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Seths Updates

   I wish you could all see the progress I have made. I know most of you see a boy who seems to not do much, but sit in his chair, eat and sleep. What you may not see is my smiles, when I move my arms on command or that I cry when I am hurt. I love to be touched and did not feel people touch me for a while. I love to be talked to and I will turn my head if I know your voice so I can try and see you. I know when my mom is around and if I don’t hear her voice for a while I let her know. My mom can tell you what I need without any words. I have a schedule and I like sticking to it, I go to bed like a normal child and for the most part I sleep normally with out my mom having to suction me. Here are some of my updates and how my progress has gone over the years.

2003

        I have done Hyperbaric Oxygen treatments over the last year and have had a lot of changes in my brain. I now need less suctioning, I am a lot looser in my arms and legs. I can even sit indian style. I close my eyes, I can see light and dark, I am a lot more alert and I am staying healthy. I did loose some weight, my formula was making me vomit so my mom and the doctors tried putting me on a blended food diet, but I was not getting enough calories.          The doctors have tried several formula’s and now I am on one that doesn’t make me throw up as much. I also am off all my medications except baclophen and I am not constipated either. I have been so much more alert since getting off all the valium and relaxants. I am doing HBOT 5 days a week, PT and OT 3 days a week and my mom does range of motion everyday with me, Acupressure 3 days a week, and seeing a Osteopath 2 times a week. I have doctor appointments every month to check me and make sure my trach and G-tube are doing ok. I also have see a neurologist, orthopedic, and my primary doctor. I have splints for my feet and my hands that help them try and stay the way they are suppose to be. My mom does light therapy, oral therapy, music therapy, and aromatherapy with me at home too. I am very busy for a 3 year old. We were blessed to meet Dawn and her son Collin who have been there helping us this last year get Seth into treatments that have helped him. We went to a convention in Long Beach where we also got to meet 3 other parents and another child like Seth. It was a wonderful weekend and felt so great to finally be able to talk to these other parents in person, who understand what we go through everyday.

2004

Seth is doing so great although he has had to have a few surgeries he came through just fine. Seth’s hip came out of the hip socket and in order for him to do standing exercises and not be in pain we had to have the doctor put pins and a plate in his hip to hold it in place, at the same time the doctor cut the tendons in his feet to help his feet not droop and he will be able to wear his splints more comfortably. It was a long 6 week recovery for Seth and he was in a cast from his chest to his feet he did get two sores from the cast. I made sure to keep them clean and they healed with out any issues. It was not comfortable for Seth and he let us know how uncomfortable he was. We had to suction him a lot and he did not sleep well. I am glad he is done with all that. Seth also this year had a fundoplication to help him not vomit after eating. He is doing good with that and even though he will dry heave he doesn’t vomit, which helps prevent him from getting pneumonia. Seth has caught a cold and it progressed to a slight case of pneumonia because he gets so much secretion it just fills into his lungs. We were in the hospital for a few days and is doing great. Seth is still doing therapies and continuing to have progress. Seth is smiling all the time and he smiles when we talk to him so we know its not just a random thing or triggered because of the lights. He did do a swallow study and the doctors said Seth’s aspirating every 3rd swallow so feeding him orally is not something we should do right now. Seth has his gag and swallow reflexes back they are just not strong enough to give him food or liquid orally. We are going to continue to work on his oral skills. Seth has gained weight back and is at a normal weight and height for his age. We are taking a break from some therapy for the summer we are just doing the therapies here in town! I have taken Seth in the pool a couple of times, he loves it. Seth actually relaxes in the pool. We go in for about 45 min. It is a really good therapy for him. When we are done I lay him down and he will actually go to sleep for about 30 min to an hour. I was so nervous to take him back in the spa where he  had the accident and did not know if he would be traumatized all over again or be okay. I spoke with his doctors about it and they said to just talk to him and let him know he is safe  and let him know I am right there with him. He did great and still loves the water like he did before.

2005

Seth is doing good this year we have had a big scare when Seth got really ill with influenza A and B and pneumonia. He was hospitalized for 2 weeks. Seth’s oxygen got so low he required 80% O2 and the doctors even were debating putting him back on the ventilator, which he had not needed since his trach was put in after his accident. I was so scared I might loose him. Seth recovered and he is back to therapies and having more progress. Seth has been able to stand in his stander and weight bare, he also is so much looser with his arms they can be stretched to his sides. He can even move his arms on his own. Seth plays with his light up music toy and pushes the button on it to make it work when we tell him too. I am able to put Seth on his tummy and he is so comfortable, I just make sure his trach is not covered and his air way is clear. We use a yoga ball or when I am holding him I can do it too. I also can use a wedge. Seth started oral stimulation therapy and its helping strengthen his swallow, cough and gag reflexes. He is only vomiting when he is not feeling well. Even though he had the fundo when Seth does need to vomit he can, so it either came undone which it can or the vomit can just get through it. All in all he is doing great and still having progress. I have used a Tens unit on Seth to help him start getting feeling back in his body and having sensation. It seems to be helping a lot also the acupressure helps with that too.

2006

Seth is still doing really good he is staying healthy and even though he catches a cold about once a year or so, he has only been hospitalized once every year for a few days up to a weeks stay.

          We take Seth to do everything a normal child gets to do, he loves Disneyland and the kids and I have season passes so we go a few times a year. We also take him to the zoo, aquarium, Knotts Berry Farm, Sea World, to the movies, and basically every where we go. He does so well being out and about. His progress has improved more and more with his vision, body and mind. He actually has a strong cough now and even gags when we brush his teeth sometimes. He also breaths above his trach even with out the passy muir valve. We have decided to not work on getting his trach out until Seth doesn’t need any suctioning at all. If we take the trach out and Seth still needs suctioning we will have to suction his mouth and nose, which we do sometimes, but we will not have access to his lungs like we do with the trach, so he is likely to get pneumonia more often. The passy muir valve also dries out his trach and makes him get plugs that cause him to not be able to breath out of his trach the more we use them. We are only using them every so often now. We are still doing HBOT, PT, OT, Acupressure, Osteopath and we started seeing a chiropractor. I still do range of motion with Seth and am looking into anything else that can help. With Seth’s vision coming back so much and his pupils dilating now I don’t need to do the light therapy anymore. I still do the oral therapy to help him swallow better. Seth’s hands are deformed to the point that the bones have grown in the bending position, surgery is not an option and since they do not hurt him I wouldn’t do surgery anyway. Posturing is very common in people with brain damage and some is more severe than others especially if they are not able to move on their own.  

He doesn’t like the restrictions of his splints and his feet have even began to droop again. I have decided to use the splinting occasionally and not force him to wear them if he is not comfortable. His hip also came back out of the socket and the other one did as well, he is not in any pain because of it and I am not going to put him through the stress of doing the surgery again.

2007

Something new for Seth is that he seems to do well eating mashed up foods in very little amounts by mouth. Seth’s swallow has came back strong enough for him to control his saliva and swallow tiny amounts food that is like baby foods. We are going to do a swallow study and see if he is able to take more by mouth. For all of you who prayed for Seth to be able to eat by mouth thank you, most of all Thank God For Seth's Little Miracles. Seth also has started using a passy muir valve and it helps him breath above his trach and hopefully one day we can get his trach out. Seth makes noises when he has the valve on and he has been very verbal. It just amazes me that the doctors refer to him as being in the vegetable state, but he can do so much! Seth also every time we start to do some physical therapy acts sleepy. Then when we stop he wakes up. He does do purposeful movements and thing.

Seth survived another trip to Arizona to see family. He does so much better when we travel. He rarely needs suctioning while I am driving and he is ok with not sleeping in his own bed. We have still not found a physical therapist to come to the home yet. That would make things so much easier then going to the Medical Therapy Unit and being around all the kids in school, especially through the flu seasons. Seth is so much more alert and does things on command which is a huge step in his progress.

Seth has been going to his daddy's house for his week end visits and he does very well with that as well. There was a time when Seth had to be in his own bed and no place else! He does not like being up past his 8:00pm bedtime and if he is he will start vomiting and need a lot of suctioning. That is his way of letting us know he is uncomfortable and it's bedtime. He is getting so big! I am looking into getting a nurse to help out part time with Seth.

    Seth has a swing hung on the patio he gets to use it everyday and loves it. Seth has been showing signs of being much more alert and he is following new commands! He understands much more than we even know, but his body does not cooperate because the motor skills part of the brain was most damaged! Although he does do some things with his hands that we tell him to do!

Seth lost his 1st tooth and I tried my hardest to get it out but it was so small and Seth swallowed it. I was so scared, but Seth is ok, he lost another one a few months later and I did get it this time.

2008

Seth’s doing great, he has not been sick all year and he keeps improving with his alertness, movements, and everyday activities, he sleeps so normally and hardly ever needs suctioning at night. He has feeling in his body and moves when we touch him if our hands are cold or we are irritating him. He has not vomited at all since being on his formula that is highly digested and has probiotics to help his digestion. Seth goes to the bathroom regularly and is growing normally with his height and weight. Seth has had several seating devices and chairs over the years, but now is using a wheelchair more often. Seth’s body has not had any worsening deformities since we have stopped using the splints as much. Seth is still doing therapies that he has always done and even though we have tried a few new ones they didn’t help so we discontinued them, he is still progressing. We have a nurse who works with us 3-4 days a week part time and is awesome with Seth. I am grateful to have the help with Seth since he is getting bigger and my parents are not able to help care for him as much since my mom fell and broke her arm which ended up in a staff infection and multiple surgeries. My mom was very sick for two years from the infection and is just now starting to recover. My dad has been helping take care of her. My kids and I moved out three months before my mom’s injury occurred so it was easier to adjust from all the changes. We are living in an upstairs apartment for now, but as soon as a down stairs one becomes available we will move into it. I am thankful Seth is not to heavy to carry up and down the stairs. Autumn is a big help with Seth and knows how to suction and feed him and is very comfortable doing it. There has not been any huge improvements, but what Seth does do is always a miracle and blessing. We have been told Seth would never do anything he has done again, and the new things has done. So for that I am very grateful.

2009

This year we tried a new therapy in Arizona called movement lessons. This is a form of physical therapy but is different in that it is a more natural way of helping each individual move the way their body is willing and able to move. Seth did very well with this approach and was very relaxed during each session. We were able to visit family while in Arizona. My mom and my aunt went with me to help with Seth and it was a really fun trip. We will go back and do another round soon. So far I have just noticed Seth’s body is more relaxed to work with since the therapy. Seth also will lift his head to help you put on or take off his shirt, he closes his eyes if the sun or lights are too bright, he goes to sleep when you tell him its bed time, and he can cough and swallow when he needs suctioning to clear his secretions. Seth has also not been hospitalized for any illness this year either. Even though he has caught a cold this year and last we have been able to not let it progress into anything too serious. We have had a good year and even though Seth’s progress has been slow and he is not doing all the things we had hoped he would be doing by this time in his life, we are so grateful for what progress he has had. We have excepted this is how Seth will be for the rest of his life and we are okay with that. We will never stop trying to get Seth better. We are just so blessed that he is here and we are able to do everything we can for him. We have still had our nurse who helps care for Seth and we're able to move to a down stairs apartment, this is so much easier for me rather then climbing a floor of stairs a few times a day every day.

2010

We went to Arizona two times this year for 10 days each time to do the movement lessons treatments again. Seth is still a lot looser and doing well. Seth has gotten through another year with out any hospitalization. He has had a cold this year, but we kept it under control again this year. I am so blessed he is able to fight off illnesses as good as he does. I know the Hyperbaric Treatments help with his immune system, so even though Seth has not had any major improvements over the last few years, just him staying healthy is reason enough to continue. We don’t do acupressure as much as we use to or see the Osteopath.

I feel Seth needed to take a break from doing so much therapy and running around all day everyday. I am enjoying being home with him more and just enjoying our time together. I will always do therapy with Seth just sometimes we need to slow down and enjoy other things together.

2011

Seth is growing so big and still doing so well. This year has been so good. He has gone 3 years with out a hospital stay. He will catch a cold, but it doesn’t get too bad and he recovers with just doing breathing treatments, antibiotics, and rest at home.

We have had a nurse who worked for us for 4 years recently leave, but found a really great new one. We also have moved into a house with my boyfriend and his daughter who is 8. He helps me so much with Seth and excepts his condition completely. We found a Hyperbaric place in Ventura which is closer than Santa Monica, so that saves a lot of time in our day to be able to do other things. We do 3-5 treatments a day and still see the Chiropractor. We are also going to be doing a round of Stem Cell in Arizona. We also did another 10 days of movement lessons in Arizona and spent some time with some other mom’s and their kids who had non fatal drownings but have brain damage while we were out there. We do PT and OT a couple days a week and do a lot of therapy at home. Seth’s body is not having any issues since he hasn’t worn his splints now in a couple years. He does have deformities, but they have not gotten any worse. Seth likes to be home and not running around all day and we are enjoying time together more. I am not as exhausted as I was when we were doing so much therapy a day. I believe just maintaining the treatments we do for Seth is good for now and letting him heal by resting is okay.

     I also needed to be able to do therapy for my self finally after all these years and get help for issues I have not yet dealt with. Autumn also has gone through a lot this year and needs me more, so helping her deal with things and get her the help she needs is my priority. I am blessed to have a partner and new family in my life that is so loving and excepting of all of us.

2012

This year we went to Arizona and did adipose stem cell with Seth. The treatment was a bit rough on Seth, but I feel it will benefit him. He had stopped moving his arms as much before we did the stem cell and since the stem cell he started moving them again. We also did another round of movement lessons in Arizona too. Seth has stayed healthy for the most part, but did end up in the hospital late this year for a slight case of pneumonia. He was only in for 4 days. This year we had the tragic loss of my dear friends son Collin, Collin had his accident the year before Seth and they were the same age. Collin went to sleep and didn’t wake up. He will be missed and we love him so much and his Mom Dawn will be loved by us always and has a special place in our hearts.

There were a couple other near drown children who passed away this year. Its tragic that our kids can just pass away or get an illness that most would recover from, but for our kids it can be fatal. I have had the reality hit me that one day Seth will pass away. I have known it could happen, but no one close to me had experienced a loss of their child until now. Collin didn’t have a trach and had been able to eat by mouth, he had more movement than Seth and over all was doing well. He did have a Baclophen pump put in the year before his passing which caused some complications with his body and it had to be removed. Since it was removed Collin did have some issues he hadn’t have before. I wonder with all that these kids going through all that they do if they just get tired and need to rest and be at peace and whole again. I need to cherish every day with Seth and all my loved ones.

2013-2016

I have had a lot going on in my personal life over the last three years so I fell behind with updates. I am just going to do a recap of what’s been going on with Seth. Seth started puberty and with that came seizures which he had never had before. We have decided not to do therapies outside the home as it takes it's toll on Seth since puberty, so we just do therapy at home. Seth was hospitalized for a slight case of pneumonia in 2015 after not being sick for a couple of years. He has only caught a few colds and we can keep him at home and care for him for the most part. He also has finally lost all, but one baby tooth, he is getting a lot bigger which makes it a bit harder for me to do all the things I was able to do with him, like tummy time, bathing, and lifting. I am going to have to get more equipment to help care for him soon. Seth does have arm splints that are comfy and help his arms relax and his hands opened up more. Overall Seth is sleeping great,and staying well. He is still loose in his arms even through these past couple years of growth spurts his legs have began to get tighter because the bones are growing faster than the muscles and it causes him to be tighter. He can still bend his knees just not as far as when he was littler. Seth is amazing to me. Lights now cause Seth to have seizures, so we have to be careful which was something we never worried about before. We also moved 2 hours away from my family and the therapies I was doing for Seth. We needed to move for my partners job. It is so much cheaper to live here and we were able to get a bigger house. We needed more space to have all the equipment and things we need for Seth. Seth also has gotten so much heavier over the years, that my back had been bothering me. In 2013 it had gotten worse and I found out that I have two herniated disks and a compression fracture in my spine. I was told to not lift Seth and take care of it before it gets to the point that I will need surgery. Not being able to care for Seth like I use to and do all the therapies to help him has been hard for me. I have had some bouts of depression since my injury. I have had to do therapies and treatments to try and heal myself. The other mom’s from the near drown group have organized a retreat each year for a weekend where all of us mom’s can go and be together. I have attended three of the retreats, but the last couple years I have not been able to go. The support of these mom’s is so amazing. I am hoping to go to the one this year. When my friend Dawn’s son passed away she sent us a pulmonary vest which helps break up secretions around the lungs, this has saved Seth from getting seriously ill several times. I am so sad that I had to receive it through a tragedy, but will forever be grateful to have it. Over the last few years there has been a few more mom’s I know that have lost their child who had survived a near drowning accident. It has been so sad to watch these mom’s lose their child and has put more fear in me then ever before about the reality that I probably will out live Seth. My daughter, Autumn has also struggled over the years with a lot of things and you can read about her on her page of this website. I have always been here to help other families and want to continue to do so, while also doing therapies for Seth. We will be getting back into doing one or two a week to hopefully help control his seizures. We are also going to use CBD oil to help him. I am always doing research about things for him. Seth still does Range of Motion, massage therapy, music therapy, and oral therapies for now. I have just taken this time to help myself and get hopefully get my back better. I have had two wonderful nurses work for us full time since we have been up here. Seth still has a schedule even through puberty he has started sleeping later and sometimes even until the early afternoon. We can’t take him to the movies because he will have seizures from the lights, and taking him places for the day or long trips by myself can’t happen anymore because of my injury and all of Seth's changes since puberty. So there have been those changes, but all in all Seth is healthy, happy and doing great. These new changes truly sadden me!