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'!