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.
Wednesday, December 31, 2014
Catching up and closing out 2014
Megan had a cold for 13 days in December - the last week of school and the week of Christmas. She didn't feel like herself again until the Monday after Christmas. She handled being sick really well and was even up for playing by herself for small amounts of time each day - which is not something she is normally up for doing.
We saw a loss of most of her new skills during the time when she was sick - not much eye contact, not much verbalizing, etc. But with each day that she has felt better everything has returned and she has made progress each day.
She is very attentive right now - paying attention to what people around her are doing. She is verbalizing really well and using new approximations for words we hadn't heard before. She is repeating the words she had been saying previously on request. She is compliant with requests again meaning she will do what we ask her "get that book and take it to daddy; go find "x"; etc".
The eye contact that we had lost again is back as well. She is doing really well again.
Megan enjoyed Christmas this year. She comprehended the gifts and was able to happily open them. She did well with facetiming with her grandparents so they could watch her open her gifts - each time she wanted to go grab the iPad we just handed her another gift and she was good to go.
Megan went gluten-free 12/30/14. This time around we were prepared for the withdrawal/detox symptoms and they showed up right on time on night 2. She has had the same symptoms every time we have tried to go gluten free and we stopped thinking she was reacting to something in the new bread. It only took 4 tries for us realize that it was detox/withdrawal symptoms.
We saw a loss of most of her new skills during the time when she was sick - not much eye contact, not much verbalizing, etc. But with each day that she has felt better everything has returned and she has made progress each day.
She is very attentive right now - paying attention to what people around her are doing. She is verbalizing really well and using new approximations for words we hadn't heard before. She is repeating the words she had been saying previously on request. She is compliant with requests again meaning she will do what we ask her "get that book and take it to daddy; go find "x"; etc".
The eye contact that we had lost again is back as well. She is doing really well again.
Megan enjoyed Christmas this year. She comprehended the gifts and was able to happily open them. She did well with facetiming with her grandparents so they could watch her open her gifts - each time she wanted to go grab the iPad we just handed her another gift and she was good to go.
Megan went gluten-free 12/30/14. This time around we were prepared for the withdrawal/detox symptoms and they showed up right on time on night 2. She has had the same symptoms every time we have tried to go gluten free and we stopped thinking she was reacting to something in the new bread. It only took 4 tries for us realize that it was detox/withdrawal symptoms.
Thursday, December 11, 2014
A GREAT problem to have....
I am overwhelmed by Megan's progress with her speech. Using the techniques we are learning Megan is chatting away non-stop. The GREAT problem that we have is that before we are able to respond to something she has said she says something else. I am running myself crazy trying to keep up with her.
Yesterday after school I explained to Sam what we were doing and he joined in and had so much fun. Megan was talking non-stop and getting him to do all kinds of stuff - mainly turning on various Christmas toys for her.
I have a call into the program to find out how to handle her excited talking, talking, talking but in the mean time mama will continue to do the best I can.
This morning during breakfast I didn't even say anything to her about talking or telling Sam to turn on the snowman and the first thing she did was point to it and say "on" and so it began. She ate her oatmeal and Sam turned on the snowman every time she said "on".
It is awesome that she has made the connection that she talks and we do something (basis of new program regardless of whether we understand what she is saying we respond to show her that her voice is important).
Yesterday after school I explained to Sam what we were doing and he joined in and had so much fun. Megan was talking non-stop and getting him to do all kinds of stuff - mainly turning on various Christmas toys for her.
I have a call into the program to find out how to handle her excited talking, talking, talking but in the mean time mama will continue to do the best I can.
This morning during breakfast I didn't even say anything to her about talking or telling Sam to turn on the snowman and the first thing she did was point to it and say "on" and so it began. She ate her oatmeal and Sam turned on the snowman every time she said "on".
It is awesome that she has made the connection that she talks and we do something (basis of new program regardless of whether we understand what she is saying we respond to show her that her voice is important).
Wednesday, December 10, 2014
on, on, on, on, on, ON!
Megan has been able to say "on" for several months now, and she has said it on occasion when she feels like it. We have been able to entice her to say it once that I can remember but definitely not more than once at a time.
Last night, using the new technique, Megan said "on" 10+ times. It was AWESOME. She was happy and proud and we were happy and proud and Sam was happy and proud. It was a great time. Oh and that was in about a 30 minute time frame.
Last night, using the new technique, Megan said "on" 10+ times. It was AWESOME. She was happy and proud and we were happy and proud and Sam was happy and proud. It was a great time. Oh and that was in about a 30 minute time frame.
Monday, December 8, 2014
Eating Out!, Dancing Snowman and continued progress
We decided to go for it and eat out as a family. Several other FG families with very sensitive kids have been able to eat at Five Guys without an issue and even eat the fries. We took their advice and took bread for Megan to use instead of their bun and she did great. She was extremely happy to be sitting at the table eating her own fries. She had a blast and even better than that she didn't have a reaction to anything. It was so much fun to get to go out again as a family, it has been more than a year. We will definitely do it again.
I have a dancing snowman that responds to sound. When you make a loud noise nearby it starts dancing and singing. Megan LOVES the snowman. A few days ago, before I had finished with decorations on the mantel, it was sitting on the mantel with several breakable items. I was on the phone with Will and Megan was standing beside me pointing and grunting to the mantel. I said "you can't have anything from up there"and then I noticed the dancing snowman - which is what she was asking for. She remembered it from last year. Amazing. I had to replace the batteries first and then it was on. She played it with for an hour - turning it on and running around, dancing, repeat. It did take her about 10 minutes to warm up to it enough that she would turn it on herself - until then she had Sam do it for her. She continues to love playing and dancing with that thing every day.
Megan is continuing to respond to the limited program we have started implementing. Will is still reading the books and I am still getting through all of the videos but armed with just the information each of us has we are doing what we can. She is giving us really good eye contact both on her own and when it is requested "Megan, look at mommy". She will look me right in the eyes when I request it and previously she would turn her head toward me but wouldn't always actually look me in the eyes - in fact more often than not she would look off to the side. Today I learned that looking on request is on a different level than looking just when she instigates it. Yay for her!
She has also been extremely talkative the past couple of days - pointing around the room and using word approximations "ight" for light, etc. Tonight I was sitting in the floor and she stood up and hugged me and then started grunting to get down and I told her to "tell mommy down". I waited several seconds and watched her thinking about it and then said "say down" and she did the sign for down. It was incredible. She repeated this again a few minutes later.
I have a dancing snowman that responds to sound. When you make a loud noise nearby it starts dancing and singing. Megan LOVES the snowman. A few days ago, before I had finished with decorations on the mantel, it was sitting on the mantel with several breakable items. I was on the phone with Will and Megan was standing beside me pointing and grunting to the mantel. I said "you can't have anything from up there"and then I noticed the dancing snowman - which is what she was asking for. She remembered it from last year. Amazing. I had to replace the batteries first and then it was on. She played it with for an hour - turning it on and running around, dancing, repeat. It did take her about 10 minutes to warm up to it enough that she would turn it on herself - until then she had Sam do it for her. She continues to love playing and dancing with that thing every day.
Megan is continuing to respond to the limited program we have started implementing. Will is still reading the books and I am still getting through all of the videos but armed with just the information each of us has we are doing what we can. She is giving us really good eye contact both on her own and when it is requested "Megan, look at mommy". She will look me right in the eyes when I request it and previously she would turn her head toward me but wouldn't always actually look me in the eyes - in fact more often than not she would look off to the side. Today I learned that looking on request is on a different level than looking just when she instigates it. Yay for her!
She has also been extremely talkative the past couple of days - pointing around the room and using word approximations "ight" for light, etc. Tonight I was sitting in the floor and she stood up and hugged me and then started grunting to get down and I told her to "tell mommy down". I waited several seconds and watched her thinking about it and then said "say down" and she did the sign for down. It was incredible. She repeated this again a few minutes later.
Tuesday, December 2, 2014
Hopping! Hopping! Hopping! and other updates
Tonight, for the first time, Megan hopped all by herself. She has been hopping for a very long time, but only when she had something to hold onto with at least one hand. Tonight she was a little hopping machine and she was having a blast! I videoed it and she was even fine with that. At one point she walked right up to the camera and then went back to hopping with her daddy.
She is continuing to do awesome eating at the table. She is doing extremely well with managing utensils and just sitting there like such a big girl.
We will be starting a new program with Megan soon to help her. We have begun implementing a tiny portion of the program and are seeing amazing results. The part we have started working on is with her eye contact. We are getting TONS more eye contact - so much more that it is difficult to comprehend how great she is doing. It is so nice to have her looking us in the eyes.
She is continuing to do awesome eating at the table. She is doing extremely well with managing utensils and just sitting there like such a big girl.
We will be starting a new program with Megan soon to help her. We have begun implementing a tiny portion of the program and are seeing amazing results. The part we have started working on is with her eye contact. We are getting TONS more eye contact - so much more that it is difficult to comprehend how great she is doing. It is so nice to have her looking us in the eyes.
Sleep update and eating at the table
A little over a week ago Megan started struggling again with her sleep - she got to the point where she was up for 5-6 hours and was sleeping until 10:15 to make up for it. She is headed back in the right direction now and we are so thankful for that. She restarted her b2 and she got cst yesterday which visibly helped her while we were in the office.
This weekend I decided to let Megan eat her breakfast (cream of wheat) by herself to see how it would go. It has been several months since we last tried it, that time she took 1-2 bites and threw the spoon and then the bowl all three times we attempted it. On Saturday she ate 2/3 of her food before she dropped the spoon on the floor. She ended up finishing it after getting her spoon back. It was so exciting for her to do this by herself. She has been capable of feeding herself with a spoon for more than a year, that part wasn't the issue, the immediate throwing of the spoon and bowl was the problem.
After her success with her breakfast we decided to remove her tray and push her up to the table to eat for the rest of the day. Again, last time we tried this there was a lot of throwing of food and pushing off from the table so it didn't last long. Just like with the spoon/bowl attempt this time went so much better. In fact Megan has been eating at the table every meal since, except for one time. Last night she fed herself with a real fork while sitting at the table.
This morning she ate 3/4 of a bowl of oatmeal completely by herself. I was so proud of her and she is so proud of herself. She has been showing us that she wanted to be more independent lately and this just goes right along with it.
Saturday, November 22, 2014
Random Words
Megan has been repeating words/phrases the last few days. One day when I asked her if she was all done she said "ah un" immediately afterward. If I had heard it out of context I am not sure I would have recognized it but it was definitely clear.
Yesterday in the car she said "anta" for Santa (Sam was talking about it).
She has answered "nah" to questions a couple of times this week.
Yesterday in the car she said "anta" for Santa (Sam was talking about it).
She has answered "nah" to questions a couple of times this week.
Tuesday, November 18, 2014
Feeling great, gaining weight and granny
Last weekend we spent the afternoon at granny's house. At one point Megan pointed at her and said "anneee". There was no g or r but the sound was perfect. As per her usual self, no repeat on it. But it was awesome to hear her say it.
Megan has been feeling so great lately. She is still waking up every night but typically for less than 30 minutes and you can tell that she isn't struggling with digestion or exposure on a daily basis. Her coloring is better and she feels GOOD. She had an appointment with Dr. B. yesterday and she commented on how great Megan looked. She said, "you know I wouldn't have known that her coloring was off before, but compared to how she looks today man she was ashen/pale looking before. You can tell she feels so much better". Megan weighed 29.6 pounds and the scale jumped up to 30.2 a couple of times. Woo-hoo - go Megan go.
We have gotten to where we are today with her by removing all "extra" supplements. We just started taking them away one or two at a time until she stopped reacting. Each time we would take something away she would have 1-2 good nights and then go right back to struggling so we would take away something else until we got to the point where she stopped struggling. She needs all of the supplements we have removed so we are starting them back, one at a time, and spacing them out. So instead of getting iron every day she is going to get it every 3rd day and we will see how it goes. Once we have her established on it, or determine she just can't handle it then we will move on to the next item.
I have an appointment later this week to go over Megan's latest lab results which will tell us what else we need to get her going on - but hopefully these will help fix the problems so she stops having issues with the current supplements.
Megan has been feeling so great lately. She is still waking up every night but typically for less than 30 minutes and you can tell that she isn't struggling with digestion or exposure on a daily basis. Her coloring is better and she feels GOOD. She had an appointment with Dr. B. yesterday and she commented on how great Megan looked. She said, "you know I wouldn't have known that her coloring was off before, but compared to how she looks today man she was ashen/pale looking before. You can tell she feels so much better". Megan weighed 29.6 pounds and the scale jumped up to 30.2 a couple of times. Woo-hoo - go Megan go.
We have gotten to where we are today with her by removing all "extra" supplements. We just started taking them away one or two at a time until she stopped reacting. Each time we would take something away she would have 1-2 good nights and then go right back to struggling so we would take away something else until we got to the point where she stopped struggling. She needs all of the supplements we have removed so we are starting them back, one at a time, and spacing them out. So instead of getting iron every day she is going to get it every 3rd day and we will see how it goes. Once we have her established on it, or determine she just can't handle it then we will move on to the next item.
I have an appointment later this week to go over Megan's latest lab results which will tell us what else we need to get her going on - but hopefully these will help fix the problems so she stops having issues with the current supplements.
Sunday, November 9, 2014
Independence!
Megan has seriously got every adult at her school fooled. When I picked her up on Friday they told me that she did so great at recess and for the second time this week went down the slide by herself. What? She has been refusing to even slide and they have been buying it and sliding with her. When I told them she had their number she started laughing and put her hand over my mouth. "stop telling on me mommy".
Today we took the kids to the playground at Megan's school so I could video her sliding, on their equipment, by herself. We got SO much more than we bargained for. She had the time of her life. One of us followed her on the equipment (up the stairs, over the bridge, to the slide) and then slid beside her or stayed behind her while she slid down the slide. After doing this a few times and not having to assist her at all I decided to try it from the ground.
Megan has NEVER, NEVER, NEVER been on any playground equipment without someone behind her. She won't climb more than a stair or two without us right there and we won't want her on her own since she will just stop and start coming back down the steps without holding on which she isn't capable of doing yet.
Anyway, I let her go and I stayed on the ground and she did amazing. Will was on the other side of the equipment protecting the openings and together we had her covered. She climbed the steps, climbed up onto the bridge, walked/ran across the bridge and slid down the slide 100% by herself 10-15 times. On about the 10th time I took out my phone and videoed her (which she wasn't completely thrilled about); because she wasn't happy about me having my phone we had to encourage her along, but she still did it.
I shed some happy tears as I watched her do something for the first time; something that was a broadening of her independence.
Today we took the kids to the playground at Megan's school so I could video her sliding, on their equipment, by herself. We got SO much more than we bargained for. She had the time of her life. One of us followed her on the equipment (up the stairs, over the bridge, to the slide) and then slid beside her or stayed behind her while she slid down the slide. After doing this a few times and not having to assist her at all I decided to try it from the ground.
Megan has NEVER, NEVER, NEVER been on any playground equipment without someone behind her. She won't climb more than a stair or two without us right there and we won't want her on her own since she will just stop and start coming back down the steps without holding on which she isn't capable of doing yet.
Anyway, I let her go and I stayed on the ground and she did amazing. Will was on the other side of the equipment protecting the openings and together we had her covered. She climbed the steps, climbed up onto the bridge, walked/ran across the bridge and slid down the slide 100% by herself 10-15 times. On about the 10th time I took out my phone and videoed her (which she wasn't completely thrilled about); because she wasn't happy about me having my phone we had to encourage her along, but she still did it.
I shed some happy tears as I watched her do something for the first time; something that was a broadening of her independence.
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