Saturday, December 14, 2013

IVIG for Dad's Birthday


We were finally able to set up Haven's IVIG at a hospital closer to the house.  We've been driving over an hour every time to get Haven to the hospital.  Now we only have to go 20 minutes.  When we got there this time the trees were decorated for Christmas.  I love being in a place that isn't afraid of Christmas and Christmas trees!



We didn't know Santa would be there or that elves would be present.  But when we got to the hospital there they were.


Haven was so excited to be able to get with Santa one more time.  She kept telling me every time she got with Santa there was something else she would remember that she needed.  


When we got to the hospital Haven's nurse had set up her bed with a little gift bag.   Danielle is super cool and Haven just loves her.


Ohhhh….IVIG….how we do not love thee!


Haven hanging out while we wait for the 6 hour treatment to end and then we get to go home and celebrate dad's birthday.


Happy Birthday Daddy ------ Love your clan

Sunday, December 1, 2013

Endocrine visit!


Well Miss Haven has been on the growth hormone shots for about 2 months now.  We went in to meet with Endocrine the week before Thanksgiving.  This was to make sure Haven was responding the medicines and if she was having any reactions.  

I was most concerned that she had gained 2 pounds but then again I wasn't sure if it was the medicine or not.  So they took all her numbers and vitals and then we reviewed.

Since her last visit to Endo in July Haven has gained 2.2 pounds.  Keep in mind Haven hasn't grown even an 1/8th of inch in two years.  She just stopped completely.  No hormone to do it.  Also affects teeth and muscle mass.  Since starting the medication in October Haven has grown 1 complete inch!!!!!

1 INCH

Not only has she grown an inch in 2 months but her weight percentile has gone from 87% to 85%.  Even though she has gained 2 pounds she has gone down in percent.  Doctor informed me that Haven has no muscle and this will help her with that - which also adds weight but not fat!  :)  I'm so happy.

This definitely makes taking the medicine worth it.  Since Haven is responding so well they increased her dose and now we will see the doctor on May 1st for another review of where she is.  I have already bought her new clothes because her old pants are about 3 inches above her ankles and look a bit funny.  

Next up is Pulmonary and a sleep study on December 21 - we're a bit concerned here but hopefully we'll get some good info at the study.  And she has her IVIG coming up on one of these Saturday's in December.  


Thanksgiving Dinner 2013 --- Mom's first try at turkey!


This was our first Thanksgiving dinner on our own - no parents to cook for us.  Time to figure out our own traditions and what we like

Haven started the morning off with Deviled Eggs


Then came the roasting of the bird!  We filled it with lemons, oranges, onions, garlic, parsley, sage, and thyme leaves.  Then rubbed our garlic butter mix all over him!  



He came out BEAUTIFUL!  We checked his temp and he was ready to eat at exactly 4:45pm!  :)  mmmmmm mmmmmmm


Haven also researched a good cranberry sauce that we all might actually eat.  We bought some fresh cranberries - cooked them until they popped and then added all the goodies.


At the end you add blueberries --- OH IT WAS YUMMY.  I've never eaten cranberry sauce and this was amazing!  Great job Haven.



After dinner we started the decorating of the windows.


Rohnin is always a huge help with the decorating.


Finishing windows to move on to the doors.



How high can we get the stickers so Weston doesn't destroy them?


Everything gets moved up the next morning!


Taken by my Haven.  She put this Nativity scene together with the window stick ons.  

Fun time at the mall

Got the kids to sit with Santa and tell him what they want!  Weston was more worried about what the elves were doing.


They love going and climbing in the play area


Rohnin has no fear!



My boy








This is a great map for weekend energy release.  Lots of parents just come and watch the babies play….makes the rest of the afternoon much easier!

Christmas List making

We took the babies out to see what they like at the stores….plus it wears them out to spend 2 hours in Toys R Us!  We always try to get them stuff that is slightly over their age so they can grow and learn with it.  


 Weston LOVES trucks



yea Spidey was in there


Now I know Rohnin loves these castles and houses to play with



Weston loves them too


My girl really wants her own chair…..hhhhmmmm





This was a fight to get them out of!


Truck heaven for Weston


Oh doll houses!!!!

Immunology update

 Just a vital check…heart rate was a bit high but everything else is good to go!

 Accessing the port - we had to do this twice because her port clotted up half way through.


When I got back from Bangladesh I took Haven in to the hospital the next day to get her labs done.  We had a lot of extra labs taken this time for Immunology.  I have been sick since my arrival back home and haven't really been able to connect with the doctor so I do not have the results of the labs.  But I did receive confirmation that she would be transferred to Immunology - which will allow us to do her IVIG treatments on Saturdays instead of during the week.  WHICH IS AWESOME!   When you seen 5 specialists almost monthly it's very hard to continually take off work - especially when some of the treatments are 6 hours long!


I will hopefully be able to connect with Immunology this week and get everything set up and finalized.