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	<title>Nikkel's Notes</title>
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	<description>The life and times of the Nikkel family.</description>
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		<title>Nikkel's Notes</title>
		<link>http://nikkelsnotes.wordpress.com</link>
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			<item>
		<title>Surgeries?!!!</title>
		<link>http://nikkelsnotes.wordpress.com/2009/02/23/surgeries/</link>
		<comments>http://nikkelsnotes.wordpress.com/2009/02/23/surgeries/#comments</comments>
		<pubDate>Mon, 23 Feb 2009 16:34:34 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Medical]]></category>
		<category><![CDATA[everyday life]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=155</guid>
		<description><![CDATA[Ok I know I have not posted in a LOOOONG time.  Sorry.  Things get busy and I just had to take a break.  A lot has happened and we are still here and pluggin&#8217; along.
So Hannah has been sick, but not too terrible.  I was a little worried about her having three fevers in two [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=155&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>Ok I know I have not posted in a LOOOONG time.  Sorry.  Things get busy and I just had to take a break.  A lot has happened and we are still here and pluggin&#8217; along.</p>
<p>So Hannah has been sick, but not too terrible.  I was a little worried about her having three fevers in two months but the doc said she is in preschool.  Ok I can live with that, I think.  So Thursday I took her to the pediatrician and had her checked out.  She did not look too good, heart rate was very high, little fever.  He said looks ok, her ear is a little stuffy but should be ok.  Thursday night she is not doing great so after a little urging of my good friend Cindy, we put her on oxygen.  We had her on it through the night and she woke up a new kid!</p>
<p>So needless to say, both Todd and I are going to keep the oxygen for as long as we can have it.  It was amazing the change in her. I was so focused on getting rid of the oxygen I forgot how much of a help it can be for us.</p>
<p>Friday she looks good starts wearing down in the evening, then Sat. we celebrated Walker&#8217;s 7th birthday!  (I know I cannot believe it either.)  Hannah crashes.  She looks terrible and so we go into our doctor mode.  Start giving the meds we know and doing some nebs.  Sunday comes and she looks worse.  I keep thinking we are heading to the emergency room.  We have one more drug in our pocket but I did not want to use it.  I told Todd if she has an ear infection the drug would do no good.  So he made the call to go to Urgent Care.</p>
<p>I sometimes laugh when we have to go to these places because I assume that everybody knows what I am talking about when we are giving the rundown on Hannah.  Everytime we have an emergency like this Todd and I are usually there together, so we both get to share in the insanity! <img src='http://s.wordpress.com/wp-includes/images/smilies/icon_smile.gif' alt=':)' class='wp-smiley' />   We go throught the rundown with the nurse and she asks, &#8220;any surgeries?&#8221;  Todd answers her &#8220;surgeries?!!!&#8221;  I wish you could have heard his tone.  It took everything in me not to laugh out loud.  You could tell that he was thinking to himself, &#8221;you have got to be kidding lady!&#8221;   I was going to ask her if we could limit it to the last two years but then she cut in and said give me the big ones.  So we start doing that and it is obvious she has no clue what we are talking about.  I finally told her that I stopped counting after 20.</p>
<p>Needless to say Hannah has an ear infection which is good because if it was not an ear infection we would be in the hospital right now.  We have laughed about the nurses question a few times and said it is times like that when we realize our life is not the same as others.   However, Hannah&#8217;s surgery count is mild compared to some of our friends. </p>
<p>***editors note-Surgery is a general term for us.  Hannah has had about 8 major surgeries and lots and lots of minor surgerical procedures.  It is all the same in Mom&#8217;s eyes.  She is knocked out and I cannot be there.  It stinks! ***</p>
<p>Walker had his birthday and it was fun.  We had a little party at the house and had two dog bowl cakes.  One with food and one with water.  It was easy on Mom to make.  Walker had a great time and he has some neat little buddies!  Very fun!</p>
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		<title>Just Believe</title>
		<link>http://nikkelsnotes.wordpress.com/2008/12/19/just-believe/</link>
		<comments>http://nikkelsnotes.wordpress.com/2008/12/19/just-believe/#comments</comments>
		<pubDate>Fri, 19 Dec 2008 20:15:53 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Hannah]]></category>
		<category><![CDATA[everyday life]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=149</guid>
		<description><![CDATA[Sorry I have not posted in awhile-  I have been busy, this time if year can you imagine?  First off kudos to my cousin Jason in CA.  He got his Masters degree in Business from Peperdine a few weeks ago.  He did this in two years, being married with a young son.  That is my [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=149&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>Sorry I have not posted in awhile-  I have been busy, this time if year can you imagine?  First off kudos to my cousin Jason in CA.  He got his Masters degree in Business from Peperdine a few weeks ago.  He did this in two years, being married with a young son.  That is my cousin!  You are so <em>MATURE!  </em>(Little family joke)  No Seriously, Jason, well done!  You have made the whole family proud!</p>
<p>Christmas is very much alive at our house.  Hannah is so into it this year.  It is fun to drive with her at night because she sees the lights and just say &#8220;oooooooo&#8221;  It is so cute.  She even commented about a Santa.  He is not the real Santa, mom.&#8221;  &#8221; oh really?&#8221;  &#8220;He may help Santa but he <em>is not </em>Santa!&#8221;   Glad to know she knows who the real Santa is.  Thankfully both kids have been pretty easy to please this year.  All Walker wants is a skateboard.  How fun is that!  Can&#8217;t wait to see his face.</p>
<p>We  continue to struggle with Hannah&#8217;s  eating.  After a huge mess with scheduling a test, we finally had it on Monday.  I reluctantly agreed to the test, just so I could say we did the test and it did not work.  And as I said we did not get the results we needed.  They wanted Hannah to eat barium coated food and see where the food is getting stuck in her esophagus.  Well so many things had to be perfect.  We needed her to <em>eat </em>barium coated food and then for it to get stuck while they are taking the x-ray.  Needless to say Hannah can only eat so much barium coated food.  Do you know what it is like to stand there with your child who is in total misery, praying that food gets stuck so they can get what they need?  I do and it is not fun.  Sometimes I don&#8217;t know who gets more upset, me or Hannah.  My friend Tracy was with us and that helped.  She helped me be calm and keep a peace in the room.  We have not had the best luck with radiology this year so that was a blessing.</p>
<p>We get home and that day Hannah is throwing up because food is stuck.  I just want this to all stop.  I was so frustrated and was crying in bed.  Both Todd and I are fried.  We do not know what to do.  How much do we put her through?  If we go out of state they may want to repeat these tests and do the one that Children&#8217;s can&#8217;t do.  Are we ready for that?  Will we get the results we need?  Will we get the answer we want?  Our GI doc is preparing us that we most likely will not get an answer.  Do you know how frustrating this is!  So I said Lord I need some encouragement.  Where in the Bible is there a parent who has a sick child.  Jairus came to mind-</p>
<p>Here is a man who has a 12 year old daughter who is sick.  He asks Jesus to come and touch his daughter so she can be healed.  They leave to go to his house and in the middle of this account we have the woman who has bled for 12 years touch Jesus&#8217; robe.  He stops and asks who touched me.  She is healed from he bleeding and then the little girl is healed.  Ok short run down of the story, go look it up in Mark 5:21-43, Matthew 9:18-26, or Luke 8:40 -56.</p>
<p>Couple things here-  I can relate to Jairus.  I do not think he came up to Jesus and said my child is sick please heal her.  I think there was some serious pleading here.  I bet the Jairus had tried all he could and traveled to Jesus because this was the only thing he knew left to do.  I know right now I have been pleading with anyone who will listen to me.  I have a feeling Jairus pushed his way through the crowd and totally interupted what Jesus was doing or talking and began pleading through his tears. </p>
<p>Now why is there the story of the lady in the middle of this-  I wonder.  Then in hit me -she bled for 12 years, Jairus daughter is 12 years old.  Why did Jesus stop and acknowledge her?  She did not need that, she believed that all she had to do was touch His robe.  I think this is all for Jairus&#8217; sake.  Here right before his eyes he sees a woman who has bled for 12 years, who has probably done all that she could do, seen all she could see, be healed just by touching Jesus&#8217; robe.  The woman believed but the Lord acknowledged her faith.</p>
<p>When they get to Jairus house he is told his daughter is dead.  Jesus tells Jairus &#8220;don&#8217;t be afraid, just believe.&#8221;    Then Jesus tells the girl to wake up.  Get her some food she is hungry.  Just believe.  Just believe.  Seems so simple doesn&#8217;t it.  We can say, of course he should just believe  Jesus will heal her.  I ask you what should I believe?  Is Jesus going to heal Hannah the way I want? Should I believe that we will get an answer to this whole problem?  Or do I just believe that Jesus will handle it?  Sometimes the simple stuff can be so complicated.  Just believe. </p>
<p>I believe that God will handle this.  I am very tired right now and God knows that.  He knows that both Todd and I are driven close to tears when we eat lunch or dinner with Hannah and she is in pain from eating.  He knows that we are stressed out and want the best for Hannah.  I just want to know what to believe.  It is enough that I believe he will handle it?  I will be honest, I want more.  I want to know <em>how </em>He will handle this.  But even Jairus didn&#8217;t get to know how.  Just believe.  I feel that sometimes I can hear Him whispering in my ear &#8220;just believe&#8221;.  Then I scream back, in what? </p>
<p>So this is my struggle right now.  God has provided abundantly and yet like the Isrearlites I can be quick to complain.  Sometimes it is very difficult for me to nestle into the shadow of His wings.  Since I am making phone calls and talking to doctors and scheduling appointments, cleaning up puke, I forget that ultimately He is in control.  Maybe that is what I am to believe.  That He is in control.  That I can do.  The rest will all fall into place when it should.</p>
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		<title>Here&#8217;s the update</title>
		<link>http://nikkelsnotes.wordpress.com/2008/12/03/heres-the-update/</link>
		<comments>http://nikkelsnotes.wordpress.com/2008/12/03/heres-the-update/#comments</comments>
		<pubDate>Wed, 03 Dec 2008 19:03:54 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Funny]]></category>
		<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[everyday life]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=145</guid>
		<description><![CDATA[Sorry I have not posted in awhile.  Where to start-  I guess the critter.
Yes we caught the critter.  If the word EWWW is not in the dictionary, it is now.  Todd and I had a nice weekend to spend to ourselves.  We attended a Focus on the Family conference on Sat. Nov. 22,  Grandma and [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=145&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>Sorry I have not posted in awhile.  Where to start-  I guess the critter.</p>
<p>Yes we caught the critter.  If the word EWWW is not in the dictionary, it is now.  Todd and I had a nice weekend to spend to ourselves.  We attended a Focus on the Family conference on Sat. Nov. 22,  Grandma and Grandpa Nikkel took the kids for the night.  We were home and talking over our day, about the conference and then our nice dinner at the Cheesecake Factory.  We heard Rocky howling and so I looked for him outside.  Can&#8217;t find him so Todd checks out in front in the off chance he got out there.  Can&#8217;t find him, then Todd sees him at the base of the stairs.  Oh, Rocky must have smelled the critter and is trying to find it.  (Keep in mind the rat trap has been set for a week with not even a nibble.)  Todd and I are talking in the kitchen and Blueberry walks up and I hear a plop.  I see her walk out of the kitchen and sit in the hallway.  Then Todd calmly says, &#8220;oh my&#8221;  I look down and there on the floor is a dead RAT!  EWWWWWWW!!!!!!!!!  I was so disgusted and all I could say is EWWWWW for two hours.  Todd took the dead rat out to the ravine and it is gone.  Here is where it gets really disgusting.  The rat was caught in the trap and we think the dogs got the rat out.  The rat had been licked by the dogs- EWWWWWWWWWW!  So I went to Kmart and bought every kind of breath mint for dogs I could find!  Sunday morning at church Blueberry ate a whole bag of treats.  No joke- her breath was minty fresh for the day! </p>
<p>I think God gives us these moments to keep us laughing, uh&#8230;&#8230;.I think.  We are still plugging away at the daily Nikkel life.  Narrowing our choices for Walker&#8217;s school next year and working on getting Hannah to Cincinnati.  Life gets so complicated sometimes but it makes me appreciate the finer moments in life.  For instance,  Hannah telling me that she has everything we need to go shopping in her purse.  I asked her if she had money and she laughed and said no Mom, I just have toys.  Or Walker telling me to call Daddy and in a high voice says &#8220;Hi Honey, Walker&#8217;s being such a great kid today!&#8221;  You just gotta love our kids!</p>
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		<title>Time to move on-</title>
		<link>http://nikkelsnotes.wordpress.com/2008/11/17/time-to-move-on/</link>
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		<pubDate>Mon, 17 Nov 2008 17:06:00 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[everyday life]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=136</guid>
		<description><![CDATA[Well we spent last week fighting for Walker&#8217;s school.  It was quite emotional.  I never thought I would see the day when I am on a first name basis with the president of the school board but that day has come.  I have to say, he returned my calls and listened to me.  It did [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=136&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>Well we spent last week fighting for Walker&#8217;s school.  It was quite emotional.  I never thought I would see the day when I am on a first name basis with the president of the school board but that day has come.  I have to say, he returned my calls and listened to me.  It did not change anything but I had to do what I could.  I went to the meeting on Thursday night and was there until 12:30.  Long night.  What saddened me most was when it was all said and done,how the other parents reacted.  I had heard that school politics are bad but I had no idea.  I was truly surprised at the uproar that happened and the language that was being used.  Trust me, if I ever had any thoughts of being on the school board they are gone now.  I wanted to get up and say, you wouldn&#8217;t allow your children to behave this way so why are you?  But no one would have heard me it was so loud. </p>
<p>So now I have a new job.  I have to find a school for Walker.  He wants to go to a school where he knows some of the kids and he wants a teeter-totter.  I told him I can guarantee that he will know some kids and I will petition the PTO if they don&#8217;t have a teeter-totter.  It is the important things in life.   </p>
<p>It is quite sad and now our fantastic teachers have to finish the year with this downer.  They will rise above and do all that they can for the kids while they are seeking a new job for next year.  The district has to find spots for our teachers because they are tenured.  I laugh because any teacher in Littleton who has been here less then three years will probably lose their job.  So as I have been touring new schools and hear about their fabulous first year music teacher, I think to myself, well they will be gone.   I am ready for this to be settled and it will all work out.  Walker will have some struggles but we will work together as a family and get through this with flying colors!</p>
<p>Todd and I are now pursuing Cincinnati for Hannah.  I have been waiting a month for a doc at Children&#8217;s to check out Hannah&#8217;s chart and I am done waiting.  I have been waiting for a little over a week to find out about Hannah&#8217;s &#8220;special test&#8221; and I am done waiting.  We are going to seek a referral to Dr. Cotton and  see if we can get some answers.  Our GI doc wanted us to wait until her symptoms got worse and here we are.  She is uncomfortable everyday, she may not throw up but she is in pain.  I have had it!  So now we need some creative people to help us raise money.  We will need a lot.  We should be able to get into the Ronald McDonald house but no guarantees.  I have a lead on a free flights but we will see.  Our insurance will cover Hannah there and I am going to see if medicaid will cover the rest.  So hopefully it won&#8217;t be too bad but I am not holding my breath.</p>
<p>Todd celebrated his 40 birthday this weekend.  I think the highlight was the &#8220;peenyota&#8221; (pinata) The kids were so excited about this and would tell Todd,&#8221;we have a surprise.  I can&#8217;t tell you but you are going to hit a bird in a tree.&#8221;  Or other lines like this.  Todd being the great dad that he is, would look confused and was so surprised to see the peenyota!  I spilled the beans earlier because I thought the critter was getting into the candy.  (Still no idea on what the critter is.  We have a rat trap set and nothing yet)  Our friends Jack and Irene dropped by earlier to make sure there were appropriate decorations and gifts for Todd.  I had to promise not to do anything.  Greg and Melanie had some black balloons and silly gifts but nothing beats the cows!  (It is something you have to see to appreciate!)  You never know where the cows might show up!</p>
<p>Well I think that is about it!  We got our medicaid appeal reversed but I think I have said that.  I still cannot thank Julie Reiskin, with the Colorado Cross Disability Coalition, enough for taking care of that.   She is a true hero for many of us!  I will get some pictures up soon.  Hannah and the puppy, all of us at our fall festival at church, Todd and I won the costume contest, Walker in his play.  Yep they will be up soon!</p>
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		<title>The Return of the Mysterious Critter</title>
		<link>http://nikkelsnotes.wordpress.com/2008/11/10/the-return-of-the-mysterious-critter/</link>
		<comments>http://nikkelsnotes.wordpress.com/2008/11/10/the-return-of-the-mysterious-critter/#comments</comments>
		<pubDate>Mon, 10 Nov 2008 21:00:00 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Funny]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=133</guid>
		<description><![CDATA[So last year we had an uninvited guest.  Now this guest literally dug himself into our house and made himself comfortable.  He had a nice entrance to the house via under our front porch.  I actually thought that I could stop him by putting a brick over his hole.  All he did was dig around [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=133&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>So last year we had an uninvited guest.  Now this guest literally dug himself into our house and made himself comfortable.  He had a nice entrance to the house via under our front porch.  I actually thought that I could stop him by putting a brick over his hole.  All he did was dig around the brick.  I know, I was not thinking well that day.  The best part of his visit is that he decided to die and stink up the house. </p>
<p>Todd spent hours trying to find this critter.  He cleaned out from under the stairs and we let our beagle, Rocky, try and sniff the critter out.  We found nothing.  The smell lasted for weeks and we were releived when the smell finally dissipated. </p>
<p>So thinking that all is well Todd fills in the hole again.  We has done this numerous times while our guest was here and the critter always dug a new one.  Todd was so disgusted when he saw that his job filling in the hole was not appreciated by our &#8220;new&#8221; guest.  So now Walker, Hannah and Todd are on the hunt.  The animal drives Rocky crazy; to the point where Rocky will get up in the middle of the night to scratch at the door under the stairs.  The hunting party set mouse traps in various spots.  &#8211; keep that thought-</p>
<p>What is interesting here is that we are confident it is not a mouse.  What does that leave us?  We feel this way because the hole is pretty good size.  Bigger then a mouse would need.  We really have no idea what it is-</p>
<p>Now back to our story.  So the cheese was eaten off our traps and one was moved to a different spot.  When Todd was resetting the traps he shows me the one that had sprung.  It was bent!  Where a dear mouse would have been there was a nice rainbow curve.  All we know it that this critter is bigger then a mouse and we need some rat traps.  EEWWWWW!!!!!!!!!!!!!!!!!!!!!!</p>
<p>I think God does this to give us perspective.  We have been so stressed out but our mystery guest has provided us some free entertainment and laughs!   Maybe someday I will blog about the raccoons.  Todd doesn&#8217;t think that story is as funny as I do!</p>
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		<title>What a week!</title>
		<link>http://nikkelsnotes.wordpress.com/2008/11/10/what-a-week/</link>
		<comments>http://nikkelsnotes.wordpress.com/2008/11/10/what-a-week/#comments</comments>
		<pubDate>Mon, 10 Nov 2008 01:18:02 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=129</guid>
		<description><![CDATA[This has been quite a week for us.  The election was not the turn out I was hoping for.  Outside of McCain not winning, I was more upset about Amendment 51 not passing.  That felt like a slap in the face.  Truly it did.  What it told me is that unless you live in the [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=129&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>This has been quite a week for us.  The election was not the turn out I was hoping for.  Outside of McCain not winning, I was more upset about Amendment 51 not passing.  That felt like a slap in the face.  Truly it did.  What it told me is that unless you live in the world of disability, or know someone really well who deals with it, you never really get it.</p>
<p>I spent part of my week going back and forth with the director of the Swallow Clinic at Children&#8217;s.  They are having to create a &#8220;special&#8221; test just for Hannah.  She made it sound like I should be so grateful for this and I am being a pain about the whole thing.  I could care less if it is special just for Hannah, do what you have to do.  Isn&#8217;t the job of the hospital to provide the best care for my child.  If you do not know I have some big issues with the radiology department at Children&#8217;s.  They have  not done their job well when it comes to Hannah and they have been quite patronizing to me.  So when the director of the Swallow Clinic told me I need to be more proactive during her tests I replied, &#8220;So what do I need to do?  Take for instance her last test, I kept telling them I thought they were doing the test wrong and they kept telling me that they knew what they were doing.  I asked them four times if they were doing what the doctor had ordered and they said Mrs. Nikkel let us do our job.  Well, the test was not done the way the doctor wanted it.  They got some results they needed but not all.&#8221;  To this the swallow clinic director told me &#8220;oh, I will try and get the right people to work with you.&#8221;  She didn&#8217;t like  dealing with our doc.  I smiled at this and thought &#8220;Way to go Dr. Hoffenberg.  His patients mean more to him then hospital policy!&#8221;  I really like Dr Hoffenberg. </p>
<p>So then we find out that Littleton Public Schools is going to close Walker&#8217;s school.  This is so disheartening!  Walker has done so well at his school and really likes it.  Todd and I have been fighting this the last two months or so and now we are angry.  We are still pulling out the stops.  I don&#8217;t know if we will have any luck but I have to try.  I have called the news and am going to try and get in touch with some advocates and see what we can do.  It is not over yet.  I have even got a call from the School Board President.  So I will continue to dialogue with him and then work hard to get him off the school board.</p>
<p>Saturday our good friend Cindy came over with her son Micah and yes, the puppy Bousah.  Not sure how to spell the dogs name but I think I am close.  This was to reward Hannah for doing a great job with her sleep study.  That was fun!  All the kids played and it was a good break for all of us.  I think the puppy was a bit wiped out but hey, he&#8217;s a puppy.  Hannah was very upset when they left.  She really likes that puppy.  He is just her size!  We all needed a break and it was good just to sit and talk. </p>
<p>So what&#8217;s up for this week.  I am hoping to hear something from Cincinnati Children&#8217;s.  I am moving forward with that.   I feel that Hannah is now compensating and is learning to deal with her issues.  I am afraid that she might thing this is how it is when people eat and I want her to enjoy food the way I do.  Love the taste and then let the body do the rest.  I have looked into free flights, insurance and the Ronald McDonald house.  Who know what we will qualify for.   Also I have a medicaid denial hearing.  Oh joy, I am hoping my advocate will pull this off without us having to appear before a judge.  We will see how that goes.  Then of course the ending of the LPS school closing.   Enough said on that.  The highlight of the week is Walker&#8217;s play performance!  That will be fun.  He has his line down and I am sure he will steal the show!</p>
<p>There you have it.  Just another week in the Nikkel house.  This is how it goes.  Oh I forgot to say that we should get Hannah&#8217;s sleep study results back and I am still waiting to hear back from a surgeon at Children&#8217;s.  Yep, it&#8217;s never ending.</p>
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		<title>Sleep study</title>
		<link>http://nikkelsnotes.wordpress.com/2008/10/30/sleep-study/</link>
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		<pubDate>Thu, 30 Oct 2008 18:37:56 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=125</guid>
		<description><![CDATA[So the sleep study went well.  The worse part was putting on the nasal cannula for oxygen.  No surprise for Todd and I.  The technician said overall she thought it looked pretty normal.  It will take a good week to get all the results.  They monitor so many different things.  She did not need oxygen [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=125&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>So the sleep study went well.  The worse part was putting on the nasal cannula for oxygen.  No surprise for Todd and I.  The technician said overall she thought it looked pretty normal.  It will take a good week to get all the results.  They monitor so many different things.  She did not need oxygen during the night and that is a good thing!</p>
<p>So now the worse part is the sticky pads the probes go on.  Hannah hates having these taken off so she will keep them on for days.  Seriously.  I gave her a good bath because she had gunk in her hair and I was able to get two off but she was not happy.  I think she has three more on and they will be on for awhile.  I don&#8217;t blame her, it does hurt when you pull them off. </p>
<p>So one more test down, and hopefully not many more to go.  This test was primarily to see how hard she was working on breathing while she sleeps.  Hannah has not gained weight in over a year and is that because she is not eating enough, or because she is working too hard to breathe.  I know she eats well and even when she throws up it is not a lot of food.   We will see what the doctors say.  Even on this I get multiple opinions.  I am laughing because I know that this could cause some ruffled feathers soon among the docs.  They truly practice medicine and one guess is as good as another.</p>
<p>Todd and Hannah were home around 7:30.  We were all able to sit down and have pancakes for breakfast.  This was nice because Todd is out the door for work usually around 6:00.  So I enjoyed us all together and I know Walker did as well.  He needed us all together this morning to shown that his world is still together.   So now Hannah waits to see Micah&#8217;s puppy because that is her reward for doing so well. </p>
<p>Thanks</p>
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		<title>To go or not to go- That is the question</title>
		<link>http://nikkelsnotes.wordpress.com/2008/10/30/to-go-or-not-to-go-that-is-the-question/</link>
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		<pubDate>Thu, 30 Oct 2008 02:03:30 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Hannah]]></category>
		<category><![CDATA[Medical]]></category>

		<guid isPermaLink="false">http://nikkelsnotes.wordpress.com/?p=119</guid>
		<description><![CDATA[So Todd is at the hospital with Hannah right now.  (7:30 pm Wed. night)  Tonight Hannah has her sleep study.  Sounds simple right?  Not so much.  We were ok with the sleep study until we got the information about the sleep study.  They have this picture of a boy with all the probes on.  They [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=119&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>So Todd is at the hospital with Hannah right now.  (7:30 pm Wed. night)  Tonight Hannah has her sleep study.  Sounds simple right?  Not so much.  We were ok with the sleep study until we got the information <em>about </em>the sleep study.  They have this picture of a boy with all the probes on.  They couldn&#8217;t even get him to smile.  That&#8217;s when I freaked out.</p>
<p>I have spent the day talking to Hannah about this and our friend Cindy talked to her some on Sat.  When Cindy first started talking to Hannah she looked at us and said, &#8220;I am not going to the hospital.&#8221;  I think Hannah is going to be ok but it is going to be tedious.  I hope that they learn something from this. Walker is having a really hard time.  He doesn&#8217;t understand why she is going to the hospital because she is not sick.  Makes sense you know.  Thanks to Cindy, I am hopeful that they will find something.  It is truly amazing what a sleep study can reveal.  We will know a little bit tomorrow but more next week. </p>
<p>Some of you know that we have been dealing with some GI issues with Hannah for over a year.  The doctors have finally told us that this is rare.  They are not quite sure what is going on.  We know that the problem is in her esophagus but what is wrong is still up in the air.  We have eliminated many things and are looking high and low for answers. </p>
<p>I started searching the Internet and came across a clinic in Cincinnati that might be able to help us.  There is one more test that we can have done and Children&#8217;s here cannot do the test.  There are only 5 states that have this test available to children.  Cincinnati&#8217;s Childrens does this test.  Also at Cincinnati is Dr. Robin Cotton.  He is the best when it comes to airway issues.  He is the head of the Areodigestive clinic, the one we are interested in for Hannah.  It would be a great place for us and we might get some answers to some of the things that make our docs scratch their heads.</p>
<p>Children&#8217;s here in Denver has some of the greatest doctors.  Here is our struggle. One of our ENT&#8217;s trained with Dr. Cotton and I am confident with her and also Dr. Yoon.  Also we are having a surgeon who work at Cincinnati to look at Hannah&#8217;s case.  Our GI doc is great but he is even saying it might be time to look out of state.  There is no guarantee that Cincinnati can help us. </p>
<p>But after what we have been going through I don&#8217;t know.  Hannah has been throwing up again and it is getting worse.  She had a bad weekend and last night was terrible.  She was in so much pain.  I can handle the throwing up but the pain is so hard to take.  At one point our whole family was sitting in silence because, what do you say?  Hannah was sitting there in pain and there is NOTHING we can do.  It makes my heart break.  It makes me want to jump on a plane and go to Cincy.  I want it fixed and I want it fixed now. </p>
<p>So right now we are not packing out bags but you never know.  There is a lot that would have to happen first.  I am just tired of Hannah being poked and prodded.  I want her to feel well and enjoy eating.  I want Walker not to stress out about his sister.  Someday, it will happen, someday.</p>
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		<title>It&#8217;s all about networking!</title>
		<link>http://nikkelsnotes.wordpress.com/2008/10/26/its-all-about-networking/</link>
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		<pubDate>Sun, 26 Oct 2008 16:37:55 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[Medical]]></category>

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		<description><![CDATA[So I am staying home from church today because Hannah has a pretty big medical study on Wed. night and we need her well.  She was coughing on and off through the night so she is going to be in a bubble for the next few days.  As one of our doctors put it, you [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=115&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>So I am staying home from church today because Hannah has a pretty big medical study on Wed. night and we need her well.  She was coughing on and off through the night so she is going to be in a bubble for the next few days.  As one of our doctors put it, you are not taking her to the petri dish are you?  (petri dish meaning preschool)  Nope, she will be home.</p>
<p>We are hoping for something from this test.  It is a sleep study.  They will monitor her while she sleeps and hopefully find something that is going on.  My friend, Cindy, has done multiple of these with her son, Micah, and each time the study reveals something new for them.  I needed to hear that because once I saw how she was going to be hooked up and how many probes and all the good stuff I freaked out.  So Todd gets the privilege of taking her.</p>
<p>We found out that Medicaid is denying our pulse ox machine.  This machine tells us Hannah&#8217;s oxygen levels.  It is vital for us because Hannah does not turn blue.  When she is getting sick her O2 levels drop and we can take action quickly and usually keep her out of the hospital.  Without this we will be in the hospital, I guarantee it.  So my friend, Kelly, tells me to contact Julie, and we should get the denial overturned no problem.  So I contacted Julie and she tells me not to worry that we should have this resolved soon.</p>
<p>One thing I have learned going through all this with Hannah is you have to network.  If Cindy didn&#8217;t tell us about her success with the sleep study I may have canceled the study.  If Kelly didn&#8217;t tell us about Julie we may be stuck without a pulse ox.  I met Kelly because someone told me to call her and she will help us with medicaid.  I met Cindy because Kelly said we should know each other and Cindy is now very good friend.  I have met wonderful people along the way and it is through networking.  You cannot do this alone and there are people out there to help.  Sometimes it take a little work to get to the right one but it can be done. </p>
<p>I am always humbled by this because right when I feel like giving up, I will get a phone call or an email from someone saying &#8221;I will be happy to help you.&#8221;  This makes traveling this road less stressful and more bearable.  Besides that, some of my best friends were made along this road!</p>
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		<title>March of Dimes Chefs!</title>
		<link>http://nikkelsnotes.wordpress.com/2008/10/23/march-of-dimes-chefs/</link>
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		<pubDate>Thu, 23 Oct 2008 03:17:20 +0000</pubDate>
		<dc:creator>joellen3772</dc:creator>
				<category><![CDATA[March of Dimes]]></category>
		<category><![CDATA[Medical]]></category>

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		<description><![CDATA[Well we just had a fun evening!  As many of you know, or may not know, we are pretty involved with the March of Dimes.  After our struggle with Hannah we see the importance of the March of Dimes.  What a great day it will be when no baby is born too soon. 
So tonight they [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=nikkelsnotes.wordpress.com&blog=4843920&post=112&subd=nikkelsnotes&ref=&feed=1" />]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>Well we just had a fun evening!  As many of you know, or may not know, we are pretty involved with the March of Dimes.  After our struggle with Hannah we see the importance of the March of Dimes.  What a great day it will be when no baby is born too soon. </p>
<p>So tonight they had one of their big fundraisers and our kids were part of the action.  They have local chefs prepare samples and have a silent auction also.  There were chefs from Elways, Ruth Criss Steak House, right now I cannot remember any other because we don&#8217;t get to those places, but it was the fancy places in town.  Trust me it was delicious!  Some of the chefs even donated an evening where they would come in and make dinner for 8 for you.  Lots of neat stuff.  So Hannah and Walker were little chefs greeting people as they came in.  The event was at the Hyatt Regency downtown and Hannah was in the lobby and Walker at the escalator greeting and leading people to where they needed to go!  Very fun and Very cute.  They had little chefs outfits on.  So like a frantic mom I forgot the camera.  Luckily there was a professional photographer taking pictures so I should get those and can posts them.  Oh yeah- a photographer from Denver Magazine was there and the kids will be in the magazine!  FUN!  Did I tell you they looked really adorable!</p>
<p>I was able to share with some Moms at the NICU on Tuesday.  This is also with the March of Dimes. I love doing this.  I don&#8217;t think I did the best job on Tuesday but I think overall it went well.  I should have been more prepared.  It is interesting when you do this because I do not want to take away from their experience.  What we went through may not be the same as they are going through and I want to be sensitive to that.  I want them to have a chance to speak and me not dominate the floor.  One grandma asked if it was normal to have good days and bad days.  Let me tell you- life in the NICU is all good and bad days.  Listen to me when I say this, please, it is a roller-coaster.  Things change literally on a dime.   This is what is so draining having a baby born premature.  Hannah was fine and then in 20 minutes they were rushing to her bed to resuscitate her because she pulled the vent out.  WHEW!  Then the next day fine. </p>
<p>So these are reason why we support the March of Dimes.  We need research to prevent premature birth, we need more research to stop certain issues that only affect babies born too soon.  We need more&#8230;.</p>
<p>Get ready folks the March for Babies is in April and we want you!  Just a heads up!</p>
<p>But for us tonight was fun and the winners are the babies!</p>
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