tag:blogger.com,1999:blog-24972966664788272672024-02-20T02:57:42.994-05:00I Could Not Make This Stuff UpThe wild adventures of a family on the rollercoaster of life with a rare genetic disorder called Ehlers-Danlos.ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-2497296666478827267.post-49835186589469385622013-01-27T12:12:00.000-05:002013-01-27T12:30:07.360-05:00My Peace, Where Did I Loose It?It has been a rough few months. Chuck has been out of town since the end of November, only coming home on the weekends. During the Christmas chaos, it was hard, but since we knew it would only be a temporary job assignment, we all resolved to push through and endure. But as each week passed the resolve in each of us began to crack. The pressure of trying to manage the house, the kid's appointments, any my own pain and health issues caused me to feel more and more overwhelmed.<br />
<br />
Last week I decided that I had reached my limit. With several ER visits and both girls in wheelchairs again, I announced that "I could not do it anymore." I told Chuck on the phone (which is always a great thing to tell someone that is far away) that I could not handle things without him.<br />
<br />
Instead of resolving to have peace, I decided that I would not have peace unless Chuck was home. Does this remind you of a two-year old's attitude? Instead of things becoming more stable at home, things seemed to get worse. Wizzy was nearly hospitalized for dehydration. CJ was sick so I was unable to really ask anyone to help. I did not want the stomach bug that was plaguing our house to enter into other households.<br />
<br />
Again I called on my resolve to endure. "I can do all things through Christ whom strengthens me." But I was missing the root of the problem. I was upset that Chuck was not home and it did not matter to me what else happened, I would not be happy until he was home. The root of my distress was anger because I was alone. I traded in my peace because I was not happy with my circumstances. But since circumstances have little to do with real peace, it would not have mattered if he were home. I had put up conditions that had to be met in order for me to be happy.<br />
<br />
If I have learned anything along this journey it is that we cannot demand that certain conditions be met in order for us to be happy. God wants us to be happy and peaceful and joyful despite our circumstances.<br />
<br />
<blockquote class="tr_bq">
God's power protects you through your faith until salvation is shown to you at the end of time. This makes your very happy, even though now for a short time different kinds of troubles make you sad. These troubles come to prove that your faith is pure. <br />
(1 Peter 1: 5-9)<br />
</blockquote>
So I was putting the responsibility of my happiness on the shoulders of my loving husband. Setting the requirments of what I needed in order "to handle it". What if he were home, but having to work 12 hours a day, would I be able "to handle" that? What if he were only out of town a couple of days a week?<br />
<br />
I was acting like the 2 year old that can only be happy if you give her a cookie right now. Most of you know that even if you give the 2 year old the cookie right now, she will only throw a fit in a couple of minutes to get another cookie. She learns that throwing a fit equals a cookie. Her happiness is never satisfied because she cannot keep eating cookies or she will get sick. You as the adult withhold the cookie because you do no want to reward the child when she demands it because if you do, she will throw more and more fits to get more and more cookies which ultimately leads to the child getting sick and spoiled.<br />
<br />
If I demand that certain things must be in place in order for me to be happy and peaceful, I know that The Father will do what all loving parents do in this siutation and that is withhold the cookie. He wants us to be happy and peacful and joyful even when we don't get the cookie. He wants us to rely on Him when we cannot "handle it." <br />
<br />
I cannot tell God that I will only be happy when Chuck is home because truth be told, I am not always happy when he is! I cannot tell God that I will only be happy when my kids are healed and no longer in pain, because I know that with God's help I can be joyful in the midst of heartache. I cannot put demands and requirements for my peace because I have to work for my peace. It is a gift of the Holy Spirit and from Jesus, but in order for me to have it I must "Look for peace and work for it." (Isaiah 8:12-13)<br />
<br />
In order for me to have peace, I must send out peace. I cannot send out anger and expect to get peace. I must send out peace and love and happiness if I want it back. I cannot expect reap what I do not sow. The peace must be in my own heart, not in the situation in which I find myself each day.<br />
<br />
What are the circumstances that must be met in order for me to be happy? <br />
<br />
<ol>
<li>All of my children must be well and go to school.</li>
<li>All of my children must be out of pain.</li>
<li>My husband must be in town.</li>
<li>I must be well and out of pain.</li>
<li>The sun must shine.</li>
<li>The house must be clean and smell like cookies.</li>
<li>I must be able to eat all the cookies I want and not gain weight.</li>
</ol>
God has given us His Peace. We do not understand that Peace if we are not focused on it. We do not feel that peace if we can only look at our earthly surroundings and troubles. Someon once said to me "Isn't it a shame when we only look at what is happening here on earth and forget the promises God has for us in Heaven?"<br />
<br />
I wonder if God ever looks at me and just shakes His head and says, "I guess she did not learn this lesson yet. Let's try it again." I acted like a spoiled brat these past couple of weeks. Granted, it is not easy dealing with my kid's physical issues along with the emotional repercusions of the pain EDS without Chuck here. But I am not alone. Everyone has issues that are difficult and pushes them to the edge of what they think handle, but somehow we wake up the next day realizing that we did make it through, thank God!<br />
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ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-28225632685084507552012-11-18T11:38:00.001-05:002012-11-18T11:38:52.793-05:00CJ~ A Mighty SycamoreThis has been a rough time for CJ, but if you would ask him, he would sound much more hopeful.<br />
<br />
In the past 8 months, he has been diagnosed with OCD, Tourrette's, Ehlers-Danlos Syndrome, Failure to Thrive and now gastroperisis. This is on top of the asthma and migraines that he has been struggling with for a long time.<br />
<br />
This would probably do in most kids, but CJ is not most kids. Under his quite exterior, is a strength and faith of a giant. He has an anointing on him that I believe will make him a stronger person even still.<br />
<br />
I explained strength to him using the following metaphor, and I believe this best explains him:<br />
<blockquote class="tr_bq">
Do you see the big tree there? Is it strong? Did is survive the big winds? Why is it strong? Why did it survive? </blockquote>
<blockquote class="tr_bq">
It survived and is strong now, because during storms in its life it learned to bend and sway with the wind. When it would bend, little micro fractures occurred in the trunk. After the storm, these fractures would heal, making the trunk even stronger because the healed part was stronger than the actual trunk. Each time the little tree would face another storm the same thing would happen until the truck was so strong that it did not need to bend and sway with the wind. It could stand up to the wind and survive even the most powerful of storms.<br />
<br />
This is like what happens to people. We all go through storms in life, no matter who you are. You can either learn to endure the winds then heal between them or decide to fall over thinking the wind unfair. If you embrace the wind as an opportunity to get strong then you look at troubles in life in a different way. Instead of despair, you can hope in your troubles, because this is the time you will get stronger.<br />
</blockquote>
I see my son becoming a young man. Even while going through all of this, he stood up to a bully at school and lived to tell about it. He was released from treatment for his OCD, because of the progress he has made in managing his symptoms. He even liked the Intensive Physical Therapy EDS program that he just finished, because he said it gave him ways to get out of pain. He has also embraced the dietary rules to help him with his gatroperisis and failure to gain weight.<br />
<br />
For so long we were not able or willing to understand the struggles that CJ had to endure. Now that we can and are willing, CJ is actually thriving. It is very painful as a parent to realize that your child has been suffering for a long time and nothing was done. However, looking back over the last few years, I don't know how I would have had a chance to dig into his issues along with everything else that went on in this house. Maybe it is just and excuse so I can live with myself. Maybe it is the truth, I don't know. But what I have realized is that nothing can be done about the past, but lots can be done about the future. So I am going to focus on the future. And the future of CJ is looking like a mighty sycamore!<br />
<br />
ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-32199365519319052652012-08-22T06:41:00.001-04:002012-08-22T06:41:49.286-04:00Smiling ChampThank you for your comments and your beautiful poem. I am so sorry for all that you have had to endure in your short life. I admire your courage to reach out to others that are struggling and give them hope as well. You must be an amazing person! May God bless you each and every day and remember when you reach for Him, He will always be there.<br />
<br />
I cannot explain why anyone would have to go through all of the hardships you have had to go through in life. But what I can say is that you have been given a heart that is able to use those experiences and bless all around you. <br />
<br />
There is a reason that you are still here and a I pray that God holds you in the middle of His hand for the rest of your days. Know that there is always a purpose to all that God does. It is not His will for anyone to be in pain, but He will make all things turn out of good for those that trust in Him. You are a bright shining example of that promise.<br />
<br />
God bless!<br />
<br />
For all of you not familiar with her story, please ckick on the link enclosed in this entry.<br />
<br />
<a href="http://www.blogger.com/profile/16312018180245012719">http://www.blogger.com/profile/16312018180245012719</a><br />
ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-35855716559229976212012-08-19T16:47:00.002-04:002012-08-19T16:47:40.943-04:00TV Interview on Channel 9 2012<a href="http://www.youtube.com/watch?v=Cu6b0zJa5D8">Channel 9 Interview</a>ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-5994720308284765562012-08-06T21:11:00.002-04:002012-08-06T21:11:54.009-04:00So Proud!!<a href="http://www.youtube.com/watch?v=jMJKFUGUqpQ">http://www.youtube.com/watch?v=jMJKFUGUqpQ</a>ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-38528191017150858192012-08-06T21:05:00.001-04:002012-08-06T21:05:10.391-04:00After You are Diagnosed with Ehlers-Danlos Syndrome<br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;">
<span style="font-size: 18pt;">Hyper Mobility Type As an Adult<o:p></o:p></span></div>
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<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
This is a set of advice that was
compiled by a group of patients.<span style="mso-spacerun: yes;"> </span>It is
meant to help with issues other than the formal medical advice you will receive
from various doctors and therapists.<span style="mso-spacerun: yes;"> </span>Do
not take this advice for something other than another resource you might
consider as you begin to deal with EDS.</div>
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<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
The term Zebra comes from the
saying that is taught to medical students about diagnosing patients: “When you
hear the sound of hooves, think of horses, not zebras.”<span style="mso-spacerun: yes;"> </span>Also, no two zebras have the same
stripes.<span style="mso-spacerun: yes;"> </span>Each person with EDS can
present with different symptoms and pain.</div>
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<span style="font-size: 18pt;">Medical
Appointments<o:p></o:p></span></div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
At the beginning you might feel
that the medical appointments might never end.<span style="mso-spacerun: yes;">
</span>If you are an adult and recently diagnosed, you might feel many
different emotions such as relief that you are not crazy!<span style="mso-spacerun: yes;"> </span>Something is wrong despite what other doctors
might have said to you for years.<span style="mso-spacerun: yes;"> </span>It is
important to let all of your doctors know about the diagnosis, be prepared that
some of them might not know what EDS is and give you incorrect
information.<span style="mso-spacerun: yes;"> </span>Some doctors do not like to
be “educated” by their patients but if they are open, leading them to
cincinnatichildrens.org where they can look up EDS written by Dr. Tinkle might
help.<span style="mso-spacerun: yes;"> </span>You also might consider finding
doctors that are willing to admit that they don’t know “everything” but are
willing to learn.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
One of the realizations that will
come after some time is that there is no “magic” solution.<span style="mso-spacerun: yes;"> </span>No doctor will be able to make everything
better.<span style="mso-spacerun: yes;"> </span>Since many of us “Zebras” may
already have a strained relationship with the medical community, it might take
some time to come to grips with the fact that yes you finally have an answer to
what is wrong with you, but unfortunately, there is no cure.<span style="mso-spacerun: yes;"> </span>Management of symptoms is the key.</div>
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<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<span style="font-size: 18pt;">Emotional
Support<o:p></o:p></span></div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
One of the difficult aspects of
this syndrome and a late diagnosis is that friends and relatives around you
might not have realized the amount of pain and discomfort you have endured
prior to your diagnosis, therefore, they might find it difficult to understand
why you are running to the doctor all of a sudden.<span style="mso-spacerun: yes;"> </span>EDS can be difficult to explain and
understand so give them and yourself time to digest this information.<span style="mso-spacerun: yes;"> </span>While it is tempting to spend hours looking
up EDS on the computer and do lots of research, try to bear one thing in mind-
you are the same person you were prior to diagnosis.<span style="mso-spacerun: yes;"> </span>You are not broken.<span style="mso-spacerun: yes;"> </span>This is just the way your genes express
themselves.</div>
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<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
It also might be tempting to
ignore or wish this diagnosis away.<span style="mso-spacerun: yes;">
</span>Denial is more than a river in <st1:country -region="-region" w:st="on"><st1:place w:st="on">Egypt</st1:place></st1:country>.<span style="mso-spacerun: yes;"> </span>Don’t be surprised if you or your loved ones
want to stay in this state for a while.<span style="mso-spacerun: yes;"> </span>“But
you have been fine all of your life!<span style="mso-spacerun: yes;"> </span>Why
are you sick now?”<span style="mso-spacerun: yes;"> </span>Or “But you don’t
look sick!”<span style="mso-spacerun: yes;"> </span>Many people have said that
getting a life long diagnosis causes people to go through a grieving
process.<span style="mso-spacerun: yes;"> </span>I know that to be true for many
people, but not all.<span style="mso-spacerun: yes;"> </span></div>
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<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
It is import ant to realize that
you are not alone.<span style="mso-spacerun: yes;"> </span>There are groups and
websites that you can join to help you along the way.<span style="mso-spacerun: yes;"> </span>Facebook is one resource that many Zebras
have turned to for daily contact and friendship of others that understand EDS.<span style="mso-spacerun: yes;"> </span>You can look up some of them, but here is a
very short list:</div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
*Zebras for Life</div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
*Ehlers Danlos Awareness</div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
*EDS Fight for a Cure</div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
EDNF (Ehlers-Danlos National
Foundation) is a group you may join that has many resources and guides to help
as well.<span style="mso-spacerun: yes;"> </span>The group is called “Team
Inspire”</div>
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<br /></div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
There are local support groups
forming in several areas of the <st1:country -region="-region" w:st="on">US</st1:country>
and <st1:country -region="-region" w:st="on"><st1:place w:st="on">UK</st1:place></st1:country>.<span style="mso-spacerun: yes;"> </span>Check Facebook or Team Inspire for posting of
meetings.</div>
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<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<span style="font-size: 18pt;">Physical
Support<o:p></o:p></span></div>
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<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
One of the most difficult things
for some of us to grasp is that we might need some help from time to time.<span style="mso-spacerun: yes;"> </span>You might be very used to “getting by” and
dealing with pain by ignoring it.<span style="mso-spacerun: yes;"> </span>There
is a legitimate reason for your pain and you might consider paying attention to
your body.<span style="mso-spacerun: yes;"> </span>There are many ways to one
thing, for instance, laundry.<span style="mso-spacerun: yes;"> </span>You might
consider using a reaching tool to get the clothes out of the washer or
dryer.<span style="mso-spacerun: yes;"> </span>A different idea might be using a
basket on wheels to carry the clothes to the machines.<span style="mso-spacerun: yes;"> </span>Better yet a way to do laundry might be getting
a machine that washes and dries the clothes all in one thus eliminating the
need to deal with wet clothes.<span style="mso-spacerun: yes;">
</span>Occupational therapists can be a great resource to help think of ways to
help protect your joints.</div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
There is a fine line between
bracing and keeping strong.<span style="mso-spacerun: yes;"> </span>You might
not have realized that all of these years you have been dislocating or
subluxing joints.<span style="mso-spacerun: yes;"> </span>For some people with
EDS, it actually might feel good to do so.<span style="mso-spacerun: yes;">
</span>Now it is time to protect those joints from damage that will manifest
itself later.<span style="mso-spacerun: yes;"> </span>There are many types of
braces that can keep the joints in place and a physical therapist or OT can
assist with specific recommendations.<span style="mso-spacerun: yes;">
</span>Hiring an OT to come to your house can also be helpful to find ways to
change the physical environment to protect your joints or conserve your energy.</div>
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<br /></div>
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<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<span style="font-size: 16pt;">Resources<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<u><span style="color: black; font-family: Arial; mso-bidi-font-weight: bold;">Joint Hypermobility Handbook- A Guide
for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type
and the Hypermobility Syndrome</span></u><b><span style="color: black; font-family: Arial;"> <span style="mso-spacerun: yes;"> </span></span></b><span style="color: black; font-family: Arial; mso-bidi-font-weight: bold;">by Dr Brad
Tinkle<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
<u><span style="color: black; font-family: Arial; mso-bidi-font-weight: bold;">Issues and Management of Joint
Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and
the Hypermobility Syndrome</span></u><u><span style="color: black; font-family: Arial; font-size: 14.5pt; mso-bidi-font-weight: bold;"> </span></u><span style="color: black; font-family: Arial; font-size: 14.5pt; mso-bidi-font-weight: bold;"><span style="mso-spacerun: yes;"> </span></span><span style="color: black; font-family: Arial; mso-bidi-font-weight: bold;">by Dr Brad Tinkle<o:p></o:p></span></div>
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<br /></div>
<br />
<h1 style="margin: 0.67em 0in;">
<u><span style="font-family: Arial; font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;">Hypermobility, Fibromyalgia and Chronic Pain<span style="mso-spacerun: yes;"> </span></span></u><span style="font-family: Arial; font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;"><a href="http://www.amazon.com/s/ref=ntt_athr_dp_sr_1?_encoding=UTF8&field-author=Alan%20J%20Hakim%20MB%20%20FRCP&ie=UTF8&search-alias=books&sort=relevancerank"><span style="color: windowtext; mso-ascii-font-family: Arial; mso-hansi-font-family: Arial; text-decoration: none; text-underline: none;"><span style="font-family: Verdana;">Alan J Hakim MB FRCP</span></span></a>
(Editor), <a href="http://www.amazon.com/s/ref=ntt_athr_dp_sr_2?_encoding=UTF8&field-author=Rosemary%20J.%20Keer%20MSc%20%20MCSP%20%20MACP&ie=UTF8&search-alias=books&sort=relevancerank"><span style="color: windowtext; mso-ascii-font-family: Arial; mso-hansi-font-family: Arial; text-decoration: none; text-underline: none;"><span style="font-family: Verdana;">Rosemary J. Keer MSc MCSP MACP</span></span></a>
(Editor), <a href="http://www.amazon.com/s/ref=ntt_athr_dp_sr_3?_encoding=UTF8&field-author=Rodney%20Grahame%20CBE%20%20MD%20%20FRCP%20%20FACP&ie=UTF8&search-alias=books&sort=relevancerank"><span style="color: windowtext; mso-ascii-font-family: Arial; mso-hansi-font-family: Arial; text-decoration: none; text-underline: none;"><span style="font-family: Verdana;">Rodney Grahame CBE MD FRCP FACP</span></span></a>
(Editor) <o:p></o:p></span></h1>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: justify;">
Ehlers Danlos National Foundation</div>
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EDS Cares Network</div>
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<span lang="EN" style="mso-ansi-language: EN;">Center for Ehlers Danlos Syndrome <st1:city w:st="on"><st1:place w:st="on">Alliance</st1:place></st1:city><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Cincinnati Children’s Hospital~ Special Needs Directory</span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Feel free to contact me if you would like to learn about local support
group meetings:<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;"><a href="mailto:caschulze@cinci.rr.com"><span style="font-family: Verdana;"><span style="color: #003399;">caschulze@cinci.rr.com</span></span></a>
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<br /></div>ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-38355236089183097772012-06-26T06:31:00.001-04:002012-06-26T06:31:15.323-04:00I Give Up<br />
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But if you see that the job is too big for you, that it's something only God can do, and you trust him to do it-you could never do it for yourself no matter how hard and long you worked-well, that trusting-him-to-do-it is what gets you set right with God, by God. Sheer gift. (Message Bible Romans 4:5)</blockquote>
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<br />
I realized this truth as I lay in a crumpled mess on the floor. It was after a day of doctor appointments that seemed to take a microscope and examine every decision I have made as a mother and called it wrong. It was after praying with my little one and asking, yet again for relief from pain.<br />
<br />
"I can't do it! I can't handle their pain because I am useless to do anything about it!" I felt I had done some many things wrong. Here now all of my children were on some sort of medication to help them with their anxiety. Are we not a Christian Family? Isn't faith in Christ supposed to take care of at least the worry? My anger bubbled over into a tantrum for all to see.<br />
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The next day I saw Joyce Meyer imitating me. She was on stage acting just like I had acted the night before, "Oh God I can't do it anymore. I just quit! It is too much!" Her answer from the Holy Spirit was "Finally I can get to work!"<br />
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I have been so busy doing all the things that I should have left to God to handle. I am not in he business of healing, but He is. I cannot quite anxiety, but He can. I was not a failure, I just was not allowing God to do His job. He was the perfect gentleman and let me try. When I gave up, He got to work.<br />
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I know I have written on the is subject before regarding not worshiping the medical community as idols. Not putting all of our trust in another man made from dust instead of the one that made us all. Apparently I am a slow learner and I forget.<br />
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It is very difficult to parent children with chronic pain. It is a parents nightmare to feel helpless as your child suffers. But placing that child in the arms of God, is the best we can do. Trust in Him that He will work our all things for good for those who love him. ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-62966551080991602692012-06-21T16:03:00.001-04:002012-06-21T16:03:01.953-04:00What is Ehlers-Danlos Syndrome<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/jMJKFUGUqpQ?feature=player_embedded' frameborder='0'></iframe></div>ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-6133584086167776982012-06-19T15:03:00.002-04:002012-06-19T15:03:36.190-04:00Weather the Storm<span style="font-family: Verdana, sans-serif;"><strong>I am overwhelmed again by the Love that God has for me and my family. When we love others, God abides. It is so hard right now to feel anything but pure joy that there is a God and He loves me, but just 24 hours ago it was difficult to remember that fact. I was reminded in a passage written in Forward Day By Day meditations for Monday June 18th:</strong></span><br />
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<span style="font-family: Verdana, sans-serif;"><strong>The temptation pain brings is to withdraw in self-pity, to a cynicism which becomes impenetrable and sovereign. Flannery O’Conner writes that our age “at its worst…has domesticated despair and learned to live with it happily.”</strong></span></blockquote>
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<span style="font-family: Verdana, sans-serif;"><strong>But no. Here’s the turn: “I will remember the works of the Lord, and call to mind your wonders from of old.” Can you begin to remember how good God has been to you? Remember. Even in the swirling terror of a thunderstorm God is working the night shift. Whether we can see him in the dark or not, he can see us. He is leading us through the sea, making a path through the great waters—silently transforming us in the pain, even though his footsteps are not seen. Praise him!</strong></span></blockquote>
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<span style="color: black; font-family: Verdana, sans-serif;"><strong>I was in the middle of pain that made me panic. No relief in sight; thinking that if I went to hell this is what it would feel like and never end. Through that storm God helped me remember the blessings that are all around me. Blessings that drip from the ceiling! So many I cannot begin to count them. Just to give you and example of some of today's blessings: Our church family is bringing dinner; the girl's helper from the county is able to stay longer since Church is at work; a call out of the blue from my father helped resolve a problem with getting to doctor appts for the kids tomorrow, my son stopped in my room to tell me he loves me; Friday a cleaning crew is coming to our house which is provided by friends that moved to Switzerland! It goes on and on.</strong></span></div>
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<span style="color: black; font-family: Verdana, sans-serif;"><strong>If He is there in the blessings He is even more present in the storm. God give me the faith and endurance to weather this storm.</strong></span></div>
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<span style="color: black; font-family: Verdana, sans-serif;"><strong>May peace and blessings be with all that have prayed for us and helped support us. Truly there is nothing in our lives that cannot be directly traced to God grace.</strong></span></div>ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-78516070288214845262012-06-17T18:23:00.000-04:002012-06-17T18:23:08.283-04:00Where is the Outrage?I just helped Erica write a letter to Mrs. Obama. She wants the most powerful mom to help her out of pain. She explained that her life was in danger and she is in pain every day. What I think does not make sense to her is the fact that the world sits back and does nothing to get rid of Ehlers-Danlos. Where is the outrage?!! She is a little girl and she is not alone.<br />
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She said that she was inspired by the story of Esther. She was in a play last week about how one woman saved a nation. She is one kid who wants to save her family and others like her. Please pray that Mrs. Obama responds.ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-50432049545870678742012-06-09T15:37:00.001-04:002012-06-09T15:37:43.513-04:00Meditations on Psalm 55Psalm 55 speaks the words of my heart: <br />
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"I am frightened inside;<br />
the terror of death has attacked me.<br />
I am scared and shaking,<br />
and terror grips me.<br />
I said, 'I wish I had wings like a dove.<br />
Then I would fly away and rest.<br />
I would wander far away <br />
and stay in the desert.<br />
I would hurry to my place of escape,<br />
far away from the wind and the storm.<br />
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But later in the same psalm, God promises this:<br />
<br />
"Give your worries to the Lord,<br />
and He will take care of you."<br />
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I give you my worries Lord. They are too big and difficult for me. Take my worries about my pain after surgery without pain medication. Take my worries about my children and husband during my recuperation. You need to help me in a big way, realize that Erica is fine and pursuing other medical opinions is futile. The worry about her having a stroke needs to set with you, not me. Take that heartbreak I see in my children's eyes, though they don't speak about it. Take my worry about how my body with react on the operating table. Help me be the kind of mom that CJ needs as he struggles with his anxieties. Give me the words to say to him that shows love, yet boundaries. God, you can also take my frustration over my loss of control. I need a dose of understanding and clarity in dealing with Elizabeth's recent maturity. Help me keep her safe. You are in control, not me. Let me find Joy in the midst of chaos. Take away my confused thoughts. Give me discernment and faith to do only those things You tell me to do. Let me be a mirror that reflects the light of your love in all I do. Lord, you know that I cannot do these things on my own. Help me cast off my desires and wants and pick up your mantel.<br />
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God thank you so much for the blessings in my life. Please help me to not look at my blessings and curses. I thank you for a husband that is kind, understanding, hard working, even tempered, smart, caring, and the best person I know. Blessed am I to have 3 amazing children. Help me to be the best mom possible, but not take on things that are not in Your plan. I thank you for the prayers that are said for our family. Not enough thanks could be said for the many people that worked to modify our house. It is a constant reminder of Your supply. I thank you for the Driscoll Family. Even though they live in Switzerland, they still send money to a cleaning company so our house is cleaned once every two weeks! You have shown so much of Your love to us that it is a sin to think that You would not answer our prayers now. <br />
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I am not God (thank God). I don't understand His ways, but He does promise that He will work all things out for good for those that love Him. We receive your healing, protection, clarity, peace and joy only through Your grace. Thank you Abba!ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-56358408364662326532012-03-14T19:46:00.000-04:002012-03-14T19:46:40.861-04:00MisconceptionsI have a bone to pick with Hollywood. Just because a kid is sick, it does not make them an angel. They do not sit around with a smile on their face. In my experience, they do complain, a lot and I am not saying that is bad. I do it too and everyone would do it. Pain does not play fair. Health is fleeting and is given to those that do not appreciate it.<br />
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<div class="MsoNormal" style="margin: 0in 0in 0pt;">Out of the mouths of babes…</div><br />
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<div class="MsoNormal" style="margin: 0in 0in 0pt;">I want to die!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Why can’t I just die??</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">There is not pain in Heaven, right?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Why can’t I just die?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Please kill me!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">You are hurting me!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">You don’t love me because if you did, you would not put me through this!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">What do you mean, “The doctors don’t know?”</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I hate all of you!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Leave me alone!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Don’t touch me!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Take this IV out!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I don’t care if I am scaring the other children!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I don’t like this!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I hurt EVERYWHERE!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I want to go home!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Why can’t I go home!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Don’t yell at me, I am hurting!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Don’t you care that I am hurting?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">You never loved me!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">SOMEONE KILL ME!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I want a doctor so I can punch them!!</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Don’t cry Mommy</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I’m sorry</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I am just hurting</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I want to go home</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Why did the doctors not find anything?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I just want to get better</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I just want to be a normal kid</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I just want to stop hurting</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Why do I have to hurt?</div><br />
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</div>ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-46394836392237524692012-03-14T18:23:00.002-04:002012-03-14T18:23:41.903-04:00My attempt at poetry<div class="MsoNormal" style="margin: 0in 0in 0pt;">Hey…Hello in there…</div><br />
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<div class="MsoNormal" style="margin: 0in 0in 0pt;">I have no answers to give</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I want to solve the impossible puzzle</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I am walking through a maze that leads to nowhere</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Now what?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Where do I go?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I scream this in my head</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Where do I go?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">What do I need to learn?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">What do I need to do?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Who do I need to ask?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I am asking you but you are not telling</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">I give it to you and you and not responding</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">You send me blessing after blessing</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">We are not cursed</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">We are blessed</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">But……</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Oh, was this like the Israelites?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Am I complaining for meat when I have eaten of Heaven’s bread?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Should today be enough?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">No tomorrow</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Just today</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">How do you move on?<br />
Just today</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">No planning</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">No dreams?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Different dreams, but aren’t they nightmares?</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">No, keep your heart light and looking for the light</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Look to the light in all situations and you will be blessed</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">No answers but love</div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Love </div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Love </div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">Love</div><br />
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</div>ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com2tag:blogger.com,1999:blog-2497296666478827267.post-26776216912348996242012-01-14T14:29:00.000-05:002012-01-14T14:29:42.208-05:00The Storm Rages On...Just when I thought the storm was over, we were hit by lighting!!<br />
<br />
It all started a few weeks ago when Erica started to complain that when she looked up, her "eyes would go black". She also said that she was very dizzy after these episodes. I took her to her regular doctor and he thought it was a virus. When it continued I sent out an email to her doctors explaining her symptoms. A few days later we had a regularly scheduled appointment with the geneticist. He said that he thought that her skull was starting to slip from the base of her spine. This is causing the bones to either impinge the arteries going into the brain or hitting against her brain stem. <br />
<br />
I cannot believe we are in this position AGAIN!! I thought when the doctors fused C1-2 in her neck, that she was safe. Apparently this is extremely rare. But to be honest, no one knows what to expect because she was one of the first to be fused at C1-2 and one of the youngest.<br />
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The best scenario would be that it was just hitting against the arteries. Best scenario, she could have a stroke. Really?!! Come on, REALLY??!! A stroke? the worst case scenario obviously is death because she is hitting her brain stem and the brain stem is what controls things like breathing and heart beat. What the doctors are saying to us is there is a possibility that if she moves her head in the wrong direction, she could die immediately. Wow!!<br />
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How do you go on from there? How to you just sit and joke with her? She is wearing her neck brace and hating every minute of it. Do I tell her how dangerous it is to go without it and what could happen as she is trying to negotiate with me? Where is this in the book "What to Expect When you have a Child"?<br />
<br />
Right now we have several doctors doing what they can to think of the best way to keep her safe. One doctor is calling other doctors from around the country to find someone that has experience in dealing with cases like this. She will be seen locally here in Cincinnati, but also up at the Cleveland Clinic. But this has been going on for weeks and only her regular doctor, the geneticist and a doctor outside of the Children's Hospital. If she simply had a broken arm, she would have been seen and on the way to healing. When it comes to her brain and we have to wait around!! God is calling me to wait upon Him, so I cannot argue with that.<br />
<br />
Erica went for a CT scan the other day. It took over 45 min to convince her to get onto the table for the test. CT scans are very quick, but she had it in her mind that she did not want to do it. Through the screaming and crying we all discovered that she is scared to death to find out the results. To be honest, I feel the same way. I cannot imagine going through something like this as an adult, let alone an 8 year old going through this for a second time. She does not trust anyone at this point. She does not understand why the adults around her don't know what to do. When her eyes go black, she gets very frighten. When Erica self-limits her activities and decided to use a cane on her own because she is afraid of falling you know this is a miracle in and of itself!<br />
<br />
<br />
All things aside, I know that I know that I know that she will end up okay in the end. People say I have a lot of faith. I am not sure what that means other than I have experience to show that God will never leave us. He has kept every promise and fulfilled every need just as we need it and sometimes even more than we could have ever expected. I would be a fool to stop believing Him now.<br />
<br />
The hard part is getting to that "okay" status. The school called and asked that we agree to put her on home instruction. I understand their point and to be honest, if I were in their shoes, I would do the same thing.<br />
<br />
We are so blessed to have so many of you that have prayed and supported us over the years. I believe that God has listened to your prayers and His blessings have rained down upon us. All I have to do is to sit in my kitchen!! Please continue to pray, please for CJ and Elizabeth and especially Chuck. This is very difficult for all of us.ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-16555132760738053742011-10-02T20:04:00.000-04:002011-10-02T20:04:51.170-04:00"Mommy, I am WAY under dressed for this funeral!"Do you every get to a place and think to yourself, "How in the world did I get here?" I found myself asking that question as I was standing at my grandmother's funeral service rocking my mom jeans and trying to answer Erica's question as she was taking off the ER bracelet off of her wrist.<br />
<br />
We had another one of those days a couple of weeks ago. My son had hurt his hand on the first day of fall baseball practice. Ball against finger- ball won. He broke it right on the growth plate, of course, and had to go in for a cast. This was scheduled for the morning of my grandmother's funeral. She had died the weekend before, peacefully. It was very hard on the kids as she lived close and they saw her quite a bit. This was their first funeral that they lost someone so close.<br />
<br />
Anyway, I was driving CJ back to school and heading home when I got a call from Chuck that Erica's school called and said that her arm was hurting, had electric shocks down to her fingers and she could not put her shoulder back in on her own. I told him that I was close to the school and I would drop by to "pop her back in place." (Why do I think it will be just and easy fix?) I got to the school and realized that I could slide her shoulder back in place easily, however, it would not stay in place. So I called the orthopedic surgeon and said, "I can get her shoulder to slide back in place, but it will not stay there." (Remember these words, you will see them again. It is called foreshadowing, I think, in literary terms). I was told to bring her down to the ER to the main campus right away.<br />
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Okay, so we are off to the worst place we can think of in a 300 mile radius, the emergency room. Not that this particular ER is bad, it is just all ERs are stressful for everyone, but especially hard for kids with a rare orthopedic syndrome. We call it the "Horse and Pony Show" because the residents, med students and such want to come in and see the cool party tricks she can do because of the EDS.<br />
<br />
Erica endures the poking, prodding, questioning and x-ray pretty well. The chief of the ER comes in who happens to be a friend of our regular pediatrician. He takes one look at her and we were shown the forms for permission for sedation so they can put her shoulder back in place. The next minute this very young ortho resident comes in and says that she needs another x-ray.<br />
<br />
The x-ray he orders is one that required her to put her shoulder in a position that she thought would hurt her. The x-ray techs did not help by pushing her and yelling in her ear. I stopped the whole thing saying that her pain was not addressed and until she got something for her pain, we would not proceed. The medical student was trying to hurry her along so she would not miss her great-grandmother's funeral so he runs out of the room to tell the head of the ER about the resident. I guess they have a big fight over what to do, but the ortho resident is now calling the shots. I just love it when a resident pokes his nose in where a 40 yr vet of the ER has it under control!<br />
<br />
The doctors give Erica her medicine and the ortho resident comes back in to explain that the x-ray is not that big of a deal. He promised that he would go in and talk to the x-ray techs on how to do it. Well, he lied, of course, and she and the techs screamed at each other until the pictures were taken. <br />
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After 6 HOURS this is what the orthopedic resident said to me, "I can get her shoulder to slide back in place, but it will not stay there." REALLY? "What are you going to do about it?" "Nothing, I can't do anything in the ER." You mean to tell me that after 6 hours, potentially missing my grandmother's funeral, painful x-rays, screaming and all the other fun we have had and this is all you can offer her? I told you this hours ago!!! I thought the top of my head was going to come off!!!<br />
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"Can't you even tape the shoulder in place so she can get out of pain at least temporarily?" He said he didn't know how to do that. Don't they have guys without med school educations that do that next to the football field every Sunday? "Yeah, but I don't know how."<br />
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Fabulous!!! Out the door with a girl that wants to rip off her arm it hurts so badly to try to make it to at least a little of the funeral. I was supposed to read one of the scripture verses during the service for her and I am in jeans, no make-up and I was pretty sure I remembered to brush my hair this morning...not so sure about my teeth. I can't remember the last time I took a shower because of course I would have time before the funeral. <br />
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We get there at least 15 minutes into the service. "Mommy, I am WAY under dressed for this funeral!" says Erica as we take our seats. "I know Sweetie, so am I, but Nana doesn't care anymore."ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-61003815923196295992011-07-31T22:28:00.000-04:002011-07-31T22:28:52.639-04:00"Hope is a Dangerous Thing"Elizabeth made it through the surgery and is recovering well. She is less than 2 weeks out and already running! Her pain level is much lower than before the surgery. We saw pictures of what her hip looked like inside and it was a mess. The area that was filled with nerve endings was inflamed and frayed. The surgeon cauterized and shaved the tendon thus destroying the painful area. <br />
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All of this occurred up at the Cleveland Clinic. This place is huge! There are 3 hotels on the at least 29 block campus. In one area it looked like a mall with shops and restaurants. The day before surgery I think we walked the entire place trying to get all the tests completed so she could be cleared for surgery.<br />
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Elizabeth did stay over night after the surgery and I am very happy she did so. She spent most of the day after the surgery sick to her stomach. The surgeon said that he could not remember the last time he had an arthroscopic patient stay over the night, but it would have been a nightmare with 3 kids in the car and a 6 hour drive and having to stop while she got sick on the way.<br />
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The best thing about the surgery is that it has given Elizabeth hope. She now understands that pain is not a permanent part of her life. Sure, there will probably be times that she has pain, but it is not a constant. "Hope is a very dangerous thing!" (I can't remember the movie, but I like the quote)ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-52745851122053773892011-07-14T16:59:00.000-04:002011-07-14T16:59:32.168-04:00Elizabeth is HumanWe are now a week away from Elizabeth's hip surgery. She is very afraid and is having difficulty expressing it. I think she thinks that she needs to be strong all of the time. We compliment her on how strong she is and even said that she was, "freakishly sane" for a 13 year old. She apparently is so upset by her surgery that she developed a "conversion disorder". This disorder is apparently common amongst people that have chronic illness. When the heart cannot express what it is feeling, those feelings are converted into a physical symptom, such as numbness, inability to talk or hear that otherwise has no physical reason for the symptom. The people with conversion disorders are unaware that the symptoms are not real.<br />
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Elizabeth is so strong and does not show her emotions freely to anyone. I think she is afraid to let herself go because she worries about everyone. She told us that she was afraid to express her sadness or fear because it would "make everyone feel badly." <br />
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I feel so badly for her right now that we have such an atmosphere in our family. I feel mostly to blame as it was my inherited disease and I am the one that I think she wants to protect the most. I also proclaim my faith and I think she needs to do the same. But her faith is different than mine and it needs to be developed over time. We reminded her that she is human and it is okay to cry and be scared. I think I cried every day when I was 13 and I didn't have nearly the stuff going on that she does!<br />
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It is really hard to know what to do in this situation so we are turning to a psychologist for this one. Of course the really good doctors do not accept insurance. Not that money should deter us from helping her, but it is a big pill to swallow.<br />
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I do hope that she is able to find some peace through this process and maybe everyone could be helped. <br />
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Also, this is a very sensitive subject, so please do not mention it in front of the kids. Thanks!ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-69931837755851872152011-07-14T16:37:00.000-04:002011-07-14T16:37:14.191-04:00Erica is Doing BetterErica is doing a little better. I don't think she realizes it, but she is not complaining as much and she is not so dramatic at bed time. She is also doing more for a long time. I think this is directly linked to prayer. I thank everyone who prayed for her. I just have to convince her that she is doing better and to remember this time. Do I believe this is a complete healing? No. I had to come into her bedroom last night because she was in pain. She does not even remember me rubbing her back. I hope this is the start of a good period for her.ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-9152127546686329762011-07-03T13:38:00.001-04:002011-07-11T09:03:50.013-04:00My Yoke is Easy...When is this all going to end?! We have lived in crisis mode for so long, almost 3 years, and I cannot take it! Right now my grandma is in the hospital with staff and MRSA. She had to have emergency surgery a couple of days ago to get the infection out of her knee. Being 91 with diabetes, I do wonder what God's will is for her.<br />
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My mom has not felt well enough to leave the house lately because of a major headache and sinus infection. She does not feel well enough to even go to the grocery store.<br />
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Elizabeth is unable to walk because her hip is "out" again. The doctors think that the tendon in her hip that is torn gets caught between the bones. It usually takes a couple of days for this to resolve for her. To top it off, she broke her ankle on that side. She is going to have surgery at the Cleveland Clinic at the end of July for her hip. Hopefully this will be the beginning of the end of her hip problems.<br />
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Erica continues to have back pain. At night her pain has been so bad that she begs to go to the hospital or heaven. We are still waiting to hear about her back. She has had testing done and a visit with the neurosurgeon and still no news on if she needs to have surgery for a tethered cord. If she does have this condition, then she will undergo a minor surgery that could get her out of pain.<br />
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I have been in so much pain that I cry every morning getting out of bed. My lower back is so bad that I cannot bend over for about 2 hours. The medicine I take kicks in and I can finally get around. The stress I am sure does not help. I really need to get over it.<br />
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While I was praying for Erica I got so upset about the outcome that I felt convicted by God. "I have plans to prosper you not to harm you, plans to give you hope and a future." (Jeremiah 29:11) God will be with us no matter what the outcome will be, surgery or no surgery. <br />
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I praise God that he continues to bless us as we are in this storm. Just as I feel like my strength is giving out, I am reminded that it is not my strength, but God's that gets us through. In today's Gospel, "My yoke is easy and my burden is light." Please help me lay down my burdens and take up the yoke of Jesus.ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-82703093198363496352011-06-27T22:24:00.000-04:002011-06-27T22:24:59.340-04:00Give me StrengthMy anxiety has been so high, sometimes I feel like it is hard to breath. We are waiting to hear when Elizabeth's surgery will take place up at the Cleveland Clinic. All while Erica has been going through testing to see if she has a tethered cord. My mom has not been feeling well and my grandmother is hurt and not doing well either. I have been in so much pain when I wake up my back hurts so bad that I have to take medicine before I can move.<br />
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Please don't take this as I am unappreciative of all the blessings that have rained down upon us. I know that it is not right to be anxious right now as God has shown that He is right here with us, but I cannot grab a hold of that hope right now. I am not sure why while I know things on such a high spiritual level, yet these struggles still bring me to my knees doubting everything I believe.<br />
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I guess I would love to see my kids out of pain, but I am not sure that this is God's will. How do I deal with this reality? Am I able to praise Him while my kids are in agony? I do praise Him because I know that in the end all things will turn out for the best. All things will turn out to glorify God. Please give me the peace and strength to handle what he gives us. Please strengthen my children and family as well.ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-71630241001290504412011-06-01T09:49:00.000-04:002011-06-01T09:49:53.487-04:00My Fun in the PACUI had my surgery to correct my loose screw in my spinal cord a few weeks ago. At the last minute is was rescheduled a week before the previous date because I think God knew I could not wait. Thank God my husband was flexible with his schedule so I could get in for some relief.<br />
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The surgery was pretty straight forward. I have had the top two vertebrae fused (C1-2) to put my head on my body, then I had C4-6 fused just 6 months later. The second surgery made me feel much better and I had relatively little trouble until recently. My arms were aching so much that it was difficult to do anything with my arms. My fine motor control was also declining because my fingers were numb and tingling. It is really strange to stare at a book or a dish and think, "I just need to take it over there.." knowing that this simple task would be not only painful, but probably impossible. It seemed to me that everything in my day involved my arms. Even a hug or talking on the phone. I knew it was time to go under the knife again.<br />
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I was more nervous about this surgery than with previous surgeries but I am not sure why. While I was getting prepped, the anesthesiologist came in to talk to me. She read my file very carefully and reveled many things that I did not even know about my own body. First, she said that I have a vessel in my brain that could rupture. She said that everything should be okay, but they have a helicopter outside in case it does during surgery. That made me feel much more relaxed! Then she told me that I should not have stopped taking one of my medicines because it put me at risk for a pulmonary embolism. I was getting calmer by the minute! <br />
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I warned her, the nurses and all of the other doctors that I dislocate very easily while under anesthesia, however, I guess the message did not get to everyone because I woke up with a dislocated shoulder. Before I could talk I was trying to communicate that my shoulder had to be put back in, but the nurses did not understand me. Finally, I regained my speech, and they told me that they were not allowed to reduce it! "Well, get someone in here that can!" They had to call in my surgeon, who is an orthopedic surgeon but specializes in spines to put it back in. Everyone in the PACU heard it pop! He probably had not reduced a joint since his residency. I really do not blame anyone for the dislocation. Before the surgery I was dislocating my shoulder multiple times a night. I would wake up and put it back in. But during the surgery, that lasted at least 4 hours and my time in the PACU, it was out too long. This caused extra pain because my muscles and nerves were really ticked off.<br />
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It is bad when you are still in the PACU and you realize that you need another surgery!<br />
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This was confirmed when I went to a shoulder specialist. He looked at the MRI I had done months before and said that I needed surgery on my shoulder. My shoulder is much worse now. He also told me that I needed to have the radial nerve release as soon as possible because I will lose the ability to control my hand if I leave them compressed for too long. So if you are counting, I will need a least 2 more surgeries soon. Great! Are we having fun yet?!ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-59926846481552544012011-05-02T22:34:00.000-04:002011-05-02T22:34:05.495-04:00Surgery on the House and BodyThe house and the body are undergoing a radical transformation. In the last couple of weeks, our old kitchen was taken out and the process of reassembling it has begun. A wall was removed to expand the kitchen into our old dining room. This is the same dining room that housed Elizabeth for 1 1/2 years. We are all happy that this room is no more and will be much more functional in the future. Right now the ceiling of the new kitchen is gone and the skeleton of the cabinets are beginning to be installed.<br />
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Because the kitchen is in this state, we all are surviving on paper plates and the kindness of others. Our church has stepped up to bring us meals because of the difficulty of cooking any sort of meal during this time. Meals are further complicated because of the state of my health. A screw is pushing into my spinal cord at C-6 (toward the middle of the neck) and causing a lot of problems. There is pain in the neck area as well as weakness and a numb feeling in my arms and fingers. Most of the time I think it would be much better if my arms would just disappear right now because the pain is so intense. <br />
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Daily tasks such as typing, writing, making a sandwich, even turning a faucet are very difficult at this point. Still unable to take any powerful pain medication, little can be done to elevate the pain. This is why I am looking forward to my surgery. Last week I came close to going to the ER and asking them to just knock me out until the surgery. I am nauseous because of the pain. It is difficult to do anything! Just think, almost everything you do involves your hands. I am so tired too. My shoulders dislocate while I am sleeping. This causes me to wake up because of the pain in my shoulders as well as the numbness in my arms and fingers. Sometimes I have a lot of trouble putting my shoulders back in and I look ridiculous rolling around my bed trying to get my arms back in place! If it did not hurt so much it would be funny! I try to get things done in the house and it only causes more pain. I can't do my hair either. The pain is so bad if I try that I end up sweating like I have run a marathon just by brushing my hair. It is insane! I thank God that I will eventually regain the use of my arms. I don't think I will under appreciate them again.<br />
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Much to my surprise, God heard my cries and the doctor's office called and moved up my surgery date to Wednesday! My husband is so wonderful to change around his schedule to accommodate this curve in our lives.<br />
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So on Wednesday, a doctor will draw from my spine that which is pinching it and causing so much pain. Hopefully the relief will be immediate and permanent, but I know that given my mom's spine that is totally fused from top to bottom, my chances are slim in avoiding further surgeries. This is the nature of Ehlers-Danlos Syndrome.<br />
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Within weeks our kitchen will be fresh and new and easier for all of us to maneuver about and my neck should be fresh and new and easier to maneuver about!<br />
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We are so incredibly blessed by all that people have done for us it is difficult to express my true appreciation. Just know that God is a God of sufficiency not of insufficiency! I will praise His name forever!ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-14519407164186172002011-04-21T21:48:00.002-04:002011-04-21T21:48:41.510-04:00Miracles on Top of MiraclesSo many miracles are happening in our family’s home right now. After a year of hard work on behalf of the members of Hearth Professionals and COTF the home is almost complete. The elevator is installed and came in the nick of time as Erica broke her ankle for the 5th time just days after installation. <br />
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Friends of ours helped take down cabinets in our home over the weekend so our new kitchen could be installed. In order to save many hundreds of dollars we had to order a new dishwasher that we knew we would not use from IKEA. It just so happened that these same friends were in need of a new dishwasher. They also needed a working microwave. We could not use the microwave that we just bought a couple of years ago so we were blessed to give them both. It is amazing how God can just see the whole of the situation and bless so many people with such small “coincidences”. <br />
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Each part of this project seems to be blessed beyond measure. For instance, one of the architects that is a part of Hearth went to discuss flooring options with an owner of a flooring company. The owner asked what the project was about during their conversation. The architect, Brian Schwiederman, explained our situation and the owner told him that he had gone through a stressful time with his son because of a brain tumor. His son is fine now, but he remembered how difficult it was to have a sick child so he offered to upgrade the flooring that they were considering at cost, minus 10% and install it for free! Brian was amazed as he did not even ask for any of it.<br />
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Another example comes from near the beginning of the project. Hearth Professionals were presenting our situation to a group of vendors and other professionals. Again, without asking, a man came forward that owns a company that does automation of switches for homes and businesses. He offered to wire the entire house so that lights would turn on automatically when someone entered the room. That doors would open and also there would be personal remotes for everyone in the house to operate most of the electronics.<br />
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When the subject of dishwashers came up, Marnie Renda, the occupational therapist that originally presented our situation to Hearth and COTF, suggested that we get a new type of dishwasher that is a single drawer. She thought two of these drawers would help then theorically we would not need to empty a dishwasher. One would be for dirty dishes and the other for clean. When the time came to order the dishwashers, Deb Witcomb, president of COTF, talked to the sales person. The salesman said that the price went up since they first discussed these dishwashers. Deb explained that the price increase put these dishwashers out of reach because of the budget. She also explained the project that she and the others were doing for our family. The salesman said that there is no negotiating room on the price as the distributer sets the price. Deb went home disappointed. Before she got home she received a call from the same salesman that said that he had called the distributer and explained our situation. The distributor not only honored the original price, but doubled the size of the dishwashers to a total of 4 drawer!<br />
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“Such light, such joy flows out from this house. It affects all who come here. You told Me it was My Home. I shall use it.” (God Calling April 18th)<br />
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The company that Hearth selected to install the tile in the bathroom also blessed us. Apparently that owner of the company had a few boxes of beautiful tile in his garage that he picked up at a low cost over 3 years ago. Hoping to use it one day, no customers wanted it. He brought it out to us and I loved it. It fit right into the color scheme of the bathroom. This is high quality tile that you would see in a 5 star hotel. This tile was installed in the house for free.<br />
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The $60,000 that needed to be raised for the project fell from the sky. Plans were made in the early stages to have a fundraiser, but they fell through. Instead, the girls were placed in a Level 1 waiver from the county that allocated funds that could be used for home accessibility. The problem was no one had ever used the funds that way. Sandy Donathan, our Support Coordinator, petitioned the state to use the money in this way. She won her case and the money was used to purchase and install the elevator and part of the kitchen. The other moneys have continued to flow in steadily over the last year.<br />
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18 months ago our family felt like it was being ripped apart. I remember vividly embracing my whole family in a circle screaming, “Satan, you will not triumph in this house! This house and the members of this house belong to the Lord! Now get!” Well, Satan continues to try. It seems with each incredible blessing some calamity comes our way like an ER visit or a broken bone, a sprained ankle or surgery. However, I still claim that we are victorious because Christ overcame the world. Now we see His victory over our circumstances in the form of this amazing transformation in our house. People who were strangers to us just 2 years ago have poured their hearts and souls into our “Extreme Home Makeover.” <br />
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I told Elizabeth and Erica that a man at church was extremely upset because, “his prayers had not worked. I wanted instant healing for your girls.” Elizabeth piped up and said, “We do have instant healing, it is just in our souls, not our bodies.” Others have suggested that maybe we are not healed from EDS because we do not want to be healed or that there is something within us that blocks our healing. What I say to that is I know that God is with us. He could not be more present to us is He were to sit in the room! I would take a lifetime of pain if it meant that God is so close to us.ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com1tag:blogger.com,1999:blog-2497296666478827267.post-24523207910748019082011-03-13T12:03:00.000-04:002011-03-13T12:03:21.487-04:00Help Me Lord, For Your Mercy is Great!I spent the last week feeling sorry for myself and for my kids. Monday I went in for another epidural shot in my neck to relieve the pain. I am due for yet another neck surgery in May. The last part of the fusion is pushing against my spinal chord at the base of my neck. I saw the MRI and it looked horrible. It scares me actually. The pain is really bad in my neck, shoulders arms and fingers. Sometimes my fingers don't work the way I want. I am losing feeling in them. It is difficult to type. My arms do not have strength all of the time. Because it is inconsistent, I drop things and cooking is very painful and difficult. I feel like I am worse than I was before the other surgeries. Not only is my neck bad, but my shoulders are an absolute mess. The tendons are frayed and I wake up every night with my shoulder out of socket. It is really bad when both shoulders are out because then I cannot get out of bed! To extend my arm out for any length of time is almost impossible. Cleaning is hard and laundry makes me cry. I AM A MESS!<br />
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Currently I am applying for disability. I am doing this so that if Chuck needs to change jobs, hopefully I will have health insurance in the gap. I do not know if I will ever be insured by another health company again. To think about it makes me panic, so I am not going to dwell on it, but just complete the paperwork. I am only in my 40s and I am not sure that I will ever be physically able to return to work again. What is going on? <br />
This is not the way it was supposed to be. When Chuck and I got married the plan was that I would stay home with the kids until the last one was in 1st grade, then I would return to teaching. I received my Master's degree right before having Wizzy. Our finances would improve and I would have the same days off as the kids. Because of not only my physical problems, but my kid's limitations, that dream has gone away. I have to grieve this dream because I had it so long. It is hard to think that I am no longer a viable worker. My nephew, that claims he is an atheist, said that basically I am a drain on society and should not share in the resources of the economy. He is young and and idiot, but it cuts to the heart of what people think. Why should your tax dollars support me? Why should you work hard and I don't? <br />
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I have to redefine what it means to be viable. I have to restructure my dream. I have just been surviving for so long that I have forgotten to dream. What is my dream of the future? Why had God put me and my family through all of this? I know there is a purpose, but what is it? Am I ready to understand or are there more trails and heartaches? Where do I go from here? How long will Chuck be able to take the burden of taking care of all of us and work? How many surgeries will I have to endure? How will I be able to take care of the kids? When do I accept help and when am I accepting too much help? There is not a rule book for this or a "How to Accept Being Useless in 5 Easy Steps." <br />
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I don't process pain normally. It takes over my thoughts and my spirit. I had a blissful 3 hours when the medicine used to relax me for the shot took away pain that I did not realize I even had. Not that I want to take drugs like that all of the time, but man it was amazing! I did not hurt anywhere for the first time since I could remember. This feeling made it all the more difficult to deal with the next few days. As soon as the medicine wore off I went into a spinal headache. The pain knocked me back. I could not concentrate or even walk straight. It took at least 3 days for me to begin to recover. A spinal headache happens when too much cerebral spinal fluid is in the system and it pushes against the brain. It is horrible!<br />
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On Thursday, I was beginning to recover. Erica had hurt her ankle the day before just getting out of bed. The ankle was swollen and for a second day in a row, she wanted to go to school in her "stinking wheelchair." She HATES her chair, but she could not put any pressure on her ankle. She has broken her ankle at least 4 times before and she would walk on it for days. She even would jump off of the x-ray table. This time was different. She was in a lot of pain. So I called her orthopedic surgeon about it. This was the second day and it was not getting better. They could not see her, but sent her to the fracture clinic. The fracture clinic is a group of orthopedic surgeons that sees a bunch of kids that might have breaks in the bones. These doctors do not understand EDS and it can be a long nightmare of an experience. <br />
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I was preparing to leave to get Erica to the doctor when Elizabeth told me about how she was feeling. Elizabeth feel at the conference she attended in Pittsburgh because she did not take all of her heart meds. She received a concussion. We took her into the doctor earlier in the week because of a constant headache and they told us to call back if she felt worse in the head, dizzy or nausea. When she got home from school she felt all of those things. I was going to leave CJ and Elizabeth alone just for a little until Chuck could get home. I called the school and talked to the nurse. She did not know about the concussion. She told me to talk to her doctor. I finally talked to the doctor and they told me to bring her into the ER for a CT scan of her head. Well I was already in the car trying to get Erica to the fracture clinic. <br />
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I called Chuck and told him that he had to take Elizabeth to the ER in Liberty. He stopped and got dinner for them. Elizabeth refused to eat. By the time she got to the ER she had a fever.<br />
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The doctors in the fracture clinic said that Erica at the very least had a broken ankle on her growth plate and probably damage to her tendons. This is her 5th ankle fracture. So she got fitted for another cast. She was crying because she knows that the cast means that she will need to use her wheelchair. She went to the spinal surgeon last week and her back continues to get worse and this was before she broke her ankle. Any change in the gait makes the pain even worse. He has warned us in the past that her mid back is so loose that she could eventually not walk because of it. He had already suggested an increase in her pain meds because of the back pain.<br />
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Anyway, she was really upset. I was driving back from downtown and talking with Chuck. He had just gotten to Liberty Children's. So I met him there and switched kids. Because of my upcoming neck surgery and constant shoulder dislocations, it makes it very painful to load and unload her wheelchair.<br />
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The ER had just<span style="background-color: white;"> evaluated her quickly</span> her so I got her registered. It was pretty busy but eventually she was brought back. She looked terrible. It was obvious now that she had a fever, which did not follow the concussion symptoms.<br />
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We got back and talked to the doctor. I had to explain the recent diagnosis of the subluxation of her C1-2 to 70-80% but because she does not have other symptoms the decision was made not to do the fusion surgery. We also had to explain her condition that is actually worse than POTS and the hit to the head along with the EDS and other fun stuff related to it.<br />
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Anyway, she started to make calls, but we agreed that the fever did not fit the concussion. She decided to do a strep test while she was waiting to hear back from some of the other doctors about the CT. Because she had just had the rotational CTA with dye to see if her vertebral arteries were occluded when she turned her neck which was the reason she is not having the surgery, they did not want to expose her to more radiation.<br />
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When the doctor came in and said that she had strep we all let out a scream! I have never been so happy to hear that my kids was positive for anything! After 7 straight hours in the hospital, we were finally on our way home. Mind you, I am still in extreme pain and can barely move.<br />
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Soooo yesterday I took Erica into the doctor for a strep test and she was positive. Now I am feeling like I have strep as well. I will go in on Monday before I have to take Erica in for an heart echo. <br />
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Okay, enough complaining. Tomorrow I will hopefully feel better. I know that God is right here and His sufficiency is boundless. I ask for faith to understand that His timing is perfect and He will make me whole and healed in the way He sees fit. It might not be the way I planned or expected, but He is so much more than me and knows what I need before I even ask for it. Help me Lord, for your mercy is great!ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0tag:blogger.com,1999:blog-2497296666478827267.post-7167932000219529332011-03-06T09:50:00.000-05:002011-03-06T09:50:20.652-05:00Glory Be to God!!!!Elizabeth will not need to go through the C1-C2 fusion surgery, right now. I say right now, and this will sound ridiculous, the only thing wrong with her is that her head comes off her body at least 70%. The problem is the doctors do not know what is considered normal. We cannot risk surgery based only on that test. The risk would be worth it if she was turning her neck and the arteries to her brain were being pinched. She went through a series of tests to determine if this indeed was happening. According to the tests, she is okay. She is not having numbness and tingling or severe headaches or neck pain. She is also not having any changes in her brain or spinal tissue. Given all of these factors as well as the fact that she is still falling and this could be deadly while recovering from the fusion surgery, we all decided that she is okay for right now.<br />
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That CTA that was created for her turned out to be a huge blessing. We did not need to guess or try to figure out on the operating table if the arteries were being compromised. Praise God!<br />
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While preparing for the CTA, the decision was made to take her off of some of the medications that she takes to control her blood pressure and heart rhythm. She crashed pretty hard. She had difficulty walking, paying attention and was very dizzy. This gave us additional information that the neck is not the culprit in the blacking out episodes.<br />
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Right now she will not need to wear her neck brace which is such a blessing for Elizabeth. This is the part that I cannot explain to the doctors. Before we went into the appointment, Chuck, Elizabeth and I all decided to place the final decision in God's hands. We asked God to speak through Dr. Durrani. God is the one to be praised here. It was our willingness to let go of control of the situation and allow God to direct our path.<br />
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This is not to say that she will never need the surgery. She will be followed by Dr. Durrani and if and when she does develop any of the symptoms mention above, we will know the source and know what to do for her at that time. Until then, we will trust that God knows what He is doing. It is a leap of faith to know that your daughter's head is not attached very well and be okay with that. We cannot live in fear.<br />
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Currently she is attending a conference on leadership. She fell last night. I am staying the same hotel and the directors of the conference called me right away. I took her to her room and discovered that she had missed a total of 4 of her scheduled medications. I think we found our smoking gun! I was able to give her her medication, some salty snacks and lots of water. She felt so bad when she realized that her fall was due to the lack of medicine. <br />
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After about 2 hours, she was able to return to the conference and even participate in a variety show that she had organized! Her classmates cheered when she sang a song in Japanese.<br />
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God is so good!ICNMTSUhttp://www.blogger.com/profile/12797787626305370055noreply@blogger.com0