Hello all, Hope you are all doing good . We are doing good , we have been busy the last couple of months we moved back to Sebring and Ari has had a couple of appointments. 

First off Ari had her appointment with spinal surgeon a few weeks ago and unfortunately her spine is at 58% curvature  but she is to young to have the corrective surgery he said she needs to go thru puberty before  putting the rods in so they made her a new back brace with the hopes that will keep her spine from getting to much worse, but  she doesn't tolerate more than 2 hours and He wants her on a muscle relaxer again she was previously on baclofen which did lesson her curve but it caused her to drool so much that she was choking on it and we stopped giving it to her after and it physically didn't look like it was helping anything..So we have opted to try a more natural approach and started her on CBD oil its called Haleigh's Hope or HH for short. It has been 2 weeks this past Saturday that she has been on it and I have noticed small changes on her muscle tone so I am praying that this will be our answer for her. The suggestions is to start small dose for 3 weeks and then increase the dose every 3 weeks until we get her seizure free or whatever the results you are needing are . There are many parents who have successfully gotten results with seizures using HH but we are hoping for muscle spacitity relief .

the picture on left is current and the one on right was around 6-8 months ago

We also went to the neurologist this week . He gave us a prescription for Zanaflex for her muscle (I haven't filled it quite yet I wanna give HH a few more weeks) and suggested we look at  placing a VNS (vagus nerve stimulation) to try and control her seizures it is a small generator about the size of a watch and its placed under the skin in the left chest ares and it has a thin wire that connects to the left vagus nerve under the skin in the neck  that sends pules to the nerve to stop seizures.I don't think we will be going that route unless her seizures get worse.  Her Dr gave me a name of another pediatric Neurologist that is certified to prescribe CBD which is now FINALLY available her in Fl. They have just opened one dispensing clinic in the state but i'm sure the list is long for getting it but if Ari needs more THC in her CBD oil we finally hopefully  have that option .

On August 19th we go back to Shriner's to see a Dr for her hip and discuss treatment. Her right hip is out and causes her pain. She keeps her leg bent all day and night and she has kept it this way so long i'm not sure she can even straighten it if she wanted to. I was hoping that her tone would change (like it always has) and her hip would go back once the tone was moved like it did with the left hip but that hasen't happened and now she is in pain I know we need to go ahead with the surgery.

This is how she keeps her leg all the time

Arianna also had a birthday on June 25th she turned 11 I can't believe she is that old already the time is just flying by so fast . We just had cake and a few presents with us nothing big. I think I have covered everything I will update again after our appointment with the Dr for her hip. Thank you all for continuing to check in on our princess. 

9 years!!!

     Wow it has been 9 years ago today our lives changed forever...All the dreams we had for her like starting school, going to her first dance and senior prom and having a normal fulfilled life were replaced with doctors , specialists, and therapies.. We are so grateful for everyday that we have with her.We have learned so much over the years and still have much to learn.

Couple days after accident

Christmas 2015

     The years of immobility has taken a toll on her body .. she has developed scoliosis which causes her a lot of pain and has gotten much worse over the last year. We have an appointment in May with the spinal surgeon to see if it is time for the surgery which is a scary to just think about we have had to reschedule the last 2 appointments due to her being sick please pray that she stays healthy so she doesn't have to miss it again. Her right hip is also out of place which causes her to keep her leg bent. The Dr wants to do surgeries which includes hamstring lengthening we have decided to hold off on it for now .

Ari in rehab hospital after accident

     Arianna has grown so much she is almost as tall as I am now. She is so alert these days, she just listens and watches everything going on around her. She is going to school 2 times a week for her therapies and we now have a therapist that comes to the house once a week to work with her. She has not had much experience working with kids like Ari but she is trying and is reaching out to others for ideas and input as to what will help Ari.

          I will post an update after her appointment in May . Thank you for continuing to pray for our princess..
     

  Wow I can not believe its been so long since i did an update. I am sorry,  for a while it was so hard to sit here and try to think of something new to say about Arianna's progress and before I knew it it is 2015 time really does fly by so fast.

  Arianna is doing good, she has gotten so big she is also a big sister and also an Aunt now our oldest had a baby girl the end of March this year. Not to much has changed since the last update. She still has seizures daily but she is very alert she is on Lamictal for them it has decreased how many she has but she still has more than a dozen a day . She now has a back brace  (which she does not tolerate for very long) because her spine is curved  and scoliosis is starting the spinal Dr requested her to be on baclofen for her muscle tone hoping that it will help , her right hip is out of socket due to her muscle tone pulling it out so now the doctors want to do surgeries but we have opted not to at this point I think the baclofen is helping a little some.  She goes to school for therapy 2 times a week for an hour and she gets PT, OT, and vision therapy there, she has started music therapy which she seems to really like. The therapist has these plastic tubes that are different colors and sizes that are put together to make a xylophone that is her favorite to play. She cant hit them by her self but she lets me move her arm to hit them. All her therapists are working on getting her to make choice by looking at something and blinking her eyes 2 times for the one she wants which she does most of the time.

 Over all she is doing great no major health issues, nothing more than the occasional cold. We have been very blessed with her health and her not having to be hospitalized for anything. Well I think that just about catches you up on how she has been. I will try and do post every few months if nothing else with pictures.
 

                                                      Arianna with baby sister Makayla

                                                     
                                                   
                                                    Arianna meeting baby sister Makayla

                                               
                                                           Arianna and Makayla

                                                           
                                                       Halloween  Princess

                                                 
                                                         Ari at therapy in 2013

                                                       Another one at therapy

Ari meeting her niece Kailani

Arianna in her back brace at school this year

We took Arianna back to her neurologist last week and they have taken her completely off the Keppra and she is completely back to her self. She didn’t cry at all at therapy and she put an effort in . She is now taking Lamictal for her seizures she has been on it for a little over a week  now and has had no signs of any side effects. It will take us about 2 months to get her up to the dosage that she needs so I am not expecting to see any improvements until then. We go back to the neurologist on August 18 and they hoping to be able to  start weaning her off of the tripletal then.

The video is Ari eating her birthday cake.

Arianna had a birthday on june 25th she turned 5 years old. We went out for dinner for her birthday and she did really good with all the noises she even ate her cake really good she was even chewing some of it. I can't beleive that she is 5 already she has gotton so tall.


We went to Shriners to have her hips x-rayed again, everthing was pretty much the same as the last x-ray, her right hip is not dislocated and they couldn't see any thing with it that would be bothering her. The soccet is shallow from her not walking and using her legs. Her spine hasn't curved any either which is really good. they adjusted her AFO's while we were there so now she will tolerate them alot longer than she has been.

She also had her appiontment with Dr.Kornberg . That was a waste of time, we had to wait 2 hours for him to tell us that his therapists weren't equipped to work with Ari. Which is scarry because him and his therapist were who we were suppose to take her to for all her therapies when she was released for Brookes. He said he could cast her feet if we wanted to put her through it, but didn't really seem like he wanted to do anything. He referred us to a Dr in miami and said that her therapist would probably be able to work with Ari and maybe get her back into an inpatient rehab there.

Arianna also had er 48 hour EEG which only ended up being 24 hours. Her doctor got the information that he needed in 24 hours so let us go home. She is still having quite a lot of seizures and they are all brought on by her getting startled. He put her on Keppra and wants to take her off of the trileptol. He said that trileptol is not for the kind of seizures she is having and in some cases can make the kind she has worse. After being on keppra for a couple weeks she did nothing but cry through her therapies and anytime she was forced to work. She had a seizure that was about 1 minute long which she has never had (her seizures only last 7-8 seconds) and also has had a couple of ones where she just stares which she has also never done so we started to wean her from keppra . She is still very fussy and is not really trying at anything it has just changed her completely. We go back to the Dr this week I am hoping they will tell us we can just stop giving it to her now. He also said that she couldn't go to school and will have to be on the homebound program for now we weren't really sure we wanted her in school just yet. While we were in the Hospital for the EEG she got to play dress up and have her picture taken with Cinderella. I uploaded these already.

She has been doing really good in her VT sessions. She really likes the program that Mrs. Lois has on the computer. We have a joystick switch that she hooks to the computer and Arianna has to push it for the picture to come on. When she gets it to start she stops and watches it she has gotten so consistant with this. We have gotten this on video and will be posting it in the next couple of days.

Arianna is doing good.We had an appointment with her neuro last month and got great news. Last year’s eeg showed that she was having constant seizures in every part of her brain, and she is now only having seizures on her left and right lobes. They also want to do a 48 hour video eeg so that they know what her body is doing during a seizures and how often in she has them in that time frame. They are hoping to be able to see if the meds she is on are working or if they need to convince us to change her meds. They are not sure they want her to start school next school year because her seizures are brought on by noise that startles her they are leaning towards having her put on the homebound program so that the school will have to come to our house to do her schooling. Which is what we are wanting to do anyway. They also ordered complete blood work which all came back normal.

Arianna also had an appointment with her GI doctor last month just for a routine check up, she has gained 4 lbs since we were last there 7 months ago. She now weighs a whole 38 lbs. I have taken her off the formula that I made and stared blending real food up to put in her g-tube (at IMT‘s suggestion). Which is why all the weight gain for our princess I need to figure out how many calories are in everything I am giving her better before I cant pick her up anymore. She really needed to gain weight she had weighed 34 lbs for over a year , she was growing tall just not putting weight on.

We are taking Ari to see Dr Kornberg who is a pediatrics and physical medicine & rehabilitation doctor. We are hoping he will help us get Ari the much needed therapy that she needs. He is the Doctor who over saw the therapy that she got while still in Tampa General. We are hoping that she is at the point to be able to go into an inpatient rehab program. He told us when we were in Tampa general 3 years ago that once she got to a certain point in her recovery he would admit her into his inpatient rehab program at the hospital. And if she isn’t there quit yet then hopefully he will have some suggestions on how to get her to that point.

We also have an appointment with Shriners Hospital the first week of June. Her PT feels like her right hip is bothering her and wants us to get it checked out. She is afraid that her right hip might be starting to dislocate like her left hip. She doesn’t think that it is yet so hopefully they will have non surgical ideas on how to stop it if that is the problem. At our last visit they gave us a abductor wedge to put on her but it was to big so they had to cut off part of it and we only have one strap to hold it in place, which does not work well and she tends to just crush it with her legs so she doesn’t get much stretch anyway.

Thank you all for continuing to check up and pray for our little princess.

Here is some videos of Arianna from therapy, some of them are really old and she doesn't see two of the therapist anymore, I was looking through our videos and realized they never got posted so i figured I would do it now. Ari has been fighting a nasty virus for the past few weeks, I think she is finally at the end of it. The Dr's have ran test and can't find any infections so we just have to wait for it to run it's course. Her Dr admitted her into All Children's Hospital a week ago because she had immature blood cells in her blood, but when All Children's redid the test they didn't find anything so we got to come home. That was the first time we had been in a children's hospital and i was very impressed with the extent they go to make sure the kid's staying there are comfortable. Definitely was not the experience we had last time she was in hospital a few months ago. She also had a appointment with her Neuro Dr since my last update, they ordered a EEG to check on the seizures. We go for that on Monday and then will get the results next month. I really wish we had some specialists in our area for children I hate having to drive 2 hours to basically get a script filled. Thank you for checking in on our princess and for your continued prayers.

It is hard to believe that another year has passed by so quickly . Over the past year Ari ‘s alertness has becomes more constant. She also seems to be more cooperative as far as therapy goes. She is working really hard when we can get there. Her eyesight has improved greatly and she is also babbling a lot more. We swear she has even let a few words slip out every once in a while. On Christmas morning she was sitting in her wagon her daddy made for her and we asked her if she liked it and almost clear as day she said I do .She is paying attention to everything that goes on. She hasn’t come as far as we were hoping she would have but we are thrilled and grateful for the progress that she has made.

Ari hasn’t had much therapy since my last update between her or saydi getting sick and then Christmas vacation. Hopefully we will be able to get back on track with therapy this week when the kids go back to school. We are back to not having any OT therapist in our area so Ari will have Physical, speech, vision therapy and she will continue to go for her KI method treatments.

I posted some pictures from Christmas and a couple from her PT session . I haven’t forgot about the video I promised a few updates ago, I still haven’t found the cord for our video camera so I am going to have to order a new one. When I get it I will post that . We wish the best for everyone this new year.

Hope everyone is doing well, We had the H1N1 flu go around our house a couple of weeks ago and Ari’s Dr. put her in the hospital for 2 days just to keep a close eye on her and give her an IV so she didn’t get dehydrated (which was a nightmare in itself, will definitely be going out of town if she ever has to go into the hospital again.) and then got an ear infection right after. But she is doing great now. She has been really working hard at her therapy sessions. Her OT has been putting her on her hands and knees and she is crawling across the matt with him helping balance and supports her. She doesn’t move her hands (YET) so he has to move them for her but she moves her legs. I have a video of her I am going to try and get posted on here. She also took 6 steps her grandma took her that day so we don’t have it on video.

In her vision therapy she is tracking things consistently now and she has been looking at the pictures on the computer. Her VT gave me an awesome website to go to http://www.northerngrid.org/ . It has shapes that go across the screen and you can pick different color combos and have the option to have noise when it goes across the screen. You can also set it to where the child has to click a button in order for the shape to go across the screen.

We finally got Ari’s stander they delivered it while she was in the hospital and they came back last Friday to adjust it to fit her. She is only able to tolerate standing in it for about 25- 30 minutes right now but that’s longer than I thought she would. She is also still getting speech therapy once a week and to get the KI Method and PT when we are able to. We haven’t been able to get to Jacksonville for IMT in a while but we are doing IMT and KI method on her at home also.

I posted some new pictures of the kids and as soon as I find the cord for the video camera I will post that as well. Hope you all have a good Thanksgiving .

We have had a busy couple of months, with getting the kids ready to go back to school and all of Ari's appointments. Ari had an appointment at Shriners and had her hips and spine x-rayed all looked good, her hip is still out but hasn't change from the last xray about a year ago and her spine looks good. She also go new AFO's and they gave her a new pair of shoes with them. Now she can start using the walker we bought her.

We also took her to Sarasota Retina Institute for a neuro-ophthalmologic evaluation, she is still cortical blind but he feels that sometimes she is able to see just not all the time. We were hoping to learn of something that would be able to help her see but he said the only thing we could do is lots of stimulation and time. It wasn't what we wanted to hear of course but at least he didn't say she would never see again. He said it was a good sign that she is now able to see sometimes compare to 1 1/2 years ago when she couldn't see at all. Ari also had a GI appointment and everything went well, she hasn't gained any weight since her last visit but they aren't concerned because she is growing and is very healthy looking.

Ari hasn't had much PT or VT the last few months but has been going to OT 3X's a week and she has also been getting ST once a week. In OT Mr. Paul is really working her. He has been putting her on her hands and knees, she knows what to do with her legs she just can't get her arms working just yet but that will come I am sure. He wants to get her to where she can assist us in moving her which will be a big help cause she is getting big. Hopefully we will be getting back to PT this week, hasn't been able to go much between our schedule and her therapist has been having some health problems.
Thank you all for your continued prayers.

Bracelets for sell

We are selling some bracelets to try and raise some extra money to help pay for some of the alternative therapies Ari is doing that insurance doesn't pay for. To buy one please click on the picture in the side bar . We have also put Arianna's MRI reports and the recipe for her formula on there to view those just click the picture of the bracelets or there is a link to the website under the links section in the side bar. Thank you all for your continues support and prayers.

Hello all, sorry it’s so long in-between updates Arianna hasn’t had much therapy since the last update.
She has started speech therapy a couple of weeks ago. We are really excited about her ST she comes to the house once a week and she is awesome. We were trying to figure out how we could get Ari to Orlando every week to see Debra Beckman and Ari’s new ST Mrs. Dee has been trained in the Beckman oral motor technique . Mrs. Dee is wonderful with Ari and has already taught me some new things to do with her to help get her eating more and to try and get Ari to talk.
We went to Shriners a few weeks ago to fit Ari for another stander, we did this last year and Medicaid didn’t want to pay for it because Ari needs a special head rest to help hold her head up (she tends to let her head fall off to the left side) and after a year and a half of trying to get them to understand why she needed the headrest they said that it had been to long and we needed to retry her in more standers again and take new measurements, so please pray that they will approve this new stander quickly. Ari really needs this to help get her weight barring on her legs. We are suppose to go back to Shriners tomorrow to get her hip and spine x-rayed and check her feet splints and get any changes to her wheelchair but Ari has a cold right now so we are probably going to have to reschedule it.
Ari has also started OT last week. And will be seeing him three times a week. He just moved to town a little while ago and he has a lot of anoxic brain injury experience and has worked with a lot of near drowning kiddos. He has developed his own technique he calls the mason jar technique , I am not sure what it is other than he is stretching her whole body a lot different than I have ever been taught and putting pressure on certain muscles at the same time. Ari seems to really like him and is responding well to whatever it is that he is doing. She seems to be holding her head up more and for longer periods at a time already. We are really excited about having someone with so much experience in her type of brain injury move to our little town and can’t wait to see what kind of result he gets with her.
She has continued her PT with Ms. Lana in Lake Placid and also been going to her KI method treatments every week. We are going to start trying to do more KI method Treatments everyday with us doing them everyday so that we will see more results quicker. She is also still on the brain protocol we got from Center IMT and is doing well with that. And we are going to Jacksonville once a month to check the protocol and get her IMT treatments as well as me doing them at home.
We had a birthday party for Ari her birthday was June 25th, This year she was able to eat some of her cake and not just the frosting YEAH ARI! I am posting some pics from her party and the others I promised in the last updates. Bernie was able to get the pictures off the camera ,I think I will leave that part up to him for now on.

Easter Eggs

Happy Resurrection Day!!

Happy Resurrection Day Jesus!! and Happy Resurrection Birthday Arianna!!
Hi guys. I know we've neglected the pages for quite some time, and we ask your forgiveness as you deserve to know how we and the princess are doing. Arianna is doing wonderful, as always, and is currently whooping the butt on a cold. She's a tough little girl.
Today is difficult, but after two years it is hard to understand the difficult part. It's an emotion that all of a sudden just hits you, to remind you of the depression you came through and the road you've been down, then it's gone as quick as it comes. We've neglected to share a lot of what we are going through as it seems so petty compared to what others are going through, and yet so personaly painful it's hard to share. But God is good and has placed us in the places he needs us to be.
We are possibly losing the house. We fell behind when my painting business collapsed last fall, and have been struggling since. But although they have already filed the papers, we are fighting and hoping for a good outcome. And you know, moving or not, the house is not the home, it's the family that makes the home.
My brother n law has a roofing and construction company, and he is fighting to stay alive too. I am working with him now, helping on the construction side, as much as I know to do. So we are maintaining. We are not overly concerned with where we will be, as long as we are there as a family. Sounds strange now a days to hear that, let alone type it, but that is us. Family is first.
I have purposefully avoided adding to the page because I sound so gloomy sometimes, but I only mean to be honest. I have a wonderful wife, the best possible blessing I could ever have, especially put there under God's plan, and four wonderful, beautiful children of God. Today is Arianna's second resurrection birthday. She is here with us still, and doing absolutely wonderful. God is Great!!! WE LOVE YOU ALL!! We wish you the best Easter. Enjoy the messy eggs with your family, the lovely weather, and be glad that you can still wake up Easter morning to remember our Lord Jesus Christ, on his resurrection day.

We love you all, and may you be blessed abundantly as we continue to be.

Well we met with Ari’s neurologist a couple of weeks ago to get the results of her MRI she had in November. It was worse than we were expecting it to be, she lost a lot of her white matter and a little of her gray matter. The white matter is the part of the brain that tells the gray matter what to do and then the gray matter sends the message to the part of the body that needs to actually do the job. While it was worse than we were hoping, it just confirms what our God is doing in her, because according to what the MRI shows she shouldn’t be able to do the things she is doing. We have also cut out a dose of her diazepam (used for her muscle tone) and her trileptol (for her seizures) she is now only getting them twice a day. So far we haven’t seen any bad side effects from losing those doses. She is more aware in the evenings now and we might be able to get rid of the diazepam completely when we go back in 6 months for her next appointment.

We also went to Georgia to Center IMT. They checked all the ingredients in her formula to make sure they were still working for her and also had me add a few other things to help get her gut healthy so she can gain some weight. She has been stuck at 31 lbs for a long time now. We also started her on what they call the brain protocol. It is 6 different homeopath medicines that I give her once a day by mouth. It is to rebalance and harmonize her body and promote her body to regenerate the brain. We are very excited about this and can’t wait to start seeing results. It is a challenge to get her to not spit it out she is so stubborn, but so am I. She only gets 3 drops of 5 of them and then one is a pill that I crush and put in the side of her mouth so it can dissolve.

Ari hasn’t had much therapy lately between our schedule and her therapist but she seems to be more relaxed without the everyday rush to OT, PT, and ST. We haven’t been able to go to ST and OT because of insurance issues. We have got that straightened out now but I think I am going to wait a month or two before I restart those. We are still seeing Lana for PT twice a week and I am going to keep doing that we are also still going to TKM(the ki method) once a week. I am going to put my focus on more of TKM (the ki method) and IMT. And just do my own OT and ST with her for now, I just need a break from driving all over the state for her to get therapy that at this stage in her recovery I can do myself at home. We might have a ST that will come to the house to do therapy she just moved to town and is starting her own office so if that goes thru then I will do that and just wait on OT.

I will try to get some new pictures I have been having trouble getting the pictures off of my camera.

Sorry it’s been so long since last update Ari hasn’t had much therapy lately. I am hoping that after February we will be getting back to a routine with her therapy. She is doing great she is so alert and smiling a lot more she has even giggled a couple of times. The only therapy she is getting right now is PT she continues to see Lana when can get there, and she has also been going to her PT Aries. Aries has been having Ari touch her nose which she will do sometimes and he puts her on her stomach and has her pull herself with her arms to the end of the table, she has got this one down when she wants to do it. She is so stubborn she will only do something when she wants to I have tried a few times to video her pulling her self to the end of the table but when ever I turn the camera on she won’t do anything not even hold her head up and then when the camera goes off she works, she is so funny. I will keep trying. This week was her last week with Aries, he got a great job opportunity and is moving this week we will miss him. He seems to be the one that gets the most reaction out of Ari. But I know God has a plan for her and she will be fine. Ari is also still going to get her ki method treatment every week plus I do a little at home

We are going to the neurologist Feb 11th to get the results of her MRI and then Feb 18th we will be leaving for Georgia for Ari’s IMT appointment। We are going to Georgia this time because Sharon Giammatteo who developed IMT is going to be there so she will be working on Ari and making sure Ari is getting all the supplements that she needs। They also do something called brain protocol in the Georgia office that they will also be checking to see if it is something Arianna is ready for. We will be there for 2 days and heading home Friday after her session. Bernie and the kids will be staying home and Bernie’s sister Sarah will be going to help me.

I have a couple of pictures I will try and get posted this weekend. Thank you for continuing to check on our princesses progress.

Wow, I didn’t realize it has been so long since last update. Arianna continues to do good in her therapies; she hasn’t even been giving her PT Aries such a hard time anymore and almost seems to be working with him instead of fighting him all the time. She is sitting for a little longer on her own, her PT Lana has been sitting her with her legs straight out in front of her and having her support herself with her arms on the ground on her sides. I put some new pictures of her sitting and playing in her noisy box. Last night she was in her noisy box and slowly lifting her right arm up and back looking for a plate that is hanging in it and when she felt it she would make it swing and hit the sides of the box, a couple of times she was even holding the plate.

Arianna had an appointment with her GI doctor last week and I got to learn how to change out her Mickey button ( I’m not looking forward to having to do that) but she was happy that Ari was eating most of her meals by mouth, and that Ari gained a little over 1 pound since she started eating by mouth. They didn’t know that I had started feeding her by mouth and getting rid of the tube feeds until her appointment, I tend to just do it and then let them know about it after the fact. We are trying to get Ari to start chewing more; she is eating chunky foods now she just doesn’t chew but a couple of times.

Ari also had an appointment with her neurologist a couple of weeks ago and they ordered another MRI, we won’t get the results of that until her next appointment in January. I’ve got mixed feelings about getting the result, I know that there is going to be improvements since her 1st MRI, I just don’t want to here their point of view, and they always seem to be so negative. She also added CP to Ari’s diagnosis and gave us some information for the CP organization in hopes that they will be able to help us with stuff for Ari if we need in the future.

We had to go back to Tampa General to get a copy of her first MRI and while we were there we ran into one of the Dr’s that took care of Ari , and one of her the therapist that worked with her and of course our favorite nurse. None of them could believe how much Ari had improved. Everyone but the Dr. asked what type of therapies we were doing, and were glad to hear that we had went the alternative route, The Dr told us that whatever we were doing to keep doing it cause it was working and didn’t ask what type of therapies we were doing with Ari (I think its sad that some Dr’s wont even look at alternative therapies even though they see people getting results.) I pray that one day they start to open their eyes and see that there are other options out that work better than the medicines that tend to cause more problems than you already had.
Well I think that is everything. We hope everyone has a great Thanksgiving

Good morning. Sorry it has taken so long to update, we’ve had a lot going on here. We want to thank everyone that was able to make it to the car wash. We were able to raise $360 to go towards her suit therapy. We didn’t realize that there were a couple of other car washes going on at the same time here in town, so we were surprised we raised as much as we did.

Arianna is doing well, I have started feeding her all her food by mouth and she gets 1 tube feed at night before she goes to bed. She is doing pretty well with this, we are now trying to teach her to chew she only chews 2-3 times then it’s like she forgets so her ST gave me some exercises to work on reteaching her brain to chew.

She has also started vision therapy. She gets this once a week and her therapist comes to the house. Her Vision therapist Mrs. Lois has brought us a light box, which is kind of like a lite brite with a flat screen that we can put different color sheets and blocks on to try and get Ari to look at. Mrs. Lois also brought a few toys for Ari to play with, and a noisy box which has a few toys hanging from it and we lay Ari under to try and get her to reach for the toys. I can’t figure out if she likes it or is trying to figure out why all the toys are hanging in her face. But she does look around at all the toys so she is at least moving her head around (Ari likes to keep her head looking to the left all the time).

We have also started back with ST and OT, we have been waiting since July for Medicaid to decide if she was eligible for it and after I called and told them I was going to go to my state representatives office they had an answer within a couple of hours.

Bernie left this morning for Texas for work he is going to be there for a week to see if he can get any work out there. Please pray he has a safe and productive trip. And also for Arianna’s continued healing. Thank you for your continued support. We love you all.

Car Wash

Sarah is having a carwash tomorrow, Saturday, Sept 20 from 9am to 1pm here in Sebring. She is hoping to raise money toward the suit therapy for Arianna and to help pay for the trip to the HBOT. If your car could use the wash, we will be at the Alligator Antiques, just north of Publix and Wendy's on U.S. 27. Arianna and all the kids will be there (hehe, they get to do the washing part). Thanks for all your support!

BTW

I guess I should say that we really believe that all the alternatives work, including the Ki method that Ari gets each week and the chinese herbal medicine. If we didn't we wouldn't post it or link it. Ari has been getting Ki each week as we have continued to see progress each week in the absence of some of the other stuff we can't afford to do regularly. Ki method (kingsinstitute) is also linked to the side. Bless you all