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

Acceptance

About a year ago I ordered a pair of arm braces for Reagan to minimize the amount of time that she spent "mouthing".  I remember discussing it with my husband because it was such a big deal for us, a sense of defeat overwhelming us as we restricted her arms so that she could be fed and have better focus.  I only ordered one pair because the mouthing was going to stop soon, or so I had convinced myself.  You see, she wasn't mouthing because she has Rett Syndrome, that would be ridiculous.  She did this new thing with her hands because her tongue was itching from allergies, or her reflux was bothering her because we had not yet started her on medication. It is all so funny looking back at how hesitant I was to enter the world of special needs.

In stark contrast, today I ordered 2 sets of arm braces because it was most cost efficient for shipping charges.  Yep, I realize the hand movements are not going to stop because it is definitely a RS characteristic and truth be told, Reagan has Rett Syndrome.  Last week I made two other big accomplishments to move forward.  The first was that I finally mailed off the order form for Reagan's eye gaze communication system.  I have only been procrastinating on submitting the order form for 4 months or so.  The second was that Reagan's physical therapist and I started the process for getting her a wheelchair (after jumping through many hoops we should have it in the next 3 months or so).  I could get her a jogging stroller but what is the purpose, so she doesn't look like a special needs child?  She needs the support of a wheelchair and something that will grow with her over the next several years. Check and check, let's move on to the next task.

I am not writing about all the things crossed off of my ever growing "to-do" list to toot my own horn.  Rather it is because I had an epiphany today when ordering the arm braces that I am finally accepting the world of special needs.  I know, crazy since it has been our world for 16 months but I guess I just resist change.    I think that so much of this past 16 months has been a roller coaster ride in which surviving and putting one foot in front of the other was the daily objective.  I feel that I am in a different place and that it is much easier than this time last year, just as my wise friends that have older Rett children said.  It definitely still hurts on some days and pushing forward can be hard.  I still always have to look away and distract my emotions when I see two small sisters walking side by side with their parents and the thoughts invade my mind that it should be the image of our family.  I know that I have not reached full acceptance in the grief cycle and not sure if that will ever be accomplished.  But I feel that I am spending more time in the area of acceptance before cycling back through some of the other nasty emotions, such as denial and anger.

IRSF Annual Family Conference

We took a little getaway to Boston the weekend of Memorial Day to attend the 27th Annual Family Conference hosted by the International Rett Syndrome Foundation (IRSF).  I have spent the last week trying to wrap my head around everything that I learned!  

The keynote speaker was Dick Hoyt of Team Hoyt with his motivational message of "Yes You Can".  Dick and his son, Rick, have run over 1,000 races together, including marathons and triathlons.  That in itself is amazing but their story is even more significant because Rick is disabled and in a wheelchair, relying on his father to push him, carry him, pedal him and even pull him in a boat to compete in their races.  They have faced many challenges and have never given up, a truly inspirational story!

We received exciting news about the IGF-1 clinical trial that is currently in Phase 1 at the Children's Hospital in Boston.  The scientists gave a vague update but the general consensus (since it is still in the early stages) is that they are very optimistic about the results!  IGF-1 could have a large impact on the breathing irregularity and digestive issues in Rett children, which would greatly improve their quality of life.  Their is even hope that this drug will also reduce the other symptoms that make life so complicated for our girls!

And if that was  not enough fun and excitement then the communication sessions that I attended that showed numerous videos of how successful our girls can be communicating surely put me over the top!  The first thing that I did when I returned home was send off the order form for Reagan's communication device that I have been procrastinating on submitting for several months.  It should be at our front door in less than three weeks!

Last but not least were the fun times that we had sightseeing around the Boston area, once again seeing the Rett Moms that are my friends that make this journey so much more bearable, and meeting more Rett families that understand what a day in the life is like for us.  It was a great trip and we are already looking forward to attending next years conference, especially since it will be held in my hometown state of LA (New Orleans!).