We performed another round of blood lab work in June and had a follow up phone appointment with Thoughtful House. In February, Josh's lab work showed his thyroid levels were off (hypothyroidism) and he was very vitamin D deficient. We re-checked those as well as liver and kidney function again so we could decide to start chelation. His thyroid levels are now in normal range, vitamin D is still low, but is at least at the bottom of the normal range now. Normal levels of Vitamin D are 40-100. In February, he was 33 and now is at 40. We want him to be around 80. His liver and kidney functions look good! Whew. I always worry about those from issues I read about kids with metabolic issues. Anyway, our action plan is to keep his thyroid meds as they are. They could use a little optimizing, but it can wait. We did mega-doses of vitamin D for 2 weeks and are now at a high dose. We'll re-check them again in a few months.
We got the green light to start chelation. We did a challenge test in December where we took a sample of Josh's urine as the starting point. He got 1 dose of DMSA, a chelating agent to pull toxic metals out of his body. We collected his urine for the next 6 hours and sent both urine samples off to the lab. They came back with relatively few metals in the pre-challenge test and very high levels in the post-challenge test. For ASD parents (and anyone else interested), I have uploaded his lab results to share. The difference in levels shows us that the DMSA helped his body to get the toxins out and that they are present in high levels in his body. Now that Josh's immune system has settled from the diet change and the yeast in his digestive system was in better check, we decided it was a good time to proceed with chelation.
Our chelation schedule is 3 days on, 11 days off. We have completed four rounds. After the first round, I can't say we saw much difference. The Tuesday after the first rond, he was very chatty all day. In his ABA therapy, they keep track of all his requests and comments (to peers) as part of his daily data. Normally, Josh as roughly 20 requests and 15 comments each day. That Tuesday, he had over 50 of each! After the second round, he has started speaking more complete sentences. The other day, he said, "Look, Mom. I found a waffle." He's been good about commenting to us, but the little words are starting to fill in more often. Before, it would have been more like, "Looka, Mom. Find waffle." He's starting to correct himself on using I/me. Most often, he'll catch himself saying, "Help you." and switch it to "Help me." He has made HUGE headway with potty training, even initiating. I was worried we'd have to schedule train him for years. All in all, he's a little more with it and some of the oddities in his behavior are reduced.
The bad part of chelation has been that it has aggravated Josh's yeast. His doctor warned us about this. I gave it two weeks before calling about it. He put Josh on Nystatin to help battle the yeast. It's helping, but he's not completely clear of it. He's still waking up at night, which is the killer! Kate is sleeping through the night most nights now, except when she is teething, so I'm guilty of just sleeping with Josh. I'm too tired and know I need to break that habit at some point.
We had tried giving Josh S. Boulardi to help with yeast and gut healing, but after two attempts of slowly giving him small quantities, we linked it to severe aggression. He would go into complete meltdown, overload, head banging, unable to control his emotions. It's hard to believe that so little of something like that could do so much to him. I was really upset to say the least. We have taken leaps forward this past year, and seeing behaviors like that take us back to over a year ago behavior-wise. I remember telling God that we'd deal with whatever we needed to with Josh, but begged that He take away the head banging and aggression. When Josh goes into those modes, I am sad and fearful. He is 42" and 43lbs, a big kid. What would life be like if he's like at at 6? 12? 20? I pray every day that won't happen and I am thankful every day for the progress we have made.
So, that's the quick update from here. We are heading to Austin soon for an in-person follow up with Thoughtful House. We're extending our trip a few days to turn this into our summer vacation with the kids. We're staying in a hotel with a full kitchen so I can store all of Josh's food and do any cooking I don't get done before we leave. The kids think it's a treat to stay in a hotel, swim and go to a museum or two, so we'll enjoy them being young and appreciating us making a family vacation on the cheap this year.
Wednesday, August 4, 2010
Wednesday, July 14, 2010
Potty humor
I've been working on my update on Josh's progress. Danny has been working a ton, so my computer time has been more severely limited than normal. So, until I finish, I'll share our potty training humor...
Josh graduated himself to Pull-ups about a month ago. He came home from therapy in some one else's pull-up, decorated in Toy Story characters. Specifically, Buzz Lightyear and Woody. Josh LOVED this pull-up and kept it dry all evening, through the night, and the next morning. He was devastated when he went #2 on it and we had to throw it away. I told him that if we got ready for school quickly, we could buy some on the way. We did and he held one in his hand the whole way there. I told his therapist that no work would be done until he had is new pull-up on. He's slowly progressing, but we're progressing. I'm very optimistic that we'll get him into underwear by the time he's 4.
So, I would like to think that most parents are a little over the top, like I am, when it comes to potty training. Especially, with communication delays, I over-emphasize the state of his diaper. We started by talking with him about just that. "You went pee in your diaper. It is DIRTY." "J, that's a big poopy in your diaper. It is DIRTY." I caught my parents giggling when I changed Josh's diaper and said, "Josh, you have a BIG pee-pee in your diaper." They replied, "Yep, Dad would be proud!"
So, now I catch myself giggling every time I try to talk to him about his diaper. The purpose of the characters on the diaper is so the kid will be upset if they go to the bathroom on the character. "Josh, did you get your Woody wet?" "Josh, Woody is so sad..." No one at Huggies thought of this?!? LOL.
Josh graduated himself to Pull-ups about a month ago. He came home from therapy in some one else's pull-up, decorated in Toy Story characters. Specifically, Buzz Lightyear and Woody. Josh LOVED this pull-up and kept it dry all evening, through the night, and the next morning. He was devastated when he went #2 on it and we had to throw it away. I told him that if we got ready for school quickly, we could buy some on the way. We did and he held one in his hand the whole way there. I told his therapist that no work would be done until he had is new pull-up on. He's slowly progressing, but we're progressing. I'm very optimistic that we'll get him into underwear by the time he's 4.
So, I would like to think that most parents are a little over the top, like I am, when it comes to potty training. Especially, with communication delays, I over-emphasize the state of his diaper. We started by talking with him about just that. "You went pee in your diaper. It is DIRTY." "J, that's a big poopy in your diaper. It is DIRTY." I caught my parents giggling when I changed Josh's diaper and said, "Josh, you have a BIG pee-pee in your diaper." They replied, "Yep, Dad would be proud!"
So, now I catch myself giggling every time I try to talk to him about his diaper. The purpose of the characters on the diaper is so the kid will be upset if they go to the bathroom on the character. "Josh, did you get your Woody wet?" "Josh, Woody is so sad..." No one at Huggies thought of this?!? LOL.
Tuesday, June 8, 2010
Josh's story
One of the nutritionists we have worked with is working on a book. She asked me to write my testimonial of what we've been through with Josh for her to include. I went over the word limit and leave that to the editor to fix. This was a challenge, to sum up where we've come from on this journey, to look backward and remember how he was before things got bad, to remember the darkest days. I also find much joy in how far we've come. We were not functional a year ago and now, we have so much to be thankful for! So, I figured I should get blog credit for writing this all out. Here is what I submitted for her book, in addition to all his lab work (which I will post here in the future as well).
My son, Joshua, is 3 ½ years old. He has been diagnosed with PDD-NOS and is on the autism spectrum. I had a normal pregnancy with no complications besides a sinus infection. Josh was induced at 39 weeks, born a healthy 7 lbs., 15 oz. and handsome with his dark hair and dark eyes! He hit all his milestones the first year, but most on the late side. We struggled with food allergies, wheezing, eczema and sleep apnea during his first year. I was able to control the severity by altering my diet while nursing him and after he was 7 months, he was doing pretty well. During his second year, he started to have ear infections and viruses. Around 18 months, he started to lose his language, eye contact and responsiveness. His frustration level was growing and head-banging, self-injury and severe tantrums ensued. His digestion became irregular and he became chronically constipated. We assumed his self-injury was due to frustrations in language delay and called ECI for a speech assessment. We started speech services at 21 months. A few months later, Josh had another round of ear infections and while on the antibiotics, he went crazy. He cried almost non-stop for days and hit his head severely into the floor and walls. It was terribly upsetting and my pediatrician and I agreed we needed to stop the antibiotics immediately. As the next few months went by, the differences between Josh and his peers at daycare grew. Sensory issues started to develop. Several times a day, Josh would scream, cover his eyes with his hands and run to the corner of the room. We could not drive over speed bumps or railroad tracks without screaming and I avoided driving by loud vehicles as much as I could for him. Josh woke several times a night and seemed to be in pain. Our concerns continued to mount.
At 27 months old, Josh and his big sister welcomed their baby sister to the family. At her 1 week doctor appointment, we spoke with our pediatrician about Josh’s head banging getting worse as well as his lack of sleep. She encouraged us to do metabolic testing, as she had seen many kids with behavioral and sensory issues improve with custom vitamin blends. We performed the lab work and waited weeks for the results. Before they were back, Autism Week received a lot of coverage on television. My husband did some additional reading and shared his concerns that we needed to have Josh evaluated for autism. I made an appointment with our pediatrician and prepared a list of concerns to discuss with her:
Our lab work was available when we went in to address developmental issues with our pediatrician. It showed many abnormalities in his metabolic cycles as well as severe nutrient deficiencies. To this day, I am thankful that our pediatrician put us on the biomedical route for addressing developmental issues in our son rather than pushing us to a diagnosis and working from that angle. We ordered our custom vitamin blend for Josh and researched all we could so we could jump into a plan of action to help him. We started by removing casein from his diet. Josh turned into a monster. My husband described his behaviors as similar to an addict going through detoxification. It was a very rough 10 days, but we turned a corner. Josh began to sleep a little bit better and his head banging was starting to reduce in frequency. It was still frequent, but any improvement was a huge win for us. We followed up next by removing gluten. It wasn’t as marked of a difference as removing casein, but as months went by, we continued to see behavioral improvements. We started occupational, speech and physical therapies every week and ended up enrolling Josh in an ABA therapy program.
A year has passed since we started making dietary changes. We have been so blessed to work with some of the best nutritionists and doctors for our son. They have helped us to get a full evaluation of Josh’s internal health. My 7-year-old can tell me her throat hurts or that she has a headache, but watching my son suffer and not be able to tell me anything about how he feels or where it hurts has been extremely frustrating. We have spent many nights up with him, feeling hopeless as he is visibly uncomfortable, itchy and sometimes in pain. Yeast and bacterial overgrowth in his digestive system have been our biggest battle. We were able to initially control them through medications, but the yeast, in particular, continued to return. With the advice of our DAN doctor, we started Josh on the Specific Carbohydrate Diet 5 months ago to control yeast overgrowth. We work closely with our nutritionist to incrementally add easily digested foods one at a time to watch for food sensitivities and allergies. We had a rough start, but the results have been amazing. After 1 ½ years of abnormal bowel movements, we finally have regular and formed stools! Josh sleeps through the night about 75% of the time and head-banging is a rare occurrence. He has progressed exponentially in his behavior, social, speech, gross motor and fine motor skills. As a family, we are functional again. We can go to the grocery store together. We can go to the museum or a park. He initiates conversations with us and wants to communicate and socialize. Currently, he is developmentally equivalent to a 2 to 2 ½ year old in most areas, and we are so grateful for those strides. We still have a long road ahead of us, but we see great things in store for our son.
The dietary changes we made for Josh have helped our entire family. We are all healthier and have a higher importance on what we eat after seeing what an improvement the foods we eat can make on our bodies. My youngest child is now 15 months old. I was able to detect food intolerances very easily with her while nursing because of all we learned through Josh. By 2 months, I realized she did not tolerate milk either. Once I removed it from my diet, all signs of eczema and wheezing were gone. Of my three children, she is the only to make it through her first year without an ear infection or antibiotics and she’s still going strong. I saw improvements in my digestion and overall health by removing casein from my diet as well as being mostly gluten-free with my son. I lost 65 pounds without a lot of effort. My blood work this year came back better than ever in all areas.
Our priorities have been realigned. We enjoy a lot more of the simple things in life: watching our kids play together, hearing Josh sing a song for the first time, and hearing the coveted “I love you.” We have learned to find happiness and joy in each small milestone. We see parenting in a more selfless way and have such respect for all so many parents are going through to help their kids. Our children are blessings to us and the autism path we are on has changed our lives forever. We will do all we can for our son to reach his potential and are grateful to Faye for her guidance and encouragement along the way. She was quite a light for us at the beginning of our journey and we know she shares in our joy as our family continues to continue recovering Joshua’s health.
My son, Joshua, is 3 ½ years old. He has been diagnosed with PDD-NOS and is on the autism spectrum. I had a normal pregnancy with no complications besides a sinus infection. Josh was induced at 39 weeks, born a healthy 7 lbs., 15 oz. and handsome with his dark hair and dark eyes! He hit all his milestones the first year, but most on the late side. We struggled with food allergies, wheezing, eczema and sleep apnea during his first year. I was able to control the severity by altering my diet while nursing him and after he was 7 months, he was doing pretty well. During his second year, he started to have ear infections and viruses. Around 18 months, he started to lose his language, eye contact and responsiveness. His frustration level was growing and head-banging, self-injury and severe tantrums ensued. His digestion became irregular and he became chronically constipated. We assumed his self-injury was due to frustrations in language delay and called ECI for a speech assessment. We started speech services at 21 months. A few months later, Josh had another round of ear infections and while on the antibiotics, he went crazy. He cried almost non-stop for days and hit his head severely into the floor and walls. It was terribly upsetting and my pediatrician and I agreed we needed to stop the antibiotics immediately. As the next few months went by, the differences between Josh and his peers at daycare grew. Sensory issues started to develop. Several times a day, Josh would scream, cover his eyes with his hands and run to the corner of the room. We could not drive over speed bumps or railroad tracks without screaming and I avoided driving by loud vehicles as much as I could for him. Josh woke several times a night and seemed to be in pain. Our concerns continued to mount.
At 27 months old, Josh and his big sister welcomed their baby sister to the family. At her 1 week doctor appointment, we spoke with our pediatrician about Josh’s head banging getting worse as well as his lack of sleep. She encouraged us to do metabolic testing, as she had seen many kids with behavioral and sensory issues improve with custom vitamin blends. We performed the lab work and waited weeks for the results. Before they were back, Autism Week received a lot of coverage on television. My husband did some additional reading and shared his concerns that we needed to have Josh evaluated for autism. I made an appointment with our pediatrician and prepared a list of concerns to discuss with her:
- Head banging
- Severe tantrums
- Unexplained breakdowns
- Closing his eyes to shut out what is happening around him
- Fascination with things that spin: fans, clocks, helicopters, wheels
- Attachment to blanket and balls
- Resistant to change: food, TV shows, books, riding in a new car
- Toe walking
- Picky eating: never eats rice, pasta, eggs and phases of eliminating meat or dairy
- Speech delay
- Sensitive to loud noises
- W-sitting
Our lab work was available when we went in to address developmental issues with our pediatrician. It showed many abnormalities in his metabolic cycles as well as severe nutrient deficiencies. To this day, I am thankful that our pediatrician put us on the biomedical route for addressing developmental issues in our son rather than pushing us to a diagnosis and working from that angle. We ordered our custom vitamin blend for Josh and researched all we could so we could jump into a plan of action to help him. We started by removing casein from his diet. Josh turned into a monster. My husband described his behaviors as similar to an addict going through detoxification. It was a very rough 10 days, but we turned a corner. Josh began to sleep a little bit better and his head banging was starting to reduce in frequency. It was still frequent, but any improvement was a huge win for us. We followed up next by removing gluten. It wasn’t as marked of a difference as removing casein, but as months went by, we continued to see behavioral improvements. We started occupational, speech and physical therapies every week and ended up enrolling Josh in an ABA therapy program.
A year has passed since we started making dietary changes. We have been so blessed to work with some of the best nutritionists and doctors for our son. They have helped us to get a full evaluation of Josh’s internal health. My 7-year-old can tell me her throat hurts or that she has a headache, but watching my son suffer and not be able to tell me anything about how he feels or where it hurts has been extremely frustrating. We have spent many nights up with him, feeling hopeless as he is visibly uncomfortable, itchy and sometimes in pain. Yeast and bacterial overgrowth in his digestive system have been our biggest battle. We were able to initially control them through medications, but the yeast, in particular, continued to return. With the advice of our DAN doctor, we started Josh on the Specific Carbohydrate Diet 5 months ago to control yeast overgrowth. We work closely with our nutritionist to incrementally add easily digested foods one at a time to watch for food sensitivities and allergies. We had a rough start, but the results have been amazing. After 1 ½ years of abnormal bowel movements, we finally have regular and formed stools! Josh sleeps through the night about 75% of the time and head-banging is a rare occurrence. He has progressed exponentially in his behavior, social, speech, gross motor and fine motor skills. As a family, we are functional again. We can go to the grocery store together. We can go to the museum or a park. He initiates conversations with us and wants to communicate and socialize. Currently, he is developmentally equivalent to a 2 to 2 ½ year old in most areas, and we are so grateful for those strides. We still have a long road ahead of us, but we see great things in store for our son.
The dietary changes we made for Josh have helped our entire family. We are all healthier and have a higher importance on what we eat after seeing what an improvement the foods we eat can make on our bodies. My youngest child is now 15 months old. I was able to detect food intolerances very easily with her while nursing because of all we learned through Josh. By 2 months, I realized she did not tolerate milk either. Once I removed it from my diet, all signs of eczema and wheezing were gone. Of my three children, she is the only to make it through her first year without an ear infection or antibiotics and she’s still going strong. I saw improvements in my digestion and overall health by removing casein from my diet as well as being mostly gluten-free with my son. I lost 65 pounds without a lot of effort. My blood work this year came back better than ever in all areas.
Our priorities have been realigned. We enjoy a lot more of the simple things in life: watching our kids play together, hearing Josh sing a song for the first time, and hearing the coveted “I love you.” We have learned to find happiness and joy in each small milestone. We see parenting in a more selfless way and have such respect for all so many parents are going through to help their kids. Our children are blessings to us and the autism path we are on has changed our lives forever. We will do all we can for our son to reach his potential and are grateful to Faye for her guidance and encouragement along the way. She was quite a light for us at the beginning of our journey and we know she shares in our joy as our family continues to continue recovering Joshua’s health.
Sunday, May 9, 2010
Happy Mother's Day
I can't let Mother's Day go by this year without posting. My perspective on mothers has changed drastically in the last year and mostly, I've grown to further respect and love the mothers I am blessed to know and have in my life. First off, my mom is amazing. She's such a wonderful friend to me and there is no end to her generosity. She always listens to me, is the first to offer a hand, and shares in every joy and pain that I feel. I am so blessed to have her in my life and thank God for her every day.
I also think of my birth mother. For those of you who don't know, I was adopted as an infant. My parents got me on Good Friday, when I was 11 days old. After having 3 children, I further respect the difficult and loving decision she made to give me up for adoption. I do hope that I'll get to meet her some day and let her know myself how much I love her for the love she had for me at such a young age.
I have met many amazing moms in the past year. The therapy center Josh gets his OT, PT and speech services special needs children. It is hard sometimes to see the kids who come in there, each with a parent trying to get help for their child, the majority pushing smiles through the difficulties they are overcoming raising a child with special needs. I am inspired by so many and am a better person for meeting many amazing moms in addition to those I have had by my side for years.
Lastly, and certainly not least, I have grown in love for our Blessed Mother, Mary. As a Catholic, we ask the saints in heaven to pray for us. We read about and celebrate the lives of numerous saints who faced challenges in life, just as we do, and they perservered in faith. Danny has told the kids that the difference between saints and sinners is that when saints fall down, they get back up again. My devotion to Mary has certainly changed in the past year. In praying the rosary, I've always reflected on the life of Jesus in the mysteries of the rosary, but in the last year, I grew to see the life of Jesus through the eyes of Mary. She of all people knows how it hurts to watch your son be hurt unjustly, suffer, and feel helpless. When Josh used to be awake in pain during the night, I know her prayers were with me to help me see compassion for his pain before frustration about my lack of sleep. Who better to pray for us than the mother of Jesus who is in heaven with Him. I look to her for strength through prayer and her loving example of what true motherly love should look like.
Today, I pray for the moms I have known and loved for years and the moms I have met and their stories have stayed with me:
I also think of my birth mother. For those of you who don't know, I was adopted as an infant. My parents got me on Good Friday, when I was 11 days old. After having 3 children, I further respect the difficult and loving decision she made to give me up for adoption. I do hope that I'll get to meet her some day and let her know myself how much I love her for the love she had for me at such a young age.
I have met many amazing moms in the past year. The therapy center Josh gets his OT, PT and speech services special needs children. It is hard sometimes to see the kids who come in there, each with a parent trying to get help for their child, the majority pushing smiles through the difficulties they are overcoming raising a child with special needs. I am inspired by so many and am a better person for meeting many amazing moms in addition to those I have had by my side for years.
Lastly, and certainly not least, I have grown in love for our Blessed Mother, Mary. As a Catholic, we ask the saints in heaven to pray for us. We read about and celebrate the lives of numerous saints who faced challenges in life, just as we do, and they perservered in faith. Danny has told the kids that the difference between saints and sinners is that when saints fall down, they get back up again. My devotion to Mary has certainly changed in the past year. In praying the rosary, I've always reflected on the life of Jesus in the mysteries of the rosary, but in the last year, I grew to see the life of Jesus through the eyes of Mary. She of all people knows how it hurts to watch your son be hurt unjustly, suffer, and feel helpless. When Josh used to be awake in pain during the night, I know her prayers were with me to help me see compassion for his pain before frustration about my lack of sleep. Who better to pray for us than the mother of Jesus who is in heaven with Him. I look to her for strength through prayer and her loving example of what true motherly love should look like.
Today, I pray for the moms I have known and loved for years and the moms I have met and their stories have stayed with me:
- For the moms who make each evening and weekend special time, after working a full day.
- For the moms who lovingly gave up their children for adoption.
- For the moms raising four children, with a joyful smile, making it look easy.
- For the moms who have been down the autism path before me, who gave their time and effort to make our journey easier.
- For the mom whose 3-year-old son overcame cancer, but suffers from developmental delays due to complications during chemotherapy. He is currently wheelchair bound.
- For the mom with 3-year-old twins, a boy and a girl. The girl is working on crawling, eating and talking and wears glasses and a hearing aid. I have never met a mom with such kindness and joy while enduring such difficulty.
- For the mom with 3-year-old twins who delivered prematurely and both have undergone multiple surgeries on their heart and brain. The boy suffers from down's.
- For the mom of a 3-year-old boy with cerebral palsy. He brings me joy each week he comes in for occupational therapy. His mom was told he would never walk, and he walks in each week with a big smile and his mom always says, "God is good."
- For the mom of a sweet 3-year-old girl who is learning to use her new wheelchair. They visit me and Kate each week on their way out of therapy.
- For the mom of a 9-year-old boy who takes him in for therapy each week. She is so kind and compassionate as they visit together in the waiting room.
- For the mom worrying about who will care for her adult child after she passes away.
- For the moms who are always looking for fun adventures to spend quality time with their kids.
- For my college friends who lost their 4th child in her second surgery after birth. She beautifully prepared herself and family to raise a child with spina bifida. I could never imagine burying my child, but she and her husband showed strength in faith.
- For the many autism moms and children with special needsI have met, who are giving of themselves and their lives to help their child.
- For the moms I get out with for pedicures or dinners, and the love, support and laughter we share.
- For all moms who give all they can each day out of love for their children
Thursday, May 6, 2010
Mommy moment
I look in the mirror and scare myself sometimes. I finally have realized I'm closer to not 21, than I am to 21. Then, I add in the circles that have developed below my eyes, and the fine lines around them. I don't know why, but Emma has found it important to tell me lately that I am closer to 40 than 20. Sigh.
Anyway, our mornings are crazy! I cook all the ingredients for Josh each night and have moved my showers to bedtime so I can at least say I am clean each day. When we wake up, I turn on Barney for Josh and Kate while I puree Josh's foods for the day and put blobs of it into the frying pan to make his "pancakes." Danny and I tag team getting everyone fed, packing snacks and lunches for the day, and getting everyone dressed. More often than not, some one requires an extra diaper change. Emma's school starts at 8:00 and Josh has to be at some therapy each day at 8:00, except Fridays. When 7:25 hits, I hurry to brush my teeth and hair and throw on some clothes while Danny loads the kids in the car. The goal is to be driving by 7:30 most days. I've given up on makeup that isn't thrown on in the car when I'm in the drop off line at Josh's school. I think I'd have to introduce myself as Bonnie's sister if I ever showed up to therapy in makeup.
Last week, Josh had an 1 1/2 hour appointment with the allergist. I was throwing on my clothes in my usual fashion. I recently bought a few new tops and saw a black one I didn't recognize. I couldn't remember buying it, but proceeded to put it on rather than the old one I wear weekly. It seemed a little big, but I knew I couldn't credit anymore weight loss since that's come to a hault. I was a block from Emma's school, looking down at my shirt when it dawned on me - I was wearing my black top to my new pajama set! No time to go home. I sat in the allergist's office for almost two hours in my pajama top.
Anyway, our mornings are crazy! I cook all the ingredients for Josh each night and have moved my showers to bedtime so I can at least say I am clean each day. When we wake up, I turn on Barney for Josh and Kate while I puree Josh's foods for the day and put blobs of it into the frying pan to make his "pancakes." Danny and I tag team getting everyone fed, packing snacks and lunches for the day, and getting everyone dressed. More often than not, some one requires an extra diaper change. Emma's school starts at 8:00 and Josh has to be at some therapy each day at 8:00, except Fridays. When 7:25 hits, I hurry to brush my teeth and hair and throw on some clothes while Danny loads the kids in the car. The goal is to be driving by 7:30 most days. I've given up on makeup that isn't thrown on in the car when I'm in the drop off line at Josh's school. I think I'd have to introduce myself as Bonnie's sister if I ever showed up to therapy in makeup.
Last week, Josh had an 1 1/2 hour appointment with the allergist. I was throwing on my clothes in my usual fashion. I recently bought a few new tops and saw a black one I didn't recognize. I couldn't remember buying it, but proceeded to put it on rather than the old one I wear weekly. It seemed a little big, but I knew I couldn't credit anymore weight loss since that's come to a hault. I was a block from Emma's school, looking down at my shirt when it dawned on me - I was wearing my black top to my new pajama set! No time to go home. I sat in the allergist's office for almost two hours in my pajama top.
Friday, April 30, 2010
Josh health and diet update
Thank you for your prayers for Josh! He is doing very well on the new diet now and we are going to continue moving forward with it. We had a rough start since he was not tolerating a lot of the introductory foods, but he’s now stabilized and digesting his diet of meat (restricted portions), pears, carrots, green beans, spinach, zucchini, butternut squash and avocado. We rotate out his meat so he does not have the same meat more often than every four days and in the coming weeks, we will get his fruits and veggies on a 3 day rotation. The rotation helps keep him from developing new allergies and intolerances since his immune system is prone to that. The meats I feed him are beef, chicken, turkey, lamb, pork and buffalo. Each day, I puree about a pound of meat with 7-8 cups of vegetables. I spoon the mixture onto a frying pan with a little oil and bake them into little “pancakes.” Josh will only eat them with a little browning, but he’s happy to have them each day. I serve them with boiled pears or pear sauce (home-made) and ½ an avocado. I also offer broth made from boiling the meat with vegetables. The broth is very healing to the gut. He is finally consuming some broth, but only because I put a little meat in the bottom for him to dig out and he ends up drinking a lot of the broth. It sounds like I am torturing him, but he is very happy with this new routine. I know he must feel better because he doesn’t ask for ANY of his old foods anymore. What three-year-old would be content to go to a birthday and kindly agree that they will not eat cake because it hurts their tummy? Well, it must hurt for him to agree. Anyway, it’s a lot of work to boil all these foods each day, but we’re finally getting into a groove and are happy with what we are seeing.
Josh is steadily progressing through his ABA programs. He is learning several adjectives like rough/smooth, hard/soft, big/little, hot/cold, etc.. He is learning his prepositions and continuing to work on classifying and grouping objects, utilizing them to learn WH questions. He has mastered “where” and ‘what” questions and is working on “why” questions. He struggles with the more abstract ideas like big and little and the “why” questions. He cannot understand that he is little next to Mommy, but big when he is next to Kate. He is frequently pointing at things and asking if they are big or little. I think it is interesting how his therapists teach “why” questions. Josh has been classifying objects into groups, identifying what things have in common, then working on negations, what doesn’t belong. They are now using those scenarios to ask why something doesn’t belong. For example, they will place out several cards of animals and a shirt. They will ask which does NOT belong and he will pick the shirt. Then, they ask why it doesn’t belong. He is supposed to say because it is not an animal. He is struggling with this and very frustrated that he can’t figure out what they want him to do, but he’s working hard and finally getting a few right.
At the beginning of the SCD diet change, we also ran a panel of blood work on Josh to check his IGE food allergies, liver function, mineral levels and the basic CBC testing. Our goal was to re-check nut allergies since they are a part of the later phases of SCD, and we wanted to check his liver function before we planned on doing chelation (protocol to remove toxic metals from his body). I already mentioned him being allergic to every nut you can name. We’ll continue to work with his nutritionist to create a custom diet plan. His liver checked out fine, but his thyroid levels were off and he has hypothyroidism, under-functioning thyroid. We started him on thyroid medication about 6 weeks ago and saw big gains with that as well. We decided to wait on chelating until late spring or early summer. The SCD protocol has rocked his body, but I think we rid his digestive system of a lot of bad yeast and bacteria. We have seen huge gains in language, cognition, gross and fine motor skills, social skills, AND with great excitement, I report that he sleeps through the night over 75% of the time now!!!! His bowel movements are consistently normal. That sounds gross, but it is such a relief since that is our biggest indication of how his stomach feels and to know he is properly digesting foods. It’s been a LONG time since we have seen normal diapers out of him.
Also, we actually have potty training news to discuss – a topic I didn’t imagine I would be writing about in a positive light. I attended a toilet training class for special needs the end of January. We had been trying to work with Josh on recognizing if his diaper was clean or dirty and going through the process of sitting on the potty. He used to only sit on the baby potty and I dreaded the day he actually peed on it because he was too big for there to be a chance of it going in! He was afraid of the big potty for a long time, but with the assistance of super big sister, Emma, we had him at least sitting on it. I took the training class on a Friday and by chance, the first time he actually peed on the potty was that weekend. He was so excited that he figured out what we wanted him to do! In the months since, we have moved all diaper changes to the bathroom and when we catch him going to the corner to do his business, we direct him to the bathroom. We had a roadblock when we were a few weeks into the diet changes, as it caused excessive urination. The volume was incredible and double diapering him didn’t prevent us from having to change the sheets at 3:00 AM. That has passed, for the most part, and we progressed to getting him to the potty before his usual corner times and eventually he started pooping on the potty too! We’re not close enough to go to underwear, but are very encouraged that we are progressing. He has even initiated going on his own twice in the last week. Woo hoo! I am praying we get him out of diapers before Kate is. :)
Thanks again for the prayers! We had an appointment with his nutritionist last week and at this point in time, we passed the hurdles that made us consider the elemental formula diet. Thank God! Next set of foods, here we come!
Picture of the week: Josh wanted to wear Emma's soccer jersey. I told him to ask her and she let him. Emma asked me, "Mom, do you think Josh will be a tom girl?"
Josh is steadily progressing through his ABA programs. He is learning several adjectives like rough/smooth, hard/soft, big/little, hot/cold, etc.. He is learning his prepositions and continuing to work on classifying and grouping objects, utilizing them to learn WH questions. He has mastered “where” and ‘what” questions and is working on “why” questions. He struggles with the more abstract ideas like big and little and the “why” questions. He cannot understand that he is little next to Mommy, but big when he is next to Kate. He is frequently pointing at things and asking if they are big or little. I think it is interesting how his therapists teach “why” questions. Josh has been classifying objects into groups, identifying what things have in common, then working on negations, what doesn’t belong. They are now using those scenarios to ask why something doesn’t belong. For example, they will place out several cards of animals and a shirt. They will ask which does NOT belong and he will pick the shirt. Then, they ask why it doesn’t belong. He is supposed to say because it is not an animal. He is struggling with this and very frustrated that he can’t figure out what they want him to do, but he’s working hard and finally getting a few right.
At the beginning of the SCD diet change, we also ran a panel of blood work on Josh to check his IGE food allergies, liver function, mineral levels and the basic CBC testing. Our goal was to re-check nut allergies since they are a part of the later phases of SCD, and we wanted to check his liver function before we planned on doing chelation (protocol to remove toxic metals from his body). I already mentioned him being allergic to every nut you can name. We’ll continue to work with his nutritionist to create a custom diet plan. His liver checked out fine, but his thyroid levels were off and he has hypothyroidism, under-functioning thyroid. We started him on thyroid medication about 6 weeks ago and saw big gains with that as well. We decided to wait on chelating until late spring or early summer. The SCD protocol has rocked his body, but I think we rid his digestive system of a lot of bad yeast and bacteria. We have seen huge gains in language, cognition, gross and fine motor skills, social skills, AND with great excitement, I report that he sleeps through the night over 75% of the time now!!!! His bowel movements are consistently normal. That sounds gross, but it is such a relief since that is our biggest indication of how his stomach feels and to know he is properly digesting foods. It’s been a LONG time since we have seen normal diapers out of him.
Also, we actually have potty training news to discuss – a topic I didn’t imagine I would be writing about in a positive light. I attended a toilet training class for special needs the end of January. We had been trying to work with Josh on recognizing if his diaper was clean or dirty and going through the process of sitting on the potty. He used to only sit on the baby potty and I dreaded the day he actually peed on it because he was too big for there to be a chance of it going in! He was afraid of the big potty for a long time, but with the assistance of super big sister, Emma, we had him at least sitting on it. I took the training class on a Friday and by chance, the first time he actually peed on the potty was that weekend. He was so excited that he figured out what we wanted him to do! In the months since, we have moved all diaper changes to the bathroom and when we catch him going to the corner to do his business, we direct him to the bathroom. We had a roadblock when we were a few weeks into the diet changes, as it caused excessive urination. The volume was incredible and double diapering him didn’t prevent us from having to change the sheets at 3:00 AM. That has passed, for the most part, and we progressed to getting him to the potty before his usual corner times and eventually he started pooping on the potty too! We’re not close enough to go to underwear, but are very encouraged that we are progressing. He has even initiated going on his own twice in the last week. Woo hoo! I am praying we get him out of diapers before Kate is. :)
Thanks again for the prayers! We had an appointment with his nutritionist last week and at this point in time, we passed the hurdles that made us consider the elemental formula diet. Thank God! Next set of foods, here we come!
Picture of the week: Josh wanted to wear Emma's soccer jersey. I told him to ask her and she let him. Emma asked me, "Mom, do you think Josh will be a tom girl?"
Saturday, April 24, 2010
Happy Birthday, Kate!
I can't believe Kate has turned 1! She has been such a blessing to our family on so many levels. We named her Katelyn Grace for all the graces we have received since we learned she'd be joining our family. Kate was planned by God, not us. Several months before we found out I was pregnant, Danny received a promotion at work. It came with a really good raise and I remember praying that God would help us to use the money how He wanted us to. I looked into working part-time and that wasn't feasible. We put an offer on another house. That didn't work out. So, God made it clear to us. It was July 1, 2008 when I came home at lunch and took a pregnancy test and learned she was on the way. We started saving up so I could quit working after she was born. It was August, 2008 when we started working with ECI for Josh. There was no doubt I needed to quit working by the time Kate was born. She's my buddy on the run all the time. She spends hours in the car with me, waits in therapy waiting rooms and loves to grocery shop. She gives me reason to smile throughout the day when it's just the two of us and I'd be lonely without her.
Kate has a sweet demeanor about her, yet she's very insistent on exploring and pursuing what is on her mind. She is an observer, then tries out what she watches without looking back. Of the three kids, she is definitely the most verbal, which says a lot after Emma. Kate says all of our names, is very quick to say no when I offer food she doesn't want, and loves to be in the middle of whatever Emma and Josh are doing. She keeps my days interesting and when she is quiet for too long, I better find out what she's doing quickly! (See below.)
Thank you, God, for our precious baby girl. You are all good and we are thankful for the graces received through our sweet Katelyn Grace. Amen.
Kate has a sweet demeanor about her, yet she's very insistent on exploring and pursuing what is on her mind. She is an observer, then tries out what she watches without looking back. Of the three kids, she is definitely the most verbal, which says a lot after Emma. Kate says all of our names, is very quick to say no when I offer food she doesn't want, and loves to be in the middle of whatever Emma and Josh are doing. She keeps my days interesting and when she is quiet for too long, I better find out what she's doing quickly! (See below.)
Thank you, God, for our precious baby girl. You are all good and we are thankful for the graces received through our sweet Katelyn Grace. Amen.
Subscribe to:
Posts (Atom)
