Saturday, March 28, 2009
Tiredness
I have been trying to figure out why I have been soo tired and ornery this past week. Actually, I think I have been pretty unbearable for my family for at least 2 weeks. I think I have figured it out. Our baby boy we were adopting is to be born tomorrow. I thought I was coming to grips with the disappointment we received 3 weeks ago when the mother changed her mind but, as I have held a set of twins last weekend and 2 newborn boys today my sadness has kind of set in. I hate not having control of my own future. I am one of the ones that needs to have control. I feel like the Lord has been trying to get me to let go of the control my whole 29 years of life. Apparently I am a little hard headed. Anyways I was just feeling a little down about this. I think you are right I do feel better after I vent to my friends. Thanks for listening!!!
Wednesday, March 25, 2009
Shannon Family Craziness
We have been home now for 2 weeks. It has been kind of hard to get back into the swing of things. It was spring break last week and that was nice. We got to spend all week together. Joseph didn't want to go back to school(I guess maybe we had a little to much fun). I didn't feel like we really did anything to special, we just played a bunch of games and watched a few movies. I think it was just being together. While we were gone Joseph spent a lot of time with my parents. Makayla felt a little left out, so I ask my dad if he had any days she could go over and work with him. Last wed. he came and picked the kids up and they went to work with grandpa. They fixed a couple toilets at the apartments I manage and then went to the dump. Who knew the dump could be so fun. But, with grandpa Bruce everything is fun. Then they went over to there house and invented a new game. My parents live at the top of a hill. They thought they would take old tires and roll them down the big hill to see how far they would go. Then they took the four wheeler down the hill and picked up all the tires and then start all over again. They did that for hours. They had so much fun.
I have been meaning to update everyone on Makayla's progress. She is doing OK. It has been wonderful to have those little glimpses of our old Makayla back. I never thought that I would see her again. But, I think that we were all wanting to go to the Mayo Clinic, find the answer and come back with a miracle cure that would take it all away. Well, that is not what happened. Don't get me wrong!! We are seeing results. I think the thing we have to remember is that now that we know how to help her and we are doing all that we can. Time will tell how it is going to go. She is taking the medicine which is helping with the headaches and the sleeping. The belly pain is being a little more stubborn. The TENZ Unit is working well. Now that she is getting used to it. It was a little scary to her at first. She wouldn't turn it up enough for it to work. I don't blame her though, I keep forgetting she is only 7 and this is all so overwhelming. One of the things that I thank my Heavenly Father everyday for is that the doctor's gave her back control over her situation. She can't take it all away but she now has the tools to manage her body which is the first step to getting her life back.
I know that I mentioned that the school was giving us a hard time. It is such a hard thing when you know that you are doing everything you can to help your children, all the while questioning yourself, Asking yourself if you are doing the right things. So, you are already feeling insecure and vulnerable and then someone who professes to care and wants to help is coming along telling you that you are a bad mother and are neglecting your children. With that said... I know that the Lord has directed us in all that we have done and in going to the Mayo Clinic. I am trying to take solace in that.
From the beginning. Since the beginning of 2009 Makayla has missed on average of 2 days a week due to her illness. We have talked to the teacher and principal and kept them updated with her condition. I tried to explain that we didn't know what was wrong and that we had been to specialist after specialist but still had no diagnosis. So, the week before we left for Minnesota the principal called to tell me that she had turned me into the school superintendent for educational neglect. I in turn called the superintendent to find out what I could do to rectify the situation. He told me that because we didn't have a diagnosis he could not work with us. I explained to him as well that we have been to specialist after specialist and have been since Jan 2008. But, No one could help us. He told me that she was either in school or home schooled. That there was no other options. I tried to explain that I was doing the best I could and she couldn't go full time. I also didn't feel like homeschooling was the right thing either. He again told me there were no other options for her. After a 10 minute speech about how if I cared she would be there and that homeschooling is so horrible anyway and that she just needed to be in school. I told him we were going to the Mayo Clinic in a week and I would get back to him. I knew that he wouldn't listen to anything I had to say. He told me that he would wait to file the neglect charges until after we got back. OH, He also said he was failing Makayla for the third quarter. I said how do you fail a 1st grader who is at the top of her class even missing all those days. We left for 10 days and came back I called the school on Tues. and told them that we were on our way back and Makayla needed to rest and then she would be ready to return on Thurs. Wed. I called the principal to discuss the doctor's orders. The doctor wants her to go back to school part time until we can get her pain under control. Her outline is this: in the morning if she is feeling good she goes at 10:00a.m. If she is feeling bad she goes in at 12:00p.m. I will work with her on her school work during those times and we will move up the times as she starts to get control of her situation. The principal told me that she would have to talk to the superintendent before she could tell me if they could do that. Me being the impatient person I am called the super myself. When I told him what the doctor said he said that the doctor had no right to tell him when she was going to be in school and that it is his obligation to get her an education not theirs. I was floored. I told him that this is what is best for Makayla and that this is the way she could get the best education or we would have to go back to the other way which was not working for anyone. He asked me what her diagnosis was and I started to explain her diagnosis. He said no, what is her diagnosis. I started to explain it again and he said do you have any paperwork from the doctor. I told him that when we left the doctor told us we could bring home a 100 page copy of tests and dictations that no one can understand or I could wait a week and get a diagnosis packet with orders and a run down of everything. We opted for the diagnosis packet thinking that the school would work with us for a week. Boy, were we wrong!!! He told me he knew how the Mayo worked and if my daughter had a real diagnosis they would have sent me home with a paper telling us what her diagnosis was. (If you don't know my situation I spent 14 years in pain and having health problem's with everyone telling me it was in my head and going from doctor to doctor trying to figure it out and in the end finding out that I had some rare form of cancer that no one knew about. So it INFURIATES me when stupid people who have no idea what is going on tells me it is not a REAL diagnosis.) I told him that he could see it in a week. He again told me he could not work with me and that he had already filed the neglect charges. I said well then I guess we have nothing else to say and hung up. After yelling and crying I decided to look up Missouri education laws. GUESS WHAT! There is such a thing as medically induced part time.. Hmm. isn't that interesting. I decided that they are chicken and if I bring my big, strong husband with me they would back down.( I hoped anyway) So, Monday morning at 10:00 I took Makayla to school. I didn't give them the option of not letting her in. I was right they professed how happy they were to have Makayla back and I gave them the paper from the doctor and turned to leave. The principal said I will talk to the super and make sure this all we need. I said OK. As Mike said we had to put on the hip waders to walk through the door but it was good. I am glad we did it. She did call me back though and said that she didn't know if it would work. I said well you know how to get a hold of me. Bye. I have not heard anything back yet.
People ask Why fight? Why put up with this? My answer is for the next Makayla who comes along. For the next little girl who desperately wants to be in school with her friends and be normal. I know that home schooling can be good as well as public school. But, I also know that at the beginning of every school year I will pray to my Heavenly Father and ask if this is the year I should pull my kids out and Home school. It has not happened yet so, we will fight.
I have a hard time sharing parts of my life so, I am not sure if I can blog after this post. I feel like I am being a whine-butt. Sorry for all of the drama
I have been meaning to update everyone on Makayla's progress. She is doing OK. It has been wonderful to have those little glimpses of our old Makayla back. I never thought that I would see her again. But, I think that we were all wanting to go to the Mayo Clinic, find the answer and come back with a miracle cure that would take it all away. Well, that is not what happened. Don't get me wrong!! We are seeing results. I think the thing we have to remember is that now that we know how to help her and we are doing all that we can. Time will tell how it is going to go. She is taking the medicine which is helping with the headaches and the sleeping. The belly pain is being a little more stubborn. The TENZ Unit is working well. Now that she is getting used to it. It was a little scary to her at first. She wouldn't turn it up enough for it to work. I don't blame her though, I keep forgetting she is only 7 and this is all so overwhelming. One of the things that I thank my Heavenly Father everyday for is that the doctor's gave her back control over her situation. She can't take it all away but she now has the tools to manage her body which is the first step to getting her life back.
I know that I mentioned that the school was giving us a hard time. It is such a hard thing when you know that you are doing everything you can to help your children, all the while questioning yourself, Asking yourself if you are doing the right things. So, you are already feeling insecure and vulnerable and then someone who professes to care and wants to help is coming along telling you that you are a bad mother and are neglecting your children. With that said... I know that the Lord has directed us in all that we have done and in going to the Mayo Clinic. I am trying to take solace in that.
From the beginning. Since the beginning of 2009 Makayla has missed on average of 2 days a week due to her illness. We have talked to the teacher and principal and kept them updated with her condition. I tried to explain that we didn't know what was wrong and that we had been to specialist after specialist but still had no diagnosis. So, the week before we left for Minnesota the principal called to tell me that she had turned me into the school superintendent for educational neglect. I in turn called the superintendent to find out what I could do to rectify the situation. He told me that because we didn't have a diagnosis he could not work with us. I explained to him as well that we have been to specialist after specialist and have been since Jan 2008. But, No one could help us. He told me that she was either in school or home schooled. That there was no other options. I tried to explain that I was doing the best I could and she couldn't go full time. I also didn't feel like homeschooling was the right thing either. He again told me there were no other options for her. After a 10 minute speech about how if I cared she would be there and that homeschooling is so horrible anyway and that she just needed to be in school. I told him we were going to the Mayo Clinic in a week and I would get back to him. I knew that he wouldn't listen to anything I had to say. He told me that he would wait to file the neglect charges until after we got back. OH, He also said he was failing Makayla for the third quarter. I said how do you fail a 1st grader who is at the top of her class even missing all those days. We left for 10 days and came back I called the school on Tues. and told them that we were on our way back and Makayla needed to rest and then she would be ready to return on Thurs. Wed. I called the principal to discuss the doctor's orders. The doctor wants her to go back to school part time until we can get her pain under control. Her outline is this: in the morning if she is feeling good she goes at 10:00a.m. If she is feeling bad she goes in at 12:00p.m. I will work with her on her school work during those times and we will move up the times as she starts to get control of her situation. The principal told me that she would have to talk to the superintendent before she could tell me if they could do that. Me being the impatient person I am called the super myself. When I told him what the doctor said he said that the doctor had no right to tell him when she was going to be in school and that it is his obligation to get her an education not theirs. I was floored. I told him that this is what is best for Makayla and that this is the way she could get the best education or we would have to go back to the other way which was not working for anyone. He asked me what her diagnosis was and I started to explain her diagnosis. He said no, what is her diagnosis. I started to explain it again and he said do you have any paperwork from the doctor. I told him that when we left the doctor told us we could bring home a 100 page copy of tests and dictations that no one can understand or I could wait a week and get a diagnosis packet with orders and a run down of everything. We opted for the diagnosis packet thinking that the school would work with us for a week. Boy, were we wrong!!! He told me he knew how the Mayo worked and if my daughter had a real diagnosis they would have sent me home with a paper telling us what her diagnosis was. (If you don't know my situation I spent 14 years in pain and having health problem's with everyone telling me it was in my head and going from doctor to doctor trying to figure it out and in the end finding out that I had some rare form of cancer that no one knew about. So it INFURIATES me when stupid people who have no idea what is going on tells me it is not a REAL diagnosis.) I told him that he could see it in a week. He again told me he could not work with me and that he had already filed the neglect charges. I said well then I guess we have nothing else to say and hung up. After yelling and crying I decided to look up Missouri education laws. GUESS WHAT! There is such a thing as medically induced part time.. Hmm. isn't that interesting. I decided that they are chicken and if I bring my big, strong husband with me they would back down.( I hoped anyway) So, Monday morning at 10:00 I took Makayla to school. I didn't give them the option of not letting her in. I was right they professed how happy they were to have Makayla back and I gave them the paper from the doctor and turned to leave. The principal said I will talk to the super and make sure this all we need. I said OK. As Mike said we had to put on the hip waders to walk through the door but it was good. I am glad we did it. She did call me back though and said that she didn't know if it would work. I said well you know how to get a hold of me. Bye. I have not heard anything back yet.
People ask Why fight? Why put up with this? My answer is for the next Makayla who comes along. For the next little girl who desperately wants to be in school with her friends and be normal. I know that home schooling can be good as well as public school. But, I also know that at the beginning of every school year I will pray to my Heavenly Father and ask if this is the year I should pull my kids out and Home school. It has not happened yet so, we will fight.
I have a hard time sharing parts of my life so, I am not sure if I can blog after this post. I feel like I am being a whine-butt. Sorry for all of the drama
Tuesday, March 17, 2009
Pay It Forward
{payin' it Forward!!}
Here's how it works:
the first 3 people to respond to this post will get something made by me personally. What I make is my choice, but it will be made JUST FOR YOU! My choice. For you.
Even if you don't feel crafty, you can do this. You can send your players anything and it can be simple. It's all about the spirit of love and making someone's day.
The Rules:
1. Be one of the first three bloggers to leave a comment on this post, which then entitles you to a handmade item from me - something crafty or photo related, who knows?!
2. Winners must post this challenge on your blog, meaning that you will Pay It Forward, creating a handmade gift -anything!- for the first THREE bloggers who leave a comment on YOUR post about this giveaway!
3. The gift that you send to your Three Friends can be from any price range and you have 365 days to make/ship your item. This means you should be willing to maintain your blog at least until you receive your gift and have shipped your gifts. And, remember: It’s the Spirit and the Thought That Count!
4. When you receive your gift, please feel free to blog about it, sharing appropriate Linky Love!If you are not one of the Top Three Commenters on this post, you can still play along. Go ahead and start your own Pay It Forward chain, and encourage your blogging friends to do the same! SO, REMEMBER... it is good... Pass it forward.
I hope you play.
Ready. Set. Go.
Good Luck.
Here's how it works:
the first 3 people to respond to this post will get something made by me personally. What I make is my choice, but it will be made JUST FOR YOU! My choice. For you.
Even if you don't feel crafty, you can do this. You can send your players anything and it can be simple. It's all about the spirit of love and making someone's day.
The Rules:
1. Be one of the first three bloggers to leave a comment on this post, which then entitles you to a handmade item from me - something crafty or photo related, who knows?!
2. Winners must post this challenge on your blog, meaning that you will Pay It Forward, creating a handmade gift -anything!- for the first THREE bloggers who leave a comment on YOUR post about this giveaway!
3. The gift that you send to your Three Friends can be from any price range and you have 365 days to make/ship your item. This means you should be willing to maintain your blog at least until you receive your gift and have shipped your gifts. And, remember: It’s the Spirit and the Thought That Count!
4. When you receive your gift, please feel free to blog about it, sharing appropriate Linky Love!If you are not one of the Top Three Commenters on this post, you can still play along. Go ahead and start your own Pay It Forward chain, and encourage your blogging friends to do the same! SO, REMEMBER... it is good... Pass it forward.
I hope you play.
Ready. Set. Go.
Good Luck.
Thursday, March 12, 2009
Clarification
Well a few people have commented about her belly pain saying "then it's all in her head." I feel like I need to clarify. It is not "all in her head" it is in her nerve endings and how they communicate to her brain. She is feeling real pain and it is very real to her body. As if someone is stabbing her in the stomach over and over again. We are going to talk to the school today to tell them our plan. We will see how it goes. As of 2 weeks ago they were turning us in for neglect. We are trying to combat that with the doctors reports today. Wish us luck..
Monday, March 9, 2009
Monday, March 9, 2009 Real Post
I'm just kidding. We are at The Ronald McDonald House. We just finished cleaning our room and thought it would be a good time to hurry and write a blog. We were able to meet with Dr. Pittock this morning. Things went really well. She said that as Dr. Mack, the Neurologist, said her head aches were called Chronic Daily Headaches. They are a type of Migraine that typically manifests in teenage girls. But they are starting to see it manifest in younger girls if they have had a severe illness. Plus with my history of Migraines, that is another strike against her. They are going to put her on Nortiptoline. It is a medicine that is a pain inhibitor and also helps with sleep. The stomach pain is caused from her intestines. The GI Doctor said the as she digests food and her intestines are moving the food through, her body is reading that as something that should be painful and the pain receptors are firing. This is because she has been in pain for so long that they don't know when they should and shouldn't be firing. The Nortriptoline will also help inhibit that pain. She has also been taught some different pain management techniques. She has been taught some different breathing and relaxing techniques that should help. She will also use the TENS unit to help "retrain" her pain receptors. On a side note Amy asked about the Esophagus, and they told us the good thing with the Esophagus is that it heals with the right medication and time. They put her back on prilosec and want her to take it to help with that process.
So the diagnosis is good, there is nothing seriously wrong with her. The MRI was normal as was the Echo, and Ultrasounds. They want her to start taking Vitamin D and Iron so we are going to give her a multivitamin everyday, and start having her drink more lactose free milk and eat cheeses instead of Soy Milk to help with the Vitamin D problem. All her hormone levels are where they should be for a healthy 7 year old. It's amazing how all this started with strep throat.
We are so thankful that we had the opportunity to come up here and meet with these wonderful Doctors and the different staff we were able to interact with. They were wonderful and very willing to help and assist where ever needed. Now we at least know what the problem is and can now start doing things to fix the problem instead of just treating the symptoms. We will now be able to let her be a 7 year old again.
Thank you all again for the love and support you have given us. We can't tell you enough how each of you have helped us make it through this. We appreciate each and everyone of you.
Much Love and Appreciation,
Mike, Karin, Joseph, and Makayla
So the diagnosis is good, there is nothing seriously wrong with her. The MRI was normal as was the Echo, and Ultrasounds. They want her to start taking Vitamin D and Iron so we are going to give her a multivitamin everyday, and start having her drink more lactose free milk and eat cheeses instead of Soy Milk to help with the Vitamin D problem. All her hormone levels are where they should be for a healthy 7 year old. It's amazing how all this started with strep throat.
We are so thankful that we had the opportunity to come up here and meet with these wonderful Doctors and the different staff we were able to interact with. They were wonderful and very willing to help and assist where ever needed. Now we at least know what the problem is and can now start doing things to fix the problem instead of just treating the symptoms. We will now be able to let her be a 7 year old again.
Thank you all again for the love and support you have given us. We can't tell you enough how each of you have helped us make it through this. We appreciate each and everyone of you.
Much Love and Appreciation,
Mike, Karin, Joseph, and Makayla
Monday, March 9, 2009
Well we know you are all excited and waiting to hear the results, but we are tired and are going to go to bed. We'll blog in the morning.
Sunday, March 8, 2009
Sunday, March 8, 2009
Hi all, this weekend has been a rather relaxing weekend. We really didn't do a whole lot. We mostly cuddled and watched movies. We have watched High School Musical 1 & 2, a couple different Dora the explorer movies, and some Barbie movies. We also went and visited a Veterans Memorial. The place was amazing. I have video of it, but our cameras' batteries were dead so we were not able to just take photos. I'll have to figure out how to get still shots from the video and post them on the site. It was amazing. They had bricks with the names of all the soldiers who had served from Minnesota, and then on the Wall they had all the names of those who had perished while serving our country. It was very well done. That was on Saturday afternoon, then we just hung around the Ronald McDonald House and played games and watched more movies. Then this morning we were given tickets to a Pancake feed to support one of the local High Schools band. So we ate breakfast there and then came back. The GI doctors wanted to do a "clean out" of Makaylas belly. So we had to hang out around the house. We napped and watched more movies. Then they had a dinner provided by someone from the community. They had ham and funeral potatoes and veggies. It was pretty good. After dinner we went to the community room and played video games until it was time to go to bed. Now I'm blogging and then going to hit the sack. Tomorrow we are going to see Dr. Pittock, Makaylas' main Doctor to see what all the results are and then what the game plan is. We then have two appointments with the pain management specialists. With all said and done we will be able to go home on Tuesday morning. So keep us in your prayers and hopefully we will be able to be done with this.
Saturday, March 7, 2009
Pictures
After the MRI. Cool hat! Now she matches the doctors.
During the heart ultrasound.
All of us at Beauty and the Beast. Makayla got her picture taken with Belle
Friday, March 6, 2009 2nd post
Hi all, sorry for the delay. It was just a real long day yesterday and we were ready for bed long before we actually went to bed. The day started off with the alarm going off at 6:30 am. We had to be at the Mayo Clinic at 7:15 to sign in for Makayla to have an Echocardiogram. They wanted to check her heart and make sure the fevers she had a year ago didn't do any damage to it. She laid there for about an hour watching Kung Fu Panda while they did an Ultrasound on her heart. She doesn't like the ultrasound jelly they use. She says it feels too funny. Our next appointment was a 9:30 at St. Mary's Hospital about 2 miles from the Mayo Clinic for the sedation MRI. We took a patient shuttle to the Hospital. We were able to check right in, but then they didn't get to her until about 11:00. It was pretty rough watching them put her to sleep. She didn't like the mask on her face so she really threw a fit and started crying. She had a look on her face as they were putting her to sleep to say, "Why are you doing this to me." She looked so sad. We both felt really bad. It is too bad that we have to go through all of this to make her healthy. The good thing was when she woke up she didn't remember feeling so betayed. The MRI took about an hour to complete. We just hung out in the lobby. After she woke up enough we took the shuttle back to The Ronald McDonald House and rested for a while. Makayla got hungry and we went looking for a Restaurant to eat at. We found this place called the Canadian Honker. Of course we had to stop because of the funny name. The food was real good. We then went back and watched High School Musical on the big sceen in the community room and went to bed.
Friday, March 6, 2009
Thursday, March 5, 2009
Hi all, Greetings from Rochester. We had kind of a laid back day. We had two appointments, one with pain management and the other was an ultrasound of the abdomen and pelvis. The pain management appointment was like the other two pain management appointments except the Doctor was an anesthesiologist, he had a pocket protector, and was wearing a bow tie. Kind of ODD!!! He went over Makaylas history and did a quick exam of her then he got ahold of Dr. Pittock and gave her his recommendation for pain management. He agreed with the TENS unit and thought that was a great idea. He also agreed with the Neurologist in giving Makayla nortriptoline, to help with the pain and her sleeping. It also helps with the headaches. We then had 4 hours before our next appointment so we went back to the Ronald McDonald House and watched The Incredibles and rested. We then went back to the 16th floor of the Mayo building and had an Ultrasound of Makaylas Abdomen and Pelvis. They were looking to see if everything was where it was supposed to be and that everything looked normal. We haven't heard back yet if they found anything. We then decided that since we were going to be here over the weekend we needed groceries. So we went shopping. Makayla was kind of bummed out because we haven't done anything "fun" yet. So we found out one of the local High Schools was putting on a stage play of Disney's Beauty and The Beast. Someone had donated tickets to The Ronald McDonald House so we decided this was the "fun" she needed. We went and watched the play and she absolutely LOVED it. She sat on my lap and was mesmerized by it. She was so excited after the play that the cast was out in the lobby and she got to meet them. She got her picture taken with Belle. ( We'll post later.) It was then 10:30 pm and we had to be up at 6:30 for her appointments so we went back and went to bed.
Wednesday, March 4, 2009
March 4,2009
Well, Today we caught the bus to the hospital at about 7:30 this morning to start our day. The first person we saw was Dr. Harbeck-Weber in the Dept. of Psychiatry and Psychology. She was nice. We talked all together after that just Mike and I and then just Makayla. It was nice to talk to someone who understands the situation we are in. I think it also helped Makayla to be able to tell her real feelings without having to worry how we are going to react. Even as supportive as I feel we are she still is afraid that we will be upset with her for some of the way she feels. It's amazing how that insecurity can creep in so easily. Anyway, That was really nice and we learned a lot about ourselves.
After that we walked through the subway (the subway is so cool. We can walk from one building to the next through a series of halls under all of the huge buildings. It makes it so we don't have to go out in the 7 degree weather. Which is nice) over to The Rochester Methodist Hospital for a MRI. The MRI didn't go so well in fact we didn't get it done. Makayla was to afraid of the IV and got herself so worked up that she couldn't have layed still long enough. Makayla says " it was weird when they numbed her hand." We rescheduled for Friday. Then we will do a sedated MRI and put the IV in while she is asleep and leave it in after she wakes up for any other tests. I think this will be better anyway. Then we can limit the trauma. Thank you Joe for being a stand in for Aunt Shannie while she was in school.
We went back over to the main building to see the GI Doctor. Dr. Ibrahim went through our file with us to try and get us all on the same page. We all agree that our other GI doctor did not know what she was doing!! We are going to go a different direction. I hope that this will help us!
It was nice the Lion Club put together dinner tonight. We went down to the meeting hall and had dinner. We went into the game room after dinner and played Guitar Hero and Pinball. Now it is time for bed so we can be there again bight and early in the morning. We love you!! Good night.
After that we walked through the subway (the subway is so cool. We can walk from one building to the next through a series of halls under all of the huge buildings. It makes it so we don't have to go out in the 7 degree weather. Which is nice) over to The Rochester Methodist Hospital for a MRI. The MRI didn't go so well in fact we didn't get it done. Makayla was to afraid of the IV and got herself so worked up that she couldn't have layed still long enough. Makayla says " it was weird when they numbed her hand." We rescheduled for Friday. Then we will do a sedated MRI and put the IV in while she is asleep and leave it in after she wakes up for any other tests. I think this will be better anyway. Then we can limit the trauma. Thank you Joe for being a stand in for Aunt Shannie while she was in school.
We went back over to the main building to see the GI Doctor. Dr. Ibrahim went through our file with us to try and get us all on the same page. We all agree that our other GI doctor did not know what she was doing!! We are going to go a different direction. I hope that this will help us!
It was nice the Lion Club put together dinner tonight. We went down to the meeting hall and had dinner. We went into the game room after dinner and played Guitar Hero and Pinball. Now it is time for bed so we can be there again bight and early in the morning. We love you!! Good night.
Just a few picture's
A crazy water tower. It is famous. 
Us waiting for a doctor again. How exciting!! 
Makayla Waiting too. Isn't she cute. 
In the van on our way to minnesota. 
Tuesday, March 3, 2009
Tuesday, March 3, 2009
Well it was a long day today. Karin was up at 6:00 this morning to go over and fight with the business office at 7:00. She was finally able to get everything straightened out. By the time she got back to the hotel Makayla and I were up and getting ready for the day. We had to be back on the 16th floor for blood work and urine tests by 8:00. It was a real stuggle because she doesn't like the needles. After holding her down and the tech getting the blood we were able to go eat breakfast. The next appointment was at 9:30 with a Neurologist. His name is Dr. Mack. He was a vey awesome man. He talked to Makayla for about 15 or 20 minutes and then filled in the holes with Karin and I for about another 15 to 20 minutes. He then examined Makayla and and then sat us all down to talk to us. He was amazing because he went through my history with Migraines and then told us he believed Makayla has what is called Chronic Daily Headaches. Which is a form of migraines. He laid everything out in front of us on a wipeboard and made sure we understood what he was trying to tell us. It was very impressive. We finished with that at about 10:45 and our next appointment wasnt until 12:45 so we went back to our hotel for a rest. Our 12:45 appointment was with a pain management Doctor. She was very nice. She talked to us about a TENS unit. Which is like a mini electro-shock therapy device. She also talked to us about different exercises that Makayla can do to help strengthen he different muscles and gain endurance. She then sat up and appointment with a physical therapist to demonstrate the TENS unit and the different exercises. The TENS unit is like the machines that Chiropractors have that deliver electric pulses to the muscles and have been found to help with pain management. She was very helpful. We were lucky enough to get a call from the Ronald McDonald House telling us that they had a room for us if we still wanted it. We were very happy to get out of our 10 X 10 cell. Makayla was complaining that she was hungry and that she wanted Taco Bell. So we went and she was able to to have a cheese quesadilla. She was in HOG HEAVEN!!!! We then went to the Ronald McDonald house and checked in. It is a very nice place. Our room has a queen bed and a twin bed, a TV and DVD player, and a bathroom. It is very nice. We have our own pantries in the kitchen area and a spot in one of the fridges. Its pretty cool. We are also able to leave our car here and take a shuttle to the Mayo Clinic. No more paying for parking... YAY!!!! Well our first appointment is at 8:00 in the morning, so we are headed to bed. Hope all is well with all of you. We miss you all!!! Love Mike Karin and Makayla.... Joseph too.... He is having fun with Grandma and Grandpa Westwood and the Youngs...
Tuesday, March 3, 2009
Hello All!!!! Well it has been a long week today!!! This photo was taken by a good friend, Mary Walton, the week before we left to come up here. We think that she looks beautiful, but some say we are bias.
Monday, March 2, 2009
Our First Day!!!
Well what an awesome experience. We got to the Mayo Clinic this morning at 8:30. We went to the 16th floor of the Mayo Building and went to check in. They told us that we needed to go down to the Business office and fill out some paperwork (even though we did all the pre-registrations on the Internet and through the mail.) After going downstairs, all 16 floors of it, they told us that everything was ok and that we could go back up stairs, all 16 floors of it, and start our round of appointments. We met with the main Doctor that will be overseeing Makayla's treatment. Her name is Siobhan Pittock, she is from Kildare, Ireland. After seeing her and hearing that beautiful Irish broag, I realized the Lord has really blessed us and had a hand in selecting the right doctor. HE HE HE.... She was very thorough in her assessment of Makayla. She decided she needed to have blood work, a MRI, an echo, and an ultrasound of her belly. After seeing her we went down to lunch and tried to get into the Ronald McDonald House. They were already full so we had to stay somewhere else. After that we went back up to the 16th floor to the allergist. She made Makaylas' whole day by telling her she could have macaroni and cheese and pizza. Come to find out we have been trying so had to keep her away from dairy for no reason. They said she is not allergic to dairy products just lactose intolerant. Also, we found out that her doctor at Children's Mercy didn't have any idea what she was doing. (This is not a big surprise to us.)
We then checked into our 10x10 cell. All we can say is that at least it cheap and warm.(seeing the temperature outside is a whopping 7 degrees.) Guess what Makayla had for dinner!! Some of you probably know her well enough to know her favorite meal eve is macaroni and cheese. (Which she hasn't had in almost a year. So of course she had this with extra cheese!
We are now in the room again trying to calm down enough to sleep. Mom is happy because they gave us a week long schedule and knowing her controlling issues she needed to have a list of everything. With where we are supposed to be and what time. We get a new one after every appointment with the new tests, times and places. This is helping her feel in control of the situation.
The schedule tomorrow starts pretty early. At 7 we meet with the business office. At 8 she has fasting labs and it goes on after that all day until they are done with us. today that was about 4:30. Hopefully we are keeping you posted like we said we would. If you have any questions let us know. Thank you for your comments. Good night
We then checked into our 10x10 cell. All we can say is that at least it cheap and warm.(seeing the temperature outside is a whopping 7 degrees.) Guess what Makayla had for dinner!! Some of you probably know her well enough to know her favorite meal eve is macaroni and cheese. (Which she hasn't had in almost a year. So of course she had this with extra cheese!
We are now in the room again trying to calm down enough to sleep. Mom is happy because they gave us a week long schedule and knowing her controlling issues she needed to have a list of everything. With where we are supposed to be and what time. We get a new one after every appointment with the new tests, times and places. This is helping her feel in control of the situation.
The schedule tomorrow starts pretty early. At 7 we meet with the business office. At 8 she has fasting labs and it goes on after that all day until they are done with us. today that was about 4:30. Hopefully we are keeping you posted like we said we would. If you have any questions let us know. Thank you for your comments. Good night
Sunday, March 1, 2009
Sunday, March 1st, 2009
WE ARE IN MINNESOTA RIGHT NOW. Tomorrow we are going to the Doctor. We drove by the Mayo Clinic this afternoon, there are like 100 buildings. It's huge!!! I couldn't belive how BIG IT is! Love, Makayla
Well like Makayla said we are here. We got here Yesterday and have petty much spent the day in the motel relaxing. We were able to find a church and go to sacrament meeting. Makayla is nevous and not looking fowad to going to the doctor tomorrow. We are very hopeful that the Doctors will be able to find out what is going on. We are thankful for all the love and support that eveyone has shown towards us. Not much has happened today to write about. We will post more tomorrow when we know more.
Love Mike, Karin and Makayla
Well like Makayla said we are here. We got here Yesterday and have petty much spent the day in the motel relaxing. We were able to find a church and go to sacrament meeting. Makayla is nevous and not looking fowad to going to the doctor tomorrow. We are very hopeful that the Doctors will be able to find out what is going on. We are thankful for all the love and support that eveyone has shown towards us. Not much has happened today to write about. We will post more tomorrow when we know more.
Love Mike, Karin and Makayla
We made it!!
We made it last night to the hotel. It was a pretty good drive. We are going to go visit Soldiers Field Veterans Memorial today after church. You can look it up on the internet. It looks pretty cool. We will post pictures tonight. Our first appointment is tomorrow at 8:30. We are excited and nervous. At the same time.
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