Welcome 2011

I am anxiously awaiting all that 2011 holds for us.  As for resolutions I think I'm going about it a little differently this year, I'm going to try goals instead.  For me I think they will be easier to obtain - sort of baby steps that I can take throughout the year to better myself rather than having 1 stellar week in early January and then being angry with my self for failing.  My goals are going to have a common theme and that is "Thankfullness"!

There is a local radio personality here that has spoken a few times about how his family went through a time when they were in severe poverty.  They had a roof over their heads but there were nights when all they had to feed their kids was plain dry toast and water.  Throughout this hardship he recalls that he and his wife were determined to not let it take their spirit.  They stayed positive and hopeful and above all else they always stayed thankful for the things that they did have.  Years later, when the hardship was over, they were in a better place and their kids were grown he asked his children what they remember about that time of poverty.  Their answer surprised him.  They didn't remember being broke and going without, what they remembered was that they spent every night together as a family,  and that their mom made really great toast!

When Rett Syndrome entered our lives 4 1/2 years ago so many dreams were shattered, so many hopes for Annie and our entire family were crushed.  Since then we have made new goals and have discovered exactly what matters in life.  Rett Syndrome has stolen a lot from us, especially from Annie but even with all that has been lost we have always had so much to be thankful for.  I want my kids to realize that as they grow and live not everything will be perfect, things go wrong, hopes and dreams die but new ones take their place.  Above all I want them to know that one of the most important things in life is to be thankful.  If their hearts are thankful happiness is sure to follow.  I pray when my kids are adults and look back on their life growing up that they don't remember rett syndrome and sickness but rather the "toast".  Here's to a wonderful New Year, one full of blessings and miracles, signs and wonders and a new chance to discover all that we have to be thankful for.

Christmas 2010 - A Success

As rough as December was on Annie (and me) I have to say that this was one of the best Christmas's EVER! I'm not sure why, maybe it's because the couple days of leading up to Christmas Annie started feeling better and we saw some easier days or maybe it's because we have been dealing with rett for so long that we are starting to (dare I say the words) get used to it?? Who knows, but at any rate we had a great time!

Annie's GI pain eased up a little bit over the Christmas weekend but she was still off and on at my moms big Christmas Eve party. What's weird is that it didn't really upset me too much. I think it's because I just let go and decided that instead of holding her and trying every trick in the book to make her happy only to fail and get us both frustrated I just passed her on to Scott, who passed her on to my sister, who passed her on to her husband. I got a chance to chat with the rest of the family and I think Annie was much happier being around everyone rather than just staring at my stressed face.

Chirstmas morning Annie was the first one up but quickly fell back to sleep after snuggling with mom and dad. Gracie was next and shockingly James was last. We headed downstairs at which time Annie became irritated. Instead of forcing the issue and making her do hand over hand to open her gifts we just wrapped her in a down comforter and let her relax. When she was ready we had her look inside her gift bags. We used 2 huge gift bags and put all of her gifts in there together so she didn't have to deal with wrapping paper and using her frustrating hands. We had breakfast and then took her down into the play room to see her big gift. We set up a canopy with Christmas lights (she loves lights), a flying angel and big comfy pillow - "Annie's special place". She layed on her pillow to look up at the lights and fell right to sleep - she loved it!

Christmas Day we headed over to my in-law's house. Annie was not overly thrilled but seemed comfortable for the most part. (I LOVE this picture of her beautiful face. I really need to get some solid color arm braces though, sometimes they can be a bit "busy" - red would have been nice against the black dress - oh well, maybe we won't need them at all next year!).

Christmas 2010 was a success. Leading up to it, not so much, but we were blessed to be around lots of family. There are so many things that we have to be thankful for and sometimes I loose sight of that when the stress gets to be too much. I'm not sure if the New Year will bring less stress but I am hoping that I can use this December as a way of learning to cope with it better.

This post was mostly about Annie but we have 2 other kiddos here that thoroughly enjoyed Christmas! Here they are jumping up and down on Christmas morning!

Gracie eating a "Happy Birthday Jesus" cupcake

Grammy got Gracie a puzzle, she loved it so much she put it together and then hugged it! Silly girl!

James didn't even sit down to open his gifts!

An Annie Update

So it's no surprise to our regular blog readers that Annie is battling GI issues. For those who aren't familiar with our sweet Annie's battle I will give you a little background - without rewriting the whole story! Annie was born perfectly healthy and normal, she was such a quiet and tiny little girl that we literally had to set an alarm to wake up and feed her at night. She wasn't a big eater but would eat when she was hungry and tolerated her feeds well. At 9 months it was as if someone flipped a switch and Annie started screaming louder than we had ever heard before, she started refusing feeds and got to the point we wondered if she would dehydrate because she was taking in such little food (this we now know was rett syndrome taking over her little body). Since this time we have struggled with feeding Annie, keeping her weight up, keeping her digestion and absorption in check, reducing her reflux and battling gut pain. We've tried different diets, been through countless medications and tests. In April of 2008 Annie went in for surgery for her g-tube to help with her weight and to possibly allow for a way to relieve gas pressure from her stomach. This has been a blessing but not a "cure all". Annie continues to struggle with constant gut pain and lately that pain has increased. For the past 2 1/2 weeks Annie has been spending most all of her days moaning in pain. The pain increases when she eats (or when bolused) and she screams in pain for upwards of 2 hours 10 minutes after eating. We typically see this behavior for about 1 week every 4 to 6 weeks - the screaming lasts for about 4 to 8 hours a day every day for a week. There's no reason for it and then it subsides as mysteriously as it came one. We have never been able to figure out the actual source of the pain. The pain went on for over a week and got so bad that it was keeping her from doing her therapies and even tolerating being on her computer.

In the past we have had docs throw up their hands and say they were sorry but didn't know what the problem was or how to solve it. We've had others docs who have questioned if it was GI pain, still others who have said, maybe its neurological and she's not really in pain (ummm, no.). We remembered that our local GI had suggested a certain med and praying for a little relief for our sweet little girl we called to ask for it. Instead of prescribing it he ordered a new test. This one was suggested by the GI we saw in NY it was a gastric emptying test. Of course we took action. Honestly, not that we want our child to go through more testing, but it was a glimmer of hope that we might gain more insight into Annie's pain and actually find some treatment. We got the results today, the GI said I have good news and bad news, the good news is that Annie's test was perfectly normal, but that's also the bad news because I am out of ideas and don't know how to help your daughter. I really have great respect for this doctor. He listens to our concerns and really seems to love our little Annie (its hard not to love her). For him to say that he has tried everything, I believe him. I asked him about the neurontin and he said it's worth a shot but that a neurologist would be better equipped to follow her on the med. So now we are on a mission to get ahold of our neuro and get Annie started on this med in the hopes that it may allow her some relief and increase her quality of life.

I FOUND IT!

My Christmas spirit. That joy of the Holidays, being around family and friends, I found it! Over the past month I have been through a rush of emotions. Starting Dec. I was thrilled that it was getting close to Christmas! I was hopeful. That feeling quickly turned to sadness, then anger, then bitterness. I know a lot of special families have the same emotions, maybe not all in just a couple of weeks like my crazy head but we all experience emotions and I really think we are entitled to them (except the bitterness, I hate that emotion, I don't think it's human and I hate to admit that I feel it at times!). If you have been around me lately its really not anything you could have missed. I have to admit I'm the person who wears my heart on my sleave. Can't keep anything hidden no matter how hard I try, if I'm angry it comes out, if I'm sad the tears run, and I know that my broken heart was shown all over my face for the past few weeks, I haven't been the easiest person to live with. I'm typically a strong person, one who can endure quite a bit. I'm a realist, I look at the big picture, figure things out and press on. That wasn't me this past month. I caved, I gave in, I allowed the enemy to win. The sadness and reality of rett syndrome got the better of me. Knowing that sweet little angels were finding their way home, and fighting for their life at even younger ages then my Annie was just too much to bear. I found myself looking at people and thinking "what could you possibly be sad about?" (I know, bitter right?). I have to say that the Lord showed me quite a few times that I was not the only one suffering. People who I had know reveiled to me burdons that they were carrying that I didn't know about and I have met others who have had more on their shoulders then most can even dream about. It reminds me of something I read: - the quickest way to forget your troubles is to help other people with theirs - . Through this state of bitterness I held on to that thought and I have tried to pick myself up with it and you know what, it worked!

This week I have found my entire outlook changing. I'm excited for Christmas! And its not because we are in a good place "rett wise" (Annie is actually having a very difficult time right now and same as in previous years she will not be able to tell us what she wants for Christmas, open her gifts on her own or smother us with hugs and kisses after opening her favorite gift). Some how that doesn't matter, some how there is actually something bigger, something that is carrying us through and lifting our spirits. I think it's the fact that we are focusing on things that are more important than us, not dwelling on our problems but instead looking at ways we can help others. That's it, that's the spirt of Christmas! Now if I can only remember that for next year and skip the whole "bitterness bit".

In that spirit of Christmas here is some video I took of James and Gracie at their school Christmas celebrations (Annie unfortunately didn't have a school Christmas party) because there is no way that you can hide a smile while children are singing Christmas carols!

Stepping it Up

in leu of the last post and Annie's very fragile bones we have stepped up our weight bearing exercises - I'm optimistic and willing to try everything but honestly Annie is very active and on her feet quite a bit during the day (health permitting) so I don't think it's the weight bearing that is lacking, but it's worth a try! So, in addition to Annie's normal daily routine of stretching and strengthening we have added an additional 1/2 hour of pure static standing each day. We tossed around the idea of getting a stander but Annie can stand unassisted and I don't want to take that away from her. She stands very well, we are working on posture and alignment and I think you can tell from the video that she is getting straighter. She struggles with balance but can usually correct herself and stand the full 30 minutes without so much as a break. I do have to be within arms reach because if she were to fall she has absolutely no protective reflex so she would timber and land flat on her face - ouch!

If this video doesn't play click here. Sidebar: (notice in the video only 1 arm brace and the unbraced arm does NOT go into her mouth, not even once in the full 45 second video!!! YES! For 2 days now we have been able to go completely unbraced for a couple hours with only a few "out please's!)

Sometimes we have Annie stand with one foot forward we make her hold that position and then we have her stand with the other foot forward (almost as though she is walking with a long pause at each step) to work on the muscles it takes to walk.

Some of the other things we work on are standing on 1 foot - it's modified of course - we use a round, squishy disk - Annie bends her knee and puts one foot on that and weight bears on the opposite foot - she can put some weight on the disk but since its squishy its unstable so she would topple if too much weight was on it.

If this video doesn't play click here

This exercise has been great for strengthening her hips which of course we need for the weight shifting part of walking. We have also been working tirelessly on sit to stand and stand to sit. We have a homemade bolster (rolled up remnant carpet with the carpet side out) she sits on that (which of course is unstable so just sitting causes her ab muscles to fire) and we go up and down and up and down - usually 3 sets of 10 or 15. We work on strengthening her glutes by putting her tummy down on an exercise ball and assisting her with lifting her leg up off the ball. We make her "walk" up stares at least a few times a day which is easy in a colonial when the play room is in the basement! And of course walking, Annie usually laps the house between 15 and 30 times a day (makes me a bit dizzy), in the summer she's able to make it all the way down the block and back and once all the way to the PARK! If there was one way to describe this child it would be motivated! Which is such a blessing!! For the most part Annie is only limited in what I am able to provide. We lost our respite care at the end of summer and I have yet to find anyone, even interview anyone to help out. Annie's not in school much, only about 12 hours a week and school provides very, very little PT and her goals in school remain extreamly inappropriate, Annie is far beyond accomplishing them. She is in in private therapy for 1 hour 40 minutes a week (split between 50 minutes of PT and 50 minutes of OT with the most wonderful therapists on earth!). Of which I am there with her to learn more ideas about what else we can be doing at home. It's difficult trying to single handedly be someone elses hands, feet and voice 24 hours a day when you are also called to be a mother to 2 other little ones and oh yah, a wife too (poor Scott doesn't get much attention these days, thankfully he understands the struggles) - this post was NOT intended to be a pitty party by the way.

I have hope for a cure, so much hope, really, I could honestly say that I would bet my life on a cure, the problem is when? I wish I had a magic ball just so I could know the date. I just want to see that light at the end of the tunnel. I could push through, I really could even if it was longer than expected I could make it if I could just put a timeline a figure on how far out we are. Unfortunately that's just not the way the world works (even though it should :). So I will wake each morning, down the coffee, and continue to put on pot after pot and grab my little girl and continue to work with her all day, every day to bring out what I know she holds inside.

After all, neurons that fire together wire together (to quote the GREAT Dr. Djukic) and if she doesn't use it then she looses it and looking at this beautiful, strong, sweet girl all I see is potential and Love in it's purest form (next to Jesus that is). Loosing it is just NOT an option!

I can do ALL things through Christ who strengthens me! Philippians 4:13

Score 1 for Annie! Wait.... not so fast......

Dealing with rett syndrome is the equivalent of constantly being on a roller coaster - I HATE roller coasters! I like things to be planned to the last detail, I like to know exactly what I'm in for. With Rett Syndrome there's just no idea what will happen next. Each morning I wake up to Annie's irregular breathing in the monitor and I wonder what's in store today? Is she going to be able to make it to school? If so am I going to get called to pick her up? If I do how am I going to pick her up when I have to get Gracie from her school? If she makes it through school is she going to have a melt down after school? It's a minute by minute guessing game. Annie could have the best morning and then have an afternoon full of screaming fits for reasons that I can't figure out. Or she could have the worst morning full of hours of moaning in pain (again, no idea where the pain is coming from), breath holding and tremmoring and then have an evening full of giggles and smiles. One day she seems so strong that she could actually, possibly take steps on her own, the next day she's so weak her legs are like jello and she can bearly hold any weight. It's a guessing game except there's no reason to guess because even if you're right just wait a few minutes and everything will change. I want to get off this ride but its useless, there's no stop button, not even a pause to catch my thoughts and regroup, its constant 24 hours a day and I DO mean 24 hours. The evening is full of questions as well, is she going to fall asleep before 11pm? If she does is she going to wake up at midnight? If she does what do we do? Give her an extra dose of meds or see if she can fall asleep on her own? What if she doesn't fall back to sleep? Should we turn off her tube feeding? Then she won't eat the next day and her weight is so fragile as it is but if we keep it on will it keep her up? What if she falls asleep in the morning at 4am or after do we send her to school? and so on and so on, the endless list of questions without answers and the constant wondering if I'm doing this whole thing right? Where's the book with all the answers? Why can't this be just a little bit more predictable? With every question and every outcome I become more and more unsure of myself, because of course with every decision there is room for doubt and there are always consequences.

One such example is constant in our lives, the issue with Annie's sleep (or lack there of) and her weight (which despite the tube feeding is still a shockingly low 29 pounds). When Annie wakes up in the middle of the night we typically turn off the tube feeding, somehow it seems to help but only sometimes and we're not sure why. It's one of those things on the list that you try just to attempt to get a few more precious moments of sleep. Soooo, if turning off the feeds helps then keep doing it right? Nope, now we need to play "catch up" to regain the calories we lost in the feed - to compound that issue if Annie doesn't eat at night, for whatever reason, she's not hungry the next day - pretty tough to make up those calories when the girls not hungry. Bolus her durring the day? Good thought but a bolus sends Annie screaming for hours - not sure why, no one can figure that out. What about keep the tube feeding going even if it means lack of sleep? Think about having a new born baby awake a few times a night to eat for the first couple months of life. How tired a new mom is the rest of the day - take that and multiply it times 5 years - that's how long Annie's had sleep trouble - we're TIRED! The whole situation is a catch 22.

So today in the mail we got Annie's scoliosis report. We were thrilled earlier this week when we heard that her scoliosis is now at an undetectible curve!!! YES!! Score one for Annie! Take THAT Rett Syndrome!! We were at an 8 degree curve 2 years ago, then down to a 6 last year and now undetectible!! Awesome right?? Well, we thought so, until we got the rest of the story. Annie's bones are continuing to thin. You know the osteopenia you see in older women? When they fall and break their hip? Well, my 5 year old has that. The report says "diffuse osteopenia consistent with a chronic debilitated state" Rett Syndrome just tipped the scales again. And here comes the guilt - do I get her up enough? Is she getting enough therapy? Are they making her stand and walk at school? How do I stop her bones from thinning if she's been on bone suplements for 4 years now? The conclusion is that there is just no winning the battle. Oh, don't get me wrong, I will continue to do everything humanly possible for my Annie, I will give everything in me until I take my last breath. But, there's just no sense in fighting because it's not my battle and if it's not my battle how can I ever win? This is God's battle, and all I can do is make my requests. God's in control of the situation, in control of all that goes on inside Annie's body and my job is not to fight but to listen. Listen closely to that still small voice that says "She's mine, I've got her". Its so easy to get caught up in all of the chaos, all of the questions and the constant worry and quilt. Today I just need to remind myself to sit down, calm down, and listen. God will direct our next step, He always does, without fail, as long as we let Him.

.....‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s. 2 Chronicals 20:15