Today was the first major headache free day Corbyn has had! This morning he only had a minor headache but nothing to really bother him.
It has taken nearly a week since he got the concussion to really start feeling better. This has been a long hard recovery for him. Due to his platelet disorder a minor concussion is not a simple matter, nor a short quick recovery like with most children.
We are all relieved that he is finally showing signs of full recovery.
Sunday, December 21, 2014
Friday, December 19, 2014
Going back home!
Well this was a fairly short ER stay tonight!
Thank goodness everything checked out okay tonight! Looks like the headache is a combination of the concussion that Corbyn sustained on Tuesday when he got into a fight at school and was knocked out.
He simply needs more time to heal. To complicate matters he appears to have had a slight reaction to the IVIg causing the headache to become worse and last longer. The ER staff is sure the dizziness and vomiting is from the concussion and increased from the headache.
The good news is that the head CT came back clean. There is no sign of cerebral hemorrhaging (brain bleeding), also his platelet count is up to 130k. Not as high as his last IVIg count of 170k but we are still thrilled with the 130k count.
We are just about to head back home. He is still on concussion restrictions. No active activities. No biking, running, jumping, (fighting) or similar activities. Not that he is interested in these activities anyway. LOL he just told the Dr. that he never wants a headache, vomiting, or dizziness like what he has experienced today. So time will tell if he has truly learned from this experience.
I think he has.
Thank goodness everything checked out okay tonight! Looks like the headache is a combination of the concussion that Corbyn sustained on Tuesday when he got into a fight at school and was knocked out.
He simply needs more time to heal. To complicate matters he appears to have had a slight reaction to the IVIg causing the headache to become worse and last longer. The ER staff is sure the dizziness and vomiting is from the concussion and increased from the headache.
The good news is that the head CT came back clean. There is no sign of cerebral hemorrhaging (brain bleeding), also his platelet count is up to 130k. Not as high as his last IVIg count of 170k but we are still thrilled with the 130k count.
We are just about to head back home. He is still on concussion restrictions. No active activities. No biking, running, jumping, (fighting) or similar activities. Not that he is interested in these activities anyway. LOL he just told the Dr. that he never wants a headache, vomiting, or dizziness like what he has experienced today. So time will tell if he has truly learned from this experience.
I think he has.
Back at the ER
Well we are back at the ER with Corbyn. Since he came home on Wednesday he has continued to have a bad headache that has required round the clock tylonel. Well this afternoon I pulled him out of school early because he needed additional blood work drawn to check his platelet levels. By the time I got him home around 2-2:30 he was not only dealing with a horrid headache, but dizziness, and vomiting.
After multiple calls back and forth with the johns Hopkins Peds Hematology team it was decided we needed to bring him back immediately and have another CT-scan run before anything was decided. So now here we sit and wait for test results.
After multiple calls back and forth with the johns Hopkins Peds Hematology team it was decided we needed to bring him back immediately and have another CT-scan run before anything was decided. So now here we sit and wait for test results.
Wednesday, December 17, 2014
Jade is 16!
This year as a family we celebrated Jade's birthday early. Since her dad was going to be leaving town before her birthday and missing her concert, we wanted her to get her gift while he was still here.
Jade's main gift is a new intermediate flute that will convert to open holes.
This was the best gift of all. When she first start to open it she looked at her new flute speechless and in awe not wanting to touch it. Finally, after being told to she gently touched her flute, let out a little squeal of delight, and gently picked it up. Very carefully and gingerly she put her new flute together and gasped in awe and delight with how easily it went together.
Then with the flute in her hands, she felt the weight, and informed up not only had she been oogling over the very same flute, but loved how light it was. After some coaxing she gently placed her new friend to her lips and began to let the melodies to flow. As the beautiful melodies left her fingers and flute she melted into her chair and squealed with delight again. This was a sign of true love at first sight, tough, and playing.
Not only did she have her flute for her concert, but she has been loving this special tool just for her. Now for her Masquerade Ball themed party!
Jade's main gift is a new intermediate flute that will convert to open holes.
This was the best gift of all. When she first start to open it she looked at her new flute speechless and in awe not wanting to touch it. Finally, after being told to she gently touched her flute, let out a little squeal of delight, and gently picked it up. Very carefully and gingerly she put her new flute together and gasped in awe and delight with how easily it went together.
Then with the flute in her hands, she felt the weight, and informed up not only had she been oogling over the very same flute, but loved how light it was. After some coaxing she gently placed her new friend to her lips and began to let the melodies to flow. As the beautiful melodies left her fingers and flute she melted into her chair and squealed with delight again. This was a sign of true love at first sight, tough, and playing.
Not only did she have her flute for her concert, but she has been loving this special tool just for her. Now for her Masquerade Ball themed party!
Kids Concerts and Performances!
This month has been very busy with the kids Holiday concerts and musical performances. The high school started the month off with the concert on December 1st (Yes Jade's 16th birthday). They changed the format this year and did a variety show style. This allowed for the band, orchestra, concert band, marching band, choirs, symphonic band, chamber orchestra, jazz band, and a variety of others to all perform together. The final part of the concert was the marching band all on stage, about 120 kids, playing their marching band songs for all their family members that came. Jade is in Marching and Concert band. She was glad when this week was over.
Personally, I loved the format and being able to see everyone perform together.
December 5th Fame performed
December 6th, the Marching Band marched in 2 local parades. All the kids were able to play in the morning parade, however, the afternoon parade, only the brass instruments played as it was raining to hard for the woodwinds to be in the rain. Poor Jade was so wet and cold when the afternoon parade was over.
Then that even the kids wrapped up their final Fame performance. They had some great singers this year and we could really hear them all way to the back of the stage.
The 10th gave way to the elementary kids concert. The 4th and 5th grade choir, band and orchestra. Zach is in both orchestra and choir. He is with the sopranos and plays the violin. Ellie can't wait until next year when she can join orchestra and choir.
Then tonight the middle school had their band concert for 6th grade and concert bands. Jairon had a blast on stage, but Corbyn was missing from tonight performance. Sadly even if he had not gotten in a fight and been suspended, having needed IVIg today, he would have had to miss the concert tonight anyway. However, dangerously low platelet count and emergency infusion is a much better reason to miss a concert than, suspension, emergency infusion, and head trauma observation due to starting a fight. Oh well... What can you do?
Personally, I loved the format and being able to see everyone perform together.
December 5th Fame performed
December 6th, the Marching Band marched in 2 local parades. All the kids were able to play in the morning parade, however, the afternoon parade, only the brass instruments played as it was raining to hard for the woodwinds to be in the rain. Poor Jade was so wet and cold when the afternoon parade was over.
Then that even the kids wrapped up their final Fame performance. They had some great singers this year and we could really hear them all way to the back of the stage.
The 10th gave way to the elementary kids concert. The 4th and 5th grade choir, band and orchestra. Zach is in both orchestra and choir. He is with the sopranos and plays the violin. Ellie can't wait until next year when she can join orchestra and choir.
Then tonight the middle school had their band concert for 6th grade and concert bands. Jairon had a blast on stage, but Corbyn was missing from tonight performance. Sadly even if he had not gotten in a fight and been suspended, having needed IVIg today, he would have had to miss the concert tonight anyway. However, dangerously low platelet count and emergency infusion is a much better reason to miss a concert than, suspension, emergency infusion, and head trauma observation due to starting a fight. Oh well... What can you do?
Dr Who Scarf Fight????
Yes You read that right... There was a fight between TWO teenage boys over a Dr Who scarf at the middle school yesterday. The end results were far from desirable and we can ONLY hope the primary party in this situation not only realizes the severity of the situation, but also learned a valuable lesson.
So what happened?
Well yesterday morning just before 9am I received a call from the middle school letting me know that Corbyn had been beat up. Initially, the school thought that we should press charges because there was no way he could have been involved in the situation. However, more pressing was the fact that we needed to get him to the ER immediately for a concussion evaluation and make sure there was cerebral hemorrhaging due to Corbyn being punched multiple times in the face, knocked out, and swelling already occurring.
With this being said my mind was racing a million miles. I called the peds and hematology offices and asked about which ER to take him. Both said the nearest local ER. I then called and cancelled my physical therapy appointments, Frank called work and was told to deal with the situation. We left for the school. The next call from the school was the assistant principal who informed us he was a partial instigator in the situation and she needed to talk with us as soon as we arrived.
Corbyn was already in her office and not looking happy at all. She informed us what she had already told us over the phone right in front of Corbyn and let us know she had to suspend him as well as the other child. The poor child when we agreed with her that he deserved the suspension. He had a look of horror and she (the assistant principal) had a look of relief.
That was totally not fair or right, mom and dad sided with the principal this time. Sorry kid, start a fight and you lose any chance for argument.
How did the fight start?
The kids were waiting for the 6th grader band and choir to finish practicing and got bored so they started bugging each other. Several kids thought it would be funny to poke Corbyn's Dr Who scarf. Well, Corbyn decided to tell the kids "touch my scarf again and I'll punch you in the face." After he said this, the kids took his "dare" to heart and decided to touch to see what would happen. Corbyn swung and missed the 1st boy, they kept on, so now this became a game to the others until he actually struck one of the kids. This child fought back. He fought back hard. Hard enough in fact to knock him out. Oh and he just happened to get the tallest kid in school too...
Normally, boys getting into a fight is not that big a deal. Well, that is when you have to medically normal teens. For 7 years now, as much as he wishes he were normal he is not. Corbyn has a platelet disorder called Chronic Refractive Immune Thromocytopenic Purpura or a bleeding/platelet disorder where the body kills the platelets before they can enter the bloodstream. A healthy person requires a 350,000 platelet count per unit of blood. During the time of the fight we thought Corbyn's platelet count was 33,000-44,000, however blood work proved his count was 12,000. Yes, that is only 0.03% of the required healthy count. Even at 33k-44k that is only 0.09%-0.1%. So even at 44k he would still not have 1% of the required platelets needed for clotting.
When the local ER saw the blood count of 12k, they freaked out and arranged for immediate PICU medivac to Johns Hopkins Children's Center Shock Trauma. He was transported for head trauma observation, emergency IVIg infusion, and PICU care if needed. Thank goodness the PICU care was not needed.
Yes, he is now home, exhausted, frustrated, tired from having to retell his story a millions times over, not happy about being chewed out. He is still suspended through tomorrow but hopefully having learned a lesson.
Although just because he is home, does not mean all is well. We have to watch him still due to the concussion he sustained. If his headache does not go away he have to call his hematologist back and he may still have to have another round of CT or MRI scans to check for micro-cerebral hemorrhaging. If he becomes dizzy or nauseous then we are to call the hematologist and peds dr right away and take him back to the ER. If he begins seeing spots, vomiting, and becomes dizzy, then we are not to wait, but to call 911 immediately. We are to inform them he has a platelet disorder, a recent concussion, and possible cerebral hemorrhaging combined with dangerously low platelets and that he needs immediate transport letting them know his hematology team is at Johns Hopkins.
All of this over a scarf....
So what happened?
Well yesterday morning just before 9am I received a call from the middle school letting me know that Corbyn had been beat up. Initially, the school thought that we should press charges because there was no way he could have been involved in the situation. However, more pressing was the fact that we needed to get him to the ER immediately for a concussion evaluation and make sure there was cerebral hemorrhaging due to Corbyn being punched multiple times in the face, knocked out, and swelling already occurring.
With this being said my mind was racing a million miles. I called the peds and hematology offices and asked about which ER to take him. Both said the nearest local ER. I then called and cancelled my physical therapy appointments, Frank called work and was told to deal with the situation. We left for the school. The next call from the school was the assistant principal who informed us he was a partial instigator in the situation and she needed to talk with us as soon as we arrived.
Corbyn was already in her office and not looking happy at all. She informed us what she had already told us over the phone right in front of Corbyn and let us know she had to suspend him as well as the other child. The poor child when we agreed with her that he deserved the suspension. He had a look of horror and she (the assistant principal) had a look of relief.
That was totally not fair or right, mom and dad sided with the principal this time. Sorry kid, start a fight and you lose any chance for argument.
How did the fight start?
The kids were waiting for the 6th grader band and choir to finish practicing and got bored so they started bugging each other. Several kids thought it would be funny to poke Corbyn's Dr Who scarf. Well, Corbyn decided to tell the kids "touch my scarf again and I'll punch you in the face." After he said this, the kids took his "dare" to heart and decided to touch to see what would happen. Corbyn swung and missed the 1st boy, they kept on, so now this became a game to the others until he actually struck one of the kids. This child fought back. He fought back hard. Hard enough in fact to knock him out. Oh and he just happened to get the tallest kid in school too...
Normally, boys getting into a fight is not that big a deal. Well, that is when you have to medically normal teens. For 7 years now, as much as he wishes he were normal he is not. Corbyn has a platelet disorder called Chronic Refractive Immune Thromocytopenic Purpura or a bleeding/platelet disorder where the body kills the platelets before they can enter the bloodstream. A healthy person requires a 350,000 platelet count per unit of blood. During the time of the fight we thought Corbyn's platelet count was 33,000-44,000, however blood work proved his count was 12,000. Yes, that is only 0.03% of the required healthy count. Even at 33k-44k that is only 0.09%-0.1%. So even at 44k he would still not have 1% of the required platelets needed for clotting.
When the local ER saw the blood count of 12k, they freaked out and arranged for immediate PICU medivac to Johns Hopkins Children's Center Shock Trauma. He was transported for head trauma observation, emergency IVIg infusion, and PICU care if needed. Thank goodness the PICU care was not needed.
Yes, he is now home, exhausted, frustrated, tired from having to retell his story a millions times over, not happy about being chewed out. He is still suspended through tomorrow but hopefully having learned a lesson.
Although just because he is home, does not mean all is well. We have to watch him still due to the concussion he sustained. If his headache does not go away he have to call his hematologist back and he may still have to have another round of CT or MRI scans to check for micro-cerebral hemorrhaging. If he becomes dizzy or nauseous then we are to call the hematologist and peds dr right away and take him back to the ER. If he begins seeing spots, vomiting, and becomes dizzy, then we are not to wait, but to call 911 immediately. We are to inform them he has a platelet disorder, a recent concussion, and possible cerebral hemorrhaging combined with dangerously low platelets and that he needs immediate transport letting them know his hematology team is at Johns Hopkins.
All of this over a scarf....
November/December Catch-Up
Seems I have posted very little these two months. I am going to copy from Facebook first them go back through the pictures and see what I have missed posting.
11/21
Oh my goodness! Ellie just came running out of her room telling me
"Mom! Zach is pretending to be a Weeping Angel on me!"
ROFL she was totally annoyed when I told her to just "ignore him" and go to bed.
"but mom, you can't just ignore weeping angels"
LOL yes you can if the weeping angel is your brother... (sigh)
11/21
Oh my goodness! Ellie just came running out of her room telling me
"Mom! Zach is pretending to be a Weeping Angel on me!"
ROFL she was totally annoyed when I told her to just "ignore him" and go to bed.
"but mom, you can't just ignore weeping angels"
LOL yes you can if the weeping angel is your brother... (sigh)
10/16
Tonight was a great game and the band played great! I also got some awesome pictures. Some to share here are:
Oh yeah and AHS is still undefeated!!!
Oh yeah and AHS is still undefeated!!!
playing around a bit with the pictures from last night
10/24
Tonight we had plans suddenly changed on us. Both Corbyn and Jairon excitedly packed for their scout camp out this weekend. I got the trailer and readied everything to first drop Jade off at marching band practice, drop the boys and the trailer off for the camp out. Then just as we were about to leave, I got a 3rd call from the heme team letting me know they had been discussing Corbyn's platelet drop and they had been debating whether to let him wait till Monday or to bring him in today.
My heart sank when I was asked what his plans for the weekend were because I knew that he was not going camping. When heard "scout camp" the next question was, "does he have petechei rashes or are they worse?" After calling Corbyn over and having him lift his shirt, I was not happy to see his chest covered. I was asked how soon I could get him in. With a time frame given, I was told the ER would be expecting him. Well not only was the ER waiting, so was the admitting team.
As soon as the team tooked look and saw that not only was his chest, but arms, and legs covered in the rash, he was given no choice about being admitted, getting ivig, and missing the corn maze scout camp tonight and tomorrow. At this point I am not sure he realizes he will not be going, but he sure will once he wakes in the morning.
Huge thanks to my friends who are helping get Jade home from the game, and with the kids at the house.
My heart sank when I was asked what his plans for the weekend were because I knew that he was not going camping. When heard "scout camp" the next question was, "does he have petechei rashes or are they worse?" After calling Corbyn over and having him lift his shirt, I was not happy to see his chest covered. I was asked how soon I could get him in. With a time frame given, I was told the ER would be expecting him. Well not only was the ER waiting, so was the admitting team.
As soon as the team tooked look and saw that not only was his chest, but arms, and legs covered in the rash, he was given no choice about being admitted, getting ivig, and missing the corn maze scout camp tonight and tomorrow. At this point I am not sure he realizes he will not be going, but he sure will once he wakes in the morning.
Huge thanks to my friends who are helping get Jade home from the game, and with the kids at the house.
10/25
We are home! This was a very good and interesting stay for us at Hopkins with Corbyn. We have discovered several wonderful things we did not expect at all.
First off, several days ago we saw Dr M, here on base for a routine follow up, blood work, and paperwork for the school to verify Corbyn's ITP or his platelet disorder. What we did NOT expect was to discover that his platelets had plummeted.
About 8pm last night we made our way up to 10S in the Children's center. Funny how Corbyn and Ellie have very differing opinions about the floor, play room and what is available. Once he was fully admitted on the floor we waited for the final orders and meds.
Finally, about 9 they start the pre-med infusion, then about 10:30 the ivig infusion began. This time the ivig was scheduled to run for 8 hours. Between the length of time and the pre-meds he was given, (and maybe the fact that he is older) he did not have any side effects at all. Best of all, Corbyn was able to avoid using the Lasix treatments!
This morning blood draw shows he had an immediate response to the infusion. This is a 1st for him the entire time he has had ITP! Oh and his platelets are now at 40K!!!
Plan of action, more blood work on Thursday here with Dr M. I get to talk to the school about his PE restrictions. Basically they do not want him doing anything until he is followed with his heme team (appt will be made on Mon.) LOL this did not make Corbyn happy.
The good news? Well, we may be out of the refractory phase! What is the refractory phase? Well, refractory in the medical world is non-responsive to medications. Because he responded to the ivig last night, we may have new (maybe even old) meds available for him if we are once entering the count roller coaster.
First off, several days ago we saw Dr M, here on base for a routine follow up, blood work, and paperwork for the school to verify Corbyn's ITP or his platelet disorder. What we did NOT expect was to discover that his platelets had plummeted.
About 8pm last night we made our way up to 10S in the Children's center. Funny how Corbyn and Ellie have very differing opinions about the floor, play room and what is available. Once he was fully admitted on the floor we waited for the final orders and meds.
Finally, about 9 they start the pre-med infusion, then about 10:30 the ivig infusion began. This time the ivig was scheduled to run for 8 hours. Between the length of time and the pre-meds he was given, (and maybe the fact that he is older) he did not have any side effects at all. Best of all, Corbyn was able to avoid using the Lasix treatments!
This morning blood draw shows he had an immediate response to the infusion. This is a 1st for him the entire time he has had ITP! Oh and his platelets are now at 40K!!!
Plan of action, more blood work on Thursday here with Dr M. I get to talk to the school about his PE restrictions. Basically they do not want him doing anything until he is followed with his heme team (appt will be made on Mon.) LOL this did not make Corbyn happy.
The good news? Well, we may be out of the refractory phase! What is the refractory phase? Well, refractory in the medical world is non-responsive to medications. Because he responded to the ivig last night, we may have new (maybe even old) meds available for him if we are once entering the count roller coaster.
10/31
Well tonight's Halloween party seems to have been a success. The kids played the minute to win it games very well and we had to break the kids into 4 teams. We had a LOT of kids show up this year!
The games we played:
Eyeball super ball toss into the cauldron- yes bouncing super balls across the room into a small black plastic cauldron
Bat toss into a bucket-tossing plastic bats into a bucket across the room
Vampire Pie (chocolate pudding with whipped cream) eating race. The kids had to eat their pie the fastest with vampire teeth in and using no hands.
Spider toss-plastic spider toss into a formula can
Mummy bugger movers- moving mini marshmallows with a straw from a plate into a small cup
I think that is all we did. The pictures will tell for sure once I get them uploaded.
The games we played:
Eyeball super ball toss into the cauldron- yes bouncing super balls across the room into a small black plastic cauldron
Bat toss into a bucket-tossing plastic bats into a bucket across the room
Vampire Pie (chocolate pudding with whipped cream) eating race. The kids had to eat their pie the fastest with vampire teeth in and using no hands.
Spider toss-plastic spider toss into a formula can
Mummy bugger movers- moving mini marshmallows with a straw from a plate into a small cup
I think that is all we did. The pictures will tell for sure once I get them uploaded.
Ellie is 9!/Jairon is 13
10/16
Yesterday was Chantelle's 9th birthday. She was thrilled to learn the missionaries had joined us for dinner. To make dinner even more special, we made a very simple, steamed rice, chicken, apple slice, gravy, and apple juice meal. With the exception of the gravy, Ellie was able to eat everything.
Celidah surprised her even more by grabbing some Jone's Soda, the only soda she can have. Jade looked up cooking with chia seeds and found a pudding recipe using only the finely ground chia seeds, coconut milk, and cocoa powder and created an Ellie pudding for her to trial.
At first Ellie thought she was going to eat everything, but realized quickly that if she only at a little bit she would be able to have some of her dessert too.
The missionaries were a bit puzzled when we reminded her to only eat what her tummy was happy with and not to try eating everything, even if she only ate a few bites of each item. Once we explained to them why she eats so little, laughingly she said, "It would be very bad to go back to the hospital just for eating everything. I don't want to say, when they say, "why are you here this time?" "well because I got stuffed like turkey on my birthday dinner!"
Her "cake" was created using flower a ice cube tray filled with applesauce and the candles in the center of each flower placed in the freezer. Once frozen the applesauce flowers became perfect candle holders.
Ellie got a tie-dyed outfit for her to help finish making her Frankenstein's cat costume, a hat and glove set, fabric paint. However, the one thing that made her scream with joy was the sheet music for Hallelujah. She has been asking for this song for a long time now.
10/24
Jairon got to celebrate his birthday with the scouts during a camp out. He was SO excited to attend a corn maze camp out as this was not only his first one but it fell on his birthday. After coming home he would not stop talking about all the awesome things he did, but came home with some cuts and bruises from the cornstalks.
Celidah surprised her even more by grabbing some Jone's Soda, the only soda she can have. Jade looked up cooking with chia seeds and found a pudding recipe using only the finely ground chia seeds, coconut milk, and cocoa powder and created an Ellie pudding for her to trial.
At first Ellie thought she was going to eat everything, but realized quickly that if she only at a little bit she would be able to have some of her dessert too.
The missionaries were a bit puzzled when we reminded her to only eat what her tummy was happy with and not to try eating everything, even if she only ate a few bites of each item. Once we explained to them why she eats so little, laughingly she said, "It would be very bad to go back to the hospital just for eating everything. I don't want to say, when they say, "why are you here this time?" "well because I got stuffed like turkey on my birthday dinner!"
Her "cake" was created using flower a ice cube tray filled with applesauce and the candles in the center of each flower placed in the freezer. Once frozen the applesauce flowers became perfect candle holders.
Ellie got a tie-dyed outfit for her to help finish making her Frankenstein's cat costume, a hat and glove set, fabric paint. However, the one thing that made her scream with joy was the sheet music for Hallelujah. She has been asking for this song for a long time now.
10/24
Jairon got to celebrate his birthday with the scouts during a camp out. He was SO excited to attend a corn maze camp out as this was not only his first one but it fell on his birthday. After coming home he would not stop talking about all the awesome things he did, but came home with some cuts and bruises from the cornstalks.
Catching Up- October
10/5
Today started fire prevention week. Due to this the base had fire trucks, ambulances, their mascot cart and a collection of fire and police men wandering the neighborhood. All was well until the blow-up man mascot stood up and started walking towards the kids. LOL the sudden and unexpected movement startled a couple kids and scared a couple others.
Thank goodness Frank was outside because he was able to calm Ava as I calmed the younger kids. Ava had sensed their apprehension and gone into protective mode. She deliberately placed herself between the kids and firemen. Once Ava and the kids were calmed, Ava understood they were not a threat and was very happy to greet them and let the kids leave the yard.
10/6
This afternoon I was working with Ellie on her math homework. Throughout she kept complaining about how Mrs B. will not let her just do her 3rd grade math in her head. "But mom after all, math is just so easy and I just get it when we do my homework. Why can't I just give the answer?"
I explained to her that there are several ways to show her work and that while right now showing her work may seem annoying, boring, tedious, there is a reason. Once her homework was finished we went to Khan Academy and looked at a basic algebra equation.
Very quickly she understood that 7x=14 means x=2, 5x=15 means x=3 and the next equation sample kind of stumped her at first. 2x+4x=18 meaning x=3. While the equation was being explained, she paused the video and let me know that the last one had to many numbers running around in her to keep track.
At this point we restarted that example and I let her see how the example was showing "keeping track of work" just like she was. Suddenly, she got all excited and understood what was going on. Once she understood, she looked at me proudly and exclaimed, "Hey I understand this, I am a mathematician after all!"
10/9
This morning we woke the kids up extra early to try reversing the order of the day. Instead of trying to end the day with scripture study (and often failing) we decided to begin the day with scripture and prayer.
The poor kids were groggy and confused as we started. This morning Jairon grabbed a random scripture mastery card and began reading, "And if it so be that you should labor all your days in crying resistance unto this people..." At first the "resistance was not noticed then suddenly dad, Celidah, and Jade all started laughing at the same time. Confused I asked if he meant "repentance?" Jairon confused looked back at the card and shrugged his shoulders saying, "uh huh, yeah, repentance."
Well by this point, resistance had already been said and a new meaning had begun to set in. Yes, the Borg had infiltrated our first early attempt this morning. Borg or not, the more souls that are brought to the light of Christ, how great will our joy be?
Yes, I love how kids bring a vastly different perspective to gospel topics LOL
10/9
Last night I get news from my mother that the colon cancer she thought she battled and was in remission has progressed to her liver. At this point what we do know is when colon cancer reaches the liver it is stage 4 and the prior treatments did not work like expected.
If you would please keep her in your thoughts and prayers as she enters the next stage of her journey through her battle that would be greatly appreciated. She has an amazing team of doctors she to help her, however there are many unknown factors at play.
Our family has a Thanksgiving tradition of collecting things we are thankful throughout the month of November then sharing on Thanksgiving before eating.
I challenge everyone to find and collect one thankful act or blessing each day in November leading up to Thanksgiving, then sharing each act and blessing with the group before enjoying your amazing feast.
Today started fire prevention week. Due to this the base had fire trucks, ambulances, their mascot cart and a collection of fire and police men wandering the neighborhood. All was well until the blow-up man mascot stood up and started walking towards the kids. LOL the sudden and unexpected movement startled a couple kids and scared a couple others.
Thank goodness Frank was outside because he was able to calm Ava as I calmed the younger kids. Ava had sensed their apprehension and gone into protective mode. She deliberately placed herself between the kids and firemen. Once Ava and the kids were calmed, Ava understood they were not a threat and was very happy to greet them and let the kids leave the yard.
10/6
This afternoon I was working with Ellie on her math homework. Throughout she kept complaining about how Mrs B. will not let her just do her 3rd grade math in her head. "But mom after all, math is just so easy and I just get it when we do my homework. Why can't I just give the answer?"
I explained to her that there are several ways to show her work and that while right now showing her work may seem annoying, boring, tedious, there is a reason. Once her homework was finished we went to Khan Academy and looked at a basic algebra equation.
Very quickly she understood that 7x=14 means x=2, 5x=15 means x=3 and the next equation sample kind of stumped her at first. 2x+4x=18 meaning x=3. While the equation was being explained, she paused the video and let me know that the last one had to many numbers running around in her to keep track.
At this point we restarted that example and I let her see how the example was showing "keeping track of work" just like she was. Suddenly, she got all excited and understood what was going on. Once she understood, she looked at me proudly and exclaimed, "Hey I understand this, I am a mathematician after all!"
10/9
This morning we woke the kids up extra early to try reversing the order of the day. Instead of trying to end the day with scripture study (and often failing) we decided to begin the day with scripture and prayer.
The poor kids were groggy and confused as we started. This morning Jairon grabbed a random scripture mastery card and began reading, "And if it so be that you should labor all your days in crying resistance unto this people..." At first the "resistance was not noticed then suddenly dad, Celidah, and Jade all started laughing at the same time. Confused I asked if he meant "repentance?" Jairon confused looked back at the card and shrugged his shoulders saying, "uh huh, yeah, repentance."
Well by this point, resistance had already been said and a new meaning had begun to set in. Yes, the Borg had infiltrated our first early attempt this morning. Borg or not, the more souls that are brought to the light of Christ, how great will our joy be?
Yes, I love how kids bring a vastly different perspective to gospel topics LOL
10/9
Last night I get news from my mother that the colon cancer she thought she battled and was in remission has progressed to her liver. At this point what we do know is when colon cancer reaches the liver it is stage 4 and the prior treatments did not work like expected.
If you would please keep her in your thoughts and prayers as she enters the next stage of her journey through her battle that would be greatly appreciated. She has an amazing team of doctors she to help her, however there are many unknown factors at play.
Our family has a Thanksgiving tradition of collecting things we are thankful throughout the month of November then sharing on Thanksgiving before eating.
I challenge everyone to find and collect one thankful act or blessing each day in November leading up to Thanksgiving, then sharing each act and blessing with the group before enjoying your amazing feast.
catching up
Let's see, update:
9/24
Yesterday was Ellie's first day back at school since she got sick on the 9th. She was so excited to go back, and just wanted to be back in the classroom. While she did not make the full day, she did make it through half the day before she was to exhausted to continue on.
We are so glad that she is slowly getting better and able to be back in school where she wants to be.
All six kids have finally finished their eye exams and as it turns out, all 6 kids do need glasses. While the glasses are needed for reading and school work they have all been given the option to choose whether or not to wear glasses while they are playing outside or during recess.
We also discovered that Ellie's right optic nerve is different than her right optic nerve. At this point it is something to know about and monitor. It does not look like her different optic nerve has anything to do with any of her other congenital defects or chromosomal abnormalities. However, as she has proven several times already, just because things seem to be or not to be linked, does not mean that is true. So now we have one more thing to watch and follow to make sure her optic nerves do not change any more.
9/29
Well we just got news back on the car. The throttle body and plate have been cleaned up for now and the car is idling for now. However both need to be replaced ASAP. Also the fuel pump is not pushing gas through with enough pressure. The car running at 7lbs below what it should be.
At least so far the car is needing parts replaced as few at a time with each paycheck and not all at once...
However, we still have to get glasses for all 6 kids tomorrow...
9/24
Yesterday was Ellie's first day back at school since she got sick on the 9th. She was so excited to go back, and just wanted to be back in the classroom. While she did not make the full day, she did make it through half the day before she was to exhausted to continue on.
We are so glad that she is slowly getting better and able to be back in school where she wants to be.
All six kids have finally finished their eye exams and as it turns out, all 6 kids do need glasses. While the glasses are needed for reading and school work they have all been given the option to choose whether or not to wear glasses while they are playing outside or during recess.
We also discovered that Ellie's right optic nerve is different than her right optic nerve. At this point it is something to know about and monitor. It does not look like her different optic nerve has anything to do with any of her other congenital defects or chromosomal abnormalities. However, as she has proven several times already, just because things seem to be or not to be linked, does not mean that is true. So now we have one more thing to watch and follow to make sure her optic nerves do not change any more.
9/29
Well we just got news back on the car. The throttle body and plate have been cleaned up for now and the car is idling for now. However both need to be replaced ASAP. Also the fuel pump is not pushing gas through with enough pressure. The car running at 7lbs below what it should be.
At least so far the car is needing parts replaced as few at a time with each paycheck and not all at once...
However, we still have to get glasses for all 6 kids tomorrow...
Monday, September 22, 2014
GI Issues start Again
Looking back...
This time the GI issues started on the 8th but at that point only mildly. On Monday I was at the school for a 504 meeting concerning the treatment and care plan for Ellie while she is in public school. We discussed her medical and feeding needs and how these tie into her academic abilities. On Monday Ellie was still ok and not much was going on that we really noticed.
Tuesday September 9th, however, everything changed. I got a call from the school letting me know that she was venting everything out as fast as it was going in and that not only was she venting her formula, but she was also venting green and brown gunk as well. She also had nearly filled her 2nd ferrall bag in under 2 hours, and by the time we arrived.
A call to Dr M ( the peds office) and her GI team and both said ER. In the ER they determined that she was seriously backed up and a good clean out was needed. Back home we were and we started to the best of our ability the clean out as instructed. Then we were to follow up with GI and Dr M.
When we saw the GI on Friday September 12th during an emergency appointment we were one of our best chances of keeping her out of the hospital was to keep the pedialyte running with 6-8 caps ( up to 1 cup of powder) of miralax in every 500ml (2 cup bag) and if possible he wanted us to have a bag running in both her j and g tubes as long as she tolerated it. (I later discovered that due to my exhaustion I heard wrong. I was supposed to have 1 cup of miralax per liter of pedialyte. Still a lot of pedialyte for her age)
Yes, this is an insane amount for a child. In fact, this is the prescribed amount for an adult to take prior to an endoscopy. For such a procedure, an adult prescription call for 4 cups of liquid to 1 cup of powder, drink, deal with the effects and repeat 12 hours hours later. Normally, for most people, their system is cleaned within 18-24 hours of starting this process. This is not working the same for Ellie though...
We have now been doing this since we returned home from her appointment yesterday morning. The GI doctor told me to just keep going as long as we need because if she was in the hospital they would do the same thing anyway and a large amount will not hurt her as long as I am able to keep her fluids up like I had been working on.
During her ER visit she had an xray take to check her j-tube placement, it was clear that she was extremely backed up again and needed cleaning out ASAP. (TMI part) In the beginning, we thought the process was working and cleaning her out because the diarrhea hit hard and heavy. Well only for about 18 hours. Mind you by this point we had gone through maybe 4 or 5 cups of miralax powder in our child who is barley 60 lbs.
However, now we know things are finally moving through and it looks like things may actually be starting to work through finally. After 2 1/2 large bottles she is pooping normally now? Hopefully, we are able to get her nice and cleaned out for once. If things are not running clear by Monday, despite everything we are trying here at home, she will still have to be admitted for a much stronger clean out.
Monday the 15th we were back to see Dr M. After the KUB came back showing that we had made no progress I stopped the MIralax to give her body a break. Within a couple hours the diarrhea had completely stopped and by Tuesday Ellie was begging for more Miralax because her tummy was hurting and she was feeling sick again.
Wednesday the 17th took us to the GI clinic once again. The decision was made to admit her for the help she needed. However, as soon as this decision was made, it was also cancelled. There were 6 children in the ER waiting for beds on 10S and 3 had waited all night. Ellie was now child #7. Knowing this and knowing she was not in immediate danger, the decision was to send her back home for one last attempt to keep her home.
New game plan: Make sure to have fluids running at a minimum of 60ml's. Start formula at half strength and run at 30 ml's through her j-tube and pedialyte through the g-tube. If she started vomiting or venting the formula out into her g-tube then we were to take her right back to the ER and have her admitted.
We waited until Wednesday afternoon to take her back. I had a dental appointment that I had to make (and stop rescheduling) and I also had an MRI I could not reschedule again.
Sadly (and as expected by her GI team) she was not able to escape hospitalization. Friday the 19th we had to return to the ER once again and from there we waited until they had a room for her. She had to have the hospital strength Golytely to clean her little body out.\
While she had a short stay this time, the purpose was to clean her out enough to send her back home. The best part of this stay besides the length, is the fact that the staff, her doctors, and those on call could tell that Frank and I know what we are doing with her and trusted us to send her home before she was even tolerating formula. We were given the instructions for working her formula back up to full strength and the rate. How long to work this over so her body is not taxed forcing it to shut down again.
Being treated like someone who not only knows what is best for your own child, but who also understands medical talk means more than many will never understand.
September 4-Feeding Tube Presentation
Ellie was able to give her presentation to her class today. Not only was she excited but she did very well.
The list of items we took for her include:
Poster titled: Pictures from My Childhood (Pictures of Ellie from her NICU days to now)
Mini Buddy™ she helped make for her class
AMT training doll
NG tube, Non-functioning G-tubes (4)
Duoderm (cut into 4 pieces)
several pieces of Tagaderm
Grip-lock (for Ellie)
Foley Catheter- to replicate a J-tube inside the training doll
List of questions from the suggested questions found from our FB groups and Ellie's to each question.
IV pole, extra bag of formula,
Unopened can of Formula and Pedialyte
Empty feeding pump and Ferrell bags
Poster titled: Pictures from My Childhood (Pictures of Ellie from her NICU days to now)
Mini Buddy™ she helped make for her class
AMT training doll
NG tube, Non-functioning G-tubes (4)
Duoderm (cut into 4 pieces)
several pieces of Tagaderm
Grip-lock (for Ellie)
Foley Catheter- to replicate a J-tube inside the training doll
List of questions from the suggested questions found from our FB groups and Ellie's to each question.
IV pole, extra bag of formula,
Unopened can of Formula and Pedialyte
Empty feeding pump and Ferrell bags
She started out saying that she was going to read a book to the class about her that I wrote when she was in kindergarten. Very quickly, I realized she was taking off by herself without even looking at her book. Periodically, I would ask a question such as "what makes you just like your friends and classmates?" "When you are outside, what do you like to do?" These simple questions kept her on track.
She talked about eating, what she can and how it makes her feel to not be able to eat much at all. Her teacher asked if she has always been able to only a few foods. With this question, she looked at the floor and looked sad. She told her entire class that when we moved here, her doctors told her she was not allowed to eat anything and for a year, she could only have small drinks of water. The school nurse who was also in the room, let the kids know that when she was finally allowed to start drinking again, that she had to mix something in her drinks to make her water really thick.
The kids in her class really like being able to touch and handle the feeding tubes, tagaderm, and duoderm. There were wonderful questions asked today. While the kids loved the cushion-y feel of the duoderm, many thought it was very stinky. They were all fascinated with feel of the tagaderm. When I told them it was a like a 2nd layer of skin, they were not sure what to think about that.
We talked briefly about what a stoma is. I let them know that a stoma is a hole placed in the body on purpose, for a specific reason. I then asked, "Does anyone have your ears pierced?" I let them know the ear piercing hole is also a stoma, because they have to take care of their ears and keep their earrings in or the hole will close up. I also let them know that there was never a need to use the word stoma with them.
We then showed them the training doll, I showed them the tiny hole (stoma) in the front, and then the big hole in the back. They all giggled at the doll with a huge hole in the back. At this point I let them know that Ellie has a special kind of feeding tube that the doctors have to put in and when they do it becomes coiled in her body because it follows her intestines. At that point I passed the doll around so the kids could all see how far down in the doll the "J-Tube) (aka foley catheter) would be in the doll.
August 2013
The adjustments on Celidah's braces are coming along. She has a couple stubborn teeth that are fighting moving into place.
August 16th, for cub scouts, Zach had to build a marshmallow catapult. The idea behind the project was to see how far he could make his marshmallows fly. Well having already built catapults with the GEMS camp program, I had him think about what he did there to make his work better and what he needed to do differently with what he was given to make his work better.
After some experimentation and playing around he discovered how to make his catapult work really well. He began testing his project with dog treats. After fiddling a bit more, he discovered his catapult was shoot the entire distance of the back yard and sometimes further. He could not wait to try a marshmallow.
He won the prize for the furthest shooting catapult. Ava catching her treats
https://www.facebook.com/video.php?v=844281415583160&set=vb.100000039273069&type=2&theater
August 19th
August 16th, for cub scouts, Zach had to build a marshmallow catapult. The idea behind the project was to see how far he could make his marshmallows fly. Well having already built catapults with the GEMS camp program, I had him think about what he did there to make his work better and what he needed to do differently with what he was given to make his work better.
After some experimentation and playing around he discovered how to make his catapult work really well. He began testing his project with dog treats. After fiddling a bit more, he discovered his catapult was shoot the entire distance of the back yard and sometimes further. He could not wait to try a marshmallow.
He won the prize for the furthest shooting catapult. Ava catching her treats
https://www.facebook.com/video.php?v=844281415583160&set=vb.100000039273069&type=2&theater
August 19th
Yesterday was Ellie's turn to see the doctor so we could get all her forms together allowing her to return to school. While she did well with homeschooling, she has been begging to returning back to the elementary school with her brother and her friends. She has done much better this past year health wise and had a normal PFT (pulmonary function test- how well her lungs work). While her PFT was in the lower range, it still fell within the normal range.
We are hoping that the year away from the school allowed her body and immune system to build up enough that she can handle school without to many illnesses this year.
Not only that, she has grown A LOT! When she was in the 1st grade she still looked like a toddler and was wearing toddler clothing. Over the last year she has grown and gained enough weight that we have had to get rid of all her 4T clothing and she is now in 7/8 clothing and finally wearing children's shoes. She could have worn size 2 shoes and maybe worn them just fine, but we went ahead and got her tennis shoes 2 1/2 to let them last longer. Her 1 1/2 church shoes are still ok.
Yesterday as she was sitting on the exam table and talking with her doctor he and I, at almost the same time, told each other how big and grown up she is getting. He said he could not believe how much she has grown since we arrived here. At the age of 6 she was barely 35 lbs and all skin and bone. Now she is almost 9, 58 lbs, and the average size of 3rd grader.
Her coordination is still not the same as most kids her age, she gets tired and sick very easily, and her body just runs down fast. But on the outside, she looks like a child 2 months from 9.
August 22
Today Ellie had her follow up at Johns Hopkins where we saw her GI dr. Both Ellie and her GI were excited to see each other. Her dr was happily surprised with how much she has grown.
Dr A and Ellie looked at her weight and growth charts together on the computer and Ellie was curious about what the numbers and lines meant. Dr A was wonderful with explaining to this almost 9 yr old child what was being measured and why this was important. Most exciting to both was when Dr A told Ellie that her height had jumped from 32% up to 58%. Her weight has also jumped. I forget what her weight was but her weight is now 33%. Looking at her chart, Ellie has grown 6 inches in the last year and gained about 10lbs. No wonder this child has needed an entire new wardrobe for school.
When she ended the 1st grade, she was still wearing 4t clothing and barely at that. Pants she had to wear a belt or pull up, sometimes both just to keep her pants up. She is now wearing a 7/8. Looking at her pictures I knew she had grown, I just did not know how much until today.
She was also as brave as she could have been for the blood work she needed today. Coming from a child who used to have full out panic attacks, today she did not. She still freaks out badly and fights the blood work, but not as bad as she used to.
July 2014
During the annual 4th of July pancake breakfast the kids loved the breakfast. The boys helped with flag raising ceremony put together by the scouts. Inside after eating all the primary aged children sang The Star Spangled Banner and were all thrilled to have sung as a group afterwards.
The pancake eating contest was a huge hit again. LOL Corbyn won the Golden Pancake Stack. This trophy was created by making felt gold pancakes piled on each other, glued onto a heavy plastic plate, with a plastic fork and knife also glued to the plate. This plate was glued to a small wooden box and all was painted gold. Very cute creation.
July 13- Thanks to a wonderful gift of Six Flags tickets for the whole family we were able to take the kids to Six Flags this summer. Not only did they have a blast, but Ellie got to ride her very first big kid roller coaster. Every time we take Ava out for long working days she does better and better. She totally loved her task as a service dog at Six Flags. Not only was she "working" but she was with me all day long and able to help as needed.
July 15th, Mini Buddy as an organization is getting closer to having the 501 (c) (3) status we have been working towards. We (currently as of Sept) have the final papers ready and are waiting the final word back.
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.
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.
Monday, June 2, 2014
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.
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.
Saturday, May 31, 2014
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
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
Sunday, May 11, 2014
Eighteen years ago, I was counting
down the days to May 24th. 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 3rd
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.
Thursday, May 8, 2014
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.
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.
Monday, May 5, 2014
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!)
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!)
Monday, April 28, 2014
Gaining More Understanding
Today I had trigger point injections on my shoulders, neck, and back of my scalp. I have to admit the scalp injections were the weirdest by far. I was given them on the scalp to try and help reduce both the frequency and severity of my migraines.
This morning, once again I woke up with one (sigh), this one offered tons of pressure behind my right eye. Dr S was right with the final scalp injection that within a few minutes the pressure would leave.
The muscles on my neck and shoulders were tight as rocks when he started the injections. By the end, they had already loosened greatly. However, unfortunately I am looking at a series of trigger point for a while before my muscles relearn how to relax.
One thing I have learned through the trigger point process process here is through the combination of ultra sound and trigger point this office can identify exactly which muscles are tightening up and why. In my case these muscles have fibrous tissue within the muscle causing cramping, pain, and other issues. Because of this fibrous tissue the nerve endings are not responding properly. Combine this with arthritis and well, yeah there are days I am quite uncomfortable.
This morning, once again I woke up with one (sigh), this one offered tons of pressure behind my right eye. Dr S was right with the final scalp injection that within a few minutes the pressure would leave.
The muscles on my neck and shoulders were tight as rocks when he started the injections. By the end, they had already loosened greatly. However, unfortunately I am looking at a series of trigger point for a while before my muscles relearn how to relax.
One thing I have learned through the trigger point process process here is through the combination of ultra sound and trigger point this office can identify exactly which muscles are tightening up and why. In my case these muscles have fibrous tissue within the muscle causing cramping, pain, and other issues. Because of this fibrous tissue the nerve endings are not responding properly. Combine this with arthritis and well, yeah there are days I am quite uncomfortable.
Thursday, April 24, 2014
Busy Month
This month has been a crazy busy month for us. To start with we had the normal physicals for the kids. These physicals are also important for paperwork that is needed to be updated. Well in the process we ended with unexpected specialty appointments for several kids.
Celidah was referred to neurology for her migraines because they have suddenly increased and been worse. Thank goodness the MRI showed that her migraines are just that, migraines. She now just follows up as needed for med refills, or if her migraines become worse again.
Jade also received a neurology referral. She has been having severe headaches, dizzy spells, and nearly passing out. After seeing the neurologist she was referred to a cardiologist and connective tissue/joint specialist. She too needed and MRI, blood work, follow up, and more dr's.
We discovered her "monthly" cycles are not regular enough, to heavy, and since they have been affecting her school attendance, she needs additional meds to help stabilize the hormones within her system. If this does not work, her Dr, has other treatment options to help her out.
Right now the biggest concerns for the neurologist to either confirm or rule our for Jade are chiari malformation (something with the brain stem *I think*) and Elhers Danlos Syndrome (EDS). We already know she has hypermobility syndrome, and according to the neurologist on the (something) bending scale she hit all the bending points plus some others.
He said the dizziness or vertigo could either be heart related or chiari related. Well we now know that at this point these are not cardio related. She had an echo and EKG done and both came back good. However, her cardiologist said with EDS being suspected she now needs to being followed by a cardiologist every 6 months to reevaluate and make sure things have not changed.
Zach also needed additional specialty appointments. (sigh)... He was sent off to an orthopedic specialist. During this appointment he too was diagnosed with severe hypermobility syndrome, and sent to physical therapy to start with. She also recommended that he see dermatology for the excema looking rash he has. She does not think it looks right, and with the ointment not helping and his rash getting worse after playing outside, combined with his joint pain, he was also referred to rheumatology.
The best part was that Ellie is still growing and gaining (on her curve). She is also stable right now with her long list of medical issues. We did not need to add any new doctors to her current comprehensive team.
Corbyn's platelets, while they did drop, they have returned close enough to his base. He was at 35K and he is now at 25K. This is close enough for us and his hematologist at John Hopkins. Oh and Corbyn was able to have his Flovent dropped completely! If he continues without needing his rescue inhalator for the next 6-8 months we may be able to have the asthma removed! He will only have ITP!! We are so happy about that.
Jairon only has asthma and during his physical was trying to convince his doctor he did not need his asthma meds either nor was he coughing. LOL he was giving this argument as he was coughing. The kids doctor and I just looked at each other and smiled knowing what what really going on and he was not ready to even be dropped down yet.
However, if the older kids are able to go all summer without any asthma issues then we will try dropping them down one dose step and see how they do. Ellie on the other hand will not be able to be dropped down. Every time we have tried, she gets sick and ends up back in the hospital.
Celidah was referred to neurology for her migraines because they have suddenly increased and been worse. Thank goodness the MRI showed that her migraines are just that, migraines. She now just follows up as needed for med refills, or if her migraines become worse again.
Jade also received a neurology referral. She has been having severe headaches, dizzy spells, and nearly passing out. After seeing the neurologist she was referred to a cardiologist and connective tissue/joint specialist. She too needed and MRI, blood work, follow up, and more dr's.
We discovered her "monthly" cycles are not regular enough, to heavy, and since they have been affecting her school attendance, she needs additional meds to help stabilize the hormones within her system. If this does not work, her Dr, has other treatment options to help her out.
Right now the biggest concerns for the neurologist to either confirm or rule our for Jade are chiari malformation (something with the brain stem *I think*) and Elhers Danlos Syndrome (EDS). We already know she has hypermobility syndrome, and according to the neurologist on the (something) bending scale she hit all the bending points plus some others.
He said the dizziness or vertigo could either be heart related or chiari related. Well we now know that at this point these are not cardio related. She had an echo and EKG done and both came back good. However, her cardiologist said with EDS being suspected she now needs to being followed by a cardiologist every 6 months to reevaluate and make sure things have not changed.
Zach also needed additional specialty appointments. (sigh)... He was sent off to an orthopedic specialist. During this appointment he too was diagnosed with severe hypermobility syndrome, and sent to physical therapy to start with. She also recommended that he see dermatology for the excema looking rash he has. She does not think it looks right, and with the ointment not helping and his rash getting worse after playing outside, combined with his joint pain, he was also referred to rheumatology.
The best part was that Ellie is still growing and gaining (on her curve). She is also stable right now with her long list of medical issues. We did not need to add any new doctors to her current comprehensive team.
Corbyn's platelets, while they did drop, they have returned close enough to his base. He was at 35K and he is now at 25K. This is close enough for us and his hematologist at John Hopkins. Oh and Corbyn was able to have his Flovent dropped completely! If he continues without needing his rescue inhalator for the next 6-8 months we may be able to have the asthma removed! He will only have ITP!! We are so happy about that.
Jairon only has asthma and during his physical was trying to convince his doctor he did not need his asthma meds either nor was he coughing. LOL he was giving this argument as he was coughing. The kids doctor and I just looked at each other and smiled knowing what what really going on and he was not ready to even be dropped down yet.
However, if the older kids are able to go all summer without any asthma issues then we will try dropping them down one dose step and see how they do. Ellie on the other hand will not be able to be dropped down. Every time we have tried, she gets sick and ends up back in the hospital.
Thursday, April 17, 2014
Bookworms....
In someways having a bookworm is a wonderful thing. I totally love the fact that all 6 kids love reading and all read above grade level. However, what I do not like is when a child disregards instructions from his teacher regarding classwork, homework, and important projects just because they "are to boring."
Granted there is a large variety of books available to read that are far more interesting to read than text books. But when these books begin effecting grades, then a line must be drawn.
Yes, this is where we are as of today with Jairon. As of today his teachers and I have all agreed that he is not allowed to bring any books to school unless they are assigned to read in the classroom. Sadly, even the reading/literature teacher agreed he needs to have restricted reading time in school. This is a decision she hates having to make. Yet, if he is going to have a chance to focus and bring his grades up, this is the right decision.
Granted there is a large variety of books available to read that are far more interesting to read than text books. But when these books begin effecting grades, then a line must be drawn.
Yes, this is where we are as of today with Jairon. As of today his teachers and I have all agreed that he is not allowed to bring any books to school unless they are assigned to read in the classroom. Sadly, even the reading/literature teacher agreed he needs to have restricted reading time in school. This is a decision she hates having to make. Yet, if he is going to have a chance to focus and bring his grades up, this is the right decision.
Growing Up
Yesterday Zach was so excited to show me how grown up he is becoming. The older kids had a temple trip and knowing I was only leaving base for a few minutes, I forgot to grab my military ID. I did not realize this until after the kids had left for Washington DC and the girls had theirs with them.
Well, hoping the phone was at home I called. Zach answered and found my military ID, hopped on his bike and peddled just off base to one of the DOD contractor office buildings. The smile he had as he met me with my ID could not have been any bigger.
We loaded his bike into the back of the truck and proceeded home. The gate guard laughed at him as he just had to tell him he got to ride off base on his bike to bring me ID.
He was bouncing off the wall with excitement when he got to tell dad about his exciting bike ride off base.
Well, hoping the phone was at home I called. Zach answered and found my military ID, hopped on his bike and peddled just off base to one of the DOD contractor office buildings. The smile he had as he met me with my ID could not have been any bigger.
We loaded his bike into the back of the truck and proceeded home. The gate guard laughed at him as he just had to tell him he got to ride off base on his bike to bring me ID.
He was bouncing off the wall with excitement when he got to tell dad about his exciting bike ride off base.
Friday, April 11, 2014
Journey Through Autism, Continues
By the time Jade was five, we were knee deep in her daily therapy sessions, weekly dance and gymnastic classes. We had found the best selection of therapists that responded with her and she was making progress.
One of the struggles we faced was our fight against medicating her. Every doctor we had seen had tried to force to put her on the normal "autism medication cocktail" right after her official diagnosis. This was not an option to me, as at the age of two, I refused to try the medications first. Our next option was dietary.
Our next stop was to see an allergy/GI specialist because she still not growing or gaining weight. At the age of 5, she was still in 2t clothing. After allergy testing we discovered she had many food allergies. With this in mind we placed her on an elimination diet, carefully controlled her food, and made everything from scratch.
Once the "offending" foods for her body had been eliminated, and her system cleansed, her body slowly started growing and gaining weight.
Additionally, during this time, we began teaching her sign language. Implemented PEC's (or Picture Exchange Communication System) in the house, labeled EVERY with the word and picture of the sign, and learned a new way to communicate.
During this time she was in therapy, we rarely heard a word come from her mouth. Jade communicated best with noises, fits, screams, crying, and melt downs. Learning how to handle her melt downs and sensory issues was important for the family and her safety.
Two key comments I remember making to Jade that helped me realize her thinking pattern were "sit down and plant your feet" and "knock it off." When she was told to plant her feet, she did just that. After looking for her I found her out side looking lost and confused with her feet buried in the dirt. After being told to "knock it off" (some behavior) she went running to her room, grabbed all her blocks. Came running giggling with her shirt stuffed. Very carefully, Jade lined up all her wooden blocks on the back of the couch, then proceeded to hit them as hard as she could across the room.
Once I told her (without realizing what I was doing), to "knock it off", so she did just that. Lined her blocks up once again, and knocked her blocks off the back of couch. She did this over and over until I took her blocks, resulting in another fit. She was confused and lost. Why? She was doing exactly as I had just told her to do several times in a row.
Suddenly realizing what was going on I tried to get her playing with her blocks in a different fashion. This was not going to happen. She dead set on following my instructions. At this point, I simply bit my lips and let her "knock it off" until she was finished.
With this realization, I was finally able to reach out to her and peek inside her boxed up world. We were finally able to start experimenting as a family with new ways to try bond, stop her temper fits, increase communication skills, and learn new things about her.
During this time, I learned to accept the fact that a child with autism is just that. A child with autism and perfect as they are. I also became to see the world of autism like that of a remote controlled toy.
Some remote controlled toys are only programmed to move forwards and back, others can also move side to side. While others have no limitations in their movements. Why children with autism are not wired to think and behave like other child is something we may never know. However, I know my daughter has overcome so many obstacles in her life to become who she is.
I also know that because of who she is, and what she has become, she can and will become whatever she puts her mind to.
By the time Jade was five, we were knee deep in her daily therapy sessions, weekly dance and gymnastic classes. We had found the best selection of therapists that responded with her and she was making progress.
One of the struggles we faced was our fight against medicating her. Every doctor we had seen had tried to force to put her on the normal "autism medication cocktail" right after her official diagnosis. This was not an option to me, as at the age of two, I refused to try the medications first. Our next option was dietary.
Our next stop was to see an allergy/GI specialist because she still not growing or gaining weight. At the age of 5, she was still in 2t clothing. After allergy testing we discovered she had many food allergies. With this in mind we placed her on an elimination diet, carefully controlled her food, and made everything from scratch.
Once the "offending" foods for her body had been eliminated, and her system cleansed, her body slowly started growing and gaining weight.
Additionally, during this time, we began teaching her sign language. Implemented PEC's (or Picture Exchange Communication System) in the house, labeled EVERY with the word and picture of the sign, and learned a new way to communicate.
During this time she was in therapy, we rarely heard a word come from her mouth. Jade communicated best with noises, fits, screams, crying, and melt downs. Learning how to handle her melt downs and sensory issues was important for the family and her safety.
Two key comments I remember making to Jade that helped me realize her thinking pattern were "sit down and plant your feet" and "knock it off." When she was told to plant her feet, she did just that. After looking for her I found her out side looking lost and confused with her feet buried in the dirt. After being told to "knock it off" (some behavior) she went running to her room, grabbed all her blocks. Came running giggling with her shirt stuffed. Very carefully, Jade lined up all her wooden blocks on the back of the couch, then proceeded to hit them as hard as she could across the room.
Once I told her (without realizing what I was doing), to "knock it off", so she did just that. Lined her blocks up once again, and knocked her blocks off the back of couch. She did this over and over until I took her blocks, resulting in another fit. She was confused and lost. Why? She was doing exactly as I had just told her to do several times in a row.
Suddenly realizing what was going on I tried to get her playing with her blocks in a different fashion. This was not going to happen. She dead set on following my instructions. At this point, I simply bit my lips and let her "knock it off" until she was finished.
With this realization, I was finally able to reach out to her and peek inside her boxed up world. We were finally able to start experimenting as a family with new ways to try bond, stop her temper fits, increase communication skills, and learn new things about her.
During this time, I learned to accept the fact that a child with autism is just that. A child with autism and perfect as they are. I also became to see the world of autism like that of a remote controlled toy.
Some remote controlled toys are only programmed to move forwards and back, others can also move side to side. While others have no limitations in their movements. Why children with autism are not wired to think and behave like other child is something we may never know. However, I know my daughter has overcome so many obstacles in her life to become who she is.
I also know that because of who she is, and what she has become, she can and will become whatever she puts her mind to.
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