Yes, as long as the other kids are all needing changes in their diets/lives...why should we leave out Buddy lol! The long of it in short story form: When we went to the dentist last time we found out that Buddy has "tongue thrust" problem. We were recommended to put him in Myofunctional Therapy. After pondering that for 2 months we have decided to get him started on that today. We had a 1 hour initial assessment. Wow, I had no idea about speech/language issues or swallowing issues, etc. Buddy met the classic symptoms for "tongue thrust" problems. Since I had no idea about these things and am finding they are pretty common, I thought I would attempt to share this with you, without embarrassing my son in the mean time.
Before you read on, swallow. Notice where your tongue goes. It is supposed to press against the top of your mouth and not against your teeth. Well, Buddy's tongue doesn't even TOUCH the top of his mouth when he swallows, it only pushes forward against his teeth. That is leading to spaces between his teeth and a deformity with the roof of his mouth that is affecting his breathing and will only increase if not corrected. When a person swallows the food is supposed to go over the tongue, the soft palate at the back of the roof of the mouth is supposed to raise up and the uvala (whatever that sticky down thing is at the back of your throat ) is supposed to move backwards to close off the nasal passage while eating/drinking. Buddy's doesn't even move. That makes is much harder to swallow. In fact, he just puts food in and it goes right down his throat - especially liquids.
Here is the kicker...Buddy is an EXTREMELY picky eater. We found out today that kids with this problem are picky eaters because they simply cannot swallow many textures of food due to the way their mouth is not working properly. We had decided early on that the battle to get him to eat was not worth it. I am now VERY glad that we did not make that a battle because it was far more than a strong will...it is actually a structural problem with swallowing. He has taken a lot of grief over this for the years (and won't even go to camp in the summer due to food issues). We (and amazingly he is too) are very excited that he supposedly will be able to eat more foods soon!
Finally, when one's tongue and mouth is not working properly one does not enunciate as well as one should. We have always complained to Buddy that he is a mumbler. Soon, he should not be mumbling:)
So, for the next 14 - 18 weeks we get to drive to the next down over every week and have him do 30 minutes of swallowing (and other things) therapy. After that will be every 3 weeks, 6 weeks, etc until at the end of a year he will hopefully be cured.
Because life ALWAYS throws us curve balls and every time we think we are treading water something else happens to dunk us again:) It is all good, and it makes me trust and totally rely on God because I certainly can't do any of this in my own power.
Wednesday, October 26, 2011
JJ, Faith, and I join the ranks...
Since we are seeing such promising progress with Grace, we decided that we would have JJ, Faith, and I tested as well to try to get us on track.
Faith has a lot of congestion issues and we have had to have her on the nebulizer a lot due to wheezing and lung issues. She was on allergy shots which we have decided to discontinue at this time. There were some labs of hers that were much worse than Grace's. For example, her sugars are very high as well as her salts. The biochemist said that if she were a 50 y/o woman she may be concerned about heart attack. So, we are now working to minimize sugars and salts and significantly increase fluids. She is also have supplements that are to help her allergy congestion. We'll see how it goes!
JJ also needs many more fluids. We already knew that since he does not like to eat or drink. We are going to need to be creative about how to get the couple of supplements into him, in particular because he is low in several minerals. Overall we are attempting to help him with some digestive enzymes and similar things to want to eat more, digest his food better, and hopefully gain wait and be less congested. The biochemist said that many times people think they are lactose intolerant due to congestion from dairy products, but it is really a calcium deficiency. So, we are adding liquid calcium to his diet and switching him from goat's milk to raw milk.
And, myself. I initially felt quite guilty about spending the money to get tested before the rest of the kids were tested and maintaining. But in talking about it with my husband we decided that I need the energy and mental focus to be able to parent and implement these changes well so I should go ahead now and do it. I was surprised that the labs showed things that I thought I just needed to live with, such as peri menopausal symptoms I've dealt with for 11 years. So, in addition to the fact that I have low blood sugar just like JJ and Grace, labs about my concentration/focus were also poor (I knew that too lol!) I also have toxic levels of Magnesium - probably due to the multivitamin that I take (she does not agree with multi-vitamins anyway). So - I am off of my multi-vitamin. She also had some options for my chronic pain issues and to help the inflammation/pain from my herniated disk. We'll see how that progresses.
So, all of us get to do some changes together. Other than that we all have different needs and need different foods/supplements. I'll get a daily calendar together to make sure everyone is getting what they need when they need it, figure out how to make the teas and other drinks to help get in the minerals/vitamins that we need, and look forward to our re-tests in a month to see our progress! I, in particular, am looking forward to less pain and more energy and focus:) It is much less overwhelming this time around even though we are adding 3 diet changes compared to 1. Hopefully in a month or 2 we will get the other 4 in the family tested and...then be super healthy lol!
Faith has a lot of congestion issues and we have had to have her on the nebulizer a lot due to wheezing and lung issues. She was on allergy shots which we have decided to discontinue at this time. There were some labs of hers that were much worse than Grace's. For example, her sugars are very high as well as her salts. The biochemist said that if she were a 50 y/o woman she may be concerned about heart attack. So, we are now working to minimize sugars and salts and significantly increase fluids. She is also have supplements that are to help her allergy congestion. We'll see how it goes!
JJ also needs many more fluids. We already knew that since he does not like to eat or drink. We are going to need to be creative about how to get the couple of supplements into him, in particular because he is low in several minerals. Overall we are attempting to help him with some digestive enzymes and similar things to want to eat more, digest his food better, and hopefully gain wait and be less congested. The biochemist said that many times people think they are lactose intolerant due to congestion from dairy products, but it is really a calcium deficiency. So, we are adding liquid calcium to his diet and switching him from goat's milk to raw milk.
And, myself. I initially felt quite guilty about spending the money to get tested before the rest of the kids were tested and maintaining. But in talking about it with my husband we decided that I need the energy and mental focus to be able to parent and implement these changes well so I should go ahead now and do it. I was surprised that the labs showed things that I thought I just needed to live with, such as peri menopausal symptoms I've dealt with for 11 years. So, in addition to the fact that I have low blood sugar just like JJ and Grace, labs about my concentration/focus were also poor (I knew that too lol!) I also have toxic levels of Magnesium - probably due to the multivitamin that I take (she does not agree with multi-vitamins anyway). So - I am off of my multi-vitamin. She also had some options for my chronic pain issues and to help the inflammation/pain from my herniated disk. We'll see how that progresses.
So, all of us get to do some changes together. Other than that we all have different needs and need different foods/supplements. I'll get a daily calendar together to make sure everyone is getting what they need when they need it, figure out how to make the teas and other drinks to help get in the minerals/vitamins that we need, and look forward to our re-tests in a month to see our progress! I, in particular, am looking forward to less pain and more energy and focus:) It is much less overwhelming this time around even though we are adding 3 diet changes compared to 1. Hopefully in a month or 2 we will get the other 4 in the family tested and...then be super healthy lol!
Grace's new journey: week 4
Yes, I skipped week 3...for any of you that were wondering:) We just got labs back from a retest on Grace. Many of the labs are significantly improved and the biochemist said that we are doing a great job to move her lab results that quickly. There are two areas that are moving more slowly but they are areas that tend to move slowly. We are still having problems getting...are you ready for this??? enough sugar into her. She is hypoglycemic. Apparently if blood sugars are too low then oxygen doesn't get to the brain properly and it affects concentration/thinking/etc. Who would have thought that a child with ADHD needs more sugar lol! So, we will be adding more juice to her diet. We are already able to back off one of the supplements. Her behavior is probably over all an 8 if we started at a 10, but we did have days where she was a 6. When we have a lot of excitement, fast paced routine, people, going places then she does much more poorly. We have opted that for now we will still do the Ritalin in those situations (I had to take her out of church on Sunday because she was not doing well - I haven't had to do that in a LONG time). We will make sure we give her Ritalin before church for awhile! She is still ornery especially when she doesn't think she is being watched...but part of that is being a strong willed 5 year old:) Overall, in the grand scheme of things, we are pleased with her progress thus far and believe it will only get better.
Wednesday, October 12, 2011
Grace's new journey: week 2
We continue the movement forward eating healthier food and hoping that Grace continues to do well. In the past 10 days we have only given her Ritalin once. We have learned that the supplements and the diet change have improved her behavior to the same place that the Ritalin had. Does that mean that she is optimally where we want her? No. But she wasn't optimal on the medicine either. We believe that she will continue to improve week by week. She is using her words more, pausing before acting more, concentrating on school work better, etc.
But then today happened. Last night her digestion problems came back. Today...back to the "old" behavior. Either we fed her something we should not have or there was a die off of something that needed to die off or...something. I had been wondering if she really was getting better or if I was imagining it as I wanted her to be better so badly...nope...I wasn't imagining it. Today was bad lol! That means she really IS getting better!
This tells us that her diet and digestion process really is the main culprit behind her behavior so we will forge ahead!! The next two days are big for us with picking up very special friends from the airport one day and the rest of the family shopping/playing while I attend a one day conference the other day. I hope this set-back is just for today...and I have faith that it is:)
But then today happened. Last night her digestion problems came back. Today...back to the "old" behavior. Either we fed her something we should not have or there was a die off of something that needed to die off or...something. I had been wondering if she really was getting better or if I was imagining it as I wanted her to be better so badly...nope...I wasn't imagining it. Today was bad lol! That means she really IS getting better!
This tells us that her diet and digestion process really is the main culprit behind her behavior so we will forge ahead!! The next two days are big for us with picking up very special friends from the airport one day and the rest of the family shopping/playing while I attend a one day conference the other day. I hope this set-back is just for today...and I have faith that it is:)
Wednesday, October 5, 2011
Grace's new journey: week 1
Grace has now been on her new diet and supplements for 10 days. She takes 14 pills a day ranging from B6 to liver and kidney cleanses. She takes 2 different "drinks" 2 times a day each. She is absolutely a trooper about it. She drinks the "green drink" which is celery, spinach, asparagus, etc "juiced" up along with pineapple. She thinks that tastes fine. It is the Kidney Tea that she had a hard time with. I tried to give it to her warm with honey to flavor it but it was tough on her (I drank it too...nasty!). I tried it cold with pineapple juice and it is going great. I just want to add here that a dear friend blessed us with a juicer...it has made all the difference in making her drinks:) Thank you!!
So, how is her ADHD behavior? Well, after only 10 days I am surprised to say...noticeably improved! In fact, we are only giving her the ritalin about 1/2 of the time. Things we are noticing:
1) for the first time in her life she is not having diarrhea/loose stools. This may seem a bit gross but for a kid who apparently has never properly digested her food this is a "real" sign that her food is finally getting digested - and thereby actually used by her body! Yay!!
2) This morning she actually ASKED to play with something rather than just get it out and make a huge mess. For her to actually think far enough into the future to ask permission is big. This is happening several times a day.
3) While she used to get disregulated emotionally when upset about something spiraling into a major "incident," she will now actually use her words and say "that makes me feel left out" and allow herself to be comforted/redirected. She will come to us and ask for hugs and love rather than disregulate. This also means noticeably less bullying behavior. I almost can't believe she is the same kid!
4) She is not as famished as she used to be. She still eats plenty of food and we try to feed her at least 6 times a day. However, sometimes she says she is not hungry or won't eat as much. Again, this seems to mean that her body is finally using the food properly and is satiating her hunger.
5) She is much calmer than usual. She can still get worked up in certain situations, but overall if her energy level used to be a "10" she is averaging around an "8" in most situations.
6) I have found her playing for long periods of time, by herself...without wrecking anything! Her concentration and focus are clearly improved.
We hope to have her off of the ritalin completely within a month. We hope this trend continues and her body heals from the inside out rather than just a band aid approach. While I'm sure she will never be as calm as the other kids, we want to be everything that God has intended her to be. After all, if she were sedate she wouldn't be able to change the world...and we are sure God intends for her to be a world changer lol!
So, how is her ADHD behavior? Well, after only 10 days I am surprised to say...noticeably improved! In fact, we are only giving her the ritalin about 1/2 of the time. Things we are noticing:
1) for the first time in her life she is not having diarrhea/loose stools. This may seem a bit gross but for a kid who apparently has never properly digested her food this is a "real" sign that her food is finally getting digested - and thereby actually used by her body! Yay!!
2) This morning she actually ASKED to play with something rather than just get it out and make a huge mess. For her to actually think far enough into the future to ask permission is big. This is happening several times a day.
3) While she used to get disregulated emotionally when upset about something spiraling into a major "incident," she will now actually use her words and say "that makes me feel left out" and allow herself to be comforted/redirected. She will come to us and ask for hugs and love rather than disregulate. This also means noticeably less bullying behavior. I almost can't believe she is the same kid!
4) She is not as famished as she used to be. She still eats plenty of food and we try to feed her at least 6 times a day. However, sometimes she says she is not hungry or won't eat as much. Again, this seems to mean that her body is finally using the food properly and is satiating her hunger.
5) She is much calmer than usual. She can still get worked up in certain situations, but overall if her energy level used to be a "10" she is averaging around an "8" in most situations.
6) I have found her playing for long periods of time, by herself...without wrecking anything! Her concentration and focus are clearly improved.
We hope to have her off of the ritalin completely within a month. We hope this trend continues and her body heals from the inside out rather than just a band aid approach. While I'm sure she will never be as calm as the other kids, we want to be everything that God has intended her to be. After all, if she were sedate she wouldn't be able to change the world...and we are sure God intends for her to be a world changer lol!
Sunday, October 2, 2011
Sudanese meeting:)
Our first formal family picture of all 8 of us:)
The kids:)
We had a very action packed day! We attended a special church service that we do not usually attend. It was very thought provoking...the best kind of church service!!
Then we headed to our capitol city to get family pictures taken. Since it is a 1 1/2 hour drive we don't make this trip often...especially now with all of the kids. We have not had formal family pictures taken since before Grace came to live with us. By the time that Grace was "ours" Superman and Faith had joined the family - so what should the "family" picture look like? Besides...life was so incredibly crazy that first year (has it really stopped???) that dressing up toddlers and driving 1 1/2 hours for formal pictures was totally not in my radar screen lol! Anyway, by the time they were "ours" we talked about getting pictures done but didn't. Then the church directory was getting done so we got a family picture done there...and 2 weeks later we got the call on JJ! God has a sense of humor lol! Anyway, we had fun getting pictures taken and got individual poses of each child too:)
The most significant part of the day was having a meeting with a Sudanese pastor. God ordained a meeting a couple of months ago with a woman who has a ministry to South Sudan with her husband and some members of the Christian Sudanese community. We set up this meeting today to meet him and ask him if he will help us connect the children to the Sudanese culture...yet keep them safe. We have walked a tentative line of knowing the children must be kept safe with us but also wanting them to know their culture. The African American culture is not the same as the Sudanese culture. Their history is not the same. We want them to be able to look in the mirror and be proud of who they are. We want them to look in the mirror and not be afraid. When I asked Superman what he wanted to talk to the pastors about today he answered, "I want them to help me not be afraid when I remember XXXX." This is an important part of their healing.
The pastor was wonderful (the other pastor is currently in South Sudan). He assured us that he would help us keep the kids safe while teaching us about their culture. He recommended a book to help understand the culture. He is also from the same tribe as the children!! We are trusting the God has ordained this meeting and that His will will be done through these connections.
To walk a path not in fear...but to be aware of the danger lurking in the shadows. To know that God is sovereign...but also that evil still permeates this earth.
The kids:)
We had a very action packed day! We attended a special church service that we do not usually attend. It was very thought provoking...the best kind of church service!!
Then we headed to our capitol city to get family pictures taken. Since it is a 1 1/2 hour drive we don't make this trip often...especially now with all of the kids. We have not had formal family pictures taken since before Grace came to live with us. By the time that Grace was "ours" Superman and Faith had joined the family - so what should the "family" picture look like? Besides...life was so incredibly crazy that first year (has it really stopped???) that dressing up toddlers and driving 1 1/2 hours for formal pictures was totally not in my radar screen lol! Anyway, by the time they were "ours" we talked about getting pictures done but didn't. Then the church directory was getting done so we got a family picture done there...and 2 weeks later we got the call on JJ! God has a sense of humor lol! Anyway, we had fun getting pictures taken and got individual poses of each child too:)
The most significant part of the day was having a meeting with a Sudanese pastor. God ordained a meeting a couple of months ago with a woman who has a ministry to South Sudan with her husband and some members of the Christian Sudanese community. We set up this meeting today to meet him and ask him if he will help us connect the children to the Sudanese culture...yet keep them safe. We have walked a tentative line of knowing the children must be kept safe with us but also wanting them to know their culture. The African American culture is not the same as the Sudanese culture. Their history is not the same. We want them to be able to look in the mirror and be proud of who they are. We want them to look in the mirror and not be afraid. When I asked Superman what he wanted to talk to the pastors about today he answered, "I want them to help me not be afraid when I remember XXXX." This is an important part of their healing.
The pastor was wonderful (the other pastor is currently in South Sudan). He assured us that he would help us keep the kids safe while teaching us about their culture. He recommended a book to help understand the culture. He is also from the same tribe as the children!! We are trusting the God has ordained this meeting and that His will will be done through these connections.
To walk a path not in fear...but to be aware of the danger lurking in the shadows. To know that God is sovereign...but also that evil still permeates this earth.
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