Trying to update since this summer again. I realized I have done most of my posting on Facebook and not here or on our CarePages site.

June

This summer Ellie got to try her very first sip of soda pop. She was very silly about it and did not quite know how to react at first. (hoping the links work)
https://www.facebook.com/video.php?v=806888312655804&set=vb.100000039273069&type=2&theater

https://www.facebook.com/video.php?v=806888559322446&set=vb.100000039273069&type=2&theater

https://www.facebook.com/video.php?v=806889539322348&set=vb.100000039273069&type=2&theater

Corbyn fell and knocked himself out causing a need for two ambulance rides in one day. The second one however was far from comfortable as he was tied to a board for the whole trip. The xray noticed that he some cerebral damage due to the fall, so he had to be taken to Johns Hopkins neuro shock trauma for further evaluation.

https://www.facebook.com/video.php?v=803951619616140&set=vb.100000039273069&type=2&theater

June 14th, Ellie finished her own tea set so she could have tea parties with her friends. She used the mold and bake clay, then painted each item very carefully. This was one of her last art projects for the school year.

June 16-21 Celidah and Jade attended Girls Camp and both had a blast. Ellie also attended Theater Camp, while the older 5 attended GEMS camp, and the boys Scout Camp. Celidah was a youth leader at girls camp and Jade a 4th year. The boys loved scout camp and they worked on a bunch of merit badges.

GEMS Games, Engineering, Math, Science camp. All 5 of the kids participated in the GEMS program on base this year. This program combines math, science, engineering, and games into a fun packed week where the children work with scientists here on base in the military labs. The kids learned so much about a variety of the different aspects that go on inside the professional science lab. The boys especially were surprised how different, yet fun working as a scientist can be.

Ellie being left out due to her age was unable to do any of the "cool or fun camps" so we signed her up for theater camp this summer. She had a BLAST! Not only id she make some friends, but we discovered some hidden talent inside this little one. We already knew she could sing. Now we know she has amazing potential for onstage productions as well.

Life IS like a roller coaster, especially when you have child with ITP. Yesterday was one of those long adventure days. Corbyn, our 13 yr old son, has ITP.

To sum our day up:

7am- woke the kids to get ready for church:
  • about this same time Corbyn passes out, falls backwards and splits his head open spattering blood all through the boys room
  • 911 is called as Mom and Dad work to place pressure on his to control the bleeding using gauze and black tea bags

7:30- Ambulance and police arrive to help assess the situation
  • EMT’s are filled on what happened, then they prepare Corbyn for ambulance transport
  • Mom rapidly finds socks, grabs credit card, driver’s license, and military ID (yet tosses purse with cash back on the bed)
  • Dad dresses Ava (Mom’s service dog) to leave with Mom and we load up in the ambulance with Corbyn.
  • Suddenly while in route Mom realizes Ava has no treats, had no breakfast, no play time, no proper potty time, and all toys are at home
  • Dad later meets us at the local ER with portable water bowl, food and treats for Ava.

After triage, a CT-scan, phone consult, plans made to transport Corbyn vio another ambulance ride to Johns Hopkins Children’s ER for neuro-trauma eval. CT-scan revealed a posteried lesion on the T1. The fracture that was seen is one of those fractures that will heal on its own and will not affect anything. While at JHCC-ER, Corbyn was diagnosed with syncope, neurocardiogenic, refractive immune thrombocytopenic purpura (ITP), and a head laceration.

Well we knew about the refractive thrombocytopenic purpura, and the cut on his head. LOL due to the cut his clothes were soaking with blood and the floor looked like a crime scene. The ITP… again we know about that, as he was diagnosed November 24, 2007. Oh, today we found out his platelets are up again!!!

This saved him from severe injury for sure. Today his counts were 27k!!!! The gash in his head required 4 staples. Finally around 4-4:30pm his head stopped bleeding and oozing. Yes, his head took nearly 10 hours to stop bleeding and oozing but it finally stopped.

The original plans leaving the local ER was to get Corbyn into the JHCC neuro-trauma ER with admission to the neuro-PICU ASAP if needed. I am so glad we did not have to go there. Needless to say, today has been a very long and exhausting day…

We are home and he is still sleeping. Coming home after a day like yesterday was needed. Especially for his siblings.

Tangled and Sons and Daughters of God

While looking through Pinterest, I came across a Family Home Evening activity centered around the Tangled movie and theme.  This lesson starts out with the "Mother" and Rapunzel talking and Rapunzel being told that the world is not safe for her. Not only is the world not safe, but "Mother" does her best to tell her best lies convincing Rapunzel she must stay in the tower.

Just like Rapunzel, each of us are sons and daughters of a king, and the longer we stay on earth, the longer Satan fights and tries to deceive us from understanding the important truths Heavenly Father has provided for us. Satan works harder to prevent us from feeling His love as well.

For more on this wonderful lesson idea copy the link and read the lesson on the following page!

http://ptskjohnson.blogspot.com/2011/04/tangled-family-home-evening.html

Eighteen years ago, I was counting down the days to May 24^th. This was our upcoming wedding day. I know at some point I would become a mother as I wanted children. I loved children and had always worked with children in some way. What I did not know then is that by this point in my life that four of the children would be medical needs children, or that I would deal with a body wearing our earlier than normal as well. What I did know is that I would become a mother and do the best I could.

What have I learned from my experiences as a medical needs mother? Well, like any other mother we get excited, make plans for our kids, learn to adjust, and keep plugging on through a lack of sleep and total exhaustion.

Emily Kingsley’s poem Welcome to Holland is commonly used within the special/medical needs communities as parents try to help others “walk in their shoes” as one could say. Sometimes we expect and welcome in a child that is not born perfect. Other times we do not expects, but still welcome that child. Then sometimes, these children are neither expected nor welcomed.

This poem relates life as if one is preparing for and taking a trip. As a medical needs family, with each additional child, we have had to adapt in a new way. Yes, this is kind of like learning another language for the next flight. The things my children have taught me, I could not have learned without them.

                Our oldest was early in all her milestones. I had the joy of watching her grow and develop. Our second child needed lots of help and intervention to become the amazing child she is today, yet is as brilliant as her older sister. Even if she prefers to hide this brilliance. Child number three continues to battle against his body with is platelets. Then we add mischievous personality child four into the mix and he keeps us on our toes. Bringing child five near the end, even as a baby, he has always been our Mr. Attitude, and making sure everyone gets what they need to accomplish their goals and tasks. Finally, but not least we have child six. This little one sure loves keeping everyone on their toes. She lights up the room with her smiles and makes sure everyone around her is smiling.

                Our first child Celidah, was a very energetic little red headed bundle of joy. Not only was she very energetic but brilliant and met all her milestones early. She was brilliant enough that we had friends telling us we needed to give a head start and teach her as an infant through “special” flashcards that would have her reading and doing complex math by the time she was eighteen months. After watching how the learning style worked and the time involved, we decided this was not right for us.

Instead, I created cut out alphabet letters, laminated them, and placed them where she had access to see them daily. She had access to blocks, magnets, and many other learning toys to encourage her creative side and academic as she was ready. This process worked for her as she was asking for help learning to read just before her 3^rd birthday and sounding out simple words. Not long after, she took off and developed a love for reading which she still has today. Would she have the same love for school and reading with the flashcard method? Maybe? Yet, that was not my style.

Our next child Jade, was my first real challenge. She was totally the opposite of her sister. She met all her milestones late. Many were very delayed. In time I would learn to accept that each child will be different and sometimes very different. These milestones were delayed enough that intense early intervention would be required to help her out. We would learn that this child too was brilliant, she just needed help finding a way to understand her potential and learning style. Later, we learned that she was autistic and would need more intensive therapies than she had been receiving up to that point.

Like her sister, she too had access to the same educational toys and creative tools. She needed help communicating her needs, wants, and desires. To begin with lots of pictures were used within the house to show what was needed and expected. In time, we realized that the household rules needed to be adjusted. Why? I realized we had to have only one set of rules. I did not want one rule for my oldest daughter “you have to the good girl because nothing is wrong with you” and another for my younger daughter that told her, “you are disabled and have a lower standard to meet.” Instead, we re-aligned the rules for the kids that would allow all to follow.

Other than food allergies our third was fine until November 2007, when his body decided it was time to go haywire and attack his platelets. At first we were told to take him home and keep an eye on him because a spontaneous drop in platelets like he had would rise like it did in 99% of children facing the same thing. Two weeks later at a follow up, his platelets still had not gone up any, he was still sitting at 1,000. The normal is 400,000-500,000. With no rise, he was put on prednisone (steroids) and a referred to the hematologist. Again no rise, steroid level increased, appointment bumped up, IVIg treatments started. To date our son Corbyn, has had hundreds, of IV’s, and blood work pokes, IVIg infusions, many meds he did not respond to. Yet he keeps plugging on.

Our fourth son Jairon, joined our family with spunky and mischievous personality. He truly took after his Poppy with this, looks and personality wise. They are totally two peas in a pod. This munchkin was active but healthy (only had asthma). Most important to Jairon was to be involved in whatever his brothers and sisters were up to. He also loves making those around him smile.

Next came child five. When preparing for Zach we were not prepared for anything. We knew the pregnancy was high risk and there was a potential for problems, and the delivery did not go as planned. The delivery was filled with many complications, but things seemed to be okay after birth. This proved to not be the case. His lungs were born without the surfactant needed to lubricate his lungs. Without the lubrication, every time he exhaled, his lungs became stuck a bit more than before. In addition to that, the hospital he was born at, did not make the call to transport him for 36 hours. Due to this, the timeline for injecting the artificial surfactant into his lungs was borderline. Would this process work when he arrived to the NICU?

Later he was discovered to have a congenital heart disorder, a VSD. We did not know if his heart would require open heart surgery or not. He also was spitting up really bad and burning to many calories. This too would require a surgery. At that point they decided to put off the heart surgery to see if his heart would heal on its own, do a nisson fundoplication, and place a feeding tube for easier feeding and increased calories. During this surgery they discovered he had a hernia that needed repaired ASAP, so that was scheduled for the week after his feeding tube post op appointment. Right after that surgery he went right back into the OR for tubes in his ears because he kept getting really bad ear infections.

Somewhere around this time we realized his heart was healing despite the recurring surgeries. The next surgery he would have would be to remove a quarter he had swallowed. Due to his nissen, the quarter had to be removed because it could not pass through the esophagus. His next big surgery was to have a hemangioma removed that was attached to the main artery leading into his heart.

Due to his “many” surgeries, feeding pump, and “tons” of medical supplies, we had decided that if we would have another child, we were going to wait until all of Zach’s medical supplies were gone and out of the house. This was far from the Lord’s plan for us.

Right after delivering Zach, I was given a blessing. This blessing let me know that my family was not complete and the Lord would let me know our family would be complete. I think most hearing this in a blessing would be comforted. Me, I was not. At that point in my life I was terrified. Before Zach I had lost a baby, and the delivery was filled with complications. Zach’s pregnancy and labor was filled with complications. Not to mention at that point I was not even sure I wanted anymore, but had been haunted in the past by conceiving through birth control.

The day I found I was pregnant with our sixth child was a bad day. I was very sick with pneumonia and the meds to treat it best would terminate a pregnancy, could not be given if the test came back positive. Yeah, my test was positive. The kids were their gymnastics class, my husband in the field, and a very good friend with me (thank goodness). In the end this pregnancy was complicated, but not the worst. Labor was much easier than Zach’s.

Again like with Zach, everything looked great right after birth. Within a few minutes it was clear this was not going to be the case. At first Ellie was taken to the NICU to be placed on oxygen, an antibiotic, and watched. Within the first hour she started to take her first downhill turn. Before long she needed to be intubated, then suddenly she was on full life support. The next thing I knew they were talking taking her off the ventilator and putting her on ECMO to help her lungs because she had such fragile lungs.

There were tubes, wires, alarms, IV’s, pumps, all over her. However, eventually she came home, and added to Zach’s medical supplies. He had a feeding pump. She brought a feeding pump too. She also had a pulse-ox, apnea monitor, and oxygen. These had to run 24/7. Eventually we slowly removed machines here and there until she is now currently down to 2 feeding pumps and her GJ feeding tube.

Ellie-ism's

This afternoon Ellie had an appointment because she has been coughing and complaining about her chest and ears again. Thank goodness her lungs are clear and no sign of sinus or ear infection.

As we were just about to leave the office, the Dr M. said "at this point it is just a cold." As I was trying to respond back with, "if things get worse,"...

Ellie suddenly interrupted in her wonderfully dramatic style complete with the rolling of her eyes. "Yeah,yeah, I know it's John Hopkins ER we go!"

At this both her pediatrician and I started laughing.

This comment was funnier than earlier in the visit when Dr. M. he told Ellie that he was going to listen to her belly and listen to her belly sounds. She looked at him blankly and told him, "excuse me, I have been learning about the body and those are my intestines not my belly. My belly is the size of my fist and is right here." As she points close to her rib cage.

Boys and Their Toys (sigh)

Last October we had a Brave themed birthday party for our youngest. One of the party games we had was homemade bows from PVC pips and arrows form dowels found in the hardware/craft stores. Even though these arrows had sponge tips, they still can do some damage, simply because the shaft is wooden.

So what is the issue with these arrows we made almost a year ago? Well, on multiple occasions the boys have pulled them out for "target practice." Even though we have told them not to use them in the back yard. Until yesterday. 

This is where they really messed up. Both Corbyn and Jairon had been asked to pick up the arrows they had played and put them back in the garage. Several times. Yesterday while I was skype-ing with Frank (Dad) Celidah suddenly heard an odd sounding crack.

The cracking sound was different that what we normally hear if one of Ava's balls hits the window. She opened the curtain and freaked out. The window was broken. Jairon had darted out of the backyard to the front yard. Oh goodness this kid KNEW he was in trouble. Thank goodness he did not lie about what he did, or he would have been in even more trouble.

Today I took both boys (involved) to the military housing office and let them ask for a maintenance ticket on the window. (Something neither wanted to do.) Then they had to let them know that their father wants them to work with someone from housing giving 20 of community service since at their ages finding a summer job will be hard.

Now we get to wait and see just how much the window will cost to fix, and Thursday or Friday, we should have an estimated cost for the repair of this broken window.

Oh and guess what boys! Before you get to start helping on base, I have a garage that needs cleaning!

DME Delivery Feels Like Christmas

For the past week I have been having issues with Ellie not wanting to wear her backpack and feeding pump. Saturday, she actually hid her extensions inside her backpack so it looked like her pump was running. When I first questioned her about this she told me that she just wanted to play longer.

Well this morning we talked again about her pumps casually as I was letting her know due to her coughing she would be hooked up to the pedialyte all day as I had to give her extra meds. During this conversation in only an "Ellie" conversation and dramatic fashion she informed me that one of her pumps is so noisy and proceeded to mimic to the best of her ability the sound the pump makes.

With this in mind we finally opened the new DME (durable medical equipment) delivery boxes and discovered the insurance has approved one more pump for us! Ellie was jumping up and down with total excitement over a new and silent pump. (I have to admit I too was excited). We now have 2 pole clamps, 3 charging cords, 3 pumps, and can use the noisy one as a backup pump.

The other exciting thing for Ellie was a larger child's backpack. This one is perfect for her, and is not the super mini (toddler sized which we have 3 or 4 of). YAY! We  now have a backup backpack if her main backpack is dirty.

Oh and we are now getting enough syringes that we can use 1 per med dose per day!! something I never thought I would be excited about. However adding the MCT oil to her formula, each syringe is pretty much good for that use because once the syringe sits for a few minutes, it becomes stuck. I can now pre-predose the meds again (not the oil) and then we can just toss the syringes as we no longer have to wash then out! (The older kids will LOVE this!)