Tuesday, June 24, 2014

Summer Already!

Wow, I can't believe it is summer time already!  Zoe's last day of school is Friday and we are going camping on Saturday- great way to kick off the summer and keep Zoe distracted from missing school too much.  My very pregnant friend Angela is going to camp with us.  She has an almost two year old who gets along great with Ailsa.  The two of them love hanging out.

Pictures From Last Couple of Months

Zoe and Ailsa were flower girls at Riann and Daine's wedding in February.  Riann was Zoe's first respite worker when she was a baby.  Riann went on to get a full time job but we are still close with her even though she does not work for us anymore.  Riann and Daine took care of Zoe while I was in labour with Ailsa.  Riann was the first person (besides us and the midwives) who got to hold Ailsa.  Daine was too afraid because she was only four hours old!

We are rolling our eggs down the hill on Easter.  Don't ask me why we do this- it is some crazy tradition in Gavin's family :)  The girls thought it was hilarious.  Alan was at the bottom of the hill catching the eggs before they could roll in to the street.  

Riding the zoo mobile.  Both girls love riding around and looking at all the animals.  Zoe had just gotten out of hospital from pneumonia so we were taking it easy and not doing too much walking.  Someone gave us a pass for the zoo as a Christmas gift and it has been well used- we are going every other week and sometimes twice in a weekend!

Playing in the ball pit at Zoe's school on family pizza night.  You can see Zoe's purple legs sticking out- she loves to bury herself.  As you can see, Ailsa is still a little cautious in the ball pit.  Zoe LOVES the ball pit.

Summer Plans

Zoe will go to camp the first two weeks in July and then we are all going to the 1p36 conference in Cincinnati, Ohio.  We are very excited!!!!  We have not been to a conference since 2010.  The conference has really grown since it started back in 2007.

After the conference we are going to drive to St Louis to see Gavin and my families.  I have four sisters, a brother, and many nieces and nephews in St Louis.  Gavin has a cousin with his family and his Aunt Patsy (who Zoe loves because she talks in a "funny" voice to her and knows sign language).  We are so excited to see everyone this summer.

Our road trip does not end there- we are then driving to Chicago to visit a family we met camping in Kentucky five years ago.  We bonded over the craziness of camping in 100 degree F weather and cave spelunking with your special needs child strapped to your chest.  This family has four beautiful children (at the time it was three) and one of the daughters has Down Syndrome.  We are excited to catch up and let our children play together.

By the time we get back from our big trip it will August.  We hope to do a camping trip in New York with my cousin and her family from Massachusetts.  And we will probably squeeze in another small camping trip closer to home if we can.

The Big Weigh In

The great news is that Zoe has grown 5cm/ 2 inches in the last year and continues to thrive and develop.  She amazes us with her persistence in learning new skills every day.  Zoe can now finger feed herself and hold on to her cup for long periods of time!!!!  This is big!!!!

Zoe feeding herself cake and whip cream at Gavin's Birthday dinner.  See how the whip cream is actually near her mouth now!!!!  She is so proud of herself.

Unfortunately, we have noticed that Zoe has not gained any weight in the last 2 years.  She has actually started to lose weight in the last few months, so she now weighs less than she did 2 years ago.  We have added calories to her food but it has not made a difference.  Zoe is not able to eat a lot when she is at school.  She does a great job and the teachers try their best but Zoe does not want to sit there for 45 mins and eat while the other children play.  Zoe has never felt hunger like most people do.  She could go all day without food and would not complain (she has done this for medical tests).  When she sees her friends playing after they gobbled down their lunches, she clamps her mouth shut until the teacher gives up and lets her play.  Zoe has also been very tired in the mornings, so sometimes we are only able to get a very small amount of food in to her before school.  Some mornings we can not get Zoe to eat anything at all.  Zoe eats great at dinner time- she loves eating as a family.  We all finish sooner than Zoe but we stay at the table talking about our day and enjoying the together time.  So dinner is not a problem.  But Zoe only eating one good meal a day is a problem.

Why Does Weight Matter?

At this point, Zoe has used up all her fat stores.  She has grown in height and has grown even skinnier.  You can see every rib bone, hip bones, spine, etc on Zoe now.  Her legs have also gotten very thin and Zoe is not able to build any new muscle.  The fact that she is starting to lose weight tells us that she is out of fat stores and her body is going in to starvation mode.  Having fat in your body is also necessary for brain growth and function, good energy levels, healthy immune system, etc the list goes on.

So Why Isn't Zoe Gaining Weight?

We believe that Zoe uses an extraordinary amount of calories every day.  She is constantly moving, wiggling, playing, rolling, etc.  Even in her chair, Zoe is still waving her arms and legs around.  She loves to move!  In the past, Zoe was able to get enough calories in to grow at a nice slow- paced Zoe rate.  She has always been small, but she was always gaining on her own curve.  At this point, Zoe is not able to get enough calories in to support any growth and is now unable to even maintain her weight.


We talked to Zoe about various options- she DID NOT like the idea of the teacher pulling Zoe aside in a quiet area to help her concentrate on eating.  She DID NOT like the idea of going back to forced oral feeding we had to do when she was a baby.  Zoe loves eating and wants to continue eating but she is older now and wants to eat when she wants.  And she is stronger now so forcing her is almost impossible!

When we discussed the G-tube option (a tube inserted into the abdomen that delivers nutrition directly to the stomach) with the team, Zoe became quite excited.  She likes the idea of us using the tube to feed her when she is tired or too busy (Zoe's words- apparently she is too busy at school to eat).  Zoe will continue to eat with her mouth, the tube will be there to supplement/ give her more calories.  Zoe already gets nursing at school so this will not be a problem.  Having the tube will make it easier when Zoe is sick or dehydrated- currently we have to insert the NG tube in Zoe's nose and she is not a fan of the procedure.  Zoe had always been good about leaving the tube in place when she was younger but this last time, in April, she kept pulling the tube out.  She does not want it there.  The G-tube can be tucked away and not bother her.

Swimming and Baths

One of our big concerns was that Zoe would not be allowed to swim or take baths- Zoe loves water.  However, the team said Zoe will get a simple g-tube that is allowed to go in water once it has healed. So we are all happy about that.

We meet with the surgeon next Friday to find out when the tube insertion will happen.  We are hoping in August- that way it does not interfere with our trip and Zoe does not need to miss any school.  Because Zoe has been losing weight, they may not be willing to wait that long.  We will see.


Jeez, this is already a long post but I wanted to put an update about Ailsa.  I made this a long post because feeding issues, tube feeding, weight, etc are such a problem for 1p36 children.  I wanted to explain why we are getting the tube now so other families looking for info have it.  We have many posts on tricks for oral feeding (I feel like we could give a seminar at the conference!) so if anyone needs any info- just ask.

Ailsa has finally been given a diagnosis.  She has a problem with her kidneys that does not seem to be genetic or have any reason for being there.  At this point, we need to monitor her and she is taking medication to stop further kidney damage.  We do not know how things will progress but we do know this is a lifelong diagnosis and she will need monitoring and medication the rest of her life.


That is about all I can say about that.  I hate watching Ailsa get poked or taking her medication.  I hate that she already has some kidney damage and it can get worse...much worse.  I hate not being in control!  (Yes, I like to pretend I have some control over this crazy life of mine!)

Having said that, we know how lucky Ailsa and we are.  She is doing wonderful right now so we focus on that.  That is all any of us have- this moment.

Can you tell therapy is working :)

We hope you all have a great summer and we will post lots of pictures of our crazy adventures.  We are very excited about everything we have planned.  And we know everything always goes according to plan...

I love this picture of Ailsa giving her baby medication while I am giving Zoe her night meds.  Ailsa has a very strange idea about what is normal but that is true for any of us.  All we know is our normal.  And our normal is pretty awesome....most of the time.