December 1st

Jade is now 15.... Wow these kids sure are growing up so fast. We had a small party for her. She only had 3 friends over, all triplet boys from a family here on base that she likes and they like hanging out together. Jade had told us quite a while back that the only thing she wanted for her birthday was to see the Hobbit in the theater. So as a surprise her dad and I bought tickets online for the whole family. When Celidah was 15 we went to the Lorax (her choice). When I can pull the pictures off the cell phone I will get them added in here.

November 26 was the start of a rough week for us again. We had just seen Ellie's Dr's at John Hopkins and she had stopped gaining, (actually had lost weight on their scales) and they wanted her to get more calories and a faster rate in. Well the same day I had started trying to increase her rate the first time she started throwing up.

I cut her rate in half and she was fine. Bumped her feeding rate the normal rate and she was throwing up everywhere. This lasted for about a week. Finally, we got to the point where I could slowly start increasing her rates again so I am sure I tried increasing her rates at the same time that she got a stomach bug.

Daddy and I are thinking she was the first to really be hit with it because a few days afterwards others in the house started with similar issues. She just got hit harder. Poor girl.

Oh my goodness is he really TWELVE????

October 24th greets like a normal with the exception that Jairon has now turned 12. We "try" to pretend that today is just a normal day because the kids have school and we knew that his birthday would actually be celebrated on the 26th not the 24th this year. Why?

Well... It has been a crazy month... Celidah leaves for seminary around 5:45, the middle school kids are out the door by 7:20, and Zach out the 8:15. Nobody cherished the idea of getting up at 4am just for Jairon to do his birthday spiderweb/scavenger hunt. (especially mom)

Come the 26th Jairon was all upset and convinced that his birthday had been totally forgotten (part of the plan) that he did not want to get out of bed. The fuming mad at his father he fumed and stomped in his room when dad told him he had to have the room "clean" before he could leave the room. There were several "this birthday totally sucks" coming from the room as toys were slammed into place, and drawers slammed shut. Finally dad told him the room was clean enough and he could leave the room. Puzzled, he pulled and the door and his door only partially opened.



"What the...???" he questioned as he struggled to get out. Finally, he decided he needed to just crawl out of the partially open door and his eyes pooped open as he saw the yarn spider web causing the problematic door. Suddenly, the excitement was there and he started following the yarn until dad reminded him to find the end on his door to the far and untangle the yarn as he went along. At first he was puzzled and confused to discover a very short spider web with only 1 brown paper bag at the end.

  

Jairon, "But everyone else had LOTS of things on their webs? Why do I only get one bag?"



Reply, "look at the bag..."

Jairon, "huh"

reply, "just look at and in the bag"

Jairon, " a number 1?"

reply "open it..."

clue #1 read, and suddenly is off and out the door in his pj's and bare feet and back inside really fast, he had to let us know how cold it was. hehe

    

He was so excited that he had a yarn spiderweb AND scavenger hunt for his 12th birthday. Yes the wait was worth it.

    

    

Getting ready for a very special baptism

      

    

I know all baptisms are very special, but this baptism is extra special to our family because this one even 2 years we did not know if this would be a reality. All we could do was cling to the hope that maybe someday she would healthy enough, and have enough lung strength to be submerged under the water during winter.

With an October birthday we knew this baptism, would most likely take place in November, a cold month. This is also during the heaviest beginning of flu/RSV season. With a lower immune system, weakened lungs, GI issues, and many other heath problems going on October and November have been the months with the most hospitalizations, and then typically December-March have too as well. Knowing that October through March are risky months for her we did not know what the years 5-8 especially would hold.

Then comes year 7 and things seem to become much better until November. November she became sick due to illnesses running through the school. We tried everything with her pediatrician. Nothing was working so her doctors at John Hopkins wanted her evaluated at the ER. She was admitted. We spent a week, went home, went back to school, and thought she was ok. Next thing we knew she was very sick again. Same thing, lungs sounded worse, rejected her feeds. Admitted again.

This cycle continued throughout the rest of the year. By the time the year was over she had missed over half the school year even with after school tutoring to make up for lost days. Her problem? Well other kids went home sick and then came back to school partially sick because the parents had to work. That or a teacher or there was also sick. Wearing a mask was not enough for her to keep her from getting sick. 

Yes, this seemed unfair to her. Was it really? Well think about the teachers who had classes depending on them. Parents had jobs depending on them. Students had classes and classwork waiting for them. What it boiled down to was her body was unable to handle to stresses of school.

As the school year continued on she became more worn down. She would go into the nurses office for her required breathing treatments and collapse in exhaustion during. The nurse would let her sleep until she woke up then send her back to class because at least this way she would still get credit for being in school. Sadly these sleeping sessions would become frequent and longer. Her hospitalizations would also become more frequent and longer.

Then hits Super storm Sandy the mother of all storms. We had been in the hospital for I believe a week or so now, and the hurricane we on its way. The Date was October 22, 2012 and the hospital was calling the base and communicating with emergency crews there (and long the way home) making sure there was shelter with electricity for us for Ellie. 

We had to have electricity for her feeding pumps. I luckily had both her pumps with me and we had both fully charged so we had power for her for about 36 hours.

Fast forwarding back today she is now 8, homeschooled and doing so much better this year health wise. Is this because we decided to keep her home? Is this because she is older and becoming stronger? Is this because she is home and growing stronger? Only our Father in Heaven really knows. What I do know is that she is thriving this year and learning so much.

The "Brave" birthday party for our super Brave princess. We went with the Brave theme for several reasons.
1. We love the movie
2. We have a very strong Irish/Scottish heritage
3. with all she has been through she almost always goes into the OR with a smiles and often we find her in the PACU with a smile. She is always nice and pleasant with the nurses
4. When in the hospital, even with sick she is never mean to the staff
5 She is learning to handle IV's and needles without total freakout mode now. We are now able help her "manage" frighting parts much easier.
6. She tries to help others feel happier when they too are in the hospital. She makes friends every time we go. Whether we go for appointments or she is in the hospital.

Oh and her cape hides her little black backpack for her feeding pump. The one thing different with this party that you may have already noticed. Yes there was no cake. We had no food at all. If the kids got thirsty we offered them a cup of water, then had the water stay inside.

Activities?

Bear Claw and bead necklaces
Goop
Puff painting
Back Yard Archery Range
Haggis toss
Triplet bean bag toss
"Mailing tube" Caber Toss
and the opening of the presents

Because we had no cake or food we had activities to last the entire party. We did not hear any questions from any of the kids about where the cake was or why we did not have a cake or any snacks. So the many activities seemed to do the trick. Ellie had a blast, her friends seemed to have a blast, and afterwards Ellies announced, "That was the bestest party ever!" as she was snuggling into bed exhausted from her adventrues as Merida for the day.

  
 her very best friends at her party
   
mailing tube caber tossing anyone?           Triplet bean bag toss


   
Back yard archer range :)                                                nice breeze to blow the cape back

hmmm ballet classes by chance? hehe


time for pressents
  

       

October 15th, Happy Birthday to a Little Princess

On this particular morning, I was very groggy and awakened very early by a little girl who very rarely is awake before 9:30-10am. (now 10-10:30). This very awake and excited child came running and screaming into our room exploding with excitement. "Guess what? It's my birthday! That means I am now 8!" she shouted as she ran across the room and jumped on the bed.

Rather groggy, we tried tried rolling over, yet this was not happening with her in the room. She was now off the bed and on my side of the bed making sure I had heard exactly what she had said maybe 30 seconds ago. By this point her father walking in the house after taking our oldest to seminary, and riding the bikes at the base gym.

Ellie was so excited that at 6:30 she ran and gathered all her school work, proudly exclaimed, "I am getting all my school work done early so I have LOTS of play time today!"

Oh how true to her word she... By 9 am everything was done. I redirected to some educational games, talked her into doing her chores, but by 10 am everything was done. The following day would be her party and she would find out in about 4 hours that she was not only getting a play date with her best friend but also a sleep over so we could surprise her with the decorations for her birthday party. She had yet to discover the theme even with her dress.

Ellie in her birthday and Halloween costume. All she could talk about for months after Brave came out was how she wanted to be was she just had to be Merida. So Celidah and Jade helped to make the cape for her while I made the dress. The fabrics and colors were Celidah's choice.

This is by far Ellie's favorite outfit and because of the way this dress was made she is able to wear her dress to church, while playing, or even to Dr. Appointments. There are sometimes I "encourage" her to wear this dress especially when I know she will need a "braveness" boost and it seems to help her. She absolutely LOVES being as brave as Merida is.

These pictures were taken at a park just a couple blocks from our house.




I love her smile here and how her "wild" here just falls everywhere



This one of my favorite pictures because here she looks so free from everything



LOL here she is showing her attitude as some neighborhood boys ask her if she was Mulon, and then ask Cinderella, and several other names that are wrong. I love this "seriously, did you just really ask me that?" look...



Here she was bummed and annoyed with me because it was time to head home "already" I guess 45 minutes of pictures was not enough hehe