So our 3 week break from CEASE has turned into a 2 month break. Life happens and it has impacted our CEASE plans. From work changes to sicknesses, to a sprained neck last week I have not had the energy to commit to CEASE. Thankfully, I am feeling much better and I am gearing up to start the DTaP clearing with Noah next week. We have all of the remedies and we are starting back his vitamin C this week. I will keep everyone posted on how our first week back goes.
Today was an amazing day! We all took the day off today and went to Richmond VA to see a well known DAN! doctor. Before our doctor's appointment I decided I wanted to try and schedule a haircut for Noah at a children's salon in Richmond I had heard great things about. I was prepared for possible issues with the haircut because he has had such a problem with sensory issues around his head. He hates washing his hair, brushing his hair and has freaked out when I have tried to cut his hair. Well today he did AMAZING. No issues AT ALL! I was stunned! He sat in a little red jeep, watching a Barney video and eating cookies and could have cared less that his hair was getting cut! I am so thrilled about this!!!! And he looks like a clean cut little man.
Then we went to the DAN! doctor appt. The reason I wanted Noah to meet with this doctor was so that testing could be done. Don't get me wrong, I am very pleased with CEASE and homeopathy but I would love to know what is going on internally in Noah's body--- does he have bad bacteria and yeast in his gut? Don't know... does he have high levels of metal in his body? no clue.... is he allergic to any foods? Or deficient in vitamins and minerals? So, that is my main reasoning. Once I learn what is going on I hope that homeopathy will continue to address some of these issues. One thing the DAN! doctor said during our 2 hour meeting floored me and was so encouraging- She said "I believe you guys are going to pull him out of this." She feels that recovery is a great possibility for Noah. She said he will only "get better and better" with the proper interventions. So that was so good to hear. I already felt it in my heart but having confirmation was so encouraging.
So that is a quick update on how things have been. I am nervous about the next clearing but very excited to see what is in store for Noah. He is just blossoming right now and I know with more time and healing we will see great things.
Showing posts with label trusting God. Show all posts
Showing posts with label trusting God. Show all posts
Tuesday, October 1, 2013
Sunday, September 8, 2013
Our "Wish List" for the DTaP Clearing and a Few Updates on Noah
I am so thankful that we are finally moving past the bad weeks we had with Noah. I still am not sure what caused the issues we saw (vomiting, loss of appetite, intense stimming, a weird rash on his back, increase in sensory issues etc). Was it due to the Hep B clear we just wrapped up? Was it a virus? Regression? A mix of all? What I find to be the most interesting is that Noah appeared much worse (behavior, sickness) during our break than any time during the Hep B clearing. It got to the point where I was considering asking the homeopath to let us continue on with Hep B. I really do believe we will need to revisit this clearing again in the future.
He has not vomited since this past Tuesday. I started to notice that he would vomit when drinking his almond milk, specifically when I would add his daily vitamin c supplement to it. He has never had a problem with his vitamin c... he has been taking 500 mg a day for the last few months... but I googled the symptoms of too much vitamin c and in addition to the diarrhea I had heard about, vomiting and nausea can also result from too much vitamin c. I stopped the vitamin c and have not seen any more vomiting. I hope to start it back in a few weeks gradually. But for now I am giving his stomach a break.
His "food jag" seems to have resolved for the most part as well. His occupational therapist told me that a food jag is when a child limits his foods to only 1 or 2 foods. Noah was always a picky eater, he eats about 10 foods... I noticed over the last 4 weeks that he started refusing his bananas, yogurt, apple sauce, cereal, even his favorite chocolate pudding! Yikes. It freaked me out. Especially when I heard his little tummy growling and yet he still refused almost all foods. At one point I was lucky if he ate oatmeal in the morning and a cookie for the day. Our OT gave me some direction on how to deal with it. The KEY was to make sure we were always changing the foods he did eat--- for example, every day in his oatmeal, I changed the time I fed it to him, the bowl I used... I would add different fruits in it each day to change the flavor... I would add almond butter, peaches, apple sauce and slices of banana. It did seem to work because within two weeks he was reintroducing other foods back into his diet.
We also have finally found a multivitamin that Noah tolerates. It is from The Honest Company and it is a powder that can easily be mixed in drinks and foods. So now I can at least know he is getting a supplement to help offset the lack of fruits and vegetables in his diet. And the best part is that the supplement is safe without any harmful ingredients, which is not the case for many children's vitamins.
Another HUGE development for Noah is that he has stopped using a bottle!!!!! SO EXCITED ABOUT THIS ONE!!!!!!!! We were able to discontinue the bottle use during his vomiting and he hasn't requested it. In other news, we just purchased a little boy doll for Noah hoping that he would connect to it better than the boy baby doll he has. It is cute, with crazy hair, and looks a lot like Noah. Noah loves his boy doll. He smiles lovingly at it, calls it "a boy", and just the other day he started moving his arm up and down and saying "Hi" and "bye". He also has given it hugs and kisses. So cute!
OUR WISH LIST FOR the DTaP Clear:
We still have a few more weeks before we start another clearing (we got an extension from our homeopath!). We will tackle the DTaP next. Here are the areas that I pray are healed with this clearing:
1) Eye contact- Noah goes through periods of amazing eye contact and then it stops. This is a hard one for me. Who knew eye contact was so important!? When he won't look at me I feel disconnected from him and I realize how much he is missing out on by not looking at people. I pray his eye contact improves during this next clearing.
2) Sensory issues-- this is a big one for Noah. Grooming and eating are big issues that we struggle with, all related to sensory overload. Brushing his hair, brushing his teeth, cutting his nails, bathing, washing his hair, eating are all impacted by this sensory processing disorder. I pray that this clearing helps these issues as well.
3) Developmental delay and speech- Noah still struggles to communicate... he is doing great with labeling and repeating what he hears but he struggles with using language to communicate. Echolalia is emerging. If I ask him a questions he will repeat back to me the last word. He still struggles to understand what people are saying to him. He also does not have much imaginative play.
4) Rituals/OCD behaviors-- this has emerged over the last 6 months and it is becoming a pretty big problem. Every song Noah hears he has elaborate rituals that he does to the music. A stranger may not notice him even doing it but I have realized that as soon as we get to a certain point in the song Noah will go to a certain area of the room, touch a chair and then move to another area and touch his toe to a spot on the area rug. He flips out when I disrupt this ritual. He also is turning in circles and doing side eyes throughout the house on a regular basis.
5) Insomnia- I pray that with this next clearing we will see some change with his sleep problems. During the Hep B it was a constant issue for us. I know this is a big area that needs healing-- he did not sleep for the first 15 months of his life. I pray that his insomnia resolves and he begins to sleep through the night.
I know this is a big list and may seem unrealistic to those reading. I just know that with God ANYTHING is possible. I am praying for miracles, for healing. I am trusting that the Lord will continue to direct our steps and lead us to the best interventions for Noah. I know in my heart that CEASE therapy is one of those interventions. I am certain if we continue on we will continue to see more healing and recovery.
He has not vomited since this past Tuesday. I started to notice that he would vomit when drinking his almond milk, specifically when I would add his daily vitamin c supplement to it. He has never had a problem with his vitamin c... he has been taking 500 mg a day for the last few months... but I googled the symptoms of too much vitamin c and in addition to the diarrhea I had heard about, vomiting and nausea can also result from too much vitamin c. I stopped the vitamin c and have not seen any more vomiting. I hope to start it back in a few weeks gradually. But for now I am giving his stomach a break.
His "food jag" seems to have resolved for the most part as well. His occupational therapist told me that a food jag is when a child limits his foods to only 1 or 2 foods. Noah was always a picky eater, he eats about 10 foods... I noticed over the last 4 weeks that he started refusing his bananas, yogurt, apple sauce, cereal, even his favorite chocolate pudding! Yikes. It freaked me out. Especially when I heard his little tummy growling and yet he still refused almost all foods. At one point I was lucky if he ate oatmeal in the morning and a cookie for the day. Our OT gave me some direction on how to deal with it. The KEY was to make sure we were always changing the foods he did eat--- for example, every day in his oatmeal, I changed the time I fed it to him, the bowl I used... I would add different fruits in it each day to change the flavor... I would add almond butter, peaches, apple sauce and slices of banana. It did seem to work because within two weeks he was reintroducing other foods back into his diet.
We also have finally found a multivitamin that Noah tolerates. It is from The Honest Company and it is a powder that can easily be mixed in drinks and foods. So now I can at least know he is getting a supplement to help offset the lack of fruits and vegetables in his diet. And the best part is that the supplement is safe without any harmful ingredients, which is not the case for many children's vitamins.
Another HUGE development for Noah is that he has stopped using a bottle!!!!! SO EXCITED ABOUT THIS ONE!!!!!!!! We were able to discontinue the bottle use during his vomiting and he hasn't requested it. In other news, we just purchased a little boy doll for Noah hoping that he would connect to it better than the boy baby doll he has. It is cute, with crazy hair, and looks a lot like Noah. Noah loves his boy doll. He smiles lovingly at it, calls it "a boy", and just the other day he started moving his arm up and down and saying "Hi" and "bye". He also has given it hugs and kisses. So cute!
OUR WISH LIST FOR the DTaP Clear:
We still have a few more weeks before we start another clearing (we got an extension from our homeopath!). We will tackle the DTaP next. Here are the areas that I pray are healed with this clearing:
1) Eye contact- Noah goes through periods of amazing eye contact and then it stops. This is a hard one for me. Who knew eye contact was so important!? When he won't look at me I feel disconnected from him and I realize how much he is missing out on by not looking at people. I pray his eye contact improves during this next clearing.
2) Sensory issues-- this is a big one for Noah. Grooming and eating are big issues that we struggle with, all related to sensory overload. Brushing his hair, brushing his teeth, cutting his nails, bathing, washing his hair, eating are all impacted by this sensory processing disorder. I pray that this clearing helps these issues as well.
3) Developmental delay and speech- Noah still struggles to communicate... he is doing great with labeling and repeating what he hears but he struggles with using language to communicate. Echolalia is emerging. If I ask him a questions he will repeat back to me the last word. He still struggles to understand what people are saying to him. He also does not have much imaginative play.
4) Rituals/OCD behaviors-- this has emerged over the last 6 months and it is becoming a pretty big problem. Every song Noah hears he has elaborate rituals that he does to the music. A stranger may not notice him even doing it but I have realized that as soon as we get to a certain point in the song Noah will go to a certain area of the room, touch a chair and then move to another area and touch his toe to a spot on the area rug. He flips out when I disrupt this ritual. He also is turning in circles and doing side eyes throughout the house on a regular basis.
5) Insomnia- I pray that with this next clearing we will see some change with his sleep problems. During the Hep B it was a constant issue for us. I know this is a big area that needs healing-- he did not sleep for the first 15 months of his life. I pray that his insomnia resolves and he begins to sleep through the night.
I know this is a big list and may seem unrealistic to those reading. I just know that with God ANYTHING is possible. I am praying for miracles, for healing. I am trusting that the Lord will continue to direct our steps and lead us to the best interventions for Noah. I know in my heart that CEASE therapy is one of those interventions. I am certain if we continue on we will continue to see more healing and recovery.
Tuesday, July 16, 2013
Back In the Saddle and a Few Updates
I have had a few days to process my feelings, reflect on what occurred on Sunday and I have allowed myself time to cry... I am now ready to hop back on the saddle. I must do this. I have to press forward towards recovery and towards health and healing for Noah and for my family. I refuse to let autism rule my life or win. I refuse to allow it to take me and my family under.
In other news, I have evaluated where we are at with therapy and with interventions we are trying. We are starting to get comfortable, complacent.... Noah has been doing well, and even though we don't mean to, we start relaxing a bit when we see so much progress. I know that we have missed amping up our therapy routine and adding new, helpful interventions. The last few days I have looked through books and materials and plan to add new interventions and techniques to our daily routine with Noah. I am going to really put more of a focus on eating, bathing, self help skills and language. I will also be pulling interventions from the "verbal behavior" ABA approach. Noah's diet is minimal and he doesn't eat many things due to his sensory problems. This is one area that we put on the "back burner" because we had so many other issues to tackle and we need to revisit it. Bathing has always been a problem... but it seems to get worse every bath we do. He used to sit in the bath for at least a few minutes and then cry until he got pulled out... now he won't even sit down. So, we must work on this and figure out a way to make him tolerate it.
Other updates: Today Noah had his first meeting with the school system to be evaluated for special education preschool. He won't have his official evaluation until September....
And thankfully, the Medicaid Waiver, has finally started covering personal care for Noah, which allows my mother to be paid by Medicaid for his care. This is huge and such a blessing. This frees up money so that we can afford ABA therapy costs. We pay almost $1000 a month for ABA, which is only 6 hours a week! We are so thankful for all of our blessings. I know the Lord is providing for us during this time.
In other news, I have evaluated where we are at with therapy and with interventions we are trying. We are starting to get comfortable, complacent.... Noah has been doing well, and even though we don't mean to, we start relaxing a bit when we see so much progress. I know that we have missed amping up our therapy routine and adding new, helpful interventions. The last few days I have looked through books and materials and plan to add new interventions and techniques to our daily routine with Noah. I am going to really put more of a focus on eating, bathing, self help skills and language. I will also be pulling interventions from the "verbal behavior" ABA approach. Noah's diet is minimal and he doesn't eat many things due to his sensory problems. This is one area that we put on the "back burner" because we had so many other issues to tackle and we need to revisit it. Bathing has always been a problem... but it seems to get worse every bath we do. He used to sit in the bath for at least a few minutes and then cry until he got pulled out... now he won't even sit down. So, we must work on this and figure out a way to make him tolerate it.
Other updates: Today Noah had his first meeting with the school system to be evaluated for special education preschool. He won't have his official evaluation until September....
And thankfully, the Medicaid Waiver, has finally started covering personal care for Noah, which allows my mother to be paid by Medicaid for his care. This is huge and such a blessing. This frees up money so that we can afford ABA therapy costs. We pay almost $1000 a month for ABA, which is only 6 hours a week! We are so thankful for all of our blessings. I know the Lord is providing for us during this time.
Friday, May 31, 2013
Week 11- Hep B 200c Continued and Feeling Thankful
So this week, due to Noah's aggravations from the last full dose of Hep B 200c, our homeopath advised us to dilute the Hep B 200c and give 4 doses over 4 hours. This diluted dosing has appeared to help Noah get over many of his issues from the last dose. He hasn't had as much irritability this week and he is tolerating the puppy much more.
He continues to hold his hands over his ears but I think we may have figured out what that is about. I believe that his sensory issues are being dealt with in this clearing. I have mentioned in the past that one of Noah's main symptoms was "zoning out" and acting like a zombie- this was also true of his response to noises. A smoke alarm could go off and he wouldn't flinch. Definitely under responsive to noise. Now, since starting CEASE, he is more aware (of people, his surroundings etc), he is also more aware of sounds that he previously did not notice. He is aware of all of these noises and he is responding to them. I am hoping that after a while it won't bother him as much. We will see.
I know I post this every week but I am still so grateful that we have found this therapy and homeopathy for our son. It feels so empowering to take my son's health into my own hands and not rely on the "medical professionals" to prescribe a medication or give a vaccine. I am just feeling really thankful today.... and I truly have HOPE for recovery... and I feel it is very possible with this type of treatment. This therapy isn't just a bandaid... it is healing. The temporary aggravations are SO worth the gains we are seeing.
If anyone reading this post is hesitant in trying this for their child I would tell you to just try... what do you have to lose? You possibly have everything to gain, if not full recovery, it could help improve your child's situation so much. I know just in this short amount of time I went from having a child that struggled to get a word out to a child who is now repeating any word he hears--- it isn't full recovery BUT it is huge to us. It brings us so much joy and hope for better days ahead.
He continues to hold his hands over his ears but I think we may have figured out what that is about. I believe that his sensory issues are being dealt with in this clearing. I have mentioned in the past that one of Noah's main symptoms was "zoning out" and acting like a zombie- this was also true of his response to noises. A smoke alarm could go off and he wouldn't flinch. Definitely under responsive to noise. Now, since starting CEASE, he is more aware (of people, his surroundings etc), he is also more aware of sounds that he previously did not notice. He is aware of all of these noises and he is responding to them. I am hoping that after a while it won't bother him as much. We will see.
I know I post this every week but I am still so grateful that we have found this therapy and homeopathy for our son. It feels so empowering to take my son's health into my own hands and not rely on the "medical professionals" to prescribe a medication or give a vaccine. I am just feeling really thankful today.... and I truly have HOPE for recovery... and I feel it is very possible with this type of treatment. This therapy isn't just a bandaid... it is healing. The temporary aggravations are SO worth the gains we are seeing.
If anyone reading this post is hesitant in trying this for their child I would tell you to just try... what do you have to lose? You possibly have everything to gain, if not full recovery, it could help improve your child's situation so much. I know just in this short amount of time I went from having a child that struggled to get a word out to a child who is now repeating any word he hears--- it isn't full recovery BUT it is huge to us. It brings us so much joy and hope for better days ahead.
Saturday, March 30, 2013
CEASE Clearing and Various Updates
Here are some updates on things I have posted about in previous blogs:
CEASE: We delayed Noah's new dosage of Hep B 30 c until Thursday due to his sickness earlier in the week. He continues to have a runny nose on/off, and I have noticed this week that he has been very emotional and cranky- more than usual. Yesterday, I found that he kept bursting into tears for no apparent reason. Today, he kept screaming at everything. The only thing that calmed him down was going outside--- which we did ALL DAY LONG. He has also started to stim more--- shaking his head back and forth (which is not common), and I have noticed some facial tics that I haven't seen since he was 15 months old. His face is constantly staying flushed and he has had a few green colored diapers. Are these side effects of the clearing? I will need to ask the homeopath about these things and get her feedback.
EDCD Waiver: We received Noah's Medicaid card in the mail recently and we have started the process of hiring a respite provider. I am also looking into the EPSDT screening with a physician to see if Noah may qualify for ABA services through Medicaid. I am praying that he does. This would be a HUGE load off of our shoulders.
ABA/Speech/OT: Therapy continues to go well. He stays very busy through the week. We have recently seen a positive change in ABA. He is starting to catch on to things and he isn't resistant to his therapist Lily. I am not sure whether Noah is benefitting at all from speech. The speech therapist just sits there and plays with him and doesn't offer many suggestions on how we can work with him on speech (isn't that the point?!). She is very nice and Noah doesn't mind her but we need intensive speech therapy SO I am considering adding outpatient speech since his Medicaid went through. More than likely it will cover it now. Occupational Therapy has been more helpful to me than it is to Noah. His OT gives me ideas on eating, bathing, dressing, playing- a lot of problem solving and creative ideas. She helps keep me on track with developmental milestones that we need to work on.
Gluten free/Casein free diet: Noah has been adhering to these diet changes since December. Has it helped??? I don't really know. We have worked our butts off with Noah so I don't really know what exactly has caused the improvements we are seeing. I know the diet doesn't harm him but it is a pain in the butt to keep up. And.... what do you do when he goes to birthdays or out to dinner? I wish he could enjoy birthday cake, and easter candy and ice cream from time to time. But it isn't possible right now. I pray that homeopathy heals his body so that he will one day be able to enjoy various foods he cannot currently eat.
Things we are working on with Noah:
-signing/using words or approximations for what he wants
-yes/no
-pointing to communicate
-taking turns with toys
-giving him choices to choose from- having him pick
-drawing/ arts and crafts (he hates this!)
-hygiene (brushing teeth, bathing, clipping nails, brushing hair--- This issue is exhausting. He has a very big issue with all of these things!)
-imitation (of body movements, noises, household tasks).
-imaginative play (still not comprehending this, but we have started to see some changes recently)
Puppy Therapy!: We have decided to get Noah a 7 month old puppy and hope he will benefit from the interaction. Little Luna (mini labradoodle) will be arriving the weekend of April 13th. Just two weeks before Noah's second birthday (BEST early birthday present ever!). I will post pics when she arrives. Hopefully he will like her!
Homeopathy for Me!: So, since I have seen such positive things with Noah in regards to homeopathy, I have decided to seek treatment as well. I will be having my first consultation with our homeopath April 10th. I have a lot of things I want to work on and I am looking forward to getting better.
That is all for now, I think!
As always, I am trusting that God will take care of Noah, me and my family and that He will give us His wisdom and guidance and we move forward and towards recovery. Happy Easter!!
CEASE: We delayed Noah's new dosage of Hep B 30 c until Thursday due to his sickness earlier in the week. He continues to have a runny nose on/off, and I have noticed this week that he has been very emotional and cranky- more than usual. Yesterday, I found that he kept bursting into tears for no apparent reason. Today, he kept screaming at everything. The only thing that calmed him down was going outside--- which we did ALL DAY LONG. He has also started to stim more--- shaking his head back and forth (which is not common), and I have noticed some facial tics that I haven't seen since he was 15 months old. His face is constantly staying flushed and he has had a few green colored diapers. Are these side effects of the clearing? I will need to ask the homeopath about these things and get her feedback.
EDCD Waiver: We received Noah's Medicaid card in the mail recently and we have started the process of hiring a respite provider. I am also looking into the EPSDT screening with a physician to see if Noah may qualify for ABA services through Medicaid. I am praying that he does. This would be a HUGE load off of our shoulders.
ABA/Speech/OT: Therapy continues to go well. He stays very busy through the week. We have recently seen a positive change in ABA. He is starting to catch on to things and he isn't resistant to his therapist Lily. I am not sure whether Noah is benefitting at all from speech. The speech therapist just sits there and plays with him and doesn't offer many suggestions on how we can work with him on speech (isn't that the point?!). She is very nice and Noah doesn't mind her but we need intensive speech therapy SO I am considering adding outpatient speech since his Medicaid went through. More than likely it will cover it now. Occupational Therapy has been more helpful to me than it is to Noah. His OT gives me ideas on eating, bathing, dressing, playing- a lot of problem solving and creative ideas. She helps keep me on track with developmental milestones that we need to work on.
Gluten free/Casein free diet: Noah has been adhering to these diet changes since December. Has it helped??? I don't really know. We have worked our butts off with Noah so I don't really know what exactly has caused the improvements we are seeing. I know the diet doesn't harm him but it is a pain in the butt to keep up. And.... what do you do when he goes to birthdays or out to dinner? I wish he could enjoy birthday cake, and easter candy and ice cream from time to time. But it isn't possible right now. I pray that homeopathy heals his body so that he will one day be able to enjoy various foods he cannot currently eat.
Things we are working on with Noah:
-signing/using words or approximations for what he wants
-yes/no
-pointing to communicate
-taking turns with toys
-giving him choices to choose from- having him pick
-drawing/ arts and crafts (he hates this!)
-hygiene (brushing teeth, bathing, clipping nails, brushing hair--- This issue is exhausting. He has a very big issue with all of these things!)
-imitation (of body movements, noises, household tasks).
-imaginative play (still not comprehending this, but we have started to see some changes recently)
Puppy Therapy!: We have decided to get Noah a 7 month old puppy and hope he will benefit from the interaction. Little Luna (mini labradoodle) will be arriving the weekend of April 13th. Just two weeks before Noah's second birthday (BEST early birthday present ever!). I will post pics when she arrives. Hopefully he will like her!
Homeopathy for Me!: So, since I have seen such positive things with Noah in regards to homeopathy, I have decided to seek treatment as well. I will be having my first consultation with our homeopath April 10th. I have a lot of things I want to work on and I am looking forward to getting better.
That is all for now, I think!
As always, I am trusting that God will take care of Noah, me and my family and that He will give us His wisdom and guidance and we move forward and towards recovery. Happy Easter!!
Saturday, March 9, 2013
Preparing Myself
I took Noah to Gymboree today. He is still in the Level 3 class which has 12-16 month olds. He is 22 months old so he stands out. He is already a big boy but when he is with these children he towers over them. I wonder whether it is better for him to stay in a class with these younger children and work on communication development or whether he should be challenged by children his own age and observe their behaviors.... I plan to ask our therapists about this. I asked his Gymboree teacher about when he will be ready for the next class. She hesitated.... she told me that the last few classes he is "acting" like all of the other children. So, we are seeing some progress. I just don't know if it is realistic to think that he is going to act just like children his age. It may not happen. If that is the criteria for moving to the next class we may be waiting a long while.
This got me thinking about something that really bothers me.... Right now we can hide what is going on with Noah to an extent. But not for much longer. His age hides the disability he is struggling with. Very soon however it will be obvious to everyone that he isn't like his peers. I am dreading his second birthday. I know that sounds horrible. It will just be a reminder to me that he is struggling. That he isn't able to say words like other two year olds. That he may not even comprehend that he is getting gifts or pay attention to his birthday guests. I am preparing myself for this time to come. I know it will be so hard for me and my husband. It is hard enough that we are grieving but we haven't had to deal with the public's opinion. This will come soon.
God, my heart aches for my little boy. I want him to be healed. I want him to be whole. I want him to be happy and healthy. Lord please hear my desperate plea.
This got me thinking about something that really bothers me.... Right now we can hide what is going on with Noah to an extent. But not for much longer. His age hides the disability he is struggling with. Very soon however it will be obvious to everyone that he isn't like his peers. I am dreading his second birthday. I know that sounds horrible. It will just be a reminder to me that he is struggling. That he isn't able to say words like other two year olds. That he may not even comprehend that he is getting gifts or pay attention to his birthday guests. I am preparing myself for this time to come. I know it will be so hard for me and my husband. It is hard enough that we are grieving but we haven't had to deal with the public's opinion. This will come soon.
God, my heart aches for my little boy. I want him to be healed. I want him to be whole. I want him to be happy and healthy. Lord please hear my desperate plea.
Monday, March 4, 2013
Detox Reactions
Wow, It hasn't even been an entire day and I can already tell Noah isn't feeling well. We started the Hep B detox today. He had a "sour" smelling diaper this afternoon and just hasn't been his normal self. He rubs his eyes constantly and seems lethargic. He doesn't want to play or do normal activities- he wants to be held. He has excessive thirst this evening.
I hate to see Noah suffer in any way- the crazy thing is that I am the one doing this to him! I know that CEASE therapy is a detox and this is part of the process. I have to be prepared for rough days/weeks. He has to detox so he can feel better... so he can heal. I must focus on that. I plan to give him Epsom salt baths regularly this week to help his body remove the toxins. I plan to ask the homeopath about which cell salts to use to make him the most comfortable during this time.
Lord, please be with our little boy. Help his body remove the toxins so he can get better.
I hate to see Noah suffer in any way- the crazy thing is that I am the one doing this to him! I know that CEASE therapy is a detox and this is part of the process. I have to be prepared for rough days/weeks. He has to detox so he can feel better... so he can heal. I must focus on that. I plan to give him Epsom salt baths regularly this week to help his body remove the toxins. I plan to ask the homeopath about which cell salts to use to make him the most comfortable during this time.
Lord, please be with our little boy. Help his body remove the toxins so he can get better.
Saturday, March 2, 2013
About to Begin CEASE Therapy and We are Excited!!!
Our homeopath sent us a chart for treatment over the next few weeks. Last Sunday we gave Noah Aconite. Today we gave him Cal. Carbonica and fat soluble Vitamin C. Monday will be the first day of the Hep B clearing! The homeopath says she is going slow to help with the detox reaction. We are staying at 30x for two weeks instead of one.
We are excited to start CEASE therapy and to see what positive results come with the clearings/detox. I am sure that the vaccines did not help Noah's development and probably contributed greatly to the situation we are dealing with now. I don't know if it is the sole reason for his autism but it may very well be. I also think at some point we will need to clear antibiotics since he was given 5 rounds of different antibiotics between 9 and 12 months... at the same time we noticed him going into a "fog" and not paying much attention to us. My gut tells me they also contributed to the autism.
I have read and been told by those going through homeopathy that you need to give it at least 6 months to see improvements. Some remedies may not be the right "fit" and it may take some time for the treatment to work on Noah. We are going to give it a good try.... probably a year. I hope that in a year from now we will see a significant difference in Noah. I pray that he blesses us with his sweet voice. I pray that he understands language better and engages with children and strangers without anxiety. I pray that his development catches up with his peers.
I will continue to post updates on how he does with this new treatment.
We are excited to start CEASE therapy and to see what positive results come with the clearings/detox. I am sure that the vaccines did not help Noah's development and probably contributed greatly to the situation we are dealing with now. I don't know if it is the sole reason for his autism but it may very well be. I also think at some point we will need to clear antibiotics since he was given 5 rounds of different antibiotics between 9 and 12 months... at the same time we noticed him going into a "fog" and not paying much attention to us. My gut tells me they also contributed to the autism.
I have read and been told by those going through homeopathy that you need to give it at least 6 months to see improvements. Some remedies may not be the right "fit" and it may take some time for the treatment to work on Noah. We are going to give it a good try.... probably a year. I hope that in a year from now we will see a significant difference in Noah. I pray that he blesses us with his sweet voice. I pray that he understands language better and engages with children and strangers without anxiety. I pray that his development catches up with his peers.
I will continue to post updates on how he does with this new treatment.
Saturday, February 23, 2013
The Homeopathic Remedies have Arrived!
We received a package in the mail today from the homeopath. Our first set of remedies for Noah has arrived. She sent us the Hep B vaccine in various doses, Pulsatilla and Calcium Carbonica (she thinks that these both may be his constitutional remedy) and Aconite (to help prepare the body for detox).
I am a big ball of excitement and nerves. I am excited to start and to see how he does... but I am also nervous because I don't want to cause him any harm or discomfort. I know that the detox isn't going to be symptom-free but I am praying for mild reactions. The homeopath says that she is going to take it slow and steady to help him with the detox.
She wants Noah to begin to take Vitamin C. She also would like for him to begin with the Aconite remedy. I should be able to start this tomorrow. I will dissolve the small pellet in water and syringe it in to Noah's mouth. Aconite is supposed to help the body prepare itself for the upcoming detox.
We plan to start tomorrow!!! I will continue to update the blog with our experience as we begin homeopathy and CEASE therapy to help our son recover from autism.
I am a big ball of excitement and nerves. I am excited to start and to see how he does... but I am also nervous because I don't want to cause him any harm or discomfort. I know that the detox isn't going to be symptom-free but I am praying for mild reactions. The homeopath says that she is going to take it slow and steady to help him with the detox.
She wants Noah to begin to take Vitamin C. She also would like for him to begin with the Aconite remedy. I should be able to start this tomorrow. I will dissolve the small pellet in water and syringe it in to Noah's mouth. Aconite is supposed to help the body prepare itself for the upcoming detox.
We plan to start tomorrow!!! I will continue to update the blog with our experience as we begin homeopathy and CEASE therapy to help our son recover from autism.
Monday, February 11, 2013
EDCD Waiver and Autism
Tomorrow we meet with an individual who will be conducting a UAI screening to see if Noah qualifies for the EDCD Medicaid waiver. I am nervous about this process and how it is going to go. This particular waiver was originally intended for the Elderly. It has since been made available to individuals that have disabilities, including autism. The person must meet certain criteria--- they must be dependent in ADLs and IADLs (activities of daily living such as bathing, dressing, feeding, toileting etc.) and have a serious medical need that could result in nursing home placement. If a person receives the EDCD waiver, they are allowed to receive respite services and they qualify for Medicaid. This is the key. If Noah received Medicaid, it would cover the ABA therapy he is in need of. It would pay all of our out of pocket expenses such as copays. It would pick up where insurance leaves off (or in our case, what it never covered originally).
Noah does nothing for himself without our help. He does not attempt to dress or undress himself. He does not feed himself yet. He isn't potty trained. He does not brush his own teeth or hair or groom himself in any way. He is completely dependent on us. So, I am pretty certain he qualifies in that department. I think his diagnosis of autism should qualify him for medical need as this disorder requires intensive weekly therapy (speech, occupational and ABA). So.... I am praying that this screening goes well and that Noah qualifies for help. If this were to go through, it would be such a huge weight off of our shoulders. He would get the therapy he needs and we wouldn't have to work 80 hours a week or sell all of our belongings to pay for therapy. If this doesn't go through, we will continue to trust that God will handle it.
UPDATE: The screening went okay. Not sure what to expect. They didn't ask that many questions about Noah but did state something to the effect of "it shouldn't be a problem" when I inquired about qualifying. We will receive a letter in two weeks to let us know their decision.
Noah does nothing for himself without our help. He does not attempt to dress or undress himself. He does not feed himself yet. He isn't potty trained. He does not brush his own teeth or hair or groom himself in any way. He is completely dependent on us. So, I am pretty certain he qualifies in that department. I think his diagnosis of autism should qualify him for medical need as this disorder requires intensive weekly therapy (speech, occupational and ABA). So.... I am praying that this screening goes well and that Noah qualifies for help. If this were to go through, it would be such a huge weight off of our shoulders. He would get the therapy he needs and we wouldn't have to work 80 hours a week or sell all of our belongings to pay for therapy. If this doesn't go through, we will continue to trust that God will handle it.
UPDATE: The screening went okay. Not sure what to expect. They didn't ask that many questions about Noah but did state something to the effect of "it shouldn't be a problem" when I inquired about qualifying. We will receive a letter in two weeks to let us know their decision.
Sunday, February 10, 2013
Does Autism Control Our Life?
The answer is yes. I was thinking about this today. Every single part of our life is impacted/affected by autism.
Our extracurricular activities (pretty much non-existent), our finances (have to be a on a strict budget to pay for all of Noah's therapy), our food choices (can't let Noah watch us eat gluten and dairy foods), our relationships (marriage strained, no time for friends, local family not very supportive).... our days are governed in many ways by autism. We can't just relax like a typical family...go to church, go out to dinner, watch movies, enjoy shopping because our son has difficulty with these things. When we are home we are supposed to spend every waking hour with him- engaging him, playing with him appropriately, redirecting his autistic behaviors, not allowing him to stim for too long... making every single minute educational for him. A typical toddler is learning from people naturally. Noah does not. He does not have any internal desire to look at our actions or faces. He is often in his own little world and we must constantly bring him out of this world and keep him here with us. It is exhausting to be honest with you. But, what is the other option???
So, I look forward to the day where I can say my life isn't controlled by autism- I am not sure when or how this will happen. I am praying for a miracle- I am praying for complete healing for our child. I am praying for recovery. Maybe one day, Autism will be a distant memory... a horribly sad, difficult time we went through. And if for some reason God does not allow full healing or recovery for little Noah, I pray to God that He helps us learn how to live our lives in spite of this diagnosis. I pray that we don't lose ourselves, our dreams, our marriage, our health and finances to this disorder. I don't want to be another statistic. I want to rise above this diagnosis and live life victoriously. This is my prayer.
Our extracurricular activities (pretty much non-existent), our finances (have to be a on a strict budget to pay for all of Noah's therapy), our food choices (can't let Noah watch us eat gluten and dairy foods), our relationships (marriage strained, no time for friends, local family not very supportive).... our days are governed in many ways by autism. We can't just relax like a typical family...go to church, go out to dinner, watch movies, enjoy shopping because our son has difficulty with these things. When we are home we are supposed to spend every waking hour with him- engaging him, playing with him appropriately, redirecting his autistic behaviors, not allowing him to stim for too long... making every single minute educational for him. A typical toddler is learning from people naturally. Noah does not. He does not have any internal desire to look at our actions or faces. He is often in his own little world and we must constantly bring him out of this world and keep him here with us. It is exhausting to be honest with you. But, what is the other option???
So, I look forward to the day where I can say my life isn't controlled by autism- I am not sure when or how this will happen. I am praying for a miracle- I am praying for complete healing for our child. I am praying for recovery. Maybe one day, Autism will be a distant memory... a horribly sad, difficult time we went through. And if for some reason God does not allow full healing or recovery for little Noah, I pray to God that He helps us learn how to live our lives in spite of this diagnosis. I pray that we don't lose ourselves, our dreams, our marriage, our health and finances to this disorder. I don't want to be another statistic. I want to rise above this diagnosis and live life victoriously. This is my prayer.
Thursday, January 10, 2013
I'm having a hard time...
There are days when I feel okay and ready to do what is needed to help Noah.
These last few days... not so much. Grief, sadness, fear and regrets creep up on me and I feel paralyzed.
I have a hard time seeing the regression and difficulties Noah has with learning. We go over the same words and activities every day... over and over and over and over... and some days he gets it, other days he acts like he forgets. He struggles to spit out words... it is painful to watch it. There are days when he zones out and I feel like he leaves us. I don't know how to take him out of this fog he is in.
I want so badly to give him the therapy he needs, the hours he needs.... but I am hindered by finances and no insurance coverage for this therapy. I don't know how we are going to afford this... I really don't. His diet alone is costing a fortune. I leave the grocery store with just a few bags and it is almost $100 a trip. The DAN! doctor consultation visit is almost $700!
It is a fight just to get him help- waiting lists everywhere (for ABA and speech therapy)... 4-6 months of waiting! That is too long when early intervention is key. Then, while you are waiting, no one is willing to train you to do the therapy yourselves. You have to read books and try to figure it out.
And then there is support--- as soon as my friends and family found out about my situation with Noah, many disappeared.... I have never felt so alone in my life. I don't really understand why... maybe they just don't know what to say to me or they think I am too busy to be bothered. It is very hurtful. My sisters... my brother---- where are they? Why haven't they just called to check on me?
A few nights ago I looked at all of Noah's pics since his birth. I noticed that he went from a smiling, interactive, happy child to a child that rarely makes sustained eye contact, zones out and will no longer smile at the camera. The change occurred from 9 months to 12 months. What occurred during this time??? Shots at 9 months and then 3 ear infections with 4 rounds of antibiotics....
So, I am now struggling with regrets and with self blame. Should I have not received the flu vaccine while pregnant? Should I have not had as many ultrasounds? Should I have limited Noah's TV time? Should I have allowed him to be around more children early in life? Should I have not allowed vaccines? Should I have questioned the overuse of antibiotics? Should I have picked up on these changes in Noah and intervened sooner? Would this have changed the course of this disorder and prevented it? I don't really know how not to blame myself for this--- I was supposed to protect him and make sure he was doing okay and I failed.
I know that I will have better days and that I will look back at this time (and this journal entry) and feel differently.... I just don't know how this is going to pan out. I really don't. I want to trust that God is going to handle it... that He is going to provide.... but I don't feel it right now. I don't know why this would happen... especially to little Noah. He is the sweetest little boy and he deserves the best in life.
I am praying for the Lord to give me peace in this storm
These last few days... not so much. Grief, sadness, fear and regrets creep up on me and I feel paralyzed.
I have a hard time seeing the regression and difficulties Noah has with learning. We go over the same words and activities every day... over and over and over and over... and some days he gets it, other days he acts like he forgets. He struggles to spit out words... it is painful to watch it. There are days when he zones out and I feel like he leaves us. I don't know how to take him out of this fog he is in.
I want so badly to give him the therapy he needs, the hours he needs.... but I am hindered by finances and no insurance coverage for this therapy. I don't know how we are going to afford this... I really don't. His diet alone is costing a fortune. I leave the grocery store with just a few bags and it is almost $100 a trip. The DAN! doctor consultation visit is almost $700!
It is a fight just to get him help- waiting lists everywhere (for ABA and speech therapy)... 4-6 months of waiting! That is too long when early intervention is key. Then, while you are waiting, no one is willing to train you to do the therapy yourselves. You have to read books and try to figure it out.
And then there is support--- as soon as my friends and family found out about my situation with Noah, many disappeared.... I have never felt so alone in my life. I don't really understand why... maybe they just don't know what to say to me or they think I am too busy to be bothered. It is very hurtful. My sisters... my brother---- where are they? Why haven't they just called to check on me?
A few nights ago I looked at all of Noah's pics since his birth. I noticed that he went from a smiling, interactive, happy child to a child that rarely makes sustained eye contact, zones out and will no longer smile at the camera. The change occurred from 9 months to 12 months. What occurred during this time??? Shots at 9 months and then 3 ear infections with 4 rounds of antibiotics....
So, I am now struggling with regrets and with self blame. Should I have not received the flu vaccine while pregnant? Should I have not had as many ultrasounds? Should I have limited Noah's TV time? Should I have allowed him to be around more children early in life? Should I have not allowed vaccines? Should I have questioned the overuse of antibiotics? Should I have picked up on these changes in Noah and intervened sooner? Would this have changed the course of this disorder and prevented it? I don't really know how not to blame myself for this--- I was supposed to protect him and make sure he was doing okay and I failed.
I know that I will have better days and that I will look back at this time (and this journal entry) and feel differently.... I just don't know how this is going to pan out. I really don't. I want to trust that God is going to handle it... that He is going to provide.... but I don't feel it right now. I don't know why this would happen... especially to little Noah. He is the sweetest little boy and he deserves the best in life.
I am praying for the Lord to give me peace in this storm
Monday, December 31, 2012
Goodbye 2012! Welcome 2013
This has been THE absolute hardest year of my life. Without a doubt. In addition to selling a house and moving, we watched our only son go inward and eventually get diagnosed with autism. The last 5 months are a blur to me--- fear, anxiety, depression, grief, anger, panic..... questioning God, losing faith, feeling completely alone.... I constantly got in arguments with those people closest to me- I was taking my feelings out on them.
Don't get me wrong, I am still struggling with this new reality we are faced with. But something inside of me has changed. I don't quite know what it is. I just have felt different these last few days. I feel like I am preparing for the fight of my life....for a great battle. But I have a sense of calm and peace in this storm. I have a game plan. I have read and researched til I am blue in the face. I am on multiple waiting lists for ABA therapy. I have an EEG scheduled and a doctor's appointment lined up. I have a Medicaid Waiver application processing. I have an online ABA training program selected while we wait for ABA to start. I have planned a budget just in case we get no financial help. I have started Noah on GFCF diet and have started to add supplements as well. I am choosing to trust God.
I don't know why God has decided to allow this. I just know that He has. I will do everything I can in my power to help Noah and when I have done everything---I have to trust that God will take care of the rest. I am choosing to TRUST. I am choosing to have PEACE. I am choosing to have FAITH in the unseen. I am making the choice every minute. Fear continually creeps up inside of my heart and I have to battle it... I have to constantly choose to TRUST God. He loves Noah much more than I do and He has good things in store for him... and for us.
So I am saying goodbye, farewell to 2012. I am welcoming this coming year of 2013. I am praying for a good year. Full of progress... resources.... help.... support from friends and family.... time with family.... enjoying our little boy..... a year full of learning and growing... a year of TRUSTING God with Noah and with our lives.
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