I honestly wish I had something new and amazing to report. Well, I do have new to report…but not sure if it is amazing. First, we went to church last night for our Special Needs Support group in which we are doing the Purpose Driven Life series along with the whole church in the 40 Days of Purpose. Of course it got my mind rolling. God knew before Santana was even born that he would be left alone to walk into the deep end of all our lives. He knew that and he would allow it to happen. I started to feel angry inside as we were talking about purpose. I want to know Santana’s purpose. I don’t care about my purpose. Cause right now, taking care of my kids and living for God is all that matters. But why does Santana have to suffer through this? I don’t feel like I can help anyone because he hasn’t changed in a miraculous way. But I do have experience in trying anything and everything. But I must be trying too hard.
So after our session, I went to pick up Santana and he was crying away even with teardrops pouring out. He was in pain. His teacher, whom as GREAT experience with Santana through her personal life, said he was like this most of the night and there was 2 times she almost came and got us. He was VERY uncomfortable. She remembers those days. She said comfort for him is the most important.
He went to sleep pretty fast when we got home and did meds. But then at 4 am I woke up to a horrid sound of his cry. He was wailing away. I changed his diaper, rotated him, and somehow got my body in his medical crib with him to cuddle with him. His crying and sobbing didn’t stop for an hour. I just held him and sang to him. When he did stop, he started falling asleep but then every 5-10 seconds popped his eyes open to make sure I was still there and I would say, “It’s Okay Santana, I am here for you.” every time he opened. Also, He gasped for air 2 times. Not while crying. There was no cough or a choke prior to that. It was very weird. So I know for a fact that my little man is in pain. I am not sure exactly what, and as a mother, it is scary. It is terrifying to not know how to help your child feel better. I want the best for him. I prayed God to give the best for him…even if it is taking him. Yes, I gave God permission to take him and then I demanded him if he can’t do that he needs to show he is in this. I need God to show himself. I even whispered in Santana’s ear after doing his meds that if he wants to let go, he can. I told him not to hold on for mommy. It isn’t fair for him. I am done being selfish. I can’t control his life. It is out of my control. God is the puppet master in this. I just pray that in Act III the story line changes. It is getting to be a boring play when it is the same stuff over and over again.
So with my heart poured out all over the place. I am sorry. I am sorry this is depressing and negative sounding. But I truly need to see God. I need to see something to know that God is in control of this. Because right now, I feel alone in this. And that is because I am trying to do all the foot work. I have maybe been looking for answers in the wrong places. So now I say, It’s up to you God. Nothing I do with him will make him better. I will still carry out what I have put deposits down on because I don’t want to lose that money and I know that God uses people too. But I do know that God is the true healer in this.
I may be worried about his body and all his crying. But maybe things are waking up. Maybe the things I rather have be last on the list. But maybe it is something new to celebrate. God will show. I just hope this stage goes by fast because my heart can’t take hearing him crying out in pain. And wiping his tears, it breaks my heart. You wipe tears off your childs face when they fall off a bike, not because they are in agonizing pain from their body being so twisted up. He is desperate for therapy. High levels of therapy right now.
Please continue to pray for blood flow, pray for his body to straighten out, pray for his pain to go away.
Santana failed the swallow study but God has not failed us. I believe there is purpose. So that way next time they can all be shocked. I was hoping for something. Especially since we were told he would fail and that the speech therapist doing it said she just doesn’t feel comfortable. She only tried one consistency that was in between. At first she said, wow, that is more reaction than we have had before. Then in a matter of a second they stopped because one little drizzle aspirated. I immediately deep suctioned as they did not have a respiratory therapist in there. She said I am not even gonna set up a date or recommend one because I just don’t see him doing it. NICE.
So anyway. Apparently I am a mother who is oblivious to the truth in their eyes. But I believe in something bigger than this. And one day, they will ALL fall on their faces in shock. I would put money down on that.
So now we really need to pray for the blood flow to his brain especially that left side and that the frontal lobe is restored to good and perfect health. Thanks for all the emails and comments yesterday. To be honest, I was very angry at first. Not like I didn’t expect it. But sometimes it’s like…WHERE ARE YOU GOD? I feel like I am screaming and no one hears me. Then I am reminded that it is in his time. Not mine. He is here and he has never left me and he will be faithful. I BELIEVE.
Sorry for the delay. I was getting settled back in with my family that I missed so much! This is URGENT! We need to pray for Santana’s Swallow study this morning at 9:30 am Arizona Time. This is a VERY important test ONLY because the doctor yelled at me that HE WILL FAIL. We need God’s glory to shine through because we were told it will NEVER be possible. EVER. If he just swallowed 1 consistancy I would be happy. SO PRAY PRAY PRAY!!!!
So we never did get to go to Busch Garden. But next time. We had 3 more ultrasounds before we left. The last 2 were at 8 am the morning our plane left at 11. I was nervous we were going to miss. Those were pretty cool because they did the ultrasound before giving the Nitro and then after and it did show difference in blood flow. So AFTER we focus on the swallow study, we really need to pray that he gets blood flow to the left side of his head as he has very low to none. No wonder he has made NO improvements in 2 years. How can you when your brain isn’t getting fed the blood and oxygen it needs to grow. It seems so simple to check something like this and I am mad I didn’t do it sooner. But again, I know God is in control.
Yesterday I changed my Stem cell date to March 9th. We will take all the boys as it is Jett’s spring break. They will stay with my parents in San Diego when we go into Mexico for the injections. It will be a mini Vacation. So I gotta set up hotels for that. Not to mention I have to start working on my 3 week stay in L.A. for intense therapy. I have no idea where I am staying yet. It needs to be close so I don’t have to worry about having someone with me to drive in the back with Santana. I really wish someone can come with me and have Tyree with us, but that isn’t fair to Jett as he has school until June 3rd.
I can add more pictures if I ever find my camera. I haven’t seen it since coming home. So hopefully I will find it. Although we didn’t take that many pictures. Pray today. Pray for results! Pray and BELIEVE IN NOW!
And that is NOT Beach Bummin’! The plan we made today was to go to his appointment that was at 9:30am this morning and go have some fun at Busch Garden Theme park. The problem? We didn’t leave until 1 and that was only to go to lunch and had to go back. and then didn’t leave until 3:30ish. Basically we went. We gave half a dose of his new med to see how he did then Later… seems like way later, we gave the next dose and had to wait again. I was going crazy that I was even doing the dances to the Little Einstein to entertain my mom…or myself. And I belted out the CHOO CHOO SOUL songs too. Santana misses that DVD! So anyway. We only sat around today.
So we didn’t have enough time to go to Busch Garden so we decided to go find some Super Bowl stuff by the stadium. HA! Who am I kidding. I guess being on the EAST coast, we are in Steeler land. They had like 10 styles of their shirts and 3 of the Cards. What is up with that!? On Sunday, everyone was laying out, in the pool, or on the deck at Sloppy Joe’s eating so we took Santana’s Cardinals blanket and hung it over our balcony with my bobby pins. Yeah, no one said anything. Not even a WOOT WOOT! BOOOOOOO! So anyway, that was that. But I did have to get a Super bowl shirt since the theme was BELIEVE in NOW. I saw that on a pepsi bottle about a month ago and took a picture with my phone because it was one of those whispers from God moments. This is the year. It is already a good year. We made it to Florida. Got a nice upgrade to first class, (Thanks Chantel!) Got some scans that I have been wanting for a year. Heard some POSITIVE from a doctor. Put a deposit down for our Intensive Physical Therapy (we are going to need this after slacking this week). We are headed for Stem Cells in a month. MAN O MAN is God so good to be able to allow us to have the means to do this. Not to mention we have the final plans to our house and like 10 or 15K away from the down payment. Things in life are moving right along. So this tells me that it is a good year. Not only is it a Believe in NOW year. It is a Believe in Miracles NOW kind of year.
One thing we can start with is his eyes. He is looking around a lot. Praise God. His vision is SLOWLY getting restored! He has been crying a lot too which means that nerve endings are coming back too. I hope that is the only reason why. God is faithful!
So, since it will be warmer with sunshine, we were going to go to Busch Garden. BUT THEN! URG! I get a phone call from the radiology place saying they are going to do an ultrasound at 3:00. BOOOOO! Now we really can’t go far because we have our appointment at 9:30am then at 3:00. I know THIS is what we came for, but we were told to go into the office on Saturday early before flying out to get a last ultrasound. So I just get frustrated by the daily changes. I am not at all an organized person, but it would be NICE to know AHEAD of time what will be going on what days we will be having tests, etc. My biggest thing is that I PRAY and do I pray that his tests will be covered under insurance. Oh…that makes me nervous. There was just a TON of extra expenses that we were NOT informed about prior to coming. If I knew this thing would be like an extra thousand a month as an average, I am not sure I would have committed to this. I love how we were told that #1 important thing to get Santana well is to have a happy home and not be stressed out about money! HA. I am not sure how that is possible now.
I am super tired to where my eyes are going crossed. If this does not make sense, I am sorry. I will look over and fix anything tomorrow. I need some sleepy time before I say something I shouldn’t.
Thanks for the support. I love you guys!
And it doesn’t seem like we got to where we need to be. Although I have learned a TON about Santana’s injury. Only a few days away until we come home. I am ready for it. Not much today. Santana was NOT feeling good so the doctor pulled him off the Nitro till we figured out what was going on. We went to a local pediatrician. She was wonderful to take us in knowing we were from out of state, she could have told us we need to go to urgent care. So we went here because he has been crying after every cry. It is like he is saying OWE after his cough. We can swear it. But however, you can tell it is painful. Plus he has had more secretions then he has had FOREVER. So, as you may remember, we were on the Zpack and Rocefin shot then right before coming, omnicef and now another round of omnicef. If it is sinus, it needs to be more than 10 days I guess. So she HIGHLY suggests that we get an x-ray or something like that of his sinuses if we are dealing with this much junk. So Yay…more junk. She also wants us to do his albuterol every 6 hours. Usually it is AS needed. Santana’s ear continues to run. Pray he gets to feeling better.
Tomorrow we will be trying a new med. to go along with the supplements and Nitro. Hopefully. As long as the fever stays away! After our appointment…since they are EXTREMELY short, we may go to Busch Gardens or Gatorland. We are running out of things to do. Pray it warms up a bit. Yesterday it was SO windy and chilly. Today it barely hit 50 degrees for a little bit. Mostly I saw 46 through out the day. BURRRRRR…. Remember now…I am from the desert.
I think our biggest concern today was when we were told we need to come back in 3 months. 3 months!? I asked him if he knew what the travel expenses were and finding someone to watch the kids. CRAZY! So he thought a year can be doable. I can’t afford flying across country all the time. I don’t think people really grasp the idea of how much having a special needs child is. But it will get worked out. If God is TRULY in this, it will work out.
I am sleepy and by the way Santana sounds, I have a long night ahead of me. Pray for continued safety please! We miss everyone!
Not much going on. The last 2 days we pretty much were in and out. Oh…although, Monday we looked at the Spect Scan. He expected it to be REALLY messy. Basically it is like a bagel slice. The inside is supposed to be hollow. Then a thin of yellow and a thick red and a thin yellow again on the outside. His issue is the red has a lot of yellow running together. I may have the red and yellow colors mixed up as far as the fatter part being red… But however. It looks pretty good except the whole frontal lobe. The red does not circle around up there. There is some spotting in the back that the yellow leaks in. But there is NO blood flow in the frontal lobe. That is where there is no function. So these vaso dilators can help with this!
So after we found out the good news, we decided to enjoy the sunny day and lay out by the pool with Santana under an umbrella. So I text my step pops a picture of my mom laying out. We text back a few times about weather and what not and he texts, how about we go to lunch. I look at my mom and say, that is a dumb thing to say, I don’t get it. Then I hear behind me, “Well, how about lunch?” I turn around dumb founded and it was Craig! He flew down to surprise Santana and I. My mom knew about it for like 3 weeks. He got on the same flight back with us so he can help us get through the airport.
Tomorrow the appointment will be about an hour or so. He wants to do the ultrasound first then do the cream then do another ultrasound to see what the difference is. Last time we did this, there was indeed a difference. We also were prescribed a different thing that is like Nitroglycerin but it is a different name. I can’t remember at this point. We had to order it and will pick it up tomorrow.
Pray for Santana. He is still having seizures. He got really stiff today as we were loading him up. I have not seen him have tone like this in over a year. Not sure what was going on there. Also, there is lots of new cries. Not sure if this is good or bad. He is acting like his throat hurts too. He has been running a fever. Pray for a healthy boy so we can get home! I really want to go home. It is time.
Today we had the day off but kept ourselves busy. We started off sleeping in. AMEN! Well…I still had about 4 suction episodes to deal with and 2 seizures so it wasn’t a deep sleep in. We then went to the pier to see the aquarium with our friends that came down to see us. The best part of that was they let Santana touch about 6 sea urchins. I only got 3 on tape because I messed up and pushed the button and handed it to my mom and told her to push the button…so it was off. The live spider looking starfish was really cool. Santana didn’t react as I hoped. We went down and had lunch then went outside to see a pirate ship and then my favorite kind of horse that I would LOVE to have, a clydesdale! He was so so cute! We wanted to take a tour on these cute little trollys, well actually, it is like a city bus that they made shaped like a trolly. There was a GIANT blue wheelchair accessible sign on the outside. When we asked he said, “Well, can’t you pick it up and bring it up, it takes like 5 minutes to get the ramp down.” Can you believe that?! We wouldn’t fit trying to carry him up! It was rude and it really upset me! But that is not going to still my thunder!
This afternoon, we drug Santana out to the beach and watch the sunset. It was really pretty. But VERY chilly! We are exhausted. I have been in my P.J.’s since 7:30. It is 8:20 here now (the time stamp below is Arizona time). After this, I am done. And to think it is only 6:20 at home. I will be hittin the pillow early when I go back home with the time change.
Tomorrow we are going to our friends church and then to lunch with them. I am excited to go and get refreshed.
I miss my boys back home so much. ALL 3 of them! I love you James, Jett, and Tyree. Santana and I miss you to pieces! CRAIG…Mom misses you too!
Prayer requests: Pray that Santana’s runny ear clears up. Pray his junky junk clears up. Pray that we get an MRI. Pray for something AMAZING this week!
So today, we went to our appointment with our CT scans. I dreaded to hear what he had to say… not that I didn’t already know!!! So we started with an Ultrasound in his head and the back of the neck. They were all low except the back had too much flow. So Dr. Hammesfahr had us apply the cream and then do another ultrasound. It did make a bit of a difference for the better. He looked at the CT scans and and came back in and told me he was really impressed and thought they were better than what he expected. Basically it is diffused throughout. He expected big gaps or holes and 50 to 60% or more dead or damaged. Well, by looking at it, it seems to be 15 to 17% roughly. He said since it is spread throughout evenly he is a good candidate for this therapy and STEM CELLS!!!! Woo hoo! We made a good choice there! It was so good to hear something POSITIVE! But one thing he did say is that he believes he sees some water in the brain. I told Santana’s neurologist that he should have another MRI! So Dr. H. suggests that he may need a shunt to drain that out. Woah. That is big. I don’t know anything about Shunt’s but it sounds scary. It makes me nervous. But he said he could show more improvements if we get that out. We backed down a bit on the dose because he wants to take him slow since he thinks he will be successful for this therapy…. It’s not a sprint, it is a marathon.
We went to pick up the Spect scan today from the radiologist so we will be going over that on Monday. This shows the blood flow through out the brain. It was done by shooting nuclear dye through an IV. So, if we were to fly out this weekend, he could set off the alarms at security! He is the true meaning of THE BOMB!
Tonight, we went to dinner from some friends (my mom did daycare for the boys). Brenda is the one who makes the BEAUTIFUL quilts! They drove down from Jacksonville to see us. Tomorrow we are going to go to the aquarium for something to do. We really just want to see an alligator at one of these swampy parks!
Sunday, we are going to our other friend’s church. We are really excited about that! They saved our behinds by living here! We shipped Santana’s food here to them since it is so heavy to take on the plane. Not to mention, James had to 24 hour our Handicap parking sticker, my insurance card, and Santana’s suction nose piece. It was nice to have a place to send it somewhere we knew it would get to safe.
Santana is sleeping SO quietly. You can’t hear ANY junky breathing! He is doing GREAT! I haven’t seen him have as many seizures as we first did. The seizures were really big! That may have been stress. BUT…it could have been his ear too. It has been draining really bad the last few days! Dr. Sudha called in some ear drops for him. Hopefully he gets to feeling better with that. He cried a LONG boo hoo cry yesterday, a very new one, I wonder if he is just sick of going all over or if his ear was hurting. It was good to hear some new noises.
Thanks for all your prayers!!! We love you all! God is in control. I have been praying about this and I can feel he is in this. Especially when Dr. H told us today that there is NO therapy that will make him better as much as James and I staying together and being happy and doing family thing is what is going to make him better more than any therapy you can pay for. That was pretty awesome and so true. So this is just being guided by God, I just know it. I can feel the Holy Spirit in this.
I am sleepy and trying to get used to the time. I need to go while Santana is sleeping so well. I am so tired! God bless and Keep on praying! I have NOT taken ANY still pictures! I am so sorry. I will start tomorrow!
Today was a MUCH better day. The rain is gone and we were explained about the therapy more. An ultrasound was done in the office today on the arteries in the brain and neck. That was quite interesting. I learned more about his injury I don’t think I would have ever known without this therapy. In his neck the flow was ok. On the right side, it was somewhat normal with slight constriction. The left side, not so good. There is pretty much no blood flow to the brain. So, with this therapy, we should get his veins open a more to get more blood flow to the brain. With that, it can help wake up the nerves and parts of the brain that control the muscles. Dr. Hammesfahr said that we should see better breathing patterns to tracking first. Then other things will come. This may show up in the next 2 weeks to another 6 months to a few years. It is a therapy you can’t quit too soon on. With time, it is thought that the longer those veins are open, his own cells will be able to regenerate. I thought this was really cool, yet very scary that he has had no blood flow…well, enough to stay alive…to the brain.
One thing we did see today. Well, first of all, He has been dropping his jaw way far down for a while, his mouth is wide open usually. But today when we left it was closed in the car and breathing out his nose. I thought that was cool. He looked so handsome…Now he just needs to curve those lips up and give me a smile!!!!!!! Right now, His mouth is wide open but he is falling asleep.
So tomorrow, we go to the office at 9:30 am. Up to Palm Harbor at 1ish and then to Clearwater at 5:30. Wherever those are…not sure yet. It should be fun… So we are getting 2 more ultrasounds and a Spect scan. I can’t wait to see that!!!!
I am really tired and have to go get our stuff ready for tomorrow as it will be a long day out and about with all these appointments. Please keep praying. We can feel them as things are MUCH better today…and the fire alarm didn’t go off…WOO HOO! Pray & Believe!
Oh…I got the response from the message boards…I will email and give you guys call soon…I promise…
I haven’t in a while…but I need to cry. I really do! I don’t think I should have done this. It is VERY unorganized. THANK God my mom got us a GPS for Christmas. We would be lost! They just give us crossroads like we are supposed to know where we are going. So we were told it is about a half hour to where we need to go for his ultrasound. So we are loading up and since the address is not found on GPS I decided to check out Google maps. Yeah…it still could not find it. It said and HOUR and a HALF! I called the place and then realized they mapped it wrong on Google too. So instead it is only an hour. But not enough time for today. I am so frustrated. Is an hour to the nearest imaging place really the closest! AAAAAAAHHHHHHH!
I think they should hire me as their office manager. They should have google maps or something accurate anyway, of how to get to the 2 different radiology appointments. They need to give handouts on how to apply the cream and measurements and not expect some one to rememeber…my mom asked if we could record it cause it is about complicated, he said no. Interesting (?) So they need to have handouts of this stuff. I am so frustrated. I want to cry.I have regret starting up.
OK GOD!!!!! I now know that this is you and NOT any therapy. I will back off after I finish with the other 2 I already have deposits in. I feel I am getting the run around. Well…feel….I am.
So, now that I missed that appointment, we are just going to chill out…again. Luckily there is a yummy place to eat right below us. It is pouring down rain. I will get a video of our lovely day out here.
Seriously. As an ex-film student. I regret bringing a camera man around. It has been one thing after another. Our Crazy favor went away after stepping off the plane. We would make a very humorous documentary. Fire alarms, poop, rain, GPS sending me around the same block over and over again…me dumb enough to follow. I just pray that it is like a Hollywood movie with a positive ending and the main character comes out GREAT in the end. PRAY PRAY PRAY!
Don’t forget to check back here and there on the right bar now there are twitter updates. I do those frequent through the day. I am trying to build a 3 column site but having issues. I am not focused. But it is good to have change.
Uncategorized | Santana's Mommy | 
January 30, 2009 8:36 am | 
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