Fox 2 News and Barnes and Nobel Fundraiser

Brian Dalton is an 8th grade teacher at West Middle School.  He has an amazing group of kids that are putting together a fundraiser at Barnes and Nobel this Friday.  All proceeds from purchases on Friday night will go to Girl Power 2 Cure for Rett Syndrome Research!  This is the second year that Mr. Dalton's 8th graders have been working to fund a cure for Rett Syndrome and we couldn't be more blessed.  This year Mr. Dalton got Fox 2 News to come out and do a story about Rett Syndrome and the fundraiser the video is below.

Eight Graders Raising Money for Rett Syndrome Research: MyFoxDETROIT.com

If you are in the area please stop by Barnes and Nobel on Friday from 6pm to close all proceeds of the sales that night will go to Rett Research.  If you're not in the area you can still help by going online and buying off of the Barnes and Nobel website using the code below.


A HUGE thank you to Mr. Dalton and all the 8th graders involved!

Annie update

Well, its been awhile so I thought I'd give an update.  Unfortunatly it's not a great one.  Annie has been having a very difficult time lately.  She was back in the hospital on Good Friday with more seizures.  This time they lasted from 1pm to 11:30pm.  Stopping them was an issue since Annie is no longer able to have Ativan (what they typically give in the hospital to stop seizures) since last time her blood pressure dropped to scary numbers.  Thankfully we had our wonderful Rett Specialist, Dr. Sasha, via phone and she was able to tell the residents how to proceed with our sweet Annie.  We only spent 1 night in the PICU and were able to be home late Saturday night just in time to get ready for our Sunday Easter Brunch
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With seizures continuing we have increased Annie's meds.  It looks as though Annie is following a trend of having seizures every 3 months and once she has 1 her body is unable to stop having them.  Our plan now is to wait until there is another one (likely in July) and stop them immediatly with our rescue med.  I feel a little more at ease now that there's a plan.

Since this last hospital stay and really since about January Annie has just not really been herself.  She is much weaker these days, some days not able to stand at all and other days her legs give out after just a few minutes of being upright.  Screaming fits are at an all time high (OK, not regression high but high!).  We aren't sure of the reason for this but Annie is screaming for multiple hours a day every day now.  Her hips also seem to be giving her trouble, when she is standing she tends to guard her right leg (which has the hip that's subluxated 30%).  She has also taken a couple tumbles in the past few days, both on my watch (Great job Super mom).  Breath holding spells are also getting out of hand and her circulation is especially poor and is causing her pain. Lately we have also noticed what we can only describe as "crazy eyes" - she will wake from a nap or in the middle of the night, her eyes will open super wide and will dart around the room in a circle over and over and over again, sometimes her eyes will be in sequence and other times her right eye will look right and her left eye will look left - see, crazy eyes.  We aren't sure what this is, likely just a "rett episode" which rett parents will understand but possibly seizures in her sleep.

spent

Sleeping has been greatly increased as well which is a side effect of the medication.  This is both good and bad - the good is that Annie is sleeping through the night most nights and we have completely cut out benedryl (YAY!) and are decreasing her melatonin, which we were previously using to get her to sleep.  The bad is that she is sleepy all through out the day and when Annie gets sleepy she can only nap when circumstances are perfect which means we are at home, she is on the couch, no one can make a sound and depending on her mood that day she either needs to be left completly alone or she needs Scott or I to hold her and snuggle until she falls asleep, you also can't wait too long to put her down because then she's over tired but you can't put her down too soon because then she will just get restless and start to move around and won't be able to settle. Guess how often we can make circumstances perfect for Annie - Yep, hardly ever - guess what Annie does when she's tired but can't sleep - scream!  This is likely the reason for the crazy hours of screaming she is doing now.  Annie's weight and appetite have also increased, another side effect of the medication, which is also good and bad.  Good because Annie needed to gain some weight and an increased appetite means increased nourishment.  Bad because it is getting harder and harder for me to lift her, get her in and out of the car and up and down the stairs.  She is stll very tiny - only about 36 pounds but she is long and fluctuates between being stiff as a board and limp as a wet noodle - both are very hard to carry.

Look at those cheeks

Most of our days now revolve around making Annie comfortable, trying to figure out why she is screaming, feeding her and meeting her basic needs.  There's not much time left over for therapy, school work or spending as much time with James and Grace which just breaks my heart.

We are blessed that we have people around us that are always there to help, our wonderful Miss Lauren has been amazing, she loves Annie and takes great care of her, it's so refreshing to get a break twice a week to spend time with Grace or work in James's classroom and not feel anxious about Annie because she is in such great hands.  Of course my mom is always there helping out when she can and Miss Bev gives us a beak on Sunday mornings by taking Annie to bible school.  I don't know what we would do without this amazing support.

 Through it all we have not lost hope.  When Annie has a particularly rough day I hold her and tell her again and again about the amazing research that has just come out.  We have faith that this too shall pass and that brighter days are around the corner.  We know our cure is coming but it can't come fast enough for Annie's sake and for all of us.  The kids want their sister back, they want to play with her, Annie is just desperate to have some form of independence and Scott and I can't bear to watch our sweet daughter continue to suffer.  We are praying for a cure every chance we can and will be seeing some of our specialists over the next few weeks to see if there is anything else going on - ortho for her hips, neuro for possible VMR and GI because GI is always a concern.  Please pray that we get through this season quickly and that Annie bounces back to her strong, happy self.  Hopefully our next update will be about all the accomplishments our sweet girl has made!

"For I WILL restore health to you and heal you of your wounds, said the Lord".

I Wish.......

I Wish I could be dealing with a bratty 7 year old tantrum instead of dealing with screaming fits that last hours with unknown cause.

I wish I could be burdened by my daughters occasional restless nights sleep instead of administering 2 sleep meds every night and being pleasantly surprised at a full nights sleep.

I wish I could be talking to my daughter about a mean girl or the boy in her class that's teasing her rather than desperately trying to get her to tell me her basic needs through a computer.

I wish our trips to the ER were because my daughter was being a bit too fancy on the monkey bars and took a tumble rather than because of seizures.

I wish I could be meeting with my daughters teacher because her math skills need improvement rather than needing to home school her because the school system is unequipped to educate a child like mine.

I wish I could scold my daughter for saying a nasty word or for hitting her brother or sister rather than dreaming of the day when an actual word comes from her lips or a purposeful movement comes from her hands.

I wish I could hear my daughter complain about how much she hates what I made for dinner rather than having her obediently open her mouth while I spoon feed her.

I wish our nighttime routine involved a shower, reading time and then lights out (even if I find her later reading under the covers with a flashlight), rather than me having to bath my 7 year old, dress her, brush her teeth, read to her, administer meds and hook her up to her tube feeding.

I wish I could punish my child for crossing the street without looking both ways or running over to her friends house without letting me know instead of having to put my daughter in a wheelchair and pushing her across the street hoping we will find someone at the neighborhood park that would stop and say "hi" to her.

I wish I could be searching the Internet for a new recipe to make for dinner rather than searching for the latest research in Rett Syndrome.

I wish my oldest daughter could do her little sisters hair or pick out her clothes rather than the other way around.

I wish I could polish my daughters fingernails rather than searching her fingers and hands for callouses and skin breakdown because of all the hand wringing.

I wish we could be saving for a family trip or a new big flat screen TV rather than saving for the next needed medical device or an intensive therapy program.

I wish my husband could come home early from work because it's a beautiful day and we want to spend the evening as a family rather than coming home because it's only noon and I'm already in tears from a difficult day and he has to take over.

I wish a respiratory infection would bring the annoyance of a couple sleepless nights, steam showers, a pediatricians visit and a possible antibiotic rather than all of the above plus breathing treatments, dehydration, weight loss, labored breathing and possible hospital visit.

I wish there was a cure for Rett Syndrome.

I will continue to pray that all of these wishes come true but if they don't then I pray for increased strength for the difficult days, increased energy for the sleepless nights, increased resources to meet all of my daughters needs, increased peace to make it through the sicknesses and screaming fits and increased tolerance for the typical friends that complain about things I can only wish for.

More Special Than Special

For the past 6 months I have been trying to take Annie to a Special Needs Social Night.  It's held the first Friday of every month and it just so happens that those Friday's we have either had something going on or she hasn't been feeling well enough to go.  Last Friday I was thrilled to finally get her out and socializing.  She's had such a rough time lately and has missed lots of bible school, I just felt like Annie was dying to get out and have some fun.

Annie's helper was over that day and we started trying to figure out what would be the best form of communication for Annie while she was there - her computer, program her sequencer, use eye gaze, etc.  We started reading the flyer because it listed the things that they would be doing that night.  I was caught off guard as I read - "puzzles, games, dance party, pizza" and realized Annie can't do any of these things.  This was supposed to be a special needs social night and even at a special needs function Annie wasn't able to participate independently in anything.  For flippin' sake she wouldn't even be able to eat the pizza - 1 she can't eat independently and B she's gluten free!

Unfortunately the day was pretty bad and as we rolled into the evening it was clear Annie wasn't going anywhere.  I guess, in a way, it was a relief, I didn't have to worry about all that we couldn't do at the social night because we weren't even able to go.  What a let down.

The thing with special needs is that it covers a HUGE stretch of kids.  Ones that are incredibly high functioning that may have a little social or texture issue to those like my Annie - unable to do a single thing on their own.  This reality was all too clear when we were in therapy, Annie would be sitting in her wheelchair crying and I'd be holding up Yes/No cards in an attempt to figure out what was wrong while another mom was walking in with their kiddo skipping and singing and carrying their favorite toy - And of course that was the same kid who's insurance approved unlimited therapy sessions...... but that's another story.

Even within Rett Syndrome there is a huge spectrum, there are kids that speak a few words, kids who have retained hand function, and kids who can walk, even run.  Medical issues vary too, some kids are able to take all their nourishment in by mouth, others who have never  had a seizure, and others who have no issues with their bones.  Don't get me wrong, even the highest function Rett girl leads an incredibly difficult life and regardless of the issues these girls face or don't face this is NEVER an easy road but it's a pretty scary place when your kiddo has (arguably) the most severe and disabling condition and within that condition she is one of the most severe and disabled.  OUCH!

It seems there isn't really a place where we fit in.  On top of the medical and physical issues we are dealing with a kid who is very much aware of everything.  She is a typical little girl in a broken body which means she understands that she is the most severe of the severe and she is very much aware of all that her peers can do, all she can't do and how there really isn't a place exactly for her.

Next month we will once again try for the special needs social night.  God willing we will make it.  I  pray that we will be OK with just the socializing part and not the activities and that maybe we will meet another kiddo and parent that are more special than special just like us.

Thank you Rett Syndrome

Yes, you read that title correctly.  As much as I want and wish and pray to not have Rett Syndrome in our lives I can't do anything to take it away.  Today I realized that and was actually able to open my eyes up to the reasons why I am thankful for Rett Syndrome.

Scott and I were able to get out for a much needed date night last night.  We don't do date night weekly or even monthly or even every other month like many married couples.  For various reasons our lives just don't allow for that.   But yesterday we got out, and not a second of the 4 hours we spent together was taken for granted.  Thank you Rett Syndrome for teaching us how important our time together is.

At 6 am this morning a friend, whom I have only known for a little over a year now, was running in the Disney Princess Half Marathon in honor of Annie.  This friend had the idea to run and "pitched" it to Girl Power 2 Cure.  Team Girl Power 2 Cure was over 20 runners strong and raised almost $60,000!  Inspiration is contagious.  Thank you Rett Syndrome for inspiring others.  

This morning I got up to find Gracie piling pillow pals and stuffed animals around her sister.  Annie had been crying and she was trying to comfort her.  Compassion can't be taught, it is only lived.  Thank you Rett Syndrome for forcing us to live compassionately.

Annie was finally well enough to go to church today.  As we were wheeling her towards her class a little girl walked out, looked at Annie and said "Annie!!!!" and gave her a big bear hug.  I don't even know the little girls name.  Thank you Rett Syndrome for spreading that compassion beyond our family and on to everyone that Annie meets.

Make a Wish has graciously given Annie the opportunity have a wish granted.  2 volunteers came over today for a Wish granting ceremony.  Annie chose Disney World!  In the 8 years since we have been parents we have never been able to go on a family trip together.  Thank you Rett Syndrome for making a family wish come true.

Of course in a heart beat I would chose to take Rett Syndrome and throw it far, far away, out of our lives forever.  Of course I hate to watch my child suffer day in and day out for the 6 years that this disease has taken over her life and ours.  Tomorrow we will once again pick up our swards and fight against Rett Syndrome but while we're waiting for our victory we will choose to see the blessings our situation brings.

Rett Syndrome Comes Back for More

A couple weeks ago Rett Syndrome decided that it didn't have enough power over our little Annie and came back for more in the form of seizures.  Our day was eerily similar to what happened in October - Annie had an incredibly lethargic day that lagged on into the evening.  I got very worried about her behavior, going back and forth wondering weather to call 911, take her right into the ER or wait it out and see if I was overreacting.  And then of course during my hesitation she started seizing which I was semi prepared for, what I wasn't so prepared for though was the blue lips - that has only happened to her when she has choked (which happens all too often) or when her autonomic apraxia stops her wind pipe from opening and she is not able to take a breath.  The first thing that came to my mind was "She needs oxygen and we don't have any!!"  So of course we called 911 - thankfully Annie's color returned and we asked them not to dispatch trying to lessen the trauma to James and Grace.

When we got to the ER we were given a "room" where Annie seized again, and again.  Ativan was given and we were blessed to have the same ER doctor we had in October so we didn't need to reexplain our situation.  Of course meningitis wasn't even a thought this time but labs were still drawn since Annie seemed to be sick again this time (throwing up and lethargic even prior to the seizures).  We of course were admitted but this time just to the regular peds floor not the PICU (oh how we missed the PICU!)

That night was very eventful, after getting into the room at about midnight it wasn't long before Annie's blood pressure became a concern and we had doctors and nurses in every few minutes to check and recheck on her.  Her blood pressure was dropping into the 60's/30's which was more alarming then the seizures.  They started to push IV fluids which seemed to bring it up slightly but we were kept for another night to observe the BP's and determine if anything else needed to be done.  Of course we had x-rays and EEG's and EKG's and saw a large team of doctors and residents. We got put on keppra for seizure control and we slowly started to see our Annie come back to her typical self.  We were discharged on Sat. night, ready to get home but reluctant to be without the piece of mind of an automatic BP cuff,  monitors and the wonderful nurses that took such great care of all of us.

Annie is now on seizure meds for at least 2 years as long as their no more seizure activity which, unfortunately is very unlikely.  Scott and I are still adjusting to this new symptom.  The first thing that came to mind when I realized that this was going to be a long term thing was the fear of never seeing our Annie again.  I feared that seizure meds would cause her to be extremely lethargic and almost catatonic.  Of course I was fearing the worst.  We are still adjusting to the meds and there have been a couple dose changes so it's still hard to tell but for the majority of the day we are seeing our Annie which is a blessing.

I'm so angry at Rett Syndrome.  I wonder when it will ever back off but in reality I know that it never will, it will keep taking and taking until it has taken all of our sweet Annie and we will need to say goodbye.  I'm not ready to do that.  I feel as though I am literally in a race against time.  She deserves to be saved, all of the girls with rett syndrome do.  I have promised Annie that I will continue to fight with all I have until the scientists and researchers come up with something to help her.

I have been fighting with God about all of this.  Hasn't she suffered enough?  What on earth are the seizures going to prove that couldn't already be proven.  We have come to terms for the most part on most days about our sweet Annie battling daily with Rett why is she, why are we, being tested again?  I don't know the answers and I never will, another lesson I am forever learning.  I do know that there are a couple ways that I can handle this, become cold and hard and bitter and resentful which will almost certainly carry down to my children.  Or rise up, fight, pray, stay in faith, press on and do it with grace, dignity and a smile on my face.

 I'd like to be the person that does the latter but my heart is still very angry - angry because of the pain, the craziness it has brought to already fragile hearts, the extra stress this puts on us, angry about the people who aren't there for us, the ones who would rather look away and pretend they don't see, angry at all that has been lost.  Although as time ticks on I am hoping to see the joy in this, the compassion and strength it brings our family, the blessings of my family and our friends that are constant in their love and support, and the amazing joy we will feel when God releases our cure and we can say goodbye to this season of our life realizing that it was all a perfect plan.  I'm trying to get there, slowly, slowly, I'm trying to stay patient with my self and with others but it is a very trying process. 

"The only ones who rest in God are those who have wrestled with God... There is no tighter embrace than the grip of the wrestle."

Voskamp, One Thousand Gifts

The Uncertainty

This morning I walked into Annie's room and she was already awake with a sweet smile on her face.  She had slept all night long and had gotten her full feeding at night.  Hooray for a beautiful morning.  We got dressed, into the car and dropped the kids off at school - Annie was all smiles and happy noises - so was mom!  We got home and got right to work on a new app that I had put onto the ipad - Annie loved it and was doing fantastic!  After about 15 minutes she got sleepy - time for  her morning nap and my morning workout!  Honestly, could this day BE any more perfect?  Annie wakes up as I'm getting out of the shower and we start working on her stretches - Annie is so happy that now she is laughing out loud and we are just having a fantastic time.  After stretches we get on her braces and hop back in the car to pick up Gracie.  This is where things take a turn.  Out of nowhere Annie starts moaning and grinding her teeth.  I pray that she holds on for just 10 minutes so we can grab Grace and get out of the school before the full screaming fit starts - I know it's coming.  We make it, but the entire car ride back home was Annie screaming and kicking and Grace and I telling her over and over "It's OK Annie, we're almost home".  Annie's fit continues at home, I try to ask her what's wrong but her gaze is turned down, she won't look at her yes/no cards, I'm left to guess.  I go down the insanely long list of issues and give her every sort of comfort I can.  She refuses food, refuses to drink, TV, meds, snuggles, music, nothing calms her.  For my sanity as well as Gracies (and our ear drums) I take Annie upstairs into her bed where she continues to scream, kick and cry for 45 minutes.  When I just can't bear to watch through the monitor any longer I go upstairs scoop her up and take her back to the couch so I can try again to comfort her.  She kicks, screams, writhes in pain, bites, grinds her teeth and eventually calms down, exhausted from the fit, she passes out on the couch in her special spot.

Who could have guessed that such a beautiful morning would have such a terrible afternoon.  The uncertainty of every moment is one of the hardest things to deal with.  The unexplained moments of joy and laugh out loud happiness I'll take, but the unexplained moments of pain and suffering I could do without.  I'm left to wonder what caused the pain, where is the pain, is this really pain?  Although it looks like it maybe it's frustration or sadness?  I really don't have a clue and because I don't have a clue as to what it is there's no way for me to help her through it.  I've said time and time again that I will not let Annie's behavior dictate my attitude but it's much easier said than done.  When she's happy I'm thrilled and when she's in pain I'm in agony.  I'm not sure I'd be a very good mom if I could watch my child suffer and then just shake it off, although there has to be a happy medium here.

As Annie sleeps on the couch I take a much needed mental break and wonder what's in store for the rest of our day, what will she be like when she wakes? How will she feel at dinner and what time will she finally settle down for the night?  Nothing is ever the same, nothing is ever predictable, anything can change at any moment without any notice and there is nothing that I can do about any of it.  Such a hard thing to deal with.  I remind myself that there is no joy without pain, I just wish there was some distance between the two and it wasn't a constant back and forth minute to minute.  I press on knowing that as much as I'm hurting my baby is hurting so much more.  I think of that sweet, precious smile and that infectious giggle and I know that they will return soon and will be even sweeter having gone through the pain.  Annie's birthday is tomorrow, I'm praying her day is filled with so much happiness that the pain can't touch her.