tag:blogger.com,1999:blog-34538434411742305252024-03-12T20:54:40.037-07:00Through The Eyes of JesusWhat were God’s intentions as He designed and created children with disabilities? What was His vision and purpose? I want to take a hard look at what society views as defective and ask, "What does God see?" I hope we can gain a better vision of what He sees and His purposes in His creation. The cornerstone of the discussion will be the Bible. The personal narrative will be our family’s journey with Epidermolysis Bullosa.Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.comBlogger107125tag:blogger.com,1999:blog-3453843441174230525.post-32961304700555677252014-04-27T21:34:00.000-07:002014-04-27T21:34:57.909-07:00LivEBraveI am proud to share with you the documentary that our son, Andrew, produced for his senior college project. Please take the time to watch the video and then share it with others. We want to spread the word about EB and encourage others to, "Trust God and Don't be Afraid". Congratulations to Andrew on the awards won, you did a wonderful job portraying AJ's life.<br />
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<a href="http://vimeo.com/awfisch/livebrave" target="_blank"><span style="font-size: x-large;">LivEBrave</span></a></div>
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Hopefully I can give you a full family update in the coming weeks.</div>
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Barbara</div>
Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-73721522734852351482013-12-16T19:39:00.001-08:002013-12-16T19:39:49.187-08:00There Is No Pain In HeavenWe just returned home from the hospital and we are so thankful to be home. AJ developed another serious infection on his foot (He had the same infection a month ago; different foot this time). He was in so much pain that his body shook and he kept screaming. He had a temp, had not walked in 24 hours and I knew the wound was not going to heal without help. The clinic was busy so the ER was our only choice. Thankfully it was not a long wait before they got him in. <br />
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AJ was a real trooper even when the nurse (that acted like she knew all about EB) tore the skin off his foot. You can imagine how much pain he was in. He is feeling better now with some good pain meds. The antibiotic should do its job in 24 hours, otherwise we are inpatient. AJ was so sweet when we left, he told the nurse that he wanted to go to heaven; he told her there is no pain there. The nurse looked pretty uncomfortable with that statement. We asked him to stick around a while more and that he would be feeling better soon. <br />
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I'm so glad heaven is real and AJ knows that someday Jesus will take him there. We may be home but it's only our temporary home. Heaven is our real home and it's good to remember that.<br />
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We appreciate your prayers for AJ, that this infection would clear quickly.<br />
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Barbara and AJBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-12311657615867276572013-12-15T19:54:00.001-08:002013-12-15T19:55:26.103-08:00Happy Birthday AJ!Today we celebrated AJ's sixth birthday. Oh how blessed we are; that God has given us these years with AJ. We pray that God will give AJ many more years but we know that life with EB is full of unknowns (hey we know life without EB is filled with enough unknowns). Today was hard for AJ in that he had much more pain than usual. I'm not sure why it's worse today but it just is. AJ did enjoy his Angry Bird cake and his friend, Briella, and her parents celebrated with us.<br />
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As I thank God for AJ's life tonight, I also cry for a friend, Steve Stearns. Steve and his wife Tammi were friends that we met through our EB family. Tammy passed away this past year, suddenly and without warning. She left behind her preschool daughter, Chloe, and baby Liam, that was born with EB. Tonight little Liam passed away. Steve and Chloe are left behind with Mom and baby brother in heaven. My heart breaks for them. You can read more about Liam and his family here: <a href="https://www.facebook.com/LittleLiamsLambs" target="_blank">Liam's Lambs</a><br />
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Life is unpredictable but God is our sure and solid rock. How thankful I am that we have Him to cling to. Please pray for Steve and his daughter Chloe as they mourn the loss of their little Liam.<br />
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BarbaraBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-70525494883274893662013-11-12T18:05:00.002-08:002013-11-12T19:01:38.356-08:00I'll Take It!<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 115%;">There are
some things in life that you wait a long time for.</span><span style="line-height: 115%;"> </span><span style="line-height: 115%;">Today I had a glimpse of
the work God is doing in my daughter’s life.</span><span style="line-height: 115%;"> </span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">When
children have suffered abuse and neglect they don’t see new adoptive parents
as the blessing they have been waiting for.
Instead they visualize you as another enemy that needs to be neutralized. That may seem like tough words to describe my
kids but it’s fair to say, some of my kids have been really tough.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">You give and
give and give…then you give some more; all the time receiving nothing in
return. Actually you do receive
something. You are on the receiving end
of swearing, hitting, tantrums and full blown attempts to push you into a state
of emotional collapse. Add to that, false
allegations of abuse that your child makes to child protective services (their
attempt at neutralizing you). Then add their
suicidal and homicidal attempts that make the professionals in their lives
wonder what you did to cause their distress.
Top it off with prosecutors, judges, jails and locked prison cells; achievements mothers don’t dream of. Instead you hold onto the knowledge that God has a
plan and a purpose even when the journey seems like a walk into darkness.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">It wasn’t
always that way. I remember with
fondness the day my daughter joined our family.
Spitfire would be an understatement of her personality. I was warned with subtle comments from the
social worker. “She is quite the Diva
and I’m so glad your husband is good at home repairs!” Her first bedtime consisted of her destroying
her room that I had so carefully decorated and listening to her scream, “You
will never be my mother!” I, wise woman
that I was, banged my head on the door frame asking God, “What have we done?” <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Years
passed. My little one moved on. On to residential facilities, failed
treatment homes, hospitals, respite homes, group homes, the list goes on. Born an addict, to an addict, her first four
years consisted of living in twelve foster homes, many of those abusive. I was able to actively be her Mom for the
next seven years. I say actively because those were the only
years she was able to live at home where we could show her she was loved; precious to God and to us. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Today's letter to my
daughter,<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"> Honey, five
years have passed and there have been many, many more placements for you. Today was a day that I will remember as
fondly as the day you arrived in our home.
Today you sit in a jail cell: it’s not a surprise that you are
there. We had a phone conversation and I was surprised by your tone of
voice. I have not heard you speak in a
calm tone for years. Your words were
measured and filled with tears; you asked me to be your Mom today. You acknowledged the pain and anger you
brought into our home. You thanked me for never giving up on you. You asked me to be your Mom today. Did I say that already? Yes! You also said, "I love you"<o:p></o:p></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 115%;"> Wow, I know God
has walked with you when we could not.</span><span style="line-height: 115%;"> </span><span style="line-height: 115%;">We
have prayed for you and will continue to pray that God will complete His perfect
work in you.</span><span style="line-height: 115%;"> </span><span style="line-height: 115%;">Today is a day to rejoice.</span><span style="line-height: 115%;"> </span><span style="line-height: 115%;">I know tomorrow will have its challenges but for today, “I’ll take it”</span><span style="line-height: 115%;"> </span><span style="line-height: 115%;">I’ll take your invitation to be your Mom and with God’s help I’ll be just the Mom you need.</span><span style="line-height: 115%;"> </span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">I Love You
too Honey,<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Mom<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="color: blue; font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 24px;">Galatians</span><span style="line-height: 115%;"> 6:9-10<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: blue;">And let us
not grow weary of doing good, for in due season we will reap, if we do not give
up. So then, as we have opportunity, let
us do good to everyone, and especially to those who are of the household of
faith. </span><o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">To my
readers; Don’t give up…God is at work…even in the darkness.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Barbara</span><span style="font-size: 16pt;"><o:p></o:p></span></span></div>
Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com1tag:blogger.com,1999:blog-3453843441174230525.post-6754124832752293002013-11-01T07:49:00.003-07:002013-11-01T07:49:41.994-07:00All Saints Day<div class="MsoNormal">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">We live in a day where the lives of the rich and famous
are followed in most every newspaper and tabloid. Today, being All Saints Day, let’s focus on something
of greater value; remembering the saints that have gone before us and encouraging
those living among us.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;"> <o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;">A Saint is defined as someone who professes faith in
Jesus Christ and strives to live as Christ did.
I am thankful for the examples of the Saints that have gone before me
and I encourage the Saints living today to remember the words of Hebrews 12:1-2;</span></div>
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<span style="color: blue;"><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">“Therefore,
since we are surrounded by so great a cloud of witnesses, let us also lay aside
every weight, and</span></span><span class="apple-converted-space"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></span><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">sin which clings so closely, and</span></span><span class="apple-converted-space"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></span><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">let us run</span></span><span class="apple-converted-space"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></span><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">with endurance the race that is</span></span><span class="apple-converted-space"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></span><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">set before us, looking to Jesus, the founder and
perfecter of our faith,</span></span><span class="apple-converted-space"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></span><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">who for the joy that was set before him endured
the cross, despising</span></span><span class="apple-converted-space"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></span><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">the shame, and</span></span><span class="apple-converted-space"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;"> </span></span><span class="text"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 12pt; line-height: 115%;">is seated at the right hand of the throne of God.</span>”</span></span><span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 115%;"><o:p></o:p></span></div>
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<span style="color: blue;"><span class="text"><br /></span></span></div>
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<span class="text">Carpe diem,</span></div>
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<span class="text"><br /></span></div>
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<span class="text">Barbara</span></div>
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<span style="color: blue;"><span class="text"><br /></span></span></div>
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Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-81824664889143509142013-10-27T11:48:00.000-07:002013-10-27T11:48:27.828-07:00A Final Letter to my Father in Law<div class="MsoNormal">
Yesterday we said goodbye, but I never really felt we had
the chance to say hello. For years I listened to the stories of your life, you
touched the hearts of many.</div>
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I never knew you during the days of the Resurrection House;
the days your charismatic personality and love for God reached out to the
hurting and the lost. You were deeply
loved by many.</div>
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Time changed things; you changed, everyone changed, some for
the better and some for the worse. It’s
all just a part of history now.</div>
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We met not long after you had begun a new journey in your
life. You did not want your son to marry
me. There was nothing I could have said
or done to meet your approval. I want to
believe that your love for your son and your own personal pain would not allow
you to accept me for who I was.</div>
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You preached surrender to God but you didn't share with me
the joy or the love that described you in the past. I wanted so badly to meet that man, if even
for just a day. </div>
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You continued to give of your time and money, to
strangers. Your family missed you. You missed our wedding, the birth and
adoption of your grandchildren, the holidays and the birthdays. You missed knowing the man that your son
became. What a tremendous loss for you.</div>
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For the words and actions that hurt so deeply, I forgive
you. I hold no bitterness or anger
toward you.</div>
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Today I grieve your passing; the passing of my husband’s
father. I grieve the loss that my
children never really met you; their grandfather.
I grieve and have hope because even amidst the mistakes and suffering,
you knew that you needed a savior. You
knew that it was not by anything you did that you could enter heaven. You knew that by grace we can become the
children of God. We did not share much
but the most important thing we shared was Jesus.</div>
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Rest in peace Bun; we will meet again and it will be new and
good. I look forward to saying
Hello. </div>
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With love,</div>
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<br /></div>
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Barbara, your Daughter-in Law</div>
Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-89356905381583190792013-10-25T07:34:00.001-07:002013-10-25T07:34:06.003-07:00National EB Awareness WeekIn 2006, the U.S. Senate and Congress declared that the last week of October would become the National Epidermolysis Bullosa Awareness Week. The purpose in setting this week aside was to:<br />
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<ul>
<li>Support the goals and ideals of EB awareness week </li>
<li>Raise public awareness and understanding of EB.</li>
<li>Recognize the need for a cure</li>
<li>Encourage people to support the week through ceremonies and activities to promote awareness</li>
<li>Foster an understanding of the impact the disorder has on patients and their families</li>
</ul>
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To help you better understand the impact of EB, I would like to share the following video with you. In it you will see many of AJ's friends that battle EB and those that have not survived the disorder.</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/wqfs5FcqhLw?feature=player_embedded' frameborder='0'></iframe></div>
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We are also excited to share the first children's book, that was recently published, about EB. In honor of EB we will be donating the book to AJ's elementary school.</div>
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Thank you again for the support you provide us. We are thankful that God has brought AJ into our family and that He has shown us, as the song describes, </div>
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Blessings in Disguise.</div>
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I'll close with a picture of our little (Big) blessing. Maybe someday he will be the doctor instead of the patient. </div>
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Barbara</div>
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Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-19094008987684999832013-10-21T10:06:00.000-07:002013-10-22T07:48:09.894-07:00Changing LeavesThe leaves here in MN have changed to a dusky brown with a few yellows left. The seasons are changing and we can feel winter in the air. This reminds me of how our lives are filled with change. Often I feel like I am on a ride where I might prefer to slow down for just a bit. Just as the wind is whipping the leaves into a cyclone; life can sometimes feel the same. How good it is that God is constant; He does not change. We can be assured of his love and provision. God's word is a treasure that I hold fast to. I can rest in the knowing that God is able to keep what I have committed and I rejoice in knowing that the day of my full redemption is coming. I am persuaded of that!<br />
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<span style="color: blue; text-align: center;">I Timothy 1:12 states,</span></div>
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<span style="color: blue; text-align: center;">I know whom I have believed and am persuaded that He is able </span><span style="color: blue; text-align: center;">to </span><span style="color: blue; text-align: center;">keep what I have committed to Him until that Day.</span></div>
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While I wait...I'm not so good at waiting...but while I wait, much is happening. Here are some of the highlights of this past six months;</div>
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<li>AJ graduated from preschool. It was an exciting day for everyone.<br />
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<li>Katie graduated from Bethlehem College & Seminary. We had a great time of celebration at her commencement and we are excitedly watching God's plans unfold in her life.</li>
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<li>We were able to do some traveling this summer, including to our favorite vacation spot in Grand Marais.<div class="separator" style="clear: both; text-align: center;">
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<li>We had a Shaw family reunion at our home this summer. It was so great to be able to visit with each person that came. <div class="separator" style="clear: both; text-align: center;">
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<li>Sadly my father suffered a stroke this summer. We are thankful for the partial recovery that God has brought and we continue to pray for He and my Mom; daily life is harder for both of them. Our dependence on God deepens during these experiences that push us beyond what we thought we could bear and God provides the grace to keep moving forward.</li>
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<li>AJ has had an entire 12 months free of hospitalizations. This is a first for AJ and we are so thankful for God's mercy over him. He is in the 75% on the growth charts; an uncommon threshold for a child with EB.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7WtnADwoWAFSxWUqdX4Tti4vf5ejxvgDO4mLfQg2cKb0dADaQkLzcXPuPa-1mIQ9n9at2-r32iEb0IygMd7J-yOMFYwGMpgByYxWYhf_iygHl6pVKO81aFPd5ufiin0P7uzsKovYNkwOQ/s1600/IMG_5867.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7WtnADwoWAFSxWUqdX4Tti4vf5ejxvgDO4mLfQg2cKb0dADaQkLzcXPuPa-1mIQ9n9at2-r32iEb0IygMd7J-yOMFYwGMpgByYxWYhf_iygHl6pVKO81aFPd5ufiin0P7uzsKovYNkwOQ/s320/IMG_5867.jpg" width="240" /></a></div>
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<li>AJ began Kindergarten and is loving every minute. He is surrounded by friends and knows he is loved by many<div class="separator" style="clear: both; text-align: center;">
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<li>We have a new Granddaughter, Nora Bea Fischer. She is beautiful and we are so thankful for her.</li>
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We have many reasons to celebrate life and along with the changing of the seasons, we sometimes experience sorrow. Scott's father is very close to leaving this earth and meeting his heavenly father. It is with sorrow and rejoicing that we prepare for this change. We are so thankful that God is with us every step of the way.</div>
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We are excited about the good news we hear from California regarding Arianna. We are told that the process is again moving along and it is possible that she will be here by Christmas. I would like to share a story that helps shed some light into her life the past four years.</div>
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<li>It is rare that Arianna has any opportunity to take part in activities outside of the hospital care center where she lives. Last month, she had the special opportunity to visit a zoo. It was in the evening that they visited, as she does not handle the heat well. Her nurse was directing her to look at a zoo animal but Arianna continued to look off in another direction. Her nurse told her to look in the direction of the animal but Arianna responded by saying, "No, look at this! It is the moon! I have never seen the moon before!"</li>
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How incredible and how sad. A little six year old girl having never seen the moon. We can't wait to show her the many, many things that God has for her; the adventures to experience and the love of a family. Please continue to pray for us, that we will soon be united together. We do have a financial need regarding Arianna's placement. Due to the delays in her adoption, we recently needed to update our adoption/foster care home study. This was an unexpected $900 cost and if anyone would like to contribute, we welcome the assistance to Arianna's adoption fund. Donations can be mailed to: <span style="text-align: center;">Scott and Barbara Fischer, </span><span style="text-align: center;">902 Beachwood Court NE, </span><span style="text-align: center;">Stewartville, MN 55976</span></div>
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<span style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjqNlXQ90SZFAvfs74ErCJKPYC7YA-0bGYoW5_VyGZvO7qH9LX3Al1GbjWJkXtmj3AxTvJ7X-YaaCZA7DiG1EzzSlvVHV2173pQMu1a3dXCWbUZgwQKrmGT6prakABcfa_45rIlWdy1Ocn/s1600/Arianna.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjqNlXQ90SZFAvfs74ErCJKPYC7YA-0bGYoW5_VyGZvO7qH9LX3Al1GbjWJkXtmj3AxTvJ7X-YaaCZA7DiG1EzzSlvVHV2173pQMu1a3dXCWbUZgwQKrmGT6prakABcfa_45rIlWdy1Ocn/s1600/Arianna.jpg" /></a></span></div>
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I encourage you to keep looking for the beauty that God provides during the changing of seasons in our lives. Last evening I walked around my neighborhood while the wind was blowing and a light rain was coming down. The weather matched my mood to a certain extent. I shared my sorrow with the Lord and then turned around to see the most beautiful tree. It was a vibrant red against the backdrop of an emerging darkness. I thought the beautiful colors of the season were gone but I was wrong. Here stood this beautiful tree; a reminder of God's beauty even in the darkness. </div>
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<span style="color: blue;"><span style="font-size: 1.05em; font-weight: normal;">A Time for Everything </span><span style="font-size: 16px;"><span style="font-weight: normal;">Ecclesiastes 3 (</span></span><span style="font-size: 12px; font-weight: normal;">English Standard Version ESV)</span></span></h1>
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<span style="color: blue;"><span class="chapternum" style="bottom: -0.1em; font-size: 1.25em; font-weight: normal; left: 0px; line-height: 0.8em; position: relative;"> </span><span style="font-size: 16px; font-weight: normal;">For everything there is a season, and</span><span style="font-size: 16px; font-weight: normal;"> </span><span class="crossreference" style="font-size: 0.65em; font-weight: normal; vertical-align: top;" value="(<a href="#cen-ESV-17361A" title="See cross-reference A">A</a>)"></span><span style="font-size: 16px; font-weight: normal;">a time for every matter under heaven:</span><span style="font-size: 0.75em;"> </span></span></h1>
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<span class="text Eccl-3-2" id="en-ESV-17362" style="color: blue; position: relative;">a time to be born, and a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17362B" title="See cross-reference B">B</a>)"></span>die;</span><br />
<span class="text Eccl-3-2" style="color: blue; position: relative;">a time to plant, and a time to pluck up what is planted;</span><br />
<span class="text Eccl-3-3" id="en-ESV-17363" style="color: blue; position: relative;"><span class="versenum" style="display: block; font-size: 0.75em; font-weight: bold; left: -4.8em; position: absolute; vertical-align: top;"> </span>a time to kill, and a time to heal;</span><br />
<span class="text Eccl-3-3" style="color: blue; position: relative;">a time to break down, and a time to build up;</span><br />
<span class="text Eccl-3-4" id="en-ESV-17364" style="color: blue; position: relative;"><span class="versenum" style="display: block; font-size: 0.75em; font-weight: bold; left: -4.8em; position: absolute; vertical-align: top;"> </span>a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17364C" title="See cross-reference C">C</a>)"></span>weep, and a time to laugh;</span><br />
<span class="text Eccl-3-4" style="color: blue; position: relative;">a time to mourn, and a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17364D" title="See cross-reference D">D</a>)"></span>dance;</span><br />
<span class="text Eccl-3-5" id="en-ESV-17365" style="color: blue; position: relative;"><span class="versenum" style="display: block; font-size: 0.75em; font-weight: bold; left: -4.8em; position: absolute; vertical-align: top;"> </span>a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17365E" title="See cross-reference E">E</a>)"></span>cast away stones, and a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17365F" title="See cross-reference F">F</a>)"></span>gather stones together;</span><br />
<span class="text Eccl-3-5" style="color: blue; position: relative;">a time to embrace, and a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17365G" title="See cross-reference G">G</a>)"></span>refrain from embracing;</span><br />
<span class="text Eccl-3-6" id="en-ESV-17366" style="color: blue; position: relative;"><span class="versenum" style="display: block; font-size: 0.75em; font-weight: bold; left: -4.8em; position: absolute; vertical-align: top;"> </span>a time to seek, and a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17366H" title="See cross-reference H">H</a>)"></span>lose;</span><br />
<span class="text Eccl-3-6" style="color: blue; position: relative;">a time to keep, and a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17366I" title="See cross-reference I">I</a>)"></span>cast away;</span><br />
<span class="text Eccl-3-7" id="en-ESV-17367" style="color: blue; position: relative;"><span class="versenum" style="display: block; font-size: 0.75em; font-weight: bold; left: -4.8em; position: absolute; vertical-align: top;"> </span>a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17367J" title="See cross-reference J">J</a>)"></span>tear, and a time to sew;</span><br />
<span class="text Eccl-3-7" style="color: blue; position: relative;">a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17367K" title="See cross-reference K">K</a>)"></span>keep silence, and a time to speak;</span><br />
<span class="text Eccl-3-8" id="en-ESV-17368" style="color: blue; position: relative;"><span class="versenum" style="display: block; font-size: 0.75em; font-weight: bold; left: -4.8em; position: absolute; vertical-align: top;"> </span>a time to love, and a time to <span class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-ESV-17368L" title="See cross-reference L">L</a>)"></span>hate;</span><br />
<span class="text Eccl-3-8" style="color: blue; position: relative;">a time for war, and a time for peace.</span></div>
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<h3 style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 1.05em;">
<span style="color: blue; font-weight: normal;"><span class="text Eccl-3-9" style="font-size: 16px;">What <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17369M" title="See cross-reference M">M</a>)"></span>gain has the worker from his toil?</span><span style="font-size: 16px;"> </span><span class="text Eccl-3-10" id="en-ESV-17370" style="font-size: 16px;"><span class="versenum" style="font-size: 0.75em; vertical-align: top;"> </span>I have seen <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17370N" title="See cross-reference N">N</a>)"></span>the business that <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17370O" title="See cross-reference O">O</a>)"></span>God has given to the children of man to be busy with.</span><span style="font-size: 16px;"> </span><span class="text Eccl-3-11" id="en-ESV-17371" style="font-size: 16px;"><span class="versenum" style="font-size: 0.75em; vertical-align: top;"> </span>He has <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17371P" title="See cross-reference P">P</a>)"></span>made everything beautiful in its time. Also, he has put eternity into man's heart, yet so that he cannot <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17371Q" title="See cross-reference Q">Q</a>)"></span>find out what God has done from the beginning to the end.</span><span style="font-size: 16px;"> </span><span class="text Eccl-3-12" id="en-ESV-17372" style="font-size: 16px;"><span class="versenum" style="font-size: 0.75em; vertical-align: top;"> </span>I perceived that there is <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17372R" title="See cross-reference R">R</a>)"></span>nothing better for them than to be joyful and to <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17372S" title="See cross-reference S">S</a>)"></span>do good as long as they live;</span><span style="font-size: 16px;"> </span><span class="text Eccl-3-13" id="en-ESV-17373" style="font-size: 16px;">also <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17373T" title="See cross-reference T">T</a>)"></span>that everyone should eat and drink and take pleasure in all his toil—this is <span class="crossreference" style="font-size: 0.65em; vertical-align: top;" value="(<a href="#cen-ESV-17373U" title="See cross-reference U">U</a>)"></span>God's gift to man.</span></span></h3>
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<span style="font-weight: normal;"><span class="text Eccl-3-13" style="font-size: 16px;"><br /></span></span></div>
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<span style="font-weight: normal;"><span class="text Eccl-3-13" style="font-size: 16px;">Thanks again for reading about our journey,</span></span></div>
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<span style="font-weight: normal;"><span class="text Eccl-3-13" style="font-size: 16px;"><br /></span></span></div>
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<span style="font-weight: normal;"><span class="text Eccl-3-13" style="font-size: 16px;">Barbara</span></span></div>
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Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-19441684023059449682013-08-08T12:32:00.000-07:002013-08-08T12:32:21.022-07:00AriannaHello Everyone,<br />
<br />
So many times I have been meaning to post but life has been busy. AJ has not been hospitalized since last fall and we are so thankful for his good health. He has had one dilatation of his throat but he is already in need of another. We keep plugging away day by day.<br />
<br />
I have lots of good updates to share but today I have something more important. We have spent much of the last eight months preparing for the adoption of our new daughter, Arianna. She is a sweet treasure that lives with Spinal Muscular Atrophy, type 2. She is ventilator dependent but is still quite the chatterbox.<br />
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<br />
Arianna's room is ready and waiting for her and so is her family. As final preparations were being made for her arrival, Arianna's social worker quit his job and the county of San Diego notified us that they were no longer planning to place Arianna in any adoptive home.<br />
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Every child deserves a family and we will advocate for Arianna the best we can. The support of the SMA community has been overwhelming. Thanks to them, they started a petition to bring Arianna home. <br />
<br />
First, I would like to share with you the video San Diego child services made when they were searching for a family for Arianna. This was before she had a tracheotomy and placed on a ventilator. <a href="http://www.cbs8.com/story/16634847/princess-arianna-would-love-a-forever-family-in-her-fairy-tale" target="_blank">Arianna's video</a><br />
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Second, I would like to share the petition at Change.org. Please consider signing the petition to allow Arianna a home. All you have to do is click on this link and follow the simple directions: <a href="http://www.change.org/petitions/child-welfare-services-san-diego-ca-reverse-adoption-decision-on-arianna-j?utm_campaign=signature_receipt&utm_medium=email&utm_source=share_petition" target="_blank">Petition to allow Arianna a family</a><br />
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Thank you so much for you support. We believe God has a plan for Arianna and we will continue to advocate for her.<br />
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Many thanks,<br />
<br />
Scott and Barbara<br />
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<br />Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com2tag:blogger.com,1999:blog-3453843441174230525.post-30497531679683408892013-04-24T12:05:00.001-07:002013-04-24T12:05:43.029-07:00Go Twins!Thanks to <a href="http://www.hopekids.org/" target="_blank">HopeKids</a>, we were able to attend a Twins game last night. It was AJ's first game and he loved it. The Twins lost but AJ really got into the cheering. At the end of the game he yelled, "Way to go Orange (Miami Marlins), You Lose Blue (Twins). He loved the opportunity to play with the other children that were so accepting of his bandages. We were thrilled about the warmth that the suite provided - still too cold for us to sit out in the Minnesota weather and watch a ball game. AJ stuffed himself with his favorite food; cotton candy. He ate almost an entire bag and never got sick. We didn't arrive home until 1:30 am but it was so worth it!<br />
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Thank you HopeKids<br />
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From all the Fischers<br />
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<br />Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-32455263041932984312013-03-02T16:46:00.002-08:002013-03-02T16:46:34.008-08:00It's Good to Remember<br />
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<span style="font-size: large;"><span style="font-family: Cambria, serif;">Today is a good day.</span><span style="font-family: Cambria, serif;"> </span></span></div>
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<span style="font-family: Cambria, serif;"><span style="font-size: large;"><br /></span></span></div>
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<span style="font-family: Cambria, serif;"><span style="font-size: large;">It’s a good day to remember.</span></span></div>
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<span style="font-size: large;"><span style="font-family: Cambria, serif;">Rachel, you would be 28 this year </span></span></div>
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<span style="font-size: large;"><span style="font-family: Cambria, serif;">if you were
still with us.</span><span style="font-family: Cambria, serif;"> </span></span></div>
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<span style="font-family: Cambria, serif;"><span style="font-size: large;"><br /></span></span></div>
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<span style="font-size: large;"><span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">I wonder what you are doing today? </span><span style="font-family: Cambria, serif;">I wonder what you would be doing
if you were still here?</span></span></div>
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<br /></div>
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<span style="font-family: Cambria, serif; font-size: large;">I am wise enough to understand </span><span style="font-family: Cambria, serif; font-size: large;">that you are in a lot better place. </span></div>
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<span style="font-family: Cambria, serif; font-size: large;">I wouldn't</span><span style="font-family: Cambria, serif; font-size: large;"> wish for you to come
back.</span><span style="font-family: Cambria, serif; font-size: large;"> </span></div>
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<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">I want you to know that I still remember you. <o:p></o:p></span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">I really don’t cry anymore. </span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">I hope that doesn't bother you.</span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">Jesus
really has turned my sorrow into joy. <o:p></o:p></span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">I wish you could have met your</span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"> sisters and brothers. <o:p></o:p></span></span></div>
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<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">I wish we could have spent more
time together. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">Nine months of a pregnancy was
not enough. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-size: large;"><span style="font-family: Cambria, serif;">I remember what it was like
losing you.</span><span style="font-family: Cambria, serif;"> </span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-size: large;"><span style="font-family: Cambria, serif;">I remember being numb and seeing
all the other beautiful babies that were still alive; </span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-size: large;"><span style="font-family: Cambria, serif;">It was a sad reminder that I couldn't have my firstborn
daughter. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">Since your birth and death, I
have heard of other babies that have died from your syndrome. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">Potter’s Syndrome is still fatal
in every case. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">Some families suffer the loss of
more than one child from this disorder.
I can’t imagine that. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">It was so difficult to lose you. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">I wish I could visit the cemetery today</span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">but it is too far away.</span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">I remember the sadness </span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;">but today
my heart is filled with hope. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">On your tombstone are two Bible
verses.</span><span style="font-family: Cambria, serif; font-size: large;"> They</span><span style="font-family: Cambria, serif; font-size: large;"> read;</span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="background-color: white; margin-bottom: 0.0001pt; text-align: center;">
<span style="color: blue; font-size: large;"><b><span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">1
Thessalonians 4:16-17 </span></b></span></div>
<div class="MsoNormal" style="background-color: white; margin-bottom: 0.0001pt; text-align: center;">
<span style="color: blue; font-size: large;"><b><span style="font-family: "Cambria","serif"; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></b></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;"><span style="color: blue;">For the Lord himself shall descend from heaven with a shout, with
the voice of the archangel, and with the trump of God: and the dead in Christ
shall rise first:<b><sup> </sup></b>Then we which are alive and remain
shall be caught up together with them in the clouds, to meet the Lord in the
air: and so shall we ever be with the Lord.</span><o:p></o:p></span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;">Rachel, these verses are why I can still live; </span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;">without you. </span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;">God has filled my heart with hope</span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;"> and our day is coming. </span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">A day where we will not have to say goodbye
again. A day where we can share our
lives together. </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">We have eternity Rachel
and some days I can’t wait for our lives together, to begin again. </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">I love you
Rachel. </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">I don’t know if you celebrate
birthdays in heaven but I am remembering. </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">Remembering your short life, remembering losing you and remembering that
we have a promise from our Heavenly Father.</span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">I'm listening for the trumpet Rachel. </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">We will meet the Lord, together. </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">I
love you Honey. </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">I'm crying now.</span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">They are peaceful tears, </span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;">filled with love</span><span style="font-family: Cambria, serif; font-size: large;">.</span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;">Happy Birthday!</span><o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="background-color: white; text-align: center;">
<span style="font-family: Cambria, serif;"><span style="font-size: large;">Mom</span></span></div>
<br />
Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com1tag:blogger.com,1999:blog-3453843441174230525.post-46764477616119740742013-01-22T13:32:00.001-08:002013-01-22T13:32:55.585-08:00A Tribute to God's Great Design for FamiliesThis blog post was written by our daughter Katie in honor of the 40th anniversary of Roe vs Wade. I hope it blesses you as much as it did us.<br />
<br />
Barbara<br />
<br />
<div style="text-align: center;">
Katie's post</div>
<br />
<br />
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">How do I
feel about my parents adopting, particularly in light of the 40<sup>th</sup>
anniversary of Roe vs. Wade?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">In the most
simplest of terms: It over joys me! It relentlessly paints a picture before my
eyes day after day that God delights in life of every kind. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Perusing
twitter this morning I continually came across the following question: “How
pro-life are you?” One simple look at my family and this question quickly seems
to be rhetorical – its answer staring one in the face as 13 children glance back
at you from the rows of my ethnically, culturally, and racially diverse
family. Not only did my parents choose
life for their own four children that God opened my mother’s womb for but they
chose life for nine other children, selflessly opening their homes, hearts, and
lives to care for children that our society deems ‘unwanted’ and ‘dispensable’.
<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-size: 12.0pt; line-height: 115%;">In 1
Corinthians 12 Paul tells us “On the contrary, the parts of the body that seem
to be weaker are indispensable, and on those parts of the body that we think
less honorable we bestow the greater honor…” </span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: 12.0pt; line-height: 115%;">That child with FASD: valuable to God! That
young girl struggling with bipolar: indispensable to God’s economy! The little boy in a wheel chair: he’s
bestowed with honor! Each and every one
of them is valuable, imaging our Creator. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Years ago,
before the likes of me, my parents saw these realities and delighted their
hearts in the reality that God is the giver of life. He alone gives life to
everything. They chose to honor God as Creator and build a family through both
natural birth and adoption. Through this
they declare day after day that life is valuable and that God is good. More importantly, it reminds me of a
life-giving reality – the reality that I too have been adopted into the most
glorious family. That I am a daughter of
all sovereign ruler of the universe and that he is my Father. I have been
adopted into the family of God and there my identity is rooted and my hope is
steadfast. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">So thank-you
Mom and Dad. </span><span style="font-size: 12pt; line-height: 115%;">Thank-you
for choosing life. </span><span style="font-size: 12pt; line-height: 115%;">Not only for
me but for all of your children.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">You
have imaged well for me what it means to value life and what it means to love
the Lord with all your heart, mind, soul, and strength. I see and know that it
isn’t always easy to choose life but God has been faithful to you through it
all.</span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">And today
seemed like a really good day to say that.
In light of those 50 million children who have not been given life in
the past 40 years, the reality that I (and my 12 siblings) have been given life
– delights me beyond words.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Praise God
for parents who understand the value of life!<o:p></o:p></span></div>
Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-59349484282892032562013-01-17T17:23:00.000-08:002013-01-17T17:23:34.085-08:00Praying for EvanPlease pray for Evan, his Mom and sisters. Evan has Junctional EB, a different form than AJ and also very serious. <br />
<br />
Here is a picture of him this morning. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiCxH38kMR6FbaVxbDI8aDA13dtSnD73OEeMM7dAJT-_Za-ymEwN42bwj_tGgqJ9UHPfjPKjim_v-_VGR9V54bL7-oF309m-yRdWiNUwHIBPYAalBvY3VH7_74wQNtfulMFmTIgBPHej5g/s1600/Evan+before+surgery.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiCxH38kMR6FbaVxbDI8aDA13dtSnD73OEeMM7dAJT-_Za-ymEwN42bwj_tGgqJ9UHPfjPKjim_v-_VGR9V54bL7-oF309m-yRdWiNUwHIBPYAalBvY3VH7_74wQNtfulMFmTIgBPHej5g/s400/Evan+before+surgery.jpg" width="400" /></a></div>
<br />
Evan had symptoms of an airway that was scarring shut from EB. He went into the hospital today to have it checked. Evan's Mom was struggling with the decision to do an elective tracheotomy. She shared with me yesterday that she was concerned about the loss of his speech if he had a trach. She shared that Even loves to sing and talk. If his upper airway closed and he had a tracheotomy he would have no way to get air over his vocal cords and he would lose the ability to speak or sing.<br />
<br />
I am so thankful that Evan is still here with his family. Before the doctors even got started into the procedure today, his airway closed completely and they did an emergency tracheotomy to save his life. His airway could have closed before they arrived at the hospital. Instead it happened in the operating room.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh7hcVFh9avfd_u-gjtFkA7kpssNvkoxTQwZNCnHHf_ESA77QdNrCwO4vqKN2RL4KJyPpgdJig0ynjIf8k8CV3CBiRvAnKciOixNrf9WWSPVDSPFDeO_d-5G8MKlH0VSoUX9x3q4K2qY4b/s1600/Evan+after+surgery.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh7hcVFh9avfd_u-gjtFkA7kpssNvkoxTQwZNCnHHf_ESA77QdNrCwO4vqKN2RL4KJyPpgdJig0ynjIf8k8CV3CBiRvAnKciOixNrf9WWSPVDSPFDeO_d-5G8MKlH0VSoUX9x3q4K2qY4b/s400/Evan+after+surgery.jpg" width="400" /></a></div>
<br />
Evan needs our prayers. Prayers to handle the many changes he will need to adjust to. I can't imagine waking up with the inability to speak; especially if you are only four years old. Pray for peace, healing and an that an alternative form of communication be found for him quickly.<br />
<br />
Thank you so much for following our blog and for praying for these little ones with EB.<br />
<br />
BarbaraBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-41630836142525401542013-01-07T16:11:00.000-08:002013-01-07T16:11:28.446-08:00Dad, Do you Pray Everyday?AJ: (In all seriousness) Dad, do you pray everyday?<br />
<br />
Dad: Yes, AJ.<br />
<br />
AJ: (adamantly) You should stop!<br />
<br />
Dad: (concerned) But I want to pray<br />
<br />
AJ: (Sad) If you pray you are going to get really small.<br />
<br />
Dad...confused<br />
<br />
Mom: (laughing) AJ did you learn the song about reading the bible everyday and you will grow, grow, grow?<br />
<br />
AJ: (adamant again) No Mom, if you read your bible and pray everyday you will shrink, shrink, shrink!<br />
<br />
Mom tells Dad the words of an old song<br />
(he must have learned it in church last Sunday):<br />
<br />
<div style="text-align: center;">
Read your Bible, pray everyday </div>
<div style="text-align: center;">
and you'll grow, grow, grow.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Don't read your Bible or pray everyday </div>
<div style="text-align: center;">
and you'll shrink, shrink, shrink,</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: left;">
I think AJ thought the song went:</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: center;">
Don't read your Bible, pray everyday</div>
<div style="text-align: center;">
or you'll shrink, shrink, shrink.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: left;">
I just love this kid!</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Barbara</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: left;">
<br /></div>
Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com1tag:blogger.com,1999:blog-3453843441174230525.post-369229139813699122013-01-06T19:30:00.002-08:002013-01-06T19:30:56.380-08:00A Riddle to start the New YearAJ shared a riddle with me today.<br />
<br />
Here is AJ's Riddle<br />
<br />
<div style="text-align: center;">
I have a little ball in my brain. </div>
<div style="text-align: center;">
It falls out of my brain into my mouth. </div>
<div style="text-align: center;">
When I eat something the little ball gets stuck.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
When I eat ice cream, </div>
<div style="text-align: center;">
the ball freezes and goes back into my brain.</div>
<div style="text-align: center;">
I like to eat ice cream; </div>
<div style="text-align: center;">
It makes the ball go back in my brain.</div>
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What is he talking about?</div>
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The answer to the riddle?</div>
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My guess?</div>
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A stricture in his esophagus. </div>
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Before he told me the riddle, he said that I need to call the doctor so that we could visit her and she can check him out. After he shared his riddle I told him that I think it is a stricture in his Esophagus. He did not want to hear my answer. He quickly said that the ball is gone and he is fine now. I asked him if he was afraid and if that is why the ball is gone. He said, "Yes, a little bit." I told him that they can look for the little ball by drinking some medicine while they take pictures. He wasn't too happy about that either. <br />
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I hope to go longer before we actually do another dilatation I am aware that he usually doesn't make it a year without one but I would like to go at least a year, if possible. If my memory is correct, it was last February that he went in. I know the doctor wants to do the dilatation without the test first. She feels since he will always need dilatations; why bother to put him through an extra test? I'm unsure about this plan because I don't want to put him through the procedure until it is absolutely necessary. Maybe, in time, I will become more confident as AJ continues to share his riddles.<br />
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Happy New Year!<br />
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Barbara <br />
<br />Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-79348393122134504262012-12-28T14:10:00.000-08:002012-12-28T14:10:33.960-08:00Happy Thanksgiving, Happy Birthday, Merry Christmas and (almost) Happy New YearGreetings,<br />
Wow am I behind. Here are some pictures to get you caught up.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQHwPO78CnBy9DYi_kaW5ehu01oOvkwCZAFB77QEHBhR0-Chq2TDFnlqRfhUZpZoCtgOkgkuAXpE4bn1o2WX3QwRJMRFVr81h15ybhM8rMy6wkazQsBcgOpK08qT8PUoiTjaZlqsOBKRlr/s1600/aaron+and+emily+thanksgiving+2012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQHwPO78CnBy9DYi_kaW5ehu01oOvkwCZAFB77QEHBhR0-Chq2TDFnlqRfhUZpZoCtgOkgkuAXpE4bn1o2WX3QwRJMRFVr81h15ybhM8rMy6wkazQsBcgOpK08qT8PUoiTjaZlqsOBKRlr/s400/aaron+and+emily+thanksgiving+2012.jpg" width="300" /></a></div>
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<span style="text-align: start;">At Thanksgiving we traveled to Colorado to visit</span></div>
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<span style="text-align: start;"> Aaron and Emily. We had a great time.</span></div>
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We have been busy with birthdays; </div>
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AJ turned 5</div>
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Kim turned 13 </div>
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Roman turned 15 </div>
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Julia turned 18 </div>
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Sahr turned 23 </div>
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and Joel turned 30</div>
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Have I forgotten anyone?</div>
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AJ celebrated his birthday and <a href="http://www.icingsmiles.org/" target="_blank">Icing Smiles</a> </div>
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generously made a Robot Cake for him. </div>
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A special thanks to them. </div>
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5 years old! Wow!</div>
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Kim on her birthday.</div>
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Andy and Katie home from college</div>
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Christmas was filled with a lot of activities, </div>
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crazy and quiet times with family.</div>
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Katie and AJ</div>
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Andy and Katie on the piano</div>
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Andy and AJ</div>
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Opening some gifts on Christmas Eve (the two girls look like something scary is going to jump out of the box!)</div>
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Esther</div>
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On Christmas Eve, AJ sprinkled </div>
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magic reindeer dust on the snow </div>
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so that Santa could find our house</div>
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<span style="text-align: start;">I will share one little story; on Christmas morning AJ looked very sad. It was time to open gifts and he didn't want to do it. We asked him what was wrong. He stated that Christmas was going to be over after he opened gifts and that Katie had told him that she would be going back to college after Christmas. He didn't want her to leave so he figured that if he didn't open gifts, Katie would stay. We had to explain to him that she was not leaving that day. </span><span style="text-align: start;">He could open his gifts and she would still spend the week with us.</span></div>
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Christmas morning</div>
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Andy shows AJ how to really get excited</div>
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Katie gives Andy "the look"</div>
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Kadi</div>
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Kim</div>
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AJ has loved his time playing in the snow with Katie. He was especially excited to find Spider Man boots that did not hurt his feet and that blinked lights with every step. </div>
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Aj has been fairly healthy. He had a few infections that needed treating with antibiotics but he has done well. He has had some issues with his heart and we are doing some extra testing to see if or what the problem might be. It seems to be something that comes and goes but Mayo has caught the problem twice now, so we will look a little harder to make sure he is doing Ok. He had a lot of tests in early December and he shows some difficulty with absorbing all of his nutrition (common with EB) but otherwise he has had an excellent year. We counted four hospitalizations this year. Not bad but hoping we can do better in 2013. <br />
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Thank you to all of those that checked in to see how we were doing. We are so thankful for all that God has provided for us. We have so many special people in our lives: family, friends, church family, medical and school community. Thank you for being a part of AJ's journey. We are especially thankful for the gift of Jesus and all that He means to us. Without Him, this journey would only be filled with pain.<br />
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BarbaraBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-89830493288856240312012-11-16T00:17:00.004-08:002012-11-16T00:31:07.922-08:00I'm Just a Scaredy Cat! But Jesus is My Superhero!<br />
I would like to share with you my thoughts and the meditations of my heart that originate from God's word. <br />
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God has a plan for those that are born with a disability and those that become disabled in this life. God's word tells me that God plans for and allows disabilities. <br />
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<span style="color: blue;">Exodus 4:11</span></div>
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<span style="color: blue;">Then the Lord said to him, "Who has made man's mouth? </span></div>
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<span style="color: blue;">Who makes him mute, or deaf, or seeing, or blind? </span></div>
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<span style="color: blue;">Is it not I, the Lord?</span></div>
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Disability brings intense suffering. It can be hard to understand how God can design something that brings such suffering. I do know that God has an understanding and mind that is not like ours. We are finite, he is infinite in his understanding. <br />
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<span style="color: blue;">Isaiah 55:8</span></div>
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<span style="color: blue;">"My thoughts are not like your thoughts. </span></div>
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<span style="color: blue;">And your ways are not like my ways," announces the Lord. </span> </div>
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Epidermolysis Bullosa is just one of many physical and mental conditions that results in intense suffering. Why would God do this? Why would he allow such suffering? We can get some insight from the following scriptures. <br />
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<span style="color: blue;">John 9:1-3</span></div>
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<span style="color: blue;">As Jesus went along, he saw a man who was blind. He had been blind since he was born. Jesus disciples asked him, "Rabbi, who sinned? Was this man born blind because he sinned? Or did his parents sin?" "It isn't because this man sinned," said Jesus. "It isn't because his parents sinned. This happened so that God's work </span></div>
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<span style="color: blue;">could be shown in his life." </span></div>
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How can this be? Isn't suffering the result of sin? Yes, Suffering is the result of sin! Without sin there would be no suffering. Jesus is not saying here that suffering is not the cause of sin. We live in a world that is filled with sin. When sin entered the world: suffering and death entered. </div>
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<span style="color: blue;">Romans 5:12</span></div>
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<span style="color: blue;">Therefore, just as sin entered the world through one man, and death through sin, </span></div>
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<span style="color: blue;">and in this way death came to all people, because all sinned.</span></div>
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In John 9:1-3, Jesus is saying that specific sins do not cause specific disabilities. There was no, one person, to blame for this man's blindness. Sin does cause disability (and death, as seen in Romans 5:12) but Jesus went on to answer even more than just the question of the root cause. He tells us the <u>purpose</u> of this man's blindness. He states, <span style="text-align: center;">"</span><span style="text-align: center;">This happened so that God's work could be shown in his life." </span></div>
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<span style="text-align: center;">How can this be accomplished? How can God's work be shown in the lives of those with disabilities. I believe in two ways. First in divine healing. I do believe that God can heal those that are sick and suffering. If we finish reading the remaining part of the story, told in the book of John, we will see how Jesus heals the blind man. </span></div>
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<span style="color: blue;">John 9:4-7</span></div>
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<span style="color: blue;">As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world." After saying this, he spit on the ground, made some mud with the saliva, and put it on the man's eyes. "Go," he told him, "wash in the Pool of Siloam." So the man went and washed, </span></div>
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<span style="color: blue;">and came home seeing. </span></div>
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Jesus divinely healed the man. He showed the greatness and power that only God holds. If you continue to read in John 9, you will see that the religious leaders did not want to acknowledge that Jesus healed the man. They tried to claim that he was never blind to begin with; that this was a different man. After the man's parents arrived and confirmed that this indeed was their son that was born blind, the religious leaders demanded to know how he was made to see. The man then correctly gives the glory to God. </div>
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<span style="color: blue;">John 9: 33 </span></div>
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<span style="color: blue;"> "If this man had not come from God, he could do nothing."</span></div>
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God divinely healed this man and I believe He still can heal today. While Jesus walked this earth, there are many accounts of his healing the sick. Often the Bible states that he healed ALL of them.</div>
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<span style="color: blue;">Matthew 4:24</span></div>
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<span style="color: blue;">News about him spread all over Syria. People brought to him all who were ill with different kinds of sicknesses. Some were suffering great pain. Others were controlled by demons. Some were shaking wildly. Others couldn't move at all. And Jesus healed all of them. </span></div>
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I will admit that we don't see these types of healing anymore. Something bigger than physical healing is soon to happen in Jesus ministry. He hints at it in the following verses. <span style="color: blue;"> </span></div>
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<span style="color: blue;">John 9:4-5</span></div>
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<span style="color: blue;">"While it is still day, we must do the work of the </span></div>
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<span style="color: blue;">One who sent me. </span></div>
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<span style="color: blue;">Night is coming. </span><span style="color: blue;">Then no one can work. </span></div>
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<span style="color: blue;">While I am in the world, I am the light of the world."</span><span style="color: blue;"> </span></div>
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We have seen Jesus's goodness in physical and mental healing but now He shows his goodness in an even greater way. You see after he healed those that were sick, Jesus took on the ultimate suffering through his death. Not only did he die a physical death on a cross, but he took upon him, the sins of the world and all of the suffering that came with that sin. </div>
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<span style="color: blue;">2 Corinthians 5:21</span></div>
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<span style="color: blue;">Christ didn't have any sin. </span></div>
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<span style="color: blue;">But God made him become sin for us. </span></div>
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<span style="color: blue;">So we can be made right with God </span></div>
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<span style="color: blue;">because of what Christ has done for us.</span> </div>
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Don't miss this. This is so important. Christ did this for us so that we can be made right with God. We no longer have to be ashamed or guilt ridden. Christ paid the price for our sin. He did it with his own life. Our sinless God, became sin so that we would not have to suffer! What? Suffering has not ended! You are correct. Suffering has not ended but it will...</div>
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<span style="color: blue;">Revelation 21:4</span></div>
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<span style="color: blue;">"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these thing are gone forever."</span></div>
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Remember, the purpose of suffering is to show how great our God is; his works, his awesomeness his power and his strength. We have seen how this was shown in divine healing but now, it can be shown in our lives regardless of the level of pain we are experiencing. One way is in our expression of our hope for the future:</div>
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<span style="color: blue;">Romans 8:23-25</span></div>
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<span style="color: blue;">We believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. We were given this hope when we were saved. (If we already have something, we don't need to hope for it. But if we look forward to something we don't yet have, we must wait patiently and confidently.)</span></div>
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There is another example of God's work shown in the lives of the disabled and suffering. It is when the physical and emotional pain of the disability strengthens to the point of consuming us, but we are not consumed. How? Even in the most horrific pain, Christ is there and he provides the strength and ability to endure the pain. </div>
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<span style="color: blue;">2 Corinthisans 12:9 </span></div>
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<span style="color: blue;">My grace is sufficient for you, </span><br />
<span style="color: blue;">for my power is made perfect in weakness. </span></div>
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God may not show his power by healing but he does provide the ability for us to endure and to walk through the pain. His power is what is made known when we are weak. His works are made known in our suffering. </div>
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To quote AJ, "I am just a Scaredy Cat but Jesus is my Superhero." His statement may seem insignificant in the face of your pain today but for AJ it's a child like faith where he finds God's strength in his weakness. </div>
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Thanks for listening and may God give you the eyes to see his works that you may accept his death and suffering, finding His strength in your pain today.<br />
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<span style="color: blue;">2 Corinthians 4:17-18</span></div>
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<span style="color: blue;">For our present troubles are small and won't last very long. Yest they produce for us a glory that vastly outweighs them and will last forever! So we don't look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever. </span></div>
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Barbara</div>
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Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com5tag:blogger.com,1999:blog-3453843441174230525.post-59374221080815959842012-10-27T07:46:00.001-07:002012-10-27T07:46:40.934-07:00HomeWe are home! AJ was discharged late Thursday. He had a hard time adjusting at first but is now pretty happy to be back in his own space. Thanks to those that brought him surprises. He was especially excited to see his siblings, Katie and Andy, as they drove down from the cities for a visit.<br />
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Last night he started talking more. He doesn't want to open his mouth often because he lost the skin off of his lips during the procedure. They keep trying to heal shut so we put lots of Vaseline on them. I know they hurt when he pulls them apart but he has to keep doing it. He brought me his pain scale picture and showed me that his pain level had come down significantly. He had a big smile on his face. We are still giving pain medication every four hours and he is on an antibiotic.<br />
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I am so thankful that he is this far past the actual surgery. Please keep praying that his oral tissues heal without any strictures. We won't know for a while if he will have any problems with this. He has started to eat a few things that are very soft and in very small amounts. This is a time to be especially thankful for his gtube as it allows us to keep him well fed and hydrated. He can get all of his pain medication without having to force him to swallow anything. <br />
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Thanks again. Your support is so appreciated. <br />
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<span style="color: blue;">We give thanks to God always for all of you, constantly mentioning you in our prayers, remembering before our God and Father you work of faith and labor of love and steadfastness of hope in our Lord Jesus Christ.</span></div>
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<span style="color: blue;">I Thessalonians 1:2,3 (ESV)</span></div>
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Barbara and AJ</div>
<br />Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-20017565768978996812012-10-25T07:29:00.000-07:002012-10-25T07:29:59.488-07:00Star War LegosThe weather is dreary and I read in the news that it may change to snow and 20 degree wind chills. Ugh. What a nice morning it is; inside that is. AJ is talking and feeling better. We even got a smile. <br />
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Last evening Scott came to visit and AJ showed him a little card that said he wanted to play. (Prior to surgery, we had made up cards with pictures so that he could tell us what he needed/wanted) Problem was we could not figure out what he wanted to play with. We guessed and guessed until it looked like a game of charades. Finally, out of exasperation, AJ spoke. I did not expect this on his day of surgery. We had a terrible time making it out and he had to repeat it multiple times. "Star War Legos, he blurted out!" We did not expect that request and we didn't have any for him. I had forgotten that the last time he was in the hospital Scott had surprised him with a small little star wars lego set. Apparently he had not forgotten and was expecting it again. The hospital searched for legos and eventually found some but no star wars lego people. Oh well, it was so good to hear him talk. <br />
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AJ's bleeding has completely stopped and the resident doctor thinks we will go home today. We need his ENT to see him before we can actually leave and that usually means much later in the day. We are happy for the good news. His doctor said we will not know, for up to three months, if he avoids the more serious complication of nasopharyngeal stenosis (I'm not even going to bother to explain unless it becomes something we later deal with). We will take it a day at a time and keep trusting God for the grace he provides new each day.<br />
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Thanks so much for praying for AJ and a special thanks to all those that offered to help with the important details of our other family members. <br />
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It is a good day!<br />
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<span style="color: blue;">Sing and make music from your heart to the Lord, always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.</span></div>
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<span style="color: blue;">Ephesians 5-19-20</span></div>
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Barbara and AJ</div>
<br />Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-51775956993570173002012-10-24T09:46:00.000-07:002012-10-24T09:46:06.991-07:00Out of surgeryAJ is out of surgery. His airway looked good in the scope. He did have some extra bleeding but she said he had a lot of blood blisters in his mouth and throat before starting the procedure. We are in the PICU and they will watch to make sure he does not have an airway problem. He is miserable. I just want the next 48 hours to fly by.<br />
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Thanks for your prayers.<br />
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BarbaraBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com1tag:blogger.com,1999:blog-3453843441174230525.post-74209488155590930222012-10-24T07:13:00.001-07:002012-10-24T07:13:14.384-07:00In SurgeryAJ is in surgery now. I am very much at peace about this. They have finished the bronchoscopy where they check his airway for EB damage and they are starting the tonsils and adenoids.<br />
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BarbaraBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-4364773651070096082012-10-17T12:33:00.000-07:002012-10-17T12:33:00.381-07:00Surgery Next WeekHello Everyone,<br />
Sorry for the absence but we have just been enjoying each day with AJ healthy. It has been a good month with many fun days. AJ has been free from infection, his gtube site looks great and he is happy. His feet are pretty sore and he has resorted to wearing large socks instead of shoes but if that makes him comfortable we are fine with it.<br />
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Today we met with the ENT doctor. We love her. She takes such good care of AJ and she has experience with kids with EB. After talking with her we have decided to have AJ's tonsils removed. They are very large and are causing sleep apnea. Having a small airway to begin with, the tonsils only make breathing more difficult. He has had strep throat and infections that have attacked his skin and caused permanent wounds. We would likely prevent this from happening again. Having this surgery now will be easier on him than waiting until he is older. <br />
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Ok, now you hear what I keep telling myself as to why we have made this decision. I know we need to do this but I don't want to put AJ through it. It's very hard and I am dragging myself to this point. I am praying for a smooth procedure but his doctor has clearly laid out the risks. Because AJ's body scars so easily and openings want to close (think esophagus, airway, intestines, urethra etc) his throat closing shut is a major risk. His ENT said it is the worst problem that could be faced. When there are raw areas the tendency is for them to adhere together. She said it would be three months post surgery before we will be assured that the risk has passed. If the area should scar together, AJ would require a tracheotomy. That is hard. We have been to that point before and AJ pulled through. I don't like that looming over us again. I know I can handle the cares for a trach but I know how hard it would be on AJ's tender heart and emotions. So...we will lay it at God's feet where it belongs. <br />
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As a secondary procedure she may take AJ's adenoids out but she will determine the risk of doing so once she has removed the tonsils. She will also do an endoscopy of his airway to determine any damage due to his EB.<br />
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Next Wednesday, October 24th is the surgery date. He will stay in the pediatric intensive care unit after the procedure. I don't know how long he will be in the hospital. I am hoping for no more than three days but I know to be prepared for more. We so covet your prayers. I know God is present and working in AJ's life. I can trust God with his plans for AJ. <br />
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On a different note, I am struggling with where to have my other children stay while I am gone. I have three "almost" teen girls that I home school and I need to find a place for them to go or someone to come to my home. Please pray that it will all work out without too much of an ordeal.<br />
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Thank you again for reading our blog and for caring so much for AJ.<br />
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BarbaraBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com1tag:blogger.com,1999:blog-3453843441174230525.post-61589269585440269132012-09-16T17:35:00.001-07:002012-09-16T17:35:23.221-07:00Aliens or AngelsWe are home. AJ is happy but tired. <br />
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Today at the hospital, the operating rooms were super busy as they had a large number of serious trauma patients. AJ's doctor finally decided to use a procedure room in the pediatric intensive care unit. They would not be able to use gas to put him to sleep but instead would use conscious sedation. The medication would take care of the pain, cause AJ to be very relaxed and would also leave him with no memory of the event as it causes amnesia. They took him in and tried to get an IV and were unsuccessful. Then they used a medication to relax him and followed up with two injections to really knock him out. The doctor said it may cause hallucinations. We waited...waited and AJ just kept looking at us. So they doubled all of the meds. Then AJ began staring at me with huge eyes and kept repeating over and over, "Mama? Mama? He must have said my name a hundred times. When they did the procedure to open his stoma he screamed in terrible pain and shouted at the doctors to leave him alone and that he wanted to go home. Poor guy. When it was over he continued to look at me, repeating, "Mama? Mama? Then he fell asleep.<br />
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I was so thankful that he would not remember it. When he woke up he asked where we were and why. I told him that he had to have his g-tube replaced and that we were in the hospital. He was good with that and was even more excited when he heard we were going home.<br />
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On the way home AJ asked where I was when he told the doctors to leave him alone and that he wanted to go home. (Clearly he remembered some of this) I told him I stayed with him the entire time. He said, "No, I didn't see you but I saw an alien and it had five eyes and two mouths" He said he watched the doctors working on his tube and it hurt really bad. The Alien stayed the whole time watching him. AJ thought that was pretty cool because the Alien looked like me. He had an alien for a Mom!<br />
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Now you have to realize that some kids see angels when they are sick. Maybe they are real sometimes and maybe other times they are hallucinations. AJ loves aliens. An angel would not have been a big deal. So...God is good all the time...either he made me into an Alien creature just long enough to get AJ through his procedure or he provided some great medications so that AJ could have a great hallucination. Either way; AJ loved it. All is good.<br />
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BarbaraBarbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-35316893171614145232012-09-16T11:23:00.000-07:002012-09-16T11:23:01.353-07:00Peacefully SleepingAJ's tube is in place and he is sleeping so peacefully. It was not an easy procedure and it involved more than double the medication it normally took to sedate him. It will take him a while to sleep this off. They want us to stay another night but I am hoping we can go home.<br />
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<span style="text-align: start;"> He kept asking me, "Please Momma, I want to go home" Soon we will little man, soon we will!</span>
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<span style="text-align: start;">Thanks for praying,</span></div>
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<span style="text-align: start;">Barbara and AJ</span></div>
<br />Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0tag:blogger.com,1999:blog-3453843441174230525.post-36767914776998665802012-09-16T07:36:00.000-07:002012-09-16T07:36:21.194-07:00In the hospitalSorry for the long delay. We have been very busy in fun ways but right now AJ is in the hospital. He was having a great time with his sister, Katie, when he fell and pulled out his G-tube. His tube is very difficult to replace and we could not get it in. We went to a local hospital in Minneapolis since we were not near our home. The doctors were unwilling to do anything and they made AJ wait four hours before agreeing to help put his tube back in. As expected and as I had warned them many times, his tube site had closed. We are back down at Mayo as he spent the night waiting to go to the OR this morning. Due to the lack of fluids he is constipated (also not a surprise) and is vomiting (happens with constipation). Hopefully he will get to the OR soon so that he can get his medication to get his intestines moving. Patience is the key. He is watching movies but not feeling well at all. Thanks for your prayers for AJ. Hopefully I can update soon with some good news. AJ is much happier to be back at Mayo and so am I!Barbarahttp://www.blogger.com/profile/02595321096076587681noreply@blogger.com0