Megan has been struggling since December 5th with some symptoms that we couldn't pinpoint their cause. On Tuesday, December 23rd her doctor determined what was going on. It is likely that she has been dealing with this for more than a year. It is a very serious condition, but it is treatable. She started treatment on Tuesday evening and began showing improvement on Thursday morning. The treatment protocol lasts 3 weeks and then she will be tested again to ensure that she is completely healed. We are looking forward to all of the changes getting rid of this condition will bring.
Megan had an amazing Christmas. She loved her vanity/beauty parlor. She sat and played at it for so long and loves having it in her room to play with now. She did well with opening gifts, even grabbing the next one and going at it sometimes. It was so fun watching her enjoy herself and her new toys.
Saturday, December 26, 2015
Sunday, December 6, 2015
Stickers, ganny's house and christmas lights
Yesterday the kids and I decorated an advent calendar with stickers. Megan has never cared much about stickers and even when she was interested she would take one and put it on someone's shirt and she was done. Well yesterday she decorated her side of the box with several stickers and she enjoyed doing it.
This afternoon we went to granny's house and Megan explored the house and was comfortable and at ease. She kept walking up to the table and climbing into a chair and putting her arms on the table. She loved the fact that the chairs were the right height for her.
We took in some Christmas lights on the way home from granny's house. Last year Megan was unhappy any time we tried to look at lights but tonight she actually clapped for some of the houses.
This afternoon we went to granny's house and Megan explored the house and was comfortable and at ease. She kept walking up to the table and climbing into a chair and putting her arms on the table. She loved the fact that the chairs were the right height for her.
We took in some Christmas lights on the way home from granny's house. Last year Megan was unhappy any time we tried to look at lights but tonight she actually clapped for some of the houses.
Saturday, December 5, 2015
An amazing day at the zoo
We went to the zoo this morning with my mom. We have taken Megan to the zoo two other times and both times she had no interest in the animals, she was anxious and agitated most of the time and she didn't last more than about 40 minutes with most of that time spent on the carousel and train.
This time couldn't have been more different. We spent a little over 2 hours at the zoo and only left because she was starting to get tired. She not only looked at the animals, she enjoyed them. She was excited and happy. She LOVED the penguins especially.
She really enjoyed getting to walk around by herself when we were in places that it was safe to let her go. She also enjoyed the picnic at the end of the morning. We still did the carousel and train but because both kids enjoy them not because it was the only thing she was interested in doing.
I can't imagine how it could've gone any better.
This time couldn't have been more different. We spent a little over 2 hours at the zoo and only left because she was starting to get tired. She not only looked at the animals, she enjoyed them. She was excited and happy. She LOVED the penguins especially.
She really enjoyed getting to walk around by herself when we were in places that it was safe to let her go. She also enjoyed the picnic at the end of the morning. We still did the carousel and train but because both kids enjoy them not because it was the only thing she was interested in doing.
I can't imagine how it could've gone any better.
Thursday, December 3, 2015
Tea Party for 3
Yesterday afternoon Sam, Megan and I were playing together. I had Sam get her tea set out. She has played with it with Will or I in the past with a lot of direction and a lot of not using it as a tea set.
Yesterday she poured me tea and gave me refills each time I drank it (something she has done before); then she held a cup in one hand, filled it from the pot using her other hand and then drank it. This was new. She did this several times, taking breaks to fill my cup (Sam was on his own, she did not want to give him any tea. He didn't mind he kept adding sugar to his cup and stirring it). It was so much fun to actually have a little tea party with her without me having to tell her what to do with each step. She was playing with me and it was amazing.
Yesterday she poured me tea and gave me refills each time I drank it (something she has done before); then she held a cup in one hand, filled it from the pot using her other hand and then drank it. This was new. She did this several times, taking breaks to fill my cup (Sam was on his own, she did not want to give him any tea. He didn't mind he kept adding sugar to his cup and stirring it). It was so much fun to actually have a little tea party with her without me having to tell her what to do with each step. She was playing with me and it was amazing.
Wednesday, December 2, 2015
Great days
Megan has been doing really great. She is happy and feeling good. Her hair and skin even look great, not that we thought they looked bad before but the difference is clearly there.
She is asking to go upstairs when she is tired and/or climbing the stairs when told it is time without any fussing. She isn't even crying if I go into her room during nap and then leave again.
She is playing games with Sam without getting upset when he doesn't do things her way. If he runs a different direction than she wanted or runs too fast for her to reach him she just laughs about it instead of hitting herself.
Two days ago they were playing chase between her bedroom and the playroom and at one point Sam hid in the playroom. When she got to the playroom she looked perplexed, looked around the room a little bit trying to figure out what happened to him and then when he jumped up she giggled and clapped and did a happy dance. Sam then ran into her room and hid and when she got in there she actually walked around the room and eventually found him on her own. That was the first time she has played hide and seek.
She is asking to go upstairs when she is tired and/or climbing the stairs when told it is time without any fussing. She isn't even crying if I go into her room during nap and then leave again.
She is playing games with Sam without getting upset when he doesn't do things her way. If he runs a different direction than she wanted or runs too fast for her to reach him she just laughs about it instead of hitting herself.
Two days ago they were playing chase between her bedroom and the playroom and at one point Sam hid in the playroom. When she got to the playroom she looked perplexed, looked around the room a little bit trying to figure out what happened to him and then when he jumped up she giggled and clapped and did a happy dance. Sam then ran into her room and hid and when she got in there she actually walked around the room and eventually found him on her own. That was the first time she has played hide and seek.
Monday, November 16, 2015
Beef, its no longer what's for dinner
A couple of weeks ago Megan's sinuses were blocked enough that she was having to breathe through her mouth. Anytime this happens she doesn't want to eat anything that requires a lot of chewing so she eats her cereal for dinner.
About day 4 of her eating mostly cereal all day I noticed a few changes in her. Some of her prominent digestive issues were gone; she was suddenly doing several things (on her own, without instruction) that I had tried to teach her over the past several months; she responded to explanations even to the point of no longer "going crazy" at bedtime.
Megan typically has a minimum of 4 servings of beef a week because she LOVES it and because she has had iron issues in the past. Eating just cereal for several days meant that she wasn't eating any beef, that was the only significant difference in her diet. We decided to keep holding off on the beef for a few more days to see how it went and it was worth it.
About a week later she saw her functional neurologist. The first part of the appointment is always about what gains/issues/etc I have seen since her last visit so I told him we accidentally stumbled onto something amazing. He made a note of it and the changes we had seen and then started working with Megan. About halfway through the appointment he stopped, said "wow" several times and then said "if you hadn't told me about the beef I would be asking you what changed because she is a different kid. She is 100% here, she is present, her body is responding to every single thing I try with her, her eyes are working together, her tone is amazing, she is taking in and comprehending everything I tell her to do..... DON'T FEED HER BEEF AGAIN; and is there anything else you think she might be reacting to that you can stop?". That last part made me laugh, we didn't know she was reacting to the beef.
The "fog" has lifted and Megan is completely present. It is very exciting to watch her respond to everything.
We had her tested for several holiday baking items and beef. She passed everything but failed the beef. It is always nice to get confirmation that the testing accurately reflects what is going on with her body.
About day 4 of her eating mostly cereal all day I noticed a few changes in her. Some of her prominent digestive issues were gone; she was suddenly doing several things (on her own, without instruction) that I had tried to teach her over the past several months; she responded to explanations even to the point of no longer "going crazy" at bedtime.
Megan typically has a minimum of 4 servings of beef a week because she LOVES it and because she has had iron issues in the past. Eating just cereal for several days meant that she wasn't eating any beef, that was the only significant difference in her diet. We decided to keep holding off on the beef for a few more days to see how it went and it was worth it.
About a week later she saw her functional neurologist. The first part of the appointment is always about what gains/issues/etc I have seen since her last visit so I told him we accidentally stumbled onto something amazing. He made a note of it and the changes we had seen and then started working with Megan. About halfway through the appointment he stopped, said "wow" several times and then said "if you hadn't told me about the beef I would be asking you what changed because she is a different kid. She is 100% here, she is present, her body is responding to every single thing I try with her, her eyes are working together, her tone is amazing, she is taking in and comprehending everything I tell her to do..... DON'T FEED HER BEEF AGAIN; and is there anything else you think she might be reacting to that you can stop?". That last part made me laugh, we didn't know she was reacting to the beef.
The "fog" has lifted and Megan is completely present. It is very exciting to watch her respond to everything.
We had her tested for several holiday baking items and beef. She passed everything but failed the beef. It is always nice to get confirmation that the testing accurately reflects what is going on with her body.
Thursday, October 29, 2015
10 months of catchup
Megan had a rough few months.
Megan wasn't able to handle any of the supplements we gave her despite being in desperate need. We eventually switched doctors and the new one immediately knew what was going on. She said that anytime she has come across a kid who couldn't handle their supplements it was because their body wasn't able to detox. She referred us to another doctor and together we started working on detoxing Megan's liver and kidneys. This is when things went south for her.
We pulled her out of school in March to start a Sonrise program with her. I was able to run the program with her for a few weeks and she responded amazingly well. She was giving eye contact, saying new sounds/words, cooperating, etc.
Once the detox started I could no longer work with her on the program because she wasn't in a position to do it. Over the next few months I was only able to spend 10-15 minutes once or twice a month working the program with her because of her response to the detox.
Thankfully overnight (literally) she turned the corner and started getting better. She is doing really well right now, though we still have small setbacks every 2-3 weeks for about 2-3 days each time.
She turned 6 since my last update and has grown a little as well. In the last few weeks we have added a functional neurologist to Megan's team and he has been getting amazing results.
Megan is stronger, more balanced, calmer and happier than ever on a more consistent basis. There are still some areas where improvement is needed and we are working on how to address them.
Some of the things that have changed with her over the past few months:
Megan wasn't able to handle any of the supplements we gave her despite being in desperate need. We eventually switched doctors and the new one immediately knew what was going on. She said that anytime she has come across a kid who couldn't handle their supplements it was because their body wasn't able to detox. She referred us to another doctor and together we started working on detoxing Megan's liver and kidneys. This is when things went south for her.
We pulled her out of school in March to start a Sonrise program with her. I was able to run the program with her for a few weeks and she responded amazingly well. She was giving eye contact, saying new sounds/words, cooperating, etc.
Once the detox started I could no longer work with her on the program because she wasn't in a position to do it. Over the next few months I was only able to spend 10-15 minutes once or twice a month working the program with her because of her response to the detox.
Thankfully overnight (literally) she turned the corner and started getting better. She is doing really well right now, though we still have small setbacks every 2-3 weeks for about 2-3 days each time.
She turned 6 since my last update and has grown a little as well. In the last few weeks we have added a functional neurologist to Megan's team and he has been getting amazing results.
Megan is stronger, more balanced, calmer and happier than ever on a more consistent basis. There are still some areas where improvement is needed and we are working on how to address them.
Some of the things that have changed with her over the past few months:
- no longer needs orthotics
- her gait is now where it should be
- she is following requests, instructions, etc the first time, most of the time
- setback days not included she is no longer injuring herself during the day
- her sleep has improved to waking up 2-3 times a night for 30-60 minutes a time
- her anxiety about things has decreased to the point that she will just walk away while controlling her reaction instead of completely losing it, unable to calm down
- she can swing on the regular swing ALL BY HERSELF
I am sure there are many more that I am missing.
Tuesday, January 13, 2015
Back to school and sleep update
Megan went back to school for a few days last week and then again today. She had a great day last Thursday but didn't go on Friday because she didn't sleep well and was struggling. She didn't go yesterday because it was a very rough day as well. Will said she was really struggling when her bath started and about halfway through she changed - calmed down and started acting like herself again.
She was up again last night for 3 1/2 hours which is better than last week but still not great. She did not sleep in to make up for the loss of time but she woke up happy and didn't nap. Her teacher said that she did okay today but that she wouldn't work on tasks she just kept shaking her head no. LOVE. I love that she was standing up for herself.
She continues to be very "chatty" and interactive. I have been working with her in spurts when I can after school. Yesterday and today I was able to spend a good 20-30 minutes with her. Both times it has been an "accidental" situation that I was able to take advantage of. Yesterday it was playing with a hangar on her closet doorknob and today it was the radio and lamp on my night stand.
I was able to get her to make eye contact, repeat the words "on, light, more" on request, as well as getting her to attempt new words. Repeating words is awesome and something that is a recent ability because of the new technique; attempting new words, difficult words that start with "g, h, f, ph" was HUGE!
She was up again last night for 3 1/2 hours which is better than last week but still not great. She did not sleep in to make up for the loss of time but she woke up happy and didn't nap. Her teacher said that she did okay today but that she wouldn't work on tasks she just kept shaking her head no. LOVE. I love that she was standing up for herself.
She continues to be very "chatty" and interactive. I have been working with her in spurts when I can after school. Yesterday and today I was able to spend a good 20-30 minutes with her. Both times it has been an "accidental" situation that I was able to take advantage of. Yesterday it was playing with a hangar on her closet doorknob and today it was the radio and lamp on my night stand.
I was able to get her to make eye contact, repeat the words "on, light, more" on request, as well as getting her to attempt new words. Repeating words is awesome and something that is a recent ability because of the new technique; attempting new words, difficult words that start with "g, h, f, ph" was HUGE!
Wednesday, January 7, 2015
Sleep is getting better
So after reviewing everything again we decided Megan's "gluten detox" was way too similar to a reaction so we dug deeper in our investigation of her new bread and it turns out she was in a full-blown reaction. One of the grains in her bread actually turns into salicylates when it is digested! Unbelievable! We were seriously overdosing her.
Yesterday was the first day without any of the bread and she did better last night. She was awake for 4.5 hours and slept in until she had gotten 8.5 total hours of sleep. This is huge progress from the previous night.
Despite the lack of sleep she continued to do really well during the day. She has been saying new words, playing by herself, asking to have her picture taken and laughing. She has been playing with Sam more and more and just doing really well. It is very obvious that her body was struggling to digest the gluten and she feels so much better when she is not eating it. I can't wait to see how she feels when it is finally all out of her body.
Yesterday was the first day without any of the bread and she did better last night. She was awake for 4.5 hours and slept in until she had gotten 8.5 total hours of sleep. This is huge progress from the previous night.
Despite the lack of sleep she continued to do really well during the day. She has been saying new words, playing by herself, asking to have her picture taken and laughing. She has been playing with Sam more and more and just doing really well. It is very obvious that her body was struggling to digest the gluten and she feels so much better when she is not eating it. I can't wait to see how she feels when it is finally all out of her body.
Monday, January 5, 2015
Detox is no fun
Megan is progressively sleeping less and less each night. She had been awake for 5-6 hours and getting a total of 7 or 8 hours of sleep until last night. She also completely stopped napping, at the same time.
Last night she slept for 3 hours, was awake for 5 hours, slept for 2 hours, was awake for 1 1/2 hours and then slept for 2 1/2 hours. UGH! It is nap time and she is NOT sleeping again (at least not yet, there is still hope for today).
This is either the gluten detox ramping up or possibly she is having issues with the gluten-free bread we are giving her and it is snowballing out of control. Based on how quickly this appeared, including the lack of a nap, I tend to believe it is detox.
Last night she slept for 3 hours, was awake for 5 hours, slept for 2 hours, was awake for 1 1/2 hours and then slept for 2 1/2 hours. UGH! It is nap time and she is NOT sleeping again (at least not yet, there is still hope for today).
This is either the gluten detox ramping up or possibly she is having issues with the gluten-free bread we are giving her and it is snowballing out of control. Based on how quickly this appeared, including the lack of a nap, I tend to believe it is detox.
Friday, January 2, 2015
Gluten-free progress - eyes! voice! attention!
Megan has been gluten-free for 4 days now, counting today. This afternoon when I got her up from nap something wonderful happened again. She looked me straight in the eyes and her eyes were aligned without her glasses on. In the 10-15 minutes we were in her room she maintained eye contact with me about 40% of the time, at least; and her eyes were in perfect alignment the entire time.
She had a clarity about her eyes - they seemed extremely connected to me.
We got this same results when we started her on the first enzyme a few months ago and it stayed around until we had to stop it for her testing; and for some reason it didn't return when we started it again after the testing.
She is verbalizing a ton today. She is approximating words on a consistent basis - just chiming in to say a word while we are talking to her.
Yesterday we had family over to play games and have dinner. We were playing games during nap time so when Megan got up there were several people sitting around the dining room table. Megan walked over to the table and climbed into an empty chair. She sat there and just listened to the conversation, watching each person as they talked. Every once in a while she would comment on something someone said by pointing to them and babbling/grunting in their direction. At one point they were playing with her new hot potato, throwing it around the table and she played with them; throwing it to something after it had been thrown to her. Eventually it was more fun to throw it over her shoulder away from everyone. It was awesome to see her interested in what was going on and participating when she could.
She had a clarity about her eyes - they seemed extremely connected to me.
We got this same results when we started her on the first enzyme a few months ago and it stayed around until we had to stop it for her testing; and for some reason it didn't return when we started it again after the testing.
She is verbalizing a ton today. She is approximating words on a consistent basis - just chiming in to say a word while we are talking to her.
Yesterday we had family over to play games and have dinner. We were playing games during nap time so when Megan got up there were several people sitting around the dining room table. Megan walked over to the table and climbed into an empty chair. She sat there and just listened to the conversation, watching each person as they talked. Every once in a while she would comment on something someone said by pointing to them and babbling/grunting in their direction. At one point they were playing with her new hot potato, throwing it around the table and she played with them; throwing it to something after it had been thrown to her. Eventually it was more fun to throw it over her shoulder away from everyone. It was awesome to see her interested in what was going on and participating when she could.
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