Holiday cards

I apologize in advance to all of you  that will be anxiously awaiting for our holiday cards this year (insert sarcasm).  Last year we had a wonderful photographer that took some great pictures of our family for holiday cards.  Although the pictures turned out great, the amount of stress and anxiety it caused was more than I could handle this year.

I thought that I could reduce that stress level this year by just snapping a few pictures of the girls and throwing them on a card, stamp and then done.  Wrong!  Here's what ya' got instead:

It started with Lauren not being impressed that Reagan was sitting on her chair.  "Mine" is her new favorite word.

Okay, we give but that doesn't help because...

This is what you get, completely unprompted response of a 2 year old.  At least Reagan thought she was funny.

A hug goes all wrong

A lens cap given to a 2 year old as a means of distraction because food.

Sealed with a kiss, too bad it's not holiday card material.

Bitter

Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns all clean. –Maya Angelou


I am not generally a bitter person, rather I work hard at keeping it under control.  I try to maintain my focus every day on the positive and the tasks at hand, instead of getting overwhelmed by the big picture.  The big picture is daunting, because it involves how Rett Syndrome will play out over the next 10, 20, 30 years.  That scares me to my core.  So, I choose not to think about it and focus on the day to day on how to care for Reagan and overcome the monster that has taken over her body.


But, earlier today it got the best of me.  It's not something that I am proud of but this is my space to express the frustrations of our journey with Rett.  I usually tend to push those feelings down deep and put on my "I accept it" face.  I was not sure why today was different and it was not until after a good workout, a glass of red wine, and an even better cry that the deeper reason for my bitterness hit me.


This time of year is especially difficult.  The Holidays have me longing for my daughter to be able to use her hands like a typical 4 year old to play with her Barbie dolls that she opens on Christmas morning.  It makes me ache to hear her voice speak to Santa when she sits on his lap.  And besides all that, it's a reminder that just two years ago during this time we were anxiously waiting to hear back from the Geneticist on the outcome of the test that would forever change our lives. 


So, this is one last post to put it all out there because tomorrow we are back to our normally scheduled program of "I am coping well".  Stay tuned for happier posts and cute pictures!

Statistics

Some little known facts about parents/caregivers of special needs children (courtesy of National Family Caregivers Association):


*More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.


*Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. 


*Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver's life.


*The divorce rate for parents of special needs children is reported to be as high as 80%.

I have the same worries as every Mother:  the mundane things like grocery shopping, laundry, and paying the bills, as well as the bigger worries of money, well-being of my marriage, and health of my children.  However, as a Mother of a special needs child, I also advocate for my daughter's right to an education, dispute the insurance company's refusal to cover the costs of my daughter's necessary medical supplies, and ensure that the doctor's office called in that prescription because my daughter can not miss one single dose.  

Then there is the daily grind of caring for a special needs child:  the lack of sleep due to a child that wakes up screaming throughout the night, the physical demands of caring for a 35 pound child, the constant measuring of medications, and the worry about their future with a rare neurological disorder.

So with all that taken into consideration, why does it always feel that things are stacked up against parents of special needs children?  The school systems rarely make it easy for an equal education, the doctors' nurses need to be constantly called, the agencies that are set up to assist individuals with special needs are understaffed and running out of funds.

Today I am bitter and angry.  I am fed up and exhausted.  Today I want to quit.  Today another girl lost her battle with Rett.

"Be kind, for everyone you meet is fighting a hard battle."  Philo

x

Update on sleep issues

After too many weeks of listening to my baby girl scream in pain night after night, I followed my intuitions and did some internet research to see if I could determine the source. You see, I was foolish for those first 3 weeks because I listened to her doctor when she told me she felt that Reagan was feeding off of my high level of stress and therefore anxious, and that was causing her to wake up at night.  This doctor went so far as to tell me that I looked "worse for wear".  Well, I guess she does not know first hand how tireless it can be to raise a special needs child as well as a typical 2-year old.  Yes, I am tired but I do not generally put my stress off on my children.

Okay, vent over and back to the update.  This same doctor encouraged me to take Reagan to the emergency room immediately to have her examined after I called again to say the pain had continued and I was concerned.  Taking a child to the ER is another newbie for me so it sent me into a state of panic because it made me so concerned for my daughter's well-being.  After some lab work and x-rays they found the source of pain, a gas bubble trapped in her lower intestines that was causing a blockage.  The solution was simple but involved another hospital stay.  The only way to decrease the size of the gas bubble so it could pass was to shut down the GI system, which meant hooking Reagan up to an IV to prevent dehydration.  They advised that it would take about 48 hours, but thankfully we were released after 24.

I am so happy that it was simple and easily remedied.  My frustration is that once again I did not trust my instincts to realize that I know my daughter well enough to know a pain scream from a frustration scream.  I hold a slight grudge against the doctor who brushed aside my concerns but it was a good lesson in realizing that I am my daughter's voice and have to be more vocal in sticking up for her and pushing the issue when I feel strongly.

Wind in her hair

It was especially windy on this day and Reagan has *always* loved to feel the wind blow in her face so we spent some time outside soaking in all in.  I love how she gives me a genuine smile in these pictures, she is truly enjoying the moment!

This is her serious pose.  She looks so grown up to me in this picture, brings a lil' tear to my eyes.

Sleep issues

Reagan has been having some major sleep issues for the past couple of weeks.  We have experienced sleep issues a few times with her in the past, but never anything that has gone on this long or this intense.  She wakes up about an hour after going to sleep and is screaming, it takes up to an hour to get her to calm down.  She will go back to sleep and wakes up a few hours later and we repeat the above.  Last night she woke up again at 2:30am and I couldn't get her to go back to sleep so I turned on her tv and dozed off while she enjoyed her show.  Her normal wake up time lately has been around 4:30am, regardless of how much she wakes up during the night.  One of the most unfortunate things about having a child with Rett is that she can't speak to tell me what is hurting so it's a guessing game and a process of elimination.

The first few nights we thought it was related to stomach issues...maybe she has gas or is constipated, these are common occurrences so we focused on those first.  Her g-tube is still fairly new so we are thinking that we just have to work out the kinks.  Then the next step is maybe the new constipation medicine (Miralax) is causing her stomach pains so we switched back to lactulose.  Then she got sick with a fever and couldn't keep anything down for over 24 hours so we had to start the searching process over again.

Today she seemed to finally be feeling better after being sick so I was hoping that tonight would be the turning point.  But, instead tonight was the first night that i turned to medication to get her to sleep.  I know we have been lucky to not have many sleep issues yet since it is common in Rett girls.  I think the next step will be to call her neurologist and get a prescription for sleep medicine because we both need some rest!  Rett parents, any experience, advice, or input would be great!

Pumpkin patch 2011

We took the girls to the local pumpkin patch last weekend and Lauren had a blast while Reagan slept.  I wished that Reagan would have felt better and enjoyed the visit herself but I am also thankful that she slept instead of screamed (Rett parents, you understand, right?!?).

Lauren helping her big sister pick a pumpkin

loved watching the animals

pose time

Sister sleeping

bouncin'

Photo op with Mommy

The bond of sisters

Reagan was about the age that Lauren is now (20 months) when we found out that our new bundle of joy was going to be a second daughter.  I was overjoyed to be having another daughter, for my two children experience the bond of sisters that I never experienced growing up as an only child.  At that time, we were just beginning our search for answers on Reagan's delays, of course they were only delays then and not a life sentence of RS.  The diagnosis of RS would come 3 months later, a day before our second daughter was born.

There are so many dreams that are shattered with the news of a life changing disorder for your child.  Among those is the realization that my girls would not share all of those precious moments that I envisioned they would as sisters, less than 2 years apart in age.  They wouldn't fight over Barbie dolls, share a room with bunk beds, have sleep overs as teenagers, and eventually be a maid of honor in each other's weddings.  And honestly, typing out all that out still makes the waterworks flow more than ever because I still want that more than anything for my girls.

But, this is now our reality.  Rett Syndrome is part of our daily life.  My girls have a bond that is different than most typical sisters at their age (approx. 3 1/2 and 1 1/2) but they have a bond nonetheless.  Reagan finds amusement in Lauren's silly ways (as well all do!) and will often let out a giggle in response.  She is patient when Lauren climbs on her and invades her space because she wants to love on her big sister.  Lauren is more understanding and compassionate than I ever thought a child her age could be, always wanting to be my "helper" (her new favorite word) when I am giving Reagan a sip of juice, feeding her, or pushing her stroller.

I caught this moment on my phone's video recorder today so not only is it poor quality with a high volume, but it's sideways.  But, it is one of the most treasured videos that I now own.  These two sweet, beautiful little girls of mine are communicating in their own very special way.  You'll see that neither of them speak a word but communicate with gestures and body language, sharing a very special moment that makes me swell with pride over the love that they have for each other.  I would change things in a moment and give these sisters the chance to fight over toys in a second, but I still could not ask for two more loving sisters that share something special.

Family outing

We took a nice trip a couple of weekends ago to San Antonio to once again visit Morgan's Wonderland.  I know, this is like my millionth post on the theme park but we always have such a great time and I love sharing happy stories/pictures.

We got there early while it was still cool (cool to TX is in the low 80's) so that Reagan did not get overheated.  As always, we rode the carousels first because they are so magical and they have special adapters that Reagan experience the ride like any typical child.  She loves it.  We played in the water attraction and then went in the sensory village to cool down.  Again, one of Reagan's favorite areas was the sensory room that is dark and cool with neat sensory displays on the walls and floor.  There were a couple of therapy dogs in the room and Reagan was immediately drawn to the Lab and giggled at him a couple of times.  Priceless.  Another great trip and another rare but wonderful family outing!

Sitting tall

Rett Syndrome is generally documented as having four stages, of which the second is called regression or rapid destruction.  Sadly, watching my daughter slowly lose skills that she used to do with ease has become such a common occurrence that I sometimes don't realize that they are lost until months down the road.  And that was exactly what happened when it occurred to me earlier this year that Reagan can no longer sit by herself, unattended, like on the floor or in a bathtub.  

I have plenty of pictures of Reagan sitting on the floor and then poof, one day I realized that she can't anymore and I don't know when it stopped.  It seems like it has always been that way but the pictures provide proof that  she was once a good sitter.  I talked to her physical therapist and we agreed that it is not because she lacks the core muscle strength, so we are not really sure the reason.  She has to be constantly moving and if she is sitting, that means kicking her legs, this might be difficult to do when she is in a sitting position so she lays down so she can kick.  Who knows?!?  

But, a couple of weeks ago I put her in the bathtub in a sitting position, knowing that within seconds she would collapse backwards and start kicking her legs in the water.  But, she didn't.  I sat there and just stared at her as she sat so pretty and straight in the tub, splashing her arms in the water and smiling.  She sat there for about 10 minutes and I just continued to watch in awe.  I don't know what changed, other than her recent g-tube surgery and being more round thanks to the additional weight.  It is such a big deal that I took pictures when she was sitting on the floor with Lauren.  These pictures are to me a reminder to not give up as well as to not take small things for granted.

so proud!

Lauren and Reagan

Daddy teaching Lauren to sit "criss cross, applesauce"

Three weeks post g-tube surgery

It has been 3 weeks since Reagan had surgery for a fundoplication and g-tube and I am very happy to say that she is doing well!  We were released from the hospital on her 6th day and sent home with supplies and instructions.  The transition home was a little difficult but we have since got the hang of things.  She didn't seem to have much pain from the surgery once we were home and the only problem was some discomfort from lack of bowel movement and also having a lot of gas.  We are still tweaking her medicine to find the perfect dose to keep her comfortable.

She went back to school this week and it has been a smooth transition. She was ready to go back last week, which was 2 weeks after the surgery, but the school district was closed all last week due to the devastating wildfire in our community that left many families without homes.  We feel very fortunate that our house was not damaged and our hearts are heavy for those that lost all of their belongings.  But that is a separate post, back to Reagan.  I haven't weighed her since the surgery but I can see that she has gained weight and she also seems to feel better.  She is more alert and has better use of her hands already.  She will hold on to my hand while we walk to class in the morning, which is something that she lost in the early stages of Rett.

The only negative was that it took her some time (and she's still working on it) to get her balance back and feel confident in walking.  She is getting better every day though and we have resumed her private physical therapy sessions in hopes of speeding up the recovery.

I am very happy that we chose to have the g-tube surgery and I am no longer stressed about going into the Winter months and fearful of her getting sick, then losing several pounds that she can not afford to lose.

Here is a picture that my Mom took with her phone a couple of hours before surgery:

And smiles again 5 days later:

G-tube update

Today is Saturday and we are 3 days post surgery for Reagan's g-tube and fundoplication surgery.  For the most part it has been very smooth sailing with only one minor complication the evening after surgery and going into the next morning.

She was in a lot of pain on Wednesday night and awake for most of the evening from 11pm to 7am the next day.  The morphine was not working as a drip so the nurse gave her a bolus of morphine around 3am in hopes of relieving some of her pain.  I noticed around 5am that her breathing became more shallow, there sounded like there was some fluid in her lungs, and she was still in pain (very concerning after all the morphine she had been given).  I had no idea what was wrong but told the nurse that I was concerned and to call the doctor.  Long story short, it was not until 7am when we called the emergency response team that our concerns were taken seriously and there were about 15 nurses and doctors in her room that were very concerned that her oxygen levels were below 80% and was not increasing with them giving her oxygen.  It was scary for about 2 hours as everyone tried to figure out what was going on with her oxygen.  The x-ray of her lungs showed spots not filling with air properly so they gave her 2 bronchial treatments and she finally started to breath easier and started to rest.  We were able to take her off the oxygen later that evening.  Our assumption is that she had a bad reaction to the morphine and that it slowed her breathing down.

She slept most of the day Thursday and Thursday night and started feeling much better on Friday.  We started the first tube feedings on Friday afternoon and she has been tolerating them very well so it is likely that we will be able to go home on Monday!

Here is the first smile that she gave me on Friday morning:

Surgery day

Thank you to all for the warm thoughts, well wishes, and prayers!  Reagan was a superstar today, from being calm during our 2.5 hour drive to Houston, to being patient (much more than Mommy) during the 4+ hours we waited for her surgery to start, and to having great anatomy (as her Dr. said, lol!) so that the procedure had no complications.

She has woken up once in pain because Mommy let the morphine wear off by accident, but promise that won't happen again.  She is sleeping comfortably in her bed and I hope that tonight goes smoothly for her.  Agains, thanks for all of the support and thank you to our amazing family for being here in Houston with us!

Here is a picture from her brief waking but after we got the pain back under control:

First day of school

Summer is officially over and I have survived with some small amount of sanity.  It was a very long and very hot summer for us and I am in no way sad to see it end.  Reagan will be going back to school tomorrow at a new school with an entirely new team.  Although I know that she will miss her old teacher and friends at the other school, she told me last night with a big smile that she is excited to go to school tomorrow to meet her new friends.  Her mom, on the other hand, has been very anxious and nervous about this new school and new team, hoping that they "get" Reagan and understand how Rett Syndrome controls her little body.  Time will tell.

"Spending Time Ending Rett"

Check out the IRSF Texas fundraising events featuring Clint Black and Kevin Black at http://www.endrett.org/.  I am so thankful to this family for their continued support in finding a cure for Rett and am excited to be a part of this year's events.  It is all going to be a blast and will be in true Texas style...BIG!  Clint also did a short video that you can watch here.

Please consider joining our Strollathon team, Reagan's Warriors, or making a contribution to sponsor us.  We appreciate all of your support!

Pool time!

Both of my girls have always been water babies, actually more life fish out of the water.  I love seeing Reagan continue to enjoy the water so much that she smiles and giggles.  I love that there is something we can do together as a family that we all enjoy so much, even when it is 110 degrees outside.  I love that I can get Reagan away from her favorite tv show for more than 10 minutes without a major meltdown.  I love marveling at Lauren's confidence and excitement when she jumps into the pool.  I love watching Lauren gain her independence as she tries to swim off by herself.  That's a lot of 'loves'!

The date is set

Reagan will be having surgery on August 24th in Houston for the gastric feeding tube (g-tube).  There are two things that are shocking to me right now: 1) that we are doing this procedure so early in her life, and 2) that I can not get past the emotions of having to feed my daughter by an alternate method.

Yes, I have read a lot about g-tubes and have heard a lot of personal stories from my Rett families.  I knew that it would be something we would have to do for Reagan eventually since it seems that at least 80% of children with Rett have a g-tube.  Yet, I thought she would be older before her eating declined this much.  It is bizarre to me that just 1 1/2 years ago she was feeding herself table foods, which progressed into us feeding her table food, and then soft food and then purees and now refusing almost all foods.  I was naive to think that we could do the temporary feeding tube and then coast on the increased weight for months until I came to grip with this decision. But we have only had the ng-tube removed for a week and she is already starting to slide backwards in weight.

I go back and forth between thoughts of 'this should not be something that my 3 1/2 year has to go through' and 'well, it's really not that big of a deal'.  I know that this is the right decision.  We must keep her healthy as possible until a cure if found.  Being underweight and malnourished leaves her more susceptible to getting sick, especially since she is in school and exposed to different germs.  Can someone please send my heart the message though?

Melts my heart

NG-tube update

I am in a funk and have been since we left the hospital with Reagan's ng-tube.  I find that the weight gain battles we are dealing with now are overwhelming and stressful.  I know the solution is to take one step at a time and focus on the daily goals but there is so much to think about that I feel like I am spinning my wheels.  I find that 90% of my day is consumed with thinking about Reagan's weight, even waking up in the middle of the night thinking about her weight.  I know that I will be able to shake this dark cloud soon but for now, I'm not pushing it.  Of course, the extreme heat and toddler that is cutting molars is not helping!

Reagan is still tolerating the tube very well, only getting irritated with it a couple of times a day.  The feedings are also going well and we are very pleased that she has gained about 4.5 pounds.  She seems to be stuck at this number though for the past several days so not sure if this is a plateau or just a stall.  We can visibly see the difference in her body mass and her coloring, she looks amazing and is happy most of the time lately!

We are trying to get in to see a local GI doctor to get a second opinion and also consider doing the g-tube procedure locally instead of traveling to Houston.  However, nothing is ever simple and it is taking a lot of phone calls and time to get her medical records transferred.  Either way, we are certain that a g-tube is in the very near future for Reagan.  I would be pleased if we could get her to an ideal weight and the maintain it for awhile.  But I am concerned that once the tube comes out, she is going to start slipping backwards in weight and we'll be right where we started 2 weeks ago.  Thank you for all of your support and everyone that has given such good advice and feedback!

Hospital pictures

I forgot to add my pictures from our hospital stay to the last post:

Waiting patiently at the Doctor's office

Finally in our room after being at the hospital for 11 hours

The next day, NG tube was inserted the night before...my superstar!

Lauren, my big girl with her backpack

Vacation, kind of but not really

Reagan and I just returned from an unplanned 5 day vacation at Texas Children's Hospital  in Houston.  Those unexpected vacations where you leave town with only the clothes on your back are always the most fun and exciting, right?!?

Here's how it all went down:  Reagan and I (leaving Lauren with a babysitter) left around 5am on Wednesday morning to drive to Houston for her semi-annual follow up with her Rett Syndrome physicians in Houston.  The team includes her neurologist and gastro-intestinal physician.  I was expecting it to be a long and busy day but had no idea what was really in store for us.  The neurologist visit went smoothly with the only surprise being his request to send us upstairs to x-ray for an EKG to make sure she does not have a long QT in her heart rhythm.  He wants to check annually going forward so no big deal.

Next on the agenda is her GI doctor where I was already expecting a stern lecture because of her lack of weight gain.  Her weight check showed that she was 27 pounds, which is down a pound from her last weight check in December.  I thought, what is a pound?  Apparently a pound is a lot, especially when you grow 3 inches in 6 months, because it throws your BMI (body mass index) out of whack because it is just a ratio of your height and weight.  Her BMI in December was 13.5 (The Dr. prefers around 15) and last week it was barely 12, which puts her in the less than 5% range when compared to other children her age.    I was spared the lecture and instead told that a nasogastric (NG) tube immediately was a necessity.  And she wasn't kidding.  She advised that we stay that day and be admitted to the hospital to have the tube inserted in her nose and then observed for 4 days to ensure her body did not reject all the nutrients she was getting from the formula.

There were a lot of emotions and thoughts involved in the decision to stay but in the end the decision was easy, it was what Reagan needed to be healthy.  After waiting for 6 hours, we were finally given a room at 7pm.  Reagan was exhausted from a very long day so she went to sleep not long afterwards.  It was the best thing because she barely even noticed the nurse inserting the tube down her nose at 10pm.  She has tolerated the tube and feedings very well and has already gained 2 pounds!  I am so amazed at what a trooper she was throughout the entire ordeal, letting them constantly take blood and do check-ups.

We were released around noon on Sunday and we were both ready to see our family and home.  Today is the first day of setting up her tube feedings on my own and so far it is going smoothly.  She will have the NG tube for the next 4 weeks in hopes of getting her weight up as much as possible (preferably to about 35 pounds) and then we'll remove it and decide from their if we want to move forward with a permanent feeding solution, like the g-tube.

A big thank you to my Mom for flying to Houston to help me!  It allowed Wes to stay home with Lauren and take care of her and me to focus all of my attention on making sure Reagan was getting the best care possible.

Holidays

I heard through the grapevine that it is a holiday weekend.  As usual, this holiday weekend is the same for us as any other weekend, with us doing a lot of nothing and staying around the house.  Why?  It is too difficult to do things that typical families do on the weekends, much less a holiday weekend when those same locations will be crowded and the settings more unpredictable.

Reagan is 3 1/2 and apparently in that stage/age of Rett Syndrome, not much can make your girl happy.  I can tell you what definitely does not make her happy, public outings.  Okay, maybe that is not completely true because there have been times when we are out and she is perfectly content.  But, those times that she is not burns such a hole in your memory that you forget all other positive experiences!  Maybe when she is 5 or 6 (which I've been told is the magical age of calmness for Rett girls) we will be able to do more family outings.  It will also be easier then because Lauren will be older and more independent and Reagan will have a wheelchair for when she is tired.

So, Happy 4th of July to all and don't worry, we'll celebrate Independence Day in our own way by firing up the grill and letting the girls play in the kiddie pool!

Just pictures

Here are a few random pictures that I think are fun to share:

Lauren discover the fun in sprinklers

Reagan during our visit at her cousins' house

how many kids can you count?

Lauren's first slip n' slid adventure

success!

fun with sidewalk chalk

my pretty girl with her Daddy