Wednesday, January 25, 2012

Cub Scout Pack Meeting

Yes Cub Scout pack Meeting and New Beginnings were scheduled on the same night. Poor Jairon and Zach (soon to be a Cub Scout) all confused came to get me to join them in Cub Scouts and were so upset that I was staying with the girls and that Ellie was staying with me as well.

Frank got pictures from the Pack Meeting. I will try to get either him or the boys to fill the gaps and describe was happening in the pictures soon...


















New Beginnings

Arise and Let Your Light Shine
The Mutual theme for this year is Let Your Light Shine. Tonight the Young Women had the annual New Beginnings program for the girls. One of the things I really liked that they did was to have each parent pick out  a flower that represented our daughter/s and then write up a brief paragraph describing why we felt that flower best described our daughter/s.

 Jade waiting for the program to begin
Celidah sitting with her friend
Ellie with her new Tubie Friend who had to have a sweater so she would not be cold...
For Celidah's flower I found a drawing offline I liked to use. The flower I chose for Celidah is the Pansy.

The Poppy was picked for Celidah because of her imagination. Dr. Seuss once said, "I like nonsense it wakes up the brains cells. Fantasy is a necessary ingredient in living, it's a way of looking at life through the wrong end of the telescope. Which is what I do, and that enables you to laugh at life's realities." Celidah has an amazing imagination which will take her to amazing places one day.

This is a Rosebud I drew a while ago using watercolor and is also the same flower I picked for Jade.

The Rose Bud was chosen for Jade due to the simplicity and beauty. While the rose bud has yet to fully bloom, this flower is very pure and lovely. This flower represents Jade because she puts her soul into whatever skill she is working on learning. Jade does all she can to bring out the beauty, grace, and purity  found within. Through her determination, hard work, and perseverance, this drive will allow Jade the opportunity to become whatever she desires in life.

Tubie Friend

My cousin has a group that is making and donating Tubie Friends to children with feeding tubes. Well Chantelle has had her Ellie doll since she was tiny. In fact this doll started out bigger than she was and when she got her doll they were about the same size. This doll has been through the ringer with Ellie. The doll has always had a feeding tube. While Ellie was oxygen the doll had its own nasal canula as well. At one point the doll the had the feeding tube, nasal canula, pulse-ox, sleep apnia probes, then after her sleep study the doll came home with cardiac stickers everywhere as Children's "hooked" her doll up her a sleep study too. She would NOT let those stickers be pulled off so eventually months afterwards we finally had snuck the last cardiac sticker off the doll with her realizing it.

Today she was SO excited to help make a new Tubie Friend for herself to take with us tomorrow to show to her new GI team at John Hopkins Children's Hospital to see if we can help get some of these friends spread around this area too. Here are some pictures from making her new Tubie Friend today.

 pushing the button made unusable through the toys belly and "blood" as she calls it
 Ellie helping find the feeding tube stem and drop a washer on the button stem
 picking the perfect tie down

 bending the stem and securing the button, washer and tie down in place (this combo makes the button useless, and washer keeps the bent stem of the button in the new friend)
 last step take a few stitches under the button on the top and bottom to make sure the fabric is secured
 pull the strings in the back (Build a Bear left this step undone for us and told me how to secure and finish the toys) and tie in a good knott


 All done!!!
 (see the monkey playing peek a boo? that will be the next toy we add a button to) All done! see the new Tubie Friend? Oh and one little princess getting so big who is so proud of her work and helping with her new friend.
 Yes holding both Friends with a tube and one waiting for a tube...
 Not sure the exact name on this new Tubie Friend yet as it has already gone through 5 names since yesterday.... Laying beside Lilly doll... Lilly is decked out with an extension because I used her to teach the school nurse out to attach an extension to the button and how we tape Ellie's extension down for school due to PE. Even with her Belly Bands I may have to still use this method as I am not happy her extension was not secured when she came home from school...
Ellie in love with both her Tubie Freinds...

Busy Day Today...

Today has been a very busy and LONG day. I started the day by working with a pattern for a belly band for Ellie for school to make activities easier. We also did a button change for her at the school with the school nurse today.. Ellie's "job" was to "teach" the nurse how to change a button. With the use of the book I made for her she helped feel more comfortable with the process and relaxed for her button change.

Normally for a button change Ellie would be so tense and nervous for the change that by this point she would already be starting to freak and cry. However, today she put on her bravest face possible. She talked the nurse through the whole process and only giggled. The steps she normally tenses the most about I was able to distract her and not let her realize what was happening until those steps were done. Pulling the old button out and putting the new button in have been the hardest for her.

However, today she decided that the old button being pulled out tickled in a silly way. Then going in also tickles in a silly way. Funniest was when I had put in the new button and I asked her what step was next, she responded with "duh mom, you put the water in now..." Once I reminded her that we were teaching the nurse she giggled and told me, "oh yeah." After that the nurse asked her "how much water do you put in your button?" At this Ellie held up two fingers and told her "two, you take the water out, you put the water back in, two times the water." We both giggled at her response knowing NOT to reuse the old dirty water and also the button needs 5cc's or 5mL's of water. I love the perspective of a 6 yr old.

The best part was once we had her button changed, the feeding pump primed, and ready to go and her extension set, she was ready to go to class and all full of smiles. She also left the nurses office so excited because she had been so very brave, her bravest ever as she put it, (not mention giggling that she got to go to class with a hunch under her coat, the feeding pump back pack).

Coming home from school she was even more delighted because not only was she brave at school but she also got to have TWO candy canes! She got one for being so good in the nurses office, and a second one for being so brave (for her) and not screaming, crying, kicking, but instead doing a wonderful job and giggling.

Tuesday, January 24, 2012

Bone Marrow Biopsies for Corbyn today...

Well today was a very long day for us. We had to leave the house by 8am this morning in order to get Celidah to a friend's house for a birthday party. Then I had to get Corbyn to John Hopkins Hospital (JHH) for his bone marrow biopsy.

We arrive and I start checking him in and am informed we have a co-pay that must be paid before he can be registered and admitted for the procedure. Knowing this was NOT right I asked if they were sure about that, of there were new TriCare rules that had just changed. Well unrelenting on the copay I called our TriCare case manager to find out from her if we had a copay or not. With a solid I asked if I could put her on speaker phone to let the registration desk know about that. With the case manager also saying no copay, they decided it was a matter that needed to verified before he could be fully registered and checked in. So we were sent to wait until a verification on the copay had returned.

Finally about 15 minutes later they let me know I was correct and there was indeed no copay. With this we finished the registration and admission process for the biopsy.

At about 11 they called us into the waiting area for Corbyn to get dressed in a gown and all the final stuff done before his biopsy. Thank goodness the delayed registration process did not delay the procedure. They took him back, placed his IV, and put him to sleep.

He ended up with a bilateral punch biopsy today because one hip would not allow for the aspiration of any bone marrow. The second punch gave all that was needed. He is excused from school all week. We also had to stay just a tad bit longer due to them needing to make sure he was handling the pain from the biopsy and able to eat and drink. Finally, he was happy to be allowed to leave and go home.

So far Corbyn seems to be doing ok as long as he does not walk or move to much. Getting home was an adventure though. I had to stop by and get Celidah from a birthday party, then as we were pulling to the final stop sign that would get us home two MP's sped past with only lights no sirens. They split up and went right into our neighborhood.

As soon as I got close to home I could tell the largest cluster of MP's and MP vehicles was on my street. Others we walking with dogs and  spotlights. They were clearly searching for something or someone. I as I arrived to the MP vehicle blocking our street I had to wait a few minutes to allow him time to come talk to me to verify I lived on the street and had valid reason to be there.

Just returning for John Hopkins Hospital with Corbyn (I still have the bracelet all parents have to wear) from his biopsy, I simply explained I needed to get him home. With his questions as to where we had been in the past couple hours I simply let him know I was just returning home from a day At JHH with my son who had a bone marrow biopsy and needed to get him and rest. He took note of our address, moved his car and let me proceed home. As I was driving by I heard the name of one of neighborhood kids being called and realized that we had a missing child.

Of course my first question to Frank upon getting home was "Are all the younger kids in the house and accounted for?" Puzzled he said yes so I told him about what we had seen. As soon as I mentioned the name I had heard to told me to go back and talk with them because she had just been at our house to play with the kids about an hour before. However they were finishing chores and getting dinner so she could not stay and play.

When the officer found out she has been at our house several times to play, he asked for my younger kid to come and talk with them so they could discover more playmate houses. My boys were able list off a bunch of names of kids they knew she played with, with that information the officers then taking some of the older kids with them to show them each the kids houses. It was due to the kids being paired with the officers that they found the little girl as quickly as did.

I am SO glad this little girl (Zach's age) was found safe in a house here on base and this was not a kidnapping situation. However, what made this so strange is this little was found on a street different than her bike. We are thinking she may have seen a dog, dropped her bike, and took off running as this child is terrified of dogs.