do. So with that said, with that thought, I am going to look at life much more different.

Today we got together with James’ family and had some fun! The hardest part? Seeing pictures taken with the cousins on the stairs as Santana laid passed out in his bed. I wish he could be up running around and doing the Easter Egg Hunt too, but in a few years!

Ok. Here is some more video since Santana keeps getting better and better at this! Scroll down to the 21st, I added some still photos.

PAUSE SONGS BELOW TO HEAR…NOT MUCH TO HEAR THOUGH.

This first video he was starting to attempt but went into a seizure…

This next video is him holding his head up. I really wish I had the one from Friday night, Jett came and gave him a raspberry or we call, Zurbert on the cheek and Santana had a surprised look and stuck his tongue out. Oh, it will happen again. For now I have God, James and my sister-in-law Janet as my witness to this awesome event!

This next video shows that he can do it in his sleep too!

Unbelievable!

Unbelievable!
March 22, 2008 – 1 Year 3 month 6 days

Well, don’t come looking here for the video. Dumb technology! It is no longer on the disk. I wiped the disk out. I am angry…but maybe that is because he is just going to keep on doing it. I will have plenty of opportunity for it! I wish you guys could see it! It was so stinkin’ amazing! I just need 24 hour video monitoring all over this house I guess. Pray that he does it again so you all can see it! Next time I am grabbing the REAL video camera and not my camera. A quick lessoned learned I guess!

A big fat HAPPY BIRTHDAY to my big brother Chad! Yeah, his shirt does say "Chad is Rad". Only he can get away with that! Hope your birthdays are better each year! We love you!

We are going to load up as a family and go grocery shopping and then tonight, we are taking them all to go for Chads bday dinner. This ought to be an interesting dinner! But we are just going to keep keeping Santana busy and stimulated! It has done him good so far!

A New Miracle!
March 21, 2008 – 1 Year 3 month 5 days

Today was the best day EVER! Santana held his head up for over 5 minutes while sitting on my lap! The longest he as done is 15 seconds…maybe less. He held it up for a few minutes and that is when I had James grab the camera and recorded this video for the last 5 minutes. Even after this, he did it again for another few minutes. I was so excited! I can’t begin to explain. This was just a wonderful week!

Wednesday I broke my new nurse in by having us leave by 6:50 am for a 7:50 appointment at the Ortho clinic at CRS. They x-rayed his spine again to see that it still has a 41 degree curve. Which is the same as it was from back in November. That is good that it has not gotten worst. I asked if they could do some kind of splint or bracing for his trunk and while they did not want to do so, I talked my way into it. I thought it would be good to have while in the stander and doing therapies. Score! They casted his trunk and we will be getting the brace in a few weeks! That afternoon, he had Occupational Therapy and he did bring his head up a few times while on all fours. We recorded one time only. But this was nothing compared to the video from tonight!

Thursday, we went back to CRS. What another GREAT day! First speech. While Santana did choose to go to sleep, he did show reaction to flavor spray! He was still asleep, but he tasted it for sure! RIght after that appointment, we went upstairs to Neurology for the best appointment EVER. We spent 1 whole hour talking to his neurologist. I really appreciate his time he spent with us..on his lunch hour. While he was the lucky one to give us the grave news 15 months ago, this was much more positive. While he did see seizures recorded, Santana decided to really show off and do 3 different types of seizures in front of him. One type was obvious from different sides of the brain each time because of the way he flung his arms. The infantile spasms are the hardest to control. He told us of a medicine available only out of the country that works wonders on these. The problem is not that they are out of the country…the problem is that they have a 30% chance of causing peripheral vision blindness. So he would just have tunnel vision. Hmmmmm….Not sure about that one yet. Access to them would be easy, James’ brother is a doctor in Mexico. For now, he put him on Topapmax. He is going to also book him to start the Ketogenics diet. This diet has to be started in the hospital for the first week. It can cause blood sugar to drop really low. It is basically the Atkins diet but with NO room for carbs…at all. If any carbs/sugar is given, it can through him into major seizures. Which is the downfall when it comes to tastes and what not for trying to get him to swallow. But…he will be off seizure meds and they only keep people on this diet for a max of 2 years and many times they see that the seizures do not come back after. So, we had a lot of ideas bouncing back and forth and he spent a lot of time explaining things to me. For example, I wanted to know why he didn’t have any seizures until 7 months after the accident. And basically in simple terms, there is reconnection happening. Something is trying to fire up in that brain. Do the docs think of it as positive as I do, no, but I will take it as SOMETHING!

So as you can see there has been a lot of info this week. Also, we are going to hire out of pocket, his therapist to come another day of the week. While expensive…but cheap compared to what else I have looked into, he is worth it!

Today, Friday, he had no appointments, oh, we also went to the dentist yesterday, but no cleaning done, we are waiting for the molars to pop through so we can do sealants. But today, he went for a walk with his other nurse (I really do have a good crew for him right now). He is lucky to get so much positive attention. This picture was taken outside with her phone. I thought that was the best picture! Oh, my phone is almost dead, I will put it up tomorrow.

If I don’t get on here the rest of the weekend, please have a WONDERFUL Easter. Remember what it is really about. Your sins are covered by the blood of Jesus who was whipped and beaten unrecognizable and rose again. Thank God for allowing this. If anyone can feel the pain we do, it is God. He gave his son. And here we have a hard time letting go and we did not have to endure the bloody battle as he did. But good came out of it, just like good will come out of what happened to Santana. I am going to go finish watching The Passion of the Christ. Praise God for the MANY MANY miracles we have seen this week!

PS. Apparently the video does not want to come off my camera. I will get it up tomorrow. I need sleep. BAD!

Busy as Usual

1 Year 3 month 1 day

Oh wow! I just realized that yesterday marks 15 months! We have come a long way, but we have an even longer journey to go!
It has been a busy couple of weeks. Jett is on his second week of spring break and without a nurse, it has been crazy. But I am standing tall and surviving. James and I actually got out by ourselves on Friday night thanks to Janet, my sister in law. It was nice and quiet. Whew. We shared some good laughs. But, we won’t go there…

Jett started baseball (coach pitch/t-ball). He loves it! It is kind of hard for James, a right hander, to teach a lefty. But he is doing GREAT at guiding him! Jett is getting better at hitting the ball too. His games start first week in April. I can’t wait! We could not do this baseball thing with Jett if it wasn’t for Janet coming to watch the babies. She ROCKS!

Last week, Santana had his Upper GI. I gotta call and get results today. To me, it looked fine, but what do I know? He had a great weekend. He is also on spring break and this week we have him busy with appointments. We have a new nurse starting on Weds. Poor thing, her first day we have to load up and get out of here by 6:50 am for an appointment at CRS in the Ortho. clinic. This is with the doctor that had his feet serial casted. We are going to check on his spine and see what needs to be done. No surgeries please.

Then Thursday, he goes to speech for probably the last time. The only reason speech is seeing him is to determine if he can have a swallow study, or not. They don’t see kids after age 3. So, because he has shown no improvements or will gag for her ( I KNOW HE DOES), she is going to stop and then try in 6 months. But as of now, she thinks it is not safe for a swallow study. It sure would be nice to have a speech therapist with his homes services to work on that…

After speech, he is going to go to his neurologist for an appointment they are squeezing him in the schedule. They will be discussing the ketogenics diet. Or, an implant…hmmmmm….NO, I don’t think they are severe enough for that! Basically, I just don’t think they are really seizures. Focal seizures, maybe. But I am not impressed that not 1 or 2 or not even 3 different medications have helped with these so called seizures. Let’s just believe for the best with that appointment!

Today is physical therapy. We always get excited for this because Greg pretty much is the best. I would love to have him here for 2 times a week. I am trying to pay him out of pocket. He is worth it! I just don’t understand why there are some kids who get P.T. 2 times a week. Santana would DEFINATELY thrive from it. I just get irritated with the system in that note. But 1 hour is better than none!!!

Tyree continues to grow and grow. It is harder now that he is starting to eat solids. At appointments, bottles are a lot easier to whip out. Now I gotta pack a lot more. But my wonderful friend Gina put me in place. She reminded me that it won’t be long and he will be eating the same foods I am eating and it will be easier again. The I would be wishing for a baby back. AND LORD KNOWS I DO NOT NEED THAT! Whew…Hope that was clear. Tyree has really DRY skin patches. We have to put hydrocortisone 2.5% on it. I feel so bad for him. But Santana had it and he outgrew it.

One thing I want to share before closing. My grandma set me a chain letter…errrrrr….but this one had some awesome quotes.

"When you are down to nothing, God is up to something."

I like that one, I know that God is up to something! We have seen proof of that because God is Good ALL THE TIME!

"Worry looks around, Sorry looks back, and FAITH looks up!" So I am looking up to the almighty God and I will wait to hear my answer clearly. Until then, I will wait patiently on the Lord.

Updates…I know…a week late.

Updates…I know…a week late.
March 8 , 2008 – 1 Year 2 month 21 days

NOOOOOOOOOOOOOOOOOOOOO!!!!!! My computer died and I had a VERY long entry on here to make up for the week I have missed. I guess there is something in that entry that wasn’t supposed to be told… Hmmm… Bummer!

First, I want to thank the few that did email to check up on us. I have been VERY ill. I had to have IV fluids on Weds. because I was dehydrated from a day of vomiting. They are running tests on me. Can you believe they asked if I was pregnant? The urgent care came back with low levels so I had to go to my primary care and they ran some more tests, including a blood pregnancy test! What is with that!? However, I have been very sick to my stomach with nausea for 12 days now. They put me on an anti acid med and anti nausea med and told me to hold off on the anti inflammatory med (for my joints). They feared there may be some upper GI bleeding due to black vomit, but I don’t think that is it. They just want to make sure there is no ulcer or tumor. But I have not had any pain.

I am dragging, but making it. I could not have done it without Lorili and my sister-in-law Janet. Thanks so much! Because of them, I stayed in bed for 3 days. I think that helped make me feel a little better, but I am still VERY nauseated. And thank you to my brother-in-law Jeff who took me to urgent care. Lord knows I could not have driven myself.

Enough about me! Santana has been doing AWESOME and got over his ear infection. But, today he woke up with a HORRIBLE cough. I hope he doesn’t get as sick as I did. Jett has been coughing too, but that is the extent of his.

Last Friday, we went to Neuro Rehab. The doctor was VERY pleased with him. Especially his feet! OH YEEEEAAAH. See, mom and dad know what they are talking about! She did NOT mention the baclofen pump! That is a good sign! She said keep doing what you are doing! So I was very pleased! That was the most positive appointment we have had from there in a long time…or EVER. Yahoo!

Last Monday, Santana started school! My saturday nurse went with him and I was VERY comfortable with that because she has gone with another patient to their school. I sent her with the camera and that is what these pictures are from! (my entry I wrote last night was long enough that ALL the pictures fit through out the paragraphs.) I went Weds. morning, not feeling well, but after sleeping all day Tuesday, I figured I would be ok. It was cute to see all the kiddos. Santana is the only one in a wheel chair and in the "worst" off condition, if I may. But it is good to expose him to kids while they are young. Then they may not make fun of kids in wheel chairs later. The bad thing about school is the exposure to all the snotty kids. Um, yeah. And toys from kid to kid. I can’t blame school this time for him getting sick because it is I who has been fighting this. As soon as I got home is when I started vomiting.
His Friday/Saturday nurse went Friday with him. She will be coming off Saturdays to go to school 2 days a week. She is great with him!

Jett really thinks it is exciting that Santana is in school. Especially since they both made Dr. Suess Cat in the Hat, hats on Monday. This gives them something in common. It is cute to see Jett come ask what Santana did in school. In fact, when Jett was getting ready to leave for school on Tuesday, Santana started crying and Jett went up to him, "It’s ok Santana! You don’t have school on Tuesdays or Thursdays. You will again tomorrow!" It was too cute!

We started Jett in Little League, Coach Pitch/t-ball. He is excited because this is something for him. I don’t know how in the world we will find time, but he deserves it 100%.

Thursday, we got a call from the neurologist and indeed the EEG showed seizures. In that case, he raised the Depekene another ML at each dose. His blood work came back that he is handling it well, but it still bugs me that this med is so bad for the liver. Especially when it hasn’t made him any better. It certainly didn’t make him worst like the Keppra and the zonogram did. So, he is going to squeeze us in on his lunch hour on the 20th to talk options such as the ketogenics diet or an implant (eh). I was not pleased about that call, but it wasn’t a surprise either, so I guess it doesn’t matter that much.

I can’t remember all that I had written before it got deleted, so I am going to close for now and get the pics on here before my computer dies again. Enjoy them.

Pray that Santana gets over this cold/flu QUICK. Pray for his brain to be restored better than it was! And then BELIEVE!