We broke the weight mark!

It's been exactly one year since Reagan had surgery to get her feeding tube placed. Before the feeding tube, she was stuck between 24-26 pounds, we could never get over that hump. She had the surgery and immediately started gaining, her color changed and she looked so healthy. I recently looked back at pictures of her before the surgery and couldn't believe how thin she looked. I must have been in denial about her size as the idea of a feeding tube made me cringe.

Since the surgery, her weight has hovered consistently around 34 pounds. She had a lot of stomach problems for months with gas issues and I would have to back off of her feeds so she would lose weight, and then gain, but never break the 34 pound seal.

So I was completely in shocked and did a happy dance (much to the nurse's dismay) when she told me Reagan's weight is now a whopping 37 pounds and she is 43 inches tall at 4 1/2 years old! I knew that she felt heavier and she looks healthy, but I had given up on weighing her because it seemed to never change. That puts her BMI just under 15, which is very healthy. She is above average on both the typical and Rett Syndrome growth charts and I am hoping for no more illnesses that make her weight decrease. It's comforting to know as we go into Fall and flu season that she is healthier than ever!

Here is her sweet smiles before the nurse came back to give her 2 shots. :-(

Changes

Reagan starts her last year of preschool in just one week and although she will be attending the same school, she will have a new team. Only one of the assistants staying in her class from last year. I am excited about the change but with hesitation because of the unknown. I know she will win them all over with her beautiful smile and continue to disprove the stereotype that individuals with RS have a limited mental capacity.

Next week is also brings a big change for me. After being a stay at home Mom for 2 1/2 years (after Reagan's diagnosis and Lauren's birth), I am re-entering the workforce in a full-time position. I have been working part-time from home for several months so this is complete change of pace. I am so very excited about this opportunity and ready to once again have a focus on my career.

I don't worry about how this change will affect Lauren as she is already in preschool and enjoys her school, teacher, and friends. However, my biggest concern is Reagan and how I can work full-time and have her well taken care of also. She will need someone to care for her after school and all day on Fridays. Today was a total meltdown for me as I struggled with finding someone that can fill this role that will allow me to work. I had a complete "I hate RS" moment (or ten) over the frustration that RS brings to all of our lives. There are no centers in our area that are set up to be specialized in special needs care. So the only option is to find someone that can keep her at our house. The downside to that option is the cost will be higher, relying on one person to always be responsible and reliable, and then of course, finding that one person. I feel fortunate that we can cover the costs of having someone watch Reagan at our house, but I am anxious to have to rely on one person to care for her at all times.

I know that person is out there and that this will all work out. I know in the grand scheme of things that this is not a bad problem to have. But today I felt hopeless and frustrated, and we all have those days.

Superheroes

We took a weekend trip back to Texas for a getaway to visit with the cousins. The girls always have a blast on these trips and it feels like a mini-vacation, complete with jumping on hotel beds, pizza and princess movies, an afternoon in the pool, and lots of games of chase in the hotel hallways (sorry for those trying to sleep!). And no cousin reunion is complete without matching superhero capes!

I love this picture!

Superhero cousins

PJ party

Pool time!

So exciting!

Tante Erin and cousins Evie & Ellie

Loving on Grandpa

No doubt about it, this girl loves her PawPaw!

Dare to Dream

The phrase among our small Rett community today has been, "dare to dream" as exciting news on the research front has been announced by IRSF! The news came on a day when I needed a glimpse of hope, something to remind me that it is okay to dream of a cure for my girl.

I have learned that one of the many stages of grief is acceptance. It does not mean that I have to like Reagan's diagnosis, but on most days I go about our daily life and accept our new reality. It has taken about 2 years to get to this point. There were many days of crying over lost dreams for my daughter before I came to terms with her diagnosis. So it is a rare day lately that the "what if's" get me down as I try to keep those thoughts out of my head. But there are still days that it hits me out of nowhere and my heart breaks for my baby girl and last night was one of those moments. I was putting her to bed and just became incredibly sad and the tears started flowing.

Today the tears were for a different reason, they were for hope after reading this news update about the possibility of an upcoming clinical trial that will help children with Rett. Here is the link: Rett clinical trial information.

I took a break

I've been thinking all day about how I have not been writing in this blog much and sharing Reagan's story as I have in the past. It is not because I don't want to share and really didn't realize until today how infrequent I was posting or reading Rett related stuff. I think my subconscious forced me to take a break from all things Rett Syndrome. Obviously that excludes taking care of my sweet daughter that has Rett.

I not only stopped blogging over the past several months, but I also stopped reading the blogs. I feel like maybe I had an emotional shut down in regard to Rett and had to take a step away from all of it to get a clear head again. There is no doubt about it that having a child with Rett Syndrome can be (and usually is) overwhelming most of the time. There are the medical issues and concerns due to the multiple disabilities, there is ensuring that she is getting a fair and proper education, there is tending to her basic needs which are extensive since she is fully dependent on an adult for all of her needs. I didn't want to write about all the struggles we are facing and how overwhelmed I feel. I didn't want to read a close friend's blog and hear of the struggles that they are facing and feel so helpless that my Rett family is hurting. I shut it all out and stayed in a bubble.

But, now I am missing expressing myself, posting update and not knowing all that my Rett family is facing, the good and the bad.

Quick update - Reagan has started the night screaming spells again last month. They usually start around 2am and she can not go back to sleep afterwards. We are running a couple of gastrointestinal tests on Friday to start the process of elimination because the previous explanation/reason is no longer applying and it makes me so sad to see her in pain every night. Second, Reagan continues to love going to school and her therapists are working with her diligently on using eye gaze and switches. I am so thankful for the people that believe in her and continue to encourage her to do her best. Lastly, she also continues to get upset when we go out in public. I have concluded that she feels insecure in her wheelchair so we have ordered her a different type of wheelchair that is more similar to the past stroller that she used before the screaming fits in public started. Please keep your fingers crossed because we really miss going out as a family.

Happy 4th birthday!

Wow, I have been horrible at keeping up with this blog lately. It has been 2 months since Reagan's 4th birthday and I never wrote about it! If I had to guess, I would say that Reagan enjoyed her special day. She smiled big while we sung happy birthday to her, briefly tolerated using her switch to activate a happy birthday song on the computer, and then lost interest shortly after when we started opening presents.

It is so hard to believe that my first baby girl is already 4 years old and I will be honest in saying that I did not take it too well. Four just sounds so much older and officially makes her a little girl. I guess the sadness is because I want her to stay young forever in hopes of keeping more of the Rett symptoms from showing up or the existing ones from getting worse. I want her to still be 3 years old *when* the cure for Rett is found. I don't want it to be another year that has passed that the Rett monster has controlled her little body. Thankfully I think Reagan is happy most of the time and in the end that's what matters.

The birthday girl

Enjoying her happy birthday song

Time to blow out the candle!

using her switch to hear a happy birthday song

Opening presents and the end of her patience. :-)

Happy Valentine's Day

Aqua therapy

Reagan had her first aqua therapy session yesterday with a physical therapist and will be going weekly in the future.  I was really excited for her to start this type of therapy because she has always been such a water baby and she loved it!

Love this sweet girl!

Her beautiful smile truly makes my day, love her to pieces!

Our 2nd anniversary of "D" (diagnosis) day

My eyes well up with tears whenever I visualize myself answering the phone 2 years ago, on January 15th around 2pm.  I was 9 months pregnant with Lauren and home alone while my husband was at work and Reagan was with the nanny in the same office building as him.  It was only a few weeks ago that I could bring myself to throw away the sticky note that I had scribbled the words the nurse was saying to me, "genetic mutation on the x chromosome." What?  She continued to talk but I was no longer listening. 

Last year we purposefully planned Lauren's 1st birthday party on Saturday the 15th in an effort to hide the pain of the day and instead celebrate the life and joy that came on the 16th.  It worked okay.  This year we did the same thing, her birthday party was on Sunday the 15th.  I don't know what we'll do next year when the 15th falls on a week day!

I held it together for most of the day and pushed away the thoughts as quickly as they arrived.  I was getting her dressed after her bath when it finally hit me and I couldn't hold it back any longer.  The tears flooded and I  was overwhelmed with the feelings of pain all over again.  I hate crying in front of Reagan because it is not fair to her.  

Then a stuffed animal caught my eye that was laying on her bed, just a few inches from her head.  The bear was given to my sweet girl as a Christmas present from her grandmother's best friend.  The bear belonged to the lady's daughter, who was a teenager when she passed away almost 15 years ago from complications of cystic fibrosis.  I was touched when she gave the gift to Reagan, it was such a sweet and selfless act of kindness.  She said Reagan reminded her of her own daughter, who was also blonde, tall and thin.  

The sight of the gift reminded me to be thankful and appreciate the moments.  I could no longer feel sorry for myself and cry for our situation while my daughter was laying there and I could love on her instead, knowing that there are mother's who would give anything for the same opportunity.  Yes, I still feel the pain and the loss of the dreams that I had for my girl and diagnosis day is always going to hurt, some years probably more than others.  But I am thankful of the gift this mother gave me, the gift to treasure each day.

I've decided that he should sleep in her bed and be her guardian angel.

Belated Christmas pictures

We had a wonderful Christmas that was relaxing and quiet...absolutely perfect!

Lauren in my attempt to copy a neat picture that I saw pinned on pinterest

Reagan and Lauren

Second cousins

Christmas Eve, of course in matching shirts

a kiss Christmas morning

happy girl

silly!

The mystery pain

Several months ago I wrote about Reagan waking up many times during the night with screaming fits, seemingly related to stomach pains (read about it here: sleep issues).  We visited the emergency room, received a diagnosis of trapped gas, stayed for 24-hours, and happily went on our merry way.  I was relieved that it was not more serious and that she would finally have some relief.  Wrong.

After a couple of weeks of peaceful nights, it started again.  The majority of nights she would wake up anywhere from 2am to 4am, screaming and was difficult to console.  She refused to sleep once she finally calmed down so we were all exhausted.  Other nights the screaming would be every 3 hours, starting about an hour after she went to sleep.  It was not only night screaming, the screaming would happen during naps as well.

I tried almost everything to find the source.  We changed her g-tube formula 3 times, switched gas relief medicines, switched constipation meds, increased constipation meds, switched gas relief medicine again and finally visited a new GI doctor to do an Upper GI scope to make sure her Nissen fundoplication had not slipped or was too tight.  Nothing helped.

In mid-December I realized that I had changed so many things that I no longer had a clue as to what might be helping and what was adding to the pain.  So, I went back to the beginning and switched all her meds to how they were before the pain ever started, which also included starting her back on Nexium for reflux (something the fundo is supposed to prevent).  And then I waited, and waited.

I am happy to say that 2 weeks later she finally felt better.  It was magic, she just started sleeping again and woke up with a smile!  I have waited to post about it in fear that putting it out in the universe would jinx it.

I still do not know what was going on with her little body and what the magical fix was.  My instincts tell me that it was reflux because it was the last thing that I added back (after 4 months of being off) and her spells were classic reflux symptoms that she experienced before we started the meds.  I am too chicken to experient and take her off of Nexium because let's be honest, Mama likes her sleep!

Untitled

Today a FB friend (and someone that I respect a great deal) made a status update about a book called "Bittersweet: Thoughts on Change, Grace, and Learning the Hard Way", by Shauna Niequist.  I wrapped up the book I was reading last night and was searching for a new book, so I read the online description. 

I knew this was a must read for me and would help with how stuck I have been feeling lately after reading the following description: "Bittersweet...It's the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul. Bitter is what makes us strong, what forces us to push through, what helps us earn the lines on our faces and the calluses on our hands. Sweet is nice enough, but bittersweet is beautiful, nuanced, full of depth and complexity. Bittersweet is courageous, gutsy, audacious, earthy."

Wow.  I immediately loaded this book on my e-reader and dug right in once the girls were down for their nap.  And then I stopped after about 3 pages so I could digest her words that were speaking to me loud and clear.  It was all too familiar when she wrote, "For most of that season, I was clenching my teeth, waiting for impact, longing for it to be over."  Yep, I know that feeling.

For the past two years, I go through every day of my life with the following thought, "if I can just hold on until tomorrow, next month, next year".  I am walking through my life while holding my breath, afraid to exhale for fear that I will no longer be able to keep it all together.  I am on auto-pilot.  For the past two years, the Rett Syndrome monster has won.  It has taken over my life and rendered me incapable of living.  There have been weeks or months when things were going well and I started to feel a little again but then bam, out of nowhere I am pushed deep down again and realize that I am still holding my breath.

It is no surprise that I am not a huge fan of the holidays.  I wrote a post on this blog at the beginning of December and titled it "bitter".  After the holidays and the New Year, I continue to hold my breath because it is the month of January, the month when we received Reagan's diagnosis.  I continue to try to focus on the birth of our second daughter, also in the month of January, instead of the ugly "D" day, but the thought of "is it February, already".  

It might take me months to get through this book because I intend to read it slowly and deliberately, letting each word hang out there.  I am hoping that this is the beginning of my journey in finding the balance again and learning to live my life to it's fullest.

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!