Thursday, December 26, 2013

Wednesday, December 25, 2013

The breakfast Table


The breakfast table. I do not know when or how this was started at this point, but this is the highlight in our family. This is also a very special tradition that as far as I know, is one that is special to just our family.

What exactly is this tradition that is so dearly loved in our family? Each year since Celidah was a very young toddler, Frank and I have prepared a special breakfast for the kids. The table is set, decorated, and often littered with various gifts or decorations. We have also had easy breakfast foods around for the kids that we do not normally have for them. In the past, we had boxed milk, boxed juice, Capri-sun type drinks, instant oatmeal, cereal bars, etc… We have had the table littered with bubbles and bubble supplies, Beanie Baby toys, sidewalk chalk, crayons and other young kids art supplied, matchbox cars. Basically, we have had many themes, or ideas over the years. The one constant has been the fruit basket, fun cereals, decorations, or gifts, all over the table.

This year with kids are getting older so we went with a black, gold, and red theme. I knew the magic would still be there regardless of the theme or colors. Also, something new and very special was that we allowed Celidah to help us. She is nearly 17 now for the first time asked if she could help. The beaming glow on her face when she was told yes was awesome.

This morning as the kids woke up, they were very excited and they squealed with delight once again at their favorite family tradition. The breakfast table. Ellie screamed when she found her seat and discovered that “Santa” left quinoa for her breakfast. Something she has been asking try again for weeks. As she ran to get her feeding pump and backpack, I started the quinoa in the rice cooker for her. By the time her meds were done, pump was ready, and she was back at the table her special breakfast was ready.
While the kids were eating breakfast, Frank handed out the “Santa” gifts for each child. The final gifts were 4 books filled with music. Piano/Vocal/guitar music. The kids (and Frank) all were so excited about these. Suddenly Frank and Celidah were fighting for the first turn on the piano. Giggles… dad won

Oh, yes we do add stuff to the stockings, but the stockings or the presents under the tree on Christmas morning have never been the most important or favorite part of Christmas morning to the kids. It has always been the table...

Christmas Eve

Merry Christmas!!

Christmas Eve in our house has several traditions the kids have grown to look forward to and we have a new one that we can now start. Starting last night, we discovered that we have enough children who play instruments well enough that they can all play together. Feeling the joy and excitement of this Celidah picked up her violin and played, really played for the first time in a long time.

Next we red from the Bible and the kids acted out the story of Christ’s birth. The kids had a blast. Some years their “production” is more rehearsed, and others more chaotic. Either way the story is told and they remember the message. We talk about why Christmas is celebrated in December not April. Once that is finished, we remind them about Saint Nicholas, who he was and why and how “Santa” can be anyone around us, and that the kids can also be “Santa” to each other as well as each other.

Finally, we opened our family "Secret Santa" gifts to each other. By the time we were opening the gifts it was very clear who had who because the secret Santa's were about to bounce out of their skin. The kids were jumping up and down with more excitement and enthusiasm often than the receiver. The kids had a blast.

One of the best reactions was watching Jade open her Hobbit Map poster that she “thought” she had chosen for her father. When picking out the posters she did not question my telling her to pick her 3 favorites. Dad, Zach, and Jade each received a Hobbit Poster. Jairon received a Minecraft poster.

The kids loved their gifts for sure. Celidah got the Prismacolor watercolor pencils she had asked for. However, tin she got, had way more colors than ever imagined. Along with the pencils she got a pencil sharpener, blending stick, and special water color brush that is filled with water. This allows her to combine colored pencil and watercolor in the same drawing or turn colored pencil into a watercolor painting. Oh and some new sheet music.

Jade received a pair of socks and some gel drawing pens.

Corbyn, confused then thrilled beyond all measure at the simple board, plain cut out shield, and the hardware realized very fast that he and dad have a special project between them. He gets to work with dad to make a shield and sword! That simple gift made Frank beam as Corbyn exclaimed that was one of the best gifts.

Jairon received a game thing (Gameboy something) that we helped Jade find for him. However, her biggest gift to him was his own Monecraft account, and the shield sword, axe she made for him from poster board. When he came out of his room today, he was screaming with joy from her gifts.

Zach whooped and hollered as he opened 2 shorter Nerf type swords and the cardboard armor that Jairon (with some help) made and painted for him.

Ellie LOVED her super spy set from her, the necklace he made, and the one he found at the Holiday gift shop. Silly Zach knowing how much Ellie loved presents took the spy set apart and wrapped each part individually. This made her feel very special to have many gifts.

Ellie was bouncing out her skin as I opened the candle she picked out for me. Before I could even open the gift, I knew exactly what was inside. She was jumping up and down and giggling about how she just knew it was my favorite scent. This silly child was so worried about what to get me before Christmas that I eventually told her, “You will just know the perfect gift when you see it.” Well she found it. I loved her reactions as they were priceless.

Dad received a remote control car. Giggles, this car came with several kids at once all saying, “You SIR! Are a hard one to shop for!” as they also giggled. The remote control car has proven to be quite the puzzle for Amy. She will dart near but not right up to it, then jump away. Early this morning she decided she needed more of the silly remote car. She would jump and pounce on Frank trying to wake him up. Yet if I touched her she simply (without claws) batted my hand away. She was NOT wanting my attention. The silly kitty.

The final gifts left for last night were funny oddly shaped presents from Nana and Poppy. There was one for each child. With total excitement, Celidah exclaimed, “I LOVE Nanas gifts the best because always gets something special for us.” At this point Frank told them they could open their gifts. Their faces filled with excitement, suddenly turned to puzzled looks, then to total bewilderment as they tried to figure out WHY in the world Nana and Poppy would give them potatoes and they would be “outdoor use only” But potatoes are for cooking not outdoor use? Well they would have to wait until the morning to find out. Giggles. The moans and groans of having to wait.

Once it seemed all the gifts were given, Celidah told everyone to stay put and ran back to her room giggling. At this, I turned on the video portion of the camera and waited for Celidah to return. As soon as she did she placed a black box that simply said “Welcome” on the outside on Jade’s lap. Confused she looked between mom, dad, and Celidah for a few seconds, then slowly opened her gift.

Suddenly there was a gasp, her eyes popped wide open, and she looked at Celidah, who by this point was also jumping up and down and giggling hysterically. The first words out of her mouth were “You didn’t, you… didn’t, NO you didn’t!” the response was a sudden, “Oh yes I did!”

Another round of hugs were shared, and it was time for bed. I know the horror, the torture, the final sleep before the magical morning. Bedtime. How could we sent the kids to bed now, after the excitement of sharing their gifts with each other?

Once the excitement and energy wore off the kids, Frank and I got to work on the “breakfast table.” I do not remember exactly how this special tradition got started, but this is the most favorite part of Christmas morning.

Friday, December 20, 2013

Chantelle Birth to Eight! at OneTrueMedia.com


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What an amazing 8 years it has been for the family with this princess. There have been many times where all we could do was pray and cling to the hope that our prays would be answered. There would be other times where the kids wondered why they even prayed at all as their sister grew and learned to torment them back and they once tormented her and each other.

I cannot say that life has with the 6 kids has always been easy or what we thought it would be. I will say, this family is the family I dreamed and hoped for. I would never trade the children or their medical issues for something else. Their medical issues are what make them special and unique. This is has shaped the personalities they currently have.

Just who are my children today? They are the most loving and caring people I have ever seen. They do what they can to reach out and help others. There are times I wish they would reach out and help more in the home. I do wish some days they would argue and fight less with other. Yet, when I see them out in the community, out with friends, that is when I see their personalities the strongest.

Celidah is one who at school can be friends with anyone. She helps those in need and does not discriminate just because her friends around say she must.

Jade is not afraid to lead to other know what is expected. Just because is right and no one else is doing does not mean she will fall in with the wrong crowd. She knows right from wrong and is willing to do what is right, because she knows what needs to be done.

Corbyn is a watcher and a thinker. He will watch and think and have a solution before he attempts something. He has always been this way. Through this method he knows what to do before he even begins.

Jairon loves doing what needs to be done. He follows through with the task at hand. He will work hard and keep practicing until he gets it right. Jairon needs to know that what he is doing is what is needed. If he is on track then he will continue to practice hard and work hard

Zach is our explorer and memorizer. This jitter bug is very active and needs something to do all the time. With a constant need for movement and activity he is happy.

Ellie is entering the discovery phase. She LOVES learning and can't soak up the knowledge fast enough right now. Between her school work and educational activities she is loving school this year. Being in and out of the hospital has not slowed her down or discouraged her at all. No matter where we are, there are life learning experiences all around us, and we find ways to advantage of these.
Annoyed kitty stuffed in a stocking

I forget exactly how we conjured up this plan to stuff the kitten in a stocking but we did and she showed her annoyance with over that idea. I am just glad we have a good camera that takes quick and good shots because she clearly was not happy with us.

          
Elementary Orchestra and Choir Performances...

Zach had SO much fun the other with his orchestra and choir classes. Zach had all his orchestra pieces and choir songs memorized. The kids sounded great.

The most exciting thing for Zach is now that he has made it this far in his class he finally gets to stop plucking, and start with the bow on his violin. While he does not understand that plucking is an important thing to start with he will eventually.
UGH MICE!!!

A short while ago we had mice in out house. This was one of the most frustrating things we had to deal with because the way this house was the garage door would not completely. Yeah needless to say this was the perfect entrance for these beasts. Then when the kids would leave and enter the garage they would not always shot the garage door tight. Again perfect entrance, except this time into the house (insert scream).

Well we eventually got them gone and thought we had their mess cleaned up. Well we did "until" I needed fabric and discovered that was were their main nest was. NO WONDER they were hard to catch and were so quiet. My patterns and fabric were keeping them quiet.

Lessons learned?

Keep all patterns in the metal filing cabinet
Felt IS washable before using (some kinds will shrink and make it thicker)
A wooden dresser is not a good place to store fabric... I need something better to store my fabrics in (sigh)

Oh and yeah I still HATE mice
Learning about Volcanoes and the attack of the cat

              

Eating from a bottle not a tube

Making the connections on how others eat can be difficult when one does not eat "normally." This is the case for our youngest. 

I had the opportunity to babysit a friends infant giving her a break. Well the time for him to need his bottle. What made this so special is that Ellie has played with her dolls, she dresses them, feeds them, does everything for her dolls a normal 8 yr old girl would do. Yet this little boy was not a doll. 

She watched me change him in amazement. Yes babies have tiny bottoms and use tiny diapers. But the shock to her was that babies actually drink from bottles?? What was this foreign concept?

She was thrilled to hold him swaddled in her arms and help him hold his bottle. Suddenly her eyes got big, then she asked me, "Is this really how babies eat their milk?" 

I let her know that yes babies drink their milk from bottles. I think asked if she had ever seen a baby eating like this. Puzzled she at me shaking her head no.

It then dawned me that with all her hospitalizations, surgeries, treatments, procedures, and such, since we had moved from CO we had not had around. In fact I could not remember a time when she was old enough to remember. She is now all excited because babies drink formula from bottles not a tube like her.

I sure love how excited and much she keeps learning.
December 11th led into a sad evening for me. While I was home with Zach and Ellie and she did not have to go upstairs this time, Frank help drive youth to DC for a temple trip, our truck was still broken, the part still not at the shop, and no way for me to get to the high school.

I eventually found a ride for Jade, Corbyn, and Jairon to be on time to their band concert, but I was unable to attend. This was the first concert I had ever missed and I felt bad. But I was happy the kids made it for their grades.

Button Change

December 11th, another new Button.

This button change was different because was prescheduled and we actually made it to the appointed day without issues. Ellie was given her meds, the pump was shut off, lines flushed, and she was prepped as needed at home for her procedure.

What are the different button types and why does she get hers changes so often? Also what exactly do they do when they change her button and why is this such an ordeal for her? Good questions.

First off what is a feeding tube? A feeding tube is a medical device used to provide nutrition to an individual who cannot get enough by mouth. This may be due to swallowing issues or to supplement their current nutrition because of acute conditions or chronic/severe disabilities. Feeding tubes are given to premature infants, disabled individuals of all ages, cancer patients, and multiple other medical issues.

The Nasogastric or NG tube is a long thin tube that runs through from the nose, through the esophagus, and down into the stomach. These tubes are meant for short term use and do not require surgery.

The Nasojejunal or NJ-tube functions simular to the NG tube. However, this one runs through the nose, down the esophagus, through the stomach, and down into the duodenum, the first part of the small intestine. This long this feeding tube must be placed by a team in the hospital under x-ray guidance.

The Gastrostomy or Gastric Feeding tube (same thing) also called a G-tube, (sometimes called a percutaneous endoscopic gastrostomy (PEG), abdominal surgery allows for feeds directly into the stomach.  Once the stoma (or hole for the feeding tube) has healed enough the parents can change this tube at home.

Jejunostomy tube. Like the G-tube this tube is surgically placed in the abdomen. However unlike the G-Tube, feeds by-pass the stomach and enter directly into the second part of the small intestine, the jejunum. This tube is replaced via an endoscopic procedure.

The Gastrojejunostomy feeding tube is a combination of the G tube and J tube. The G-tube portion feeds medicines and or nutritional support (if allowed) into the stomach, while the J portion feeds meds and nutritional into the jejunum.

Ellie has the GJ-tube combination and for some reason her body seems to need to have her button changed every 2-3 months.

A typical button change for us starts at 9pm. Her formula stops and pedialyte begins. By 2-3am pedialyte is also turned off, meds given early, extensions flushed, removed, and I do a final check to make sure (again) I have everything in her stroller for the day. (yes I have a special stroller for her.)

We arrive at the hospital at the appointed time (usually 3 -4 hours before her procedure), check in, start the paper work, meet her team, the anesthesiologists, and go over the plan for the day. She meets with Child Life as well and explains the whole process to everyone involved. By this point they start hooking her up for the monitoring she will require during anesthesia, and she just jabbers away to everyone while watches TV.

Yes, to her is just another day for her. When it is time to go back she always makes sure her toys have a blue hat and outfit to as after all "they are coming and staying with me to watch over me during the surgery" she tells the Dr's.

Once she is out I slip out with her toys and they hold her special place in the stroller that save the hospital the use a wheelchair and an escort out of PACU (unless we have to head back to floor 10.

Yes the main reason right now I take the stroller for all her procedures is because the kids are not allowed to walk. Not to mention she has no energy and just does not have much distance walking strength after a procedure. Talking her stroller (which is actually considered a push chair) and has a weight limit of 150lbs total load carrying I know we are good with it for a while.

While she under anesthesia the team removes the old GJ tube, and endoscopy guide, they thread the new in place. Once she has been move to the PACU the first thing I do is replace her toys exactly where they were before she was out. When this done, I sit there gently stroking her soft red hair and talking to her in a quiet voice until she wakes up. When give her own time to wake she will slowly wake up and turn over with a smile. Many times she has asked me when she going to get her new button because she is so tired.

The only times she wakes up crying from anesthesia is when she is sick or had major surgery. She is offered apple juice and once she can keep juice down for a set amount of time she is allowed to get dressed and then we are discharged. very often, her procedure days are 10-12 hour days. We are always so glad to be back.

This last time she told me how sad she was for the 3 kids that had to go to floor 10 and not go home like she did.
Finally let the kids have a little playtime outside in the snow. Ellie is eating a piece of hot chicken. Her favorite (only) hot food she gets to eat. Jairon under our thickest blanket with Zach next to him. Corbyn just chilling, and Celidah and Jade standing around.
          
Caught Ellie with snow still on her hat and Zach in his snow suit still ;)
  


I love my pretty puppy dog with her sable colored coat



And out Tuxedo kitty under the Christmas tree

        
Such a happy puppy LOVING the snow. We could not keep the crazy dog in the house when it was all wet and snowy outside. Yet this silly creature thinks she is dying from cold with the temps drop to 50 degrees  outside. What is she thinking?
Boxes are a kids and animals favorite play thing

if you look you wills a hand poke out of the hole. That is Ellie's hand. She, kitty and puppy played like this for a good 30-45 minutes. That box was full of giggles

      
Last year the kids were given an ornament set from their grandmother and one needed to be painted. Well last year I put the ornaments with the intent to have the kids paint them this year before putting them on the tree. This is what Zach and Ellie did with their. Corbyn and Jairon have not had a picture taken of theirs yet.

  

  
December 8th offered the kids the first snow of the year. Sadly they were all furious with mom and dad as we would not let ANY of the kids go outside and play in the snow. We had multiple kids with coughs, some recovering from strep throat, and others just not feeling well. Through tears they pleaded and begged. They let us know that this 5" of snow may be the ONLY snow we would get for this entire winter. Sadly, we did not relent. Our horrified children who begged and pleaded, now defeated went to their rooms to sulk as they watched the snow continue to fall.

Later in the day Ellie would come to me once again and beg and plead to play outside.

Ellie: But mom one of the smaller soccer balls is almost covered and hidden by the snow. That is why I so badly want to play in the snow.

Mom: I know but your lungs and your cough.

Ellie: But I have those Dr's masks, I can wear one and I'l be just fine. Let me wear a mask and play please....

Mom: you know my answer...

Ellie: but mom (as she walks away with tears again)

Sadly none of the kids were allowed outside that unless they had to walk the dog (and the was Corbyn because he had not been sick) or take out the trash, (again Corbyn)
Since Jade has a December 1st birthday we have always let her decide when the tree will be put up. Some years she has wanted it up the day after Thanksgiving, others on her birthday, and others like today, we did the 1st Saturday available. The kids had a blast decorating the tree, and our kitty has had a blast un-decorating the tree. She seems to think it is fun to very carefully select an ornament, remove it, dart across the room (while making sure at least 1 or more of the kids know she has it), the let them chase her as they giggle. 

These ornaments and stolen back from the cat, placed back on the tree, and the cycle begins again.