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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 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’t find him so Todd checks out in front in the off chance he got out there. Can’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, “oh my” 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!
I think God gives us these moments to keep us laughing, uh…….I think. We are still plugging away at the daily Nikkel life. Narrowing our choices for Walker’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 “Hi Honey, Walker’s being such a great kid today!” You just gotta love our kids!
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.
I spent part of my week going back and forth with the director of the Swallow Clinic at Children’s. They are having to create a “special” 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’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’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, “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.” To this the swallow clinic director told me “oh, I will try and get the right people to work with you.” She didn’t like dealing with our doc. I smiled at this and thought “Way to go Dr. Hoffenberg. His patients mean more to him then hospital policy!” I really like Dr Hoffenberg.
So then we find out that Littleton Public Schools is going to close Walker’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’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.
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’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.
So what’s up for this week. I am hoping to hear something from Cincinnati Children’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’s play performance! That will be fun. He has his line down and I am sure he will steal the show!
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’s sleep study results back and I am still waiting to hear back from a surgeon at Children’s. Yep, it’s never ending.
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!
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’t blame her, it does hurt when you pull them off.
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.
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’s puppy because that is her reward for doing so well.
Thanks
Well our Denver Daisy finally is here in full force. (Picture soon to come) For those of you who may not know the story, here it is.
Denver thought it would be a great idea if during the democratic convention we have a “special flower” throughout the city. That way there would be flowers all over and bring the community together. CSU and the Denver Botanic Gardens bred or cultivated the Denver Daisy. I do not know how you come up with a new flower so if my terminology is wrong, forgive me. I went to a couple of events and they passed out the seeds and wanted as many people to grow these daisies. So on Mother’s Day we planted 2 packets of these seeds. We followed the directions and saw nothing.
We thought we did something wrong until Todd read an editorial from a Denver city councilman. He too had planted his seeds and followed the directions. He is a green thumb and he couldn’t get the flowers to grow. The problem is you have to really baby the seeds to get them to grow. We have laughed about this because you can see spots where businesses and others, we think, were trying to grow these flowers. So we stopped trying and thought our flowers won’t grow.
Then we saw it one day. A little sprout. Could it be, I think yes! We have a Denver Daisy! So we have been watching our one Denver Daisy grow very slowly. So please come back democrats because we have our Denver Daisy. We are republicans and we joined in the spirit of you coming and grew our flowers. Please come and see!
Come out! Come out Denver Daisy!
Here is today’s picture and yesterdays. I think we may have a Denver Daisy before the weekend is over!
As Todd and I drove home from the hospital I kept thinking about this verse. Psalm 139:13-14 “For You formed my inward parts; You covered me in my mother’s womb. I will praise You for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well.” Here we have seen the most beautiful airway and yet we still have some issues. Am I discouraged? No. I stand in awe at how we are created. Everything is suppose to work together. The body is an amazing thing and Todd and I have been privileged to see many things that most people do not even think twice about. Hannah still has airway issues but it is because parts of her left vocal fold are not working right. But get this- the left vocal fold use to be paralyzed and now it is not. So we go from one thing to the next. We are like a woven tapestry and if there is a hole or a tear or a rip the body works to correct the problem.
Do you see where I am going with this? The body of Christ. Our physical body is so amazing and intricate that we cannot comprehend it all. One thing Todd says a lot when it comes to Hannah is “the doctors practice medicine.” It is not an exact science. One of Hannah’s docs even said, with all that we know about the body we cannot pinpoint why the body heals itself. Think about that. We are fearfully and wonderfully made and we are to be functioning at our best. If our body has an injury, the rest of the body works together to heal that part. We know this but cannot figure out how it is done. Isn’t God amazing! Ok church we are the body of Christ and when one is hurting we need to go and heal. We need to come together and work to fix the injury. The rest of the world will not understand it but we need to show God’s love.
On Sunday at church, our congregation prayed for us. This was something that was not planned and to be frank I had asked the church staff to not share a whole lot. We have been through a lot and sometimes I think the less people can give me their opinion the better. We have never had this happen to us and look what happened. Hannah’s airway is healed. I have never felt so much support from a group of people in my life. I am truly stunned here. I have grown up in the church and at times, the church has let us down, but what we experienced on Sunday was the body at its best. It was believers coming along side us and carrying us and bearing our burden so we could rest and heal. We are still getting support and many are now rejoicing with us. Our church played an important part in all this. One- God hears the prayers of His people, and two they came together as the body of Christ in the purest form to support a little family who is dealing with a child who has medical issues. Let me tell you, you do not find that anywhere.
I am so emotional right now I can’t even tell you what it is from. Is it from the best looking airway I have seen or is from the body of Christ coming along side me and my family to see us through a difficult time? The more I think about it, I think it is the latter. I thank God for our family at Ken Caryl Baptist Church. You are truly the hands and feet of God and I am so glad that we are apart of the family.
This use to be so swollen you could not see down her airway.
Well we have just gotten back from the hospital and got some good news. Hannah’s airway looks the best it has ever looked! I had to share pictures because these are such beautiful pictures. Nice and pink and it is the largest it has ever been. So this is good news and Todd and I are very relieved. I think that it is finally safe to say that her airway is not the major concern that it has been. We see pulmonary tomorrow so we will see what they say!
There is still some concern with her vocal chords and the symptoms that Todd and I have been seeing is from this issue. So we need Hannah to grow and hopefully this will work itself out too. Hannah really needs to put on the pounds! That is the prayer request. Bulk up baby!
Hannah just told me that it is just not fun at the hospital! I agree Hannah, I agree.
Thanks-
This picture has nothing to do with 51, but the kids look cute!
Ok, I have struggled how to handle this issue and here with my blog I can voice my opinion.
We have an incredible election ahead of us and in Colorado we have an enormous amount of amendments to vote on. One amendment cannot be overlooked. Amendment 51 is asking for a tax increase and the money will go to developmentally disabled adults and preschool children. Approx. 1200. These are people who qualify for assistance and are waiting years and years for the assistance they qualify for. They wait an average of 15 years. 15 YEARS! Can you imagine? This is a disgrace!
Advocates have tried through legislation and other means and this is the only way to help these people. These are people whose families are financially strapped because all their money has been used to help their adult children while they are waiting for the assistance they qualify for. This is not a time to look the other way and say I cannot support a tax. We cannot let this slip through our fingers.
I could give you sob stories but would that change your mind. How about this one. There was a child born prematurely. She spent 87 days in the hospital and her hospital stay was around $750,000. Her family had great insurance but had to pay their co-pays and what the insurance would not cover. She came home with extensive medical needs and then they were told that opps! you should have been on medicaid when you left but we will put on the waiting list. A six year waiting list. The debt has gone through the roof and luckily people fought hard for our waiting list and we got off in 18 months. Yeah this is our story. I can tell you if we did not get Hannah’s medicaid when we did we would probably have gone bankrupt and be living with one of our parents right now. Seriously. Wouldn’t that have been fun.
Now 51 is asking for funding of a different program then what we are in but they are closely related. I want you to think about us and some of you were very upset when we were waiting for something we qualified for. Can you imagine if we were still waiting? Please do the right thing and vote yes on 51. This would NOT tax groceries, gas and prescriptions. Imagine what your extra 2 cents could do. It seriously would change a life!
Hi all! I am writing this post because JoEllen thought I might know more about it. Yesterday we had quite the excitement around here. Normally things don’t disturb me too much and I just hang out on the couch all day. But yesterday, it was pretty crazy.
My family ran some errands and come home around 11:45. I know this because I heard the car and I peeked out the window. I noticed that there were police looking around and a few neighbors out but nothing to worry about. The family left at 12:30 to go to a Birthday party and I noticed a police man talking to them. He told them to go and not knock down the orange cones set up. There were cones set up on all the streets. Now that is something different. Oh well I snuggled down to take a nap.
Things started hopping a little later. Police were knocking on peoples doors and telling them to leave. They set up this white tent across the street and the police were dressed in funny clothes. I think Todd and JoEllen said they were dressed in full body armour. I was getting a little worried. Police were going in and out and I saw some of my friends being picked up by the Humane Society. I was really confused.
Then around 3:30 I hear something at the back door. I try and check it out but couldn’t see anything. I begin to recognize a smell, I am a beagle you know. Ah yes, that is Todd, what is he doing. He comes through the front door and grabs the leashes! OH BOY! I am always up for a walk. I can sense something is different and let me tell you, Blueberry was pretty stressed right now. She had no idea what was going on and was just being silly. Todd got us outside and started to walk us north on Sterne. The moment he saw the police with guns, big black long ones, he walked to the back yard. However Blueberry got scared and ran off! Luckily she just wanted to get back in the house. We went through our neighbors yard and then to the car. Oh it was fun seeing the kids. They always smell like good food. Hannah usually has some left on her face and I try and get a taste. I am not sure what a birthday party is but all I know is there is a lot of good food there. At least by the was Hannah’s face tastes.
Anyway we headed to my friends Busters house, Walker and Hannah’s Papa’s house, and hung out there for awhile. I found out later that a police officer told JoEllen that there was a drug situation and they were preparing for the worst, whatever that means. All I know is that when we got home things were pretty normal and I had a lot to talk about with my friends around the neighborhood.
Well I have finally decided to do a blog! Here it is the life and times of the Nikkel family. This is a glimpse of our journey with two kids and two dogs. I will share my thoughts and feelings on life, health, politics, religion and anything else that floats my boat.
