I want to make sure everyone got to see the Rett Syndrome segment on The View!
It was such a surreal and exciting experience seeing our friends, the Gutierrez Family, on stage with the VIEW ladies and knowing that our awesome Girl Power to Cure ladies were there supporting and cheering on our rett family from the audience! Manny and Stefanie did a fantastic job sharing their story about their beautiful daughter Anna and Rett Syndrome. Monica Coenraads of RSRT was also in the audience and gave the world insight into how close we are to curing this dreaded disease! I was also thrilled to hear that not only did the View put a link on their page to the RSRT website (so the viewers had a place to go for more information and to place donations) but the ladies of the View watched the documentary, RETT, as part of their research on the segment, and a copy was given to each audience member at The View taping.
That's some pretty amazing exposure for a disease that strikes 1 in every 10,000! But as Woopie pointed out, and I'm paraphrasing "you say it's 1 in like a trillion but you never know who that 1 will be!" Which is so true, this can happen to ANYONE! Rett strikes at random! You never know who's family it's going to hit next. Support Rett Research! Our girls are waiting to break free.
Saturday, January 29, 2011
Thursday, January 27, 2011
RETT SYNDROME ON THE VIEW!
Girl Power 2 Cure girl Anna and her family, along with RSRT Executive Director Monica Coenraads, will appear on The View tomorrow, January 28th.
Tune in at 11 am EST / 10 am CST/PT on ABC to watch!
Anna's dad, Manny Gutierrez, is a cameraman for The View. Thank you to their family and to Monica at RSRT for sharing the Rett story on air!
The Gutierrez Family : click to check out their blog about their taping of the View.
Have a wonderful weekend everyone! Be sure to spread the news!
Wednesday, January 26, 2011
Moving On...
Life has been slowly returning to normal from our crazy couple of months. It feels so good to spend more time with James and Gracie and not in constant worry and distress over Annie and what might be upsetting her. The kids are actually able to have friends over again, which is a GREAT thing because when Annie is not in a good place I can't run the kids to and from their friends or allow them to have kids over because I'm too preoccupied with caring for her. Rett Syndrome doesn't just affect my middle child but it affects ALL of them. When things like this have happened in the past I have been able to take time out and let our respite deal with it for a few hours a week so I can make life a little more peaceful for James and Gracie but since the end of summer we have been without respite which has been a huge challenge. Last Friday we finally got a great college student to come in and work with Annie a couple times a week to free me up a little bit more - YES!
Annie's been on and off since my last post. We ended up taking her off the neurontin which we determined was responsible for her lack of sleep which lead to insane screaming fits all day because she couldn't get her little body to settle down. Problem solved right? Well, sort of. It seems to be taking a long time to get Annie back into her typical sleep routine. We've also been seeing a cranky Annie which we aren't used to, she crabs during the day and is doing a lot of breath holding (gave us a good scare on Sunday and got herself out of bible school). Of course cranky whines are much easier to bear than moaning in pain so we'll take it. But, it's more than that, there's just been these weird, little things that don't mean anything at all by themselves but when you add them up they just make a momma a little uneasy. I can't put my finger on it, I just feel like somethings not right. Annie looks great, she's communicating with us again, she's tolerating therapy, she just seems different, and irritated. After going through the list of things it might be and analyzing every little movement, vocalization and look that doesn't seem quite right we've come up with nothing. I've been known to over analyze, I admit it. My husband has had to tell me to "give it a break" and "stop trying to figure everything out" on more than a few occasions. So maybe that's just it, I'm over analyzing. But just to be sure I am keeping a close watch over James and Gracie and asking them to report back any aches, pains or not so good feelings they have in the hopes that maybe it's a virus running through the house and Annie was #1 on the list.
Gracie started feeling not so well today, it started with "I'm so tired!" after sleeping a whopping 13 hours! And then it was "my mouth is itchy" - that's a strange symptom - hmmm wonder if Annie was feeling like that. Then "I'm so cold mom, I can't warm up" - hmmm, Annie's circulation has been terrible lately, I wonder if she felt like that. I ask Gracie if she would like to sit on the couch and watch a movie or if she wants to play wii dance party, she says "watch a movie" YEP, she's sick! DING DING DING!!! I think we have it!! I'm guessing that Annie had this same thing going on but couldn't tell me. Thank GOD for my typical kiddos who can sometimes give me a clue as to what's going on with Annie.
Colds and virus's we can deal with, no sweat! So it looks like the MacDonald family is in for easier days, with respite and the GI pain in check I think it's time to move on past this little hiccup and get on to some fun!
This is Annie at therapy today, much better than what we saw a few weeks ago!
Annie's been on and off since my last post. We ended up taking her off the neurontin which we determined was responsible for her lack of sleep which lead to insane screaming fits all day because she couldn't get her little body to settle down. Problem solved right? Well, sort of. It seems to be taking a long time to get Annie back into her typical sleep routine. We've also been seeing a cranky Annie which we aren't used to, she crabs during the day and is doing a lot of breath holding (gave us a good scare on Sunday and got herself out of bible school). Of course cranky whines are much easier to bear than moaning in pain so we'll take it. But, it's more than that, there's just been these weird, little things that don't mean anything at all by themselves but when you add them up they just make a momma a little uneasy. I can't put my finger on it, I just feel like somethings not right. Annie looks great, she's communicating with us again, she's tolerating therapy, she just seems different, and irritated. After going through the list of things it might be and analyzing every little movement, vocalization and look that doesn't seem quite right we've come up with nothing. I've been known to over analyze, I admit it. My husband has had to tell me to "give it a break" and "stop trying to figure everything out" on more than a few occasions. So maybe that's just it, I'm over analyzing. But just to be sure I am keeping a close watch over James and Gracie and asking them to report back any aches, pains or not so good feelings they have in the hopes that maybe it's a virus running through the house and Annie was #1 on the list.
Gracie started feeling not so well today, it started with "I'm so tired!" after sleeping a whopping 13 hours! And then it was "my mouth is itchy" - that's a strange symptom - hmmm wonder if Annie was feeling like that. Then "I'm so cold mom, I can't warm up" - hmmm, Annie's circulation has been terrible lately, I wonder if she felt like that. I ask Gracie if she would like to sit on the couch and watch a movie or if she wants to play wii dance party, she says "watch a movie" YEP, she's sick! DING DING DING!!! I think we have it!! I'm guessing that Annie had this same thing going on but couldn't tell me. Thank GOD for my typical kiddos who can sometimes give me a clue as to what's going on with Annie.
Colds and virus's we can deal with, no sweat! So it looks like the MacDonald family is in for easier days, with respite and the GI pain in check I think it's time to move on past this little hiccup and get on to some fun!
Saturday, January 15, 2011
Rett Pain Update
Thank you, thank you to my loving friends for all of your support, encouragement, prayers but most of all for your understanding. I LOVE you and want you to know that your girls are in my prayers daily as well. We have increased Annie's neurontin and are working hard at getting her night time sleep routine under control - we may be headed for more medication changes to accomplish that. Thankfully we have the most wonderful doctor in the universe that takes impeccable care of our Annie. If we don't see this frown turn upside down soon we know she will know what to do.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". Jeremiah 29:11
Thursday, January 13, 2011
Rett Syndrome Pain
Annie's little body has been responding fairly well to the new med she is on for pain, unfortunatly as is usually the case with rett syndrome when you solve one problem a new one pops up. In this case it's sleep, ahh yes, lack of sleep, here we go again. I swear Rett Syndrome would be so much easier to deal with if Annie never had to eat and never had to sleep, these 2 things just seem to be our arch enemies.
Last night Annie actually did really well, she slept from 9 until 5am with only 1 dose of each of her sleep meds! I woke up with her at 5am and thought "all right! We are over the sleep issues, today is going to be a GOOD day". Why oh why did I have to say that. I got Annie dressed, gave her her meds got her downstairs and put her on the couch while I made breakfasts for the kids, packed their school bags and downed some coffee. I went to grab Annie off the couch and realized that she was kicking and breath holding a lot but chalked it up to being tired (usually when Annie sleeps well at night she's more sleepy during the day - I know, that doesn't make any sense) and thought that once I got her in the car to make the treck to school she would take a nap and all would be fine. I fed Annie, got the other kids up, packed everyone in the car and started traveling the snowy roads the 20 minute drive to Jay's school. Annie never fell asleep and started moaning - uggg, my heart began to sink, moaning is NOT a good sign. After dropping James off I turned around to head back home about halfway through the drive Annie's moan turned into a scream, at this point I realized we were not dealing with a sleep issue here, this scream is a scream of pain.
When we arrived home we had 15 minutes for me to take a shower and get Grace packed for school. I put Annie on the couch and the screaming continued and now heightened with frantic kicking. Grace and I rushed to get ready and I put the girls back in the car - Annie still throwing a fit. I could have kept Grace home from school and tried to console Annie but we've been through this many, many, many times before and my main concern was getting Grace to school so she could be released from the lash of Rett. When we got to Gracie's school Annie was beside herself, I thought to myself "Dear God how am I going to get this girl into her chair so that I can take Gracie into school". I manage to get Annie's chair out of the car and unbuckle her, as I grabbed her waist to get her thrashing, screaming body out of the car I watched Annie's face as she searched for something to bite, thankfully I was wearing my winter jacket, it took most of Annie's wrath - "everything's OK Annie" I lie. Once in her chair I had to hold her flailing body down to put all of the straps on her, I also strapped down her feet because she was kicking so badly that I thought she might hurt herself. I tried to gain my composure as we walked into church 20 minutes late for preschool with a child screaming and thrashing in her wheel chair. There were still some parents there a couple of them looked at Annie, horrified at the sight of her. The preschool director ran up to me and asked what was wrong and offered to help. Trying to hold it together I smiled, thanked her and simply said Annie is having a difficult day today. I kissed Gracie and tried to get Annie and myself out of the church as quickly as possible without it looking like I was trying to get out of there as quickly as possibly - God forbid anyone ever see how close I am to tears. I get Annie and her chair back into the car, constantly trying to offer words of relief to my suffering child, time to drive to therapy. I plead with Annie to tell me what's wrong and to try to calm down. I turn on her favorite video and that doesn't seem to help. I look at the clock, Annies been screaming now for an hour and it doesn't seem like it's going to let up any time soon, we are 20 minutes away from therapy and it starts in 20 minutes I think to myself "if I can just make it 20 more minutes I can hand her off to the therapist and maybe she can calm her down" - a desperate thought for a now very desperate mommy. I try to stay calm and keep my focus on the road as Annie's tantrum intensifies and she starts to cough and gag on her own saliva because she's screaming so intensly. I start to think "Oh God should I just take her straight to the ER, she looks like she's in such extreme pain but she's in pain most days so how do I know if this pain is intense enough to take her in?" "What if she's just so exhausted and rett syndrome is preventing her from naping, could this all possibly be due to sleep?" "did I push her foot into her boot to hard? Could I have broken her ankle?". I finally get to therapy and park. I frantically call Scott, I get the voicemail - CRAP, he's in a meeting. OK, our code for emergency is to call twice right away, so I call again he answers (thank GOD!). I try not to sound like such a lunatic and tell him all that's going on , of course he can hear Annie in the background, his suggestion is to take her to the pediatrician (why didn't I think of that? I drove past the peds office 30 minutes ago, it's so hard to think when she's screaming like this!). I tell him that she's been screaming now for 1 hour and 20 minutes and I don't feel like I'm in a position to continue to drive her around and back to the peds office. I tell him to forget and that I'll think of something - beyond frustrated now that he didn't put on his superhero cape and come rescue us from this hopeless situation.
It's time for therapy and I decide that I'll take Annie in and ask the therapist if she thinks I should take her to the ER (thankfully we have been at this therapy for over 4 years so I feel comfortable enough to ask the therapists their opinion). Again I grab Annie out of the car, and again my jacket gets the bulk of Annie's bite, "I love you Annie" I tell her. I try as casually as possible to wheel this out of control child into therapy, people look at her in horror then look at me as if to say "why aren't you doing anything?". I meet their stares with a calm composure and a smile all the while inside wanting to scream at them "You have NO idea!" I sit in the waiting room and recieve more stares from parents and 2 years later (actually it was 2 minutes but it felt like years) our PT comes out. She kneels down in front of Annie and says "I could hear you all the way in the swing room, what's wrong". I calmly tell Amy that it's been a really tough morning and I'm not sure what's going on. We take her back into the therapy room, I get her out of her chair and jacket and Annie finally starts to calm down. I hold her and rock her while Amy gets some toys. The screaming has calmed back down to a moan and I tell Amy that I think she's in pain but I don't know what to do. Amy agrees that she's in pain and we start to try moving her around to find the source - of course that comes up with nothing (by the way, this is not an all that unusual day so while I'm familiar with this behavior I'm not "used to it" by any means.). We decide to proceed with therapy. Annie's been in therapy for over 4 years, there have been a handful of times that other people have taken her but the vast majority it has been me and I have stayed to watch each and every session. Today I physically couldn't stay. I start to feel my mental exhaustion, I start to feel a lump in my throat, I feel weak and shaky, I tell Amy that I'll just go sit down in the waiting room adding that I have this really great book I want to get back to so she doesn't think that I'm on the verge of completely breaking down. I get into the waiting room and the same parents are there, I see their looks - their ones of pity - my kid is by far the most disabled of any child here and a screaming fit on top of it, oh, poor woman. I want to scream and tell them not to pity me, we're fine, just having a tough day. I sit down to "read" my book but really just open it and go through my thoughts. All I want to do is breakdown, scream, cry, run away but I can't head to the bathroom and cry silently in the stall because what if Amy comes out and Annie needs me. I swallow the huge lump in my throat and play around with my phone (that get's no reception but no one knows that, I just need something to fumble with so no one tries to talk to me). The session is now almost over so I head in to see how Annie's doing, her face is blotchy, she has huge purple bags under her eyes but she flashes me a smile. Amy tells me that she's calmed down and has been productive but is moaning and thinks she may still be uncomfortable. I'm angry, angry that Annie had to go through that pain, angry that I had to hear my daughters suffering for an hour and a half and angry that we're dealing with rett syndrome, I'm spent. I look at Annie and say to her "we need to get Amy's home number so we can call her next time you throw a fit" trying to make a joke so Amy doesn't see that at this point I'm just destroyed. I thank her, get Annie dressed for the outdoors and head to the car, Annie starts to moan. I get her into the car and kiss her blotchy, tear stained cheek "I love you so much, I wish God would let me take your pain", Annie looked me in the eyes, gave me a half smile for a split second then closed her eyes, opened her mouth and started screaming in pain again. I started to cry too but forced myself to stop, we have to pick up Gracie and after the spectical we made of ourselves in drop off I don't want everyone to see that I've been crying in pick up. By the grace of God Annie falls asleep on the way to pick up Gracie.
The rest of the day was on and off screaming fits, there wasn't much relief, not from her videos, not from medicine, not from snuggles. She refused to eat and had breath holding spells throughout the day. There were times of intense painful screaming fits and then the pain seemed to lessen leaving Annie just moaning quietly only to intensify again to a full out scream. Annie would sleep for a few minutes then wake up screaming, she would smile occasionally only to start moaning again. I hate Rett Syndrome. I wish I had a clue as to what was causing the pain, I just want to know so I could attempt something and not feel so helpless.
I have meet so many special needs parents through blogging and have learned so much from all of you. If you have any thoughts I would appreciate them. If anyone out there has a clue as to where the pain is coming from I would love to hear your thoughts. I know that there are some things that we just need to accept with Rett Syndrome and maybe this pain is one of those things, if so I would also love to hear any ideas of how you cope with your child's pain.
Today was a difficult day. Tomorrow will be better.
Last night Annie actually did really well, she slept from 9 until 5am with only 1 dose of each of her sleep meds! I woke up with her at 5am and thought "all right! We are over the sleep issues, today is going to be a GOOD day". Why oh why did I have to say that. I got Annie dressed, gave her her meds got her downstairs and put her on the couch while I made breakfasts for the kids, packed their school bags and downed some coffee. I went to grab Annie off the couch and realized that she was kicking and breath holding a lot but chalked it up to being tired (usually when Annie sleeps well at night she's more sleepy during the day - I know, that doesn't make any sense) and thought that once I got her in the car to make the treck to school she would take a nap and all would be fine. I fed Annie, got the other kids up, packed everyone in the car and started traveling the snowy roads the 20 minute drive to Jay's school. Annie never fell asleep and started moaning - uggg, my heart began to sink, moaning is NOT a good sign. After dropping James off I turned around to head back home about halfway through the drive Annie's moan turned into a scream, at this point I realized we were not dealing with a sleep issue here, this scream is a scream of pain.
When we arrived home we had 15 minutes for me to take a shower and get Grace packed for school. I put Annie on the couch and the screaming continued and now heightened with frantic kicking. Grace and I rushed to get ready and I put the girls back in the car - Annie still throwing a fit. I could have kept Grace home from school and tried to console Annie but we've been through this many, many, many times before and my main concern was getting Grace to school so she could be released from the lash of Rett. When we got to Gracie's school Annie was beside herself, I thought to myself "Dear God how am I going to get this girl into her chair so that I can take Gracie into school". I manage to get Annie's chair out of the car and unbuckle her, as I grabbed her waist to get her thrashing, screaming body out of the car I watched Annie's face as she searched for something to bite, thankfully I was wearing my winter jacket, it took most of Annie's wrath - "everything's OK Annie" I lie. Once in her chair I had to hold her flailing body down to put all of the straps on her, I also strapped down her feet because she was kicking so badly that I thought she might hurt herself. I tried to gain my composure as we walked into church 20 minutes late for preschool with a child screaming and thrashing in her wheel chair. There were still some parents there a couple of them looked at Annie, horrified at the sight of her. The preschool director ran up to me and asked what was wrong and offered to help. Trying to hold it together I smiled, thanked her and simply said Annie is having a difficult day today. I kissed Gracie and tried to get Annie and myself out of the church as quickly as possible without it looking like I was trying to get out of there as quickly as possibly - God forbid anyone ever see how close I am to tears. I get Annie and her chair back into the car, constantly trying to offer words of relief to my suffering child, time to drive to therapy. I plead with Annie to tell me what's wrong and to try to calm down. I turn on her favorite video and that doesn't seem to help. I look at the clock, Annies been screaming now for an hour and it doesn't seem like it's going to let up any time soon, we are 20 minutes away from therapy and it starts in 20 minutes I think to myself "if I can just make it 20 more minutes I can hand her off to the therapist and maybe she can calm her down" - a desperate thought for a now very desperate mommy. I try to stay calm and keep my focus on the road as Annie's tantrum intensifies and she starts to cough and gag on her own saliva because she's screaming so intensly. I start to think "Oh God should I just take her straight to the ER, she looks like she's in such extreme pain but she's in pain most days so how do I know if this pain is intense enough to take her in?" "What if she's just so exhausted and rett syndrome is preventing her from naping, could this all possibly be due to sleep?" "did I push her foot into her boot to hard? Could I have broken her ankle?". I finally get to therapy and park. I frantically call Scott, I get the voicemail - CRAP, he's in a meeting. OK, our code for emergency is to call twice right away, so I call again he answers (thank GOD!). I try not to sound like such a lunatic and tell him all that's going on , of course he can hear Annie in the background, his suggestion is to take her to the pediatrician (why didn't I think of that? I drove past the peds office 30 minutes ago, it's so hard to think when she's screaming like this!). I tell him that she's been screaming now for 1 hour and 20 minutes and I don't feel like I'm in a position to continue to drive her around and back to the peds office. I tell him to forget and that I'll think of something - beyond frustrated now that he didn't put on his superhero cape and come rescue us from this hopeless situation.
It's time for therapy and I decide that I'll take Annie in and ask the therapist if she thinks I should take her to the ER (thankfully we have been at this therapy for over 4 years so I feel comfortable enough to ask the therapists their opinion). Again I grab Annie out of the car, and again my jacket gets the bulk of Annie's bite, "I love you Annie" I tell her. I try as casually as possible to wheel this out of control child into therapy, people look at her in horror then look at me as if to say "why aren't you doing anything?". I meet their stares with a calm composure and a smile all the while inside wanting to scream at them "You have NO idea!" I sit in the waiting room and recieve more stares from parents and 2 years later (actually it was 2 minutes but it felt like years) our PT comes out. She kneels down in front of Annie and says "I could hear you all the way in the swing room, what's wrong". I calmly tell Amy that it's been a really tough morning and I'm not sure what's going on. We take her back into the therapy room, I get her out of her chair and jacket and Annie finally starts to calm down. I hold her and rock her while Amy gets some toys. The screaming has calmed back down to a moan and I tell Amy that I think she's in pain but I don't know what to do. Amy agrees that she's in pain and we start to try moving her around to find the source - of course that comes up with nothing (by the way, this is not an all that unusual day so while I'm familiar with this behavior I'm not "used to it" by any means.). We decide to proceed with therapy. Annie's been in therapy for over 4 years, there have been a handful of times that other people have taken her but the vast majority it has been me and I have stayed to watch each and every session. Today I physically couldn't stay. I start to feel my mental exhaustion, I start to feel a lump in my throat, I feel weak and shaky, I tell Amy that I'll just go sit down in the waiting room adding that I have this really great book I want to get back to so she doesn't think that I'm on the verge of completely breaking down. I get into the waiting room and the same parents are there, I see their looks - their ones of pity - my kid is by far the most disabled of any child here and a screaming fit on top of it, oh, poor woman. I want to scream and tell them not to pity me, we're fine, just having a tough day. I sit down to "read" my book but really just open it and go through my thoughts. All I want to do is breakdown, scream, cry, run away but I can't head to the bathroom and cry silently in the stall because what if Amy comes out and Annie needs me. I swallow the huge lump in my throat and play around with my phone (that get's no reception but no one knows that, I just need something to fumble with so no one tries to talk to me). The session is now almost over so I head in to see how Annie's doing, her face is blotchy, she has huge purple bags under her eyes but she flashes me a smile. Amy tells me that she's calmed down and has been productive but is moaning and thinks she may still be uncomfortable. I'm angry, angry that Annie had to go through that pain, angry that I had to hear my daughters suffering for an hour and a half and angry that we're dealing with rett syndrome, I'm spent. I look at Annie and say to her "we need to get Amy's home number so we can call her next time you throw a fit" trying to make a joke so Amy doesn't see that at this point I'm just destroyed. I thank her, get Annie dressed for the outdoors and head to the car, Annie starts to moan. I get her into the car and kiss her blotchy, tear stained cheek "I love you so much, I wish God would let me take your pain", Annie looked me in the eyes, gave me a half smile for a split second then closed her eyes, opened her mouth and started screaming in pain again. I started to cry too but forced myself to stop, we have to pick up Gracie and after the spectical we made of ourselves in drop off I don't want everyone to see that I've been crying in pick up. By the grace of God Annie falls asleep on the way to pick up Gracie.
The rest of the day was on and off screaming fits, there wasn't much relief, not from her videos, not from medicine, not from snuggles. She refused to eat and had breath holding spells throughout the day. There were times of intense painful screaming fits and then the pain seemed to lessen leaving Annie just moaning quietly only to intensify again to a full out scream. Annie would sleep for a few minutes then wake up screaming, she would smile occasionally only to start moaning again. I hate Rett Syndrome. I wish I had a clue as to what was causing the pain, I just want to know so I could attempt something and not feel so helpless.
I have meet so many special needs parents through blogging and have learned so much from all of you. If you have any thoughts I would appreciate them. If anyone out there has a clue as to where the pain is coming from I would love to hear your thoughts. I know that there are some things that we just need to accept with Rett Syndrome and maybe this pain is one of those things, if so I would also love to hear any ideas of how you cope with your child's pain.
Today was a difficult day. Tomorrow will be better.
Saturday, January 8, 2011
6 Years already???
How time flies. Annie turned 6 on January 6. It feels like it was just yesterday that she was this tiny
Look how perfect this baby is.
This is Annie at her 1st Birthday - a January Luau!
This is Annie at her second birthday. Rett was fierce this year, she started battling breathing issues and was a very sick little girl but look at that smile here.
Annie's 3rd Birthday, Look at this happy girl, we had a PJ movie party with all her cousins!
Annie's 4th Birthday, guess what her favorite gift was!
Annie's 5th Birthday was at Chuck E. Cheese's and it was a "friends" birthday! She had so much fun I think she smiled for 3 days straight!
Annie's 6th Birthday
I have heard once that everyone you meet is either better or worse off from having known you (Yikes) Well, in Annie's case there isn't a soul that she has left "worse off". Annie is love and compassion and she spreads that wherever she goes. In stores and at therapy she will smile at everyone she meets, looking them deep into their eyes until they acknowledge her. So many strangers have been moved by her, I can remember one man asking me "where are her wings?". That's Annie, completely blameless, in her 6 years of life she has never uttered a hurtfull word, never argued, never hit, never shown anything but pure love towards others. Sometimes it makes me wonder why I ever hope and dream and pray for a "cure" she's pretty much perfect just as she is, rett and all (of course I would like to relieve some of the suffering). I think this song by Steven Curtis Chapman sums up Annie perfectly - my living, breathing, priceless work of art.
Tuesday, January 4, 2011
1/1/11
Start the New Year off right and help us raise $11,111 in January to support Rett Research!
Can you donate $1.11 - less than a cup of coffee, or $11.11 - less than a large pizza, or maybe even $111.11 in support of Rett Syndrome throughout 1/11? Donate in honor of Annie today!!
So far we've raised $1,097 of our $11,111 goal! Proving that EVERY DOLLAR COUNTS! Together we can raise thousands to kick off 2011 in a HUGE way!!!
Click HERE and make Rett Syndrome the FIRST charity you support in 2011! Make Rett Syndrome the FIRST curable neurological disorder! Make a donation today!
Monday, January 3, 2011
Chasing Rett Symptoms
Prior to my career as a mom I was a registered dietitian. I loved learning about nutrition and the way the body works and responds to proper nutrition and vitamin and mineral supplementation especially when it's stressed from a disease or some sort of trauma. It's actually very fascinating. As far as working though, well, that really wasn't my thing so the momma role fits perfectly. When my kids were born I put the nutrition to work and tried to keep my kids fed as healthy as possible. We also use homeopathic remedies for most of their ailments. When Rett Syndrome came into the picture I was challenged. Never had I worked with a child so sick before. Not to mention the fact that right after diagnosis Annie was an incredibly fragile child, it's only now that I realize just how sick she was then. I researched of course and found out everything I could about rett and how it affects the body and how I could possibly keep Annie's symptoms less severe by supplementing with nutrition (man did I feel like a failure when we had to get a g-tube, fortunately the g-tube ended up being the best move we could have made for Annie's nutrition so it all worked in the end.) We started by changing Annie's diet, we took out gluten and casein and saw a HUGE improvement. We also started digestive enzymes as children with rett syndrome have a very difficult time with digestion. We of course added a multivitamin, vitamin D and extra calcium. From there it's sort of a blur, we have tried L-carnitine, extra folic acid, zinc picolinate, aloe vera juice, and host of other things but if we don't see a change for the better then we stop them, no reason to make the liver work any harder than it has to processing all of that without benefit. In addition to the supplements we have also have Annie on some meds - it goes against all of my "natural" tendencies but homeopathic remedies didn't even touch Annie's issues and if natural doesn't work then we need something to offer her relief.
It's funny (well, funny's not really the word for it), I was recently at the hospital with Annie for some testing, she was in a new department so they weren't familiar with her and wanted to know a list of her meds - I didn't bring Annie's medical binder with me so I had to write it all from memory, I told the woman there, oh, she's not on many meds at all. Once it's written out I see how much she's really on and it's alarming to think that this is an almost 6 year old little girl. It's actually a little hard to keep up with all of it but if this is what Annie needs to keep her strong, healthy, calm and in as little pain as possible then we will keep it up. I can't wait for the day that we start peeling all of this away and are left with a child who can thrive all on her own. I DO feel very thankful when I look at this list though because it does NOT include ANY anti-seizure meds. Most girls with rett syndrome suffer from seizures. Many of these seizures are hard to control with meds. Some girls need to be on large amounts of different meds that cause them to sleep during the day in an attempt to control seizure activity. We are so very blessed that Annie was only on seizure meds for a very short time and that she has been without them for years, however we are aware that they may come back at any moment and are thankful for every day that Annie lives seizure free.
Soooo, here is what we have settled on. And when I say settle I use the term loosely. Poor Scott learns the "cocktail" just as I'm modifying something. Annie is always changing and growing and her nutrition needs to follow suit.
These are for Annie's basic nutrition: Bone supplement (for thinning bones due to rett), Multivitamin/mineral (rett causes malabsorption) and a probiotic (for proper gut flora, regularity and increased immune system)
These are for extra nutrition: a "milkshake" of Hemp milk (rich in fat, calcium and vit. D), protein powder and flax seed oil
These are meds that are given when they are necessary: suppositories (for severe constipation or impaction - rett causes poor motility and hypotonia of all muscles including the GI system), Mylanta (for breakthrough reflux and gas), and Levsin (for severe GI pain).
These are Annie's everyday meds: Buspar (rett syndrome causes severe anxiety), Zantac (for reflux - I'm not sure you can have a neurological condition without having reflux), and neurontin (for Annie's nerves that are "over-firing" and causing Annie severe pain).
These are for sleep: Melatonin (to help put Annie to sleep, we give it twice a night because rett causes severe sleep disturbances), and benedryl (to help keep Annie asleep). I really feel like Annie should be on stronger meds for sleep and we have tried some but at this point Annie has some pretty severe breathing issues and I would rather be less aggressive here then worry about Annie's breathing at night.
In addition to all the meds and supps Annie also has a whole host of medical supplies because of her g-tube. This is a typical monthly shipment:
2 types of syringes for the month, extension tubing, tube feeding bags, a new mic-key kit so we can change Annie's button (yes, if you can imagine, we have to do that), and of course the formula (we use complete pediatric)
Good thing I have 2 "forklifts" to help me get it all up the stairs and into Annie's closet!
Subscribe to:
Posts (Atom)