Saturday, October 29, 2011

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.

Wednesday, October 19, 2011

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.

Monday, October 17, 2011

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!

Sunday, October 16, 2011

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


Photo op with Mommy

Thursday, October 13, 2011

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!