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.