Each year as we enter into December I begin reflecting on the last year and also start preparing for the next. I am sure I won't capture it all in this post, but we did a lot in 2012.
The winter was mild, that was a treat. The boys and I went to Florida in March for spring break to visit Scott's folks. It was wonderful to wear capri pants and flip flops every day.
The KC Blues had the best season ever taking both the D1 and D3 sides to the elite 8. D1 finished the season ranked 4th in the nation! Not too shabby. We are very proud of Coach Adamson!!
Oh, Oh, Oh...in mid May we adopted (from our neighbor down the road) the cutest, tiniest Yorkie...we named him Cooper, cause he's a mini! He brought a whole new level of smiles and laughter to our home.
At the end of May our summer nanny started. It was the first time we have had a male nanny. Eli's teachers and therapists referred to him as our 'manny'. Dustin is a SR at Baker University, studying to be a special education teacher and bonus, he plays football for Baker, too. The boys really enjoyed the summer. Swimming, bowling, going to the park...Dustin was great fun. I am certain this experience will benefit his future work as well as his most important job someday of being a dad!
June 1, 2012: Guess I better mark this date in my timeline! 20 year service anniversary with Sprint today. Love my job, Love my co-workers, Love Sprint!! I am so blessed!
June 10th - KSU football camp! Blake and Auggie had a great time.
In late June, we planned a small gathering for Eli's birthday and it turned into a pretty big event. Everyone had a great time. We continued with the Spongebob theme, sort of...Scott fried fish. Gibson Hobbs complemented him, "Most excellent fish, Mr. Scott!" My post of Facebook: Today my sweet Eli is 9!!! A big day...and rest of the week ahead. The Lions Club of Baldwin is giving him a new bike for PT/OT at school and we are headed to the Royals game this afternoon. THANK YOU SurePoint for the great tickets...maybe we can stay in the AC for most of the game!!! Happy Birthday ELI! Thanking God for choosing me to be your momma! He knew I needed you!
Blake went to Silver State Baptist Youth Camp in June as well. He loved the whole experience. This year, he stood up in front of the whole congregation and spoke about what impacted him the most. It was the messages on being humble and giving God the glory for all our accomplishments. He related it to his athletic involvement. I was beaming. So proud of the wonderful young man he is!
Here is the online article about Eli and our family that ran on July 3rd! THANK YOU to our community, church, friends, family and all the other families who are blessed with a child like Eli.
http://signal.baldwincity.com/news/2012/jul/03/mother-grateful-baldwin-city-communitys-support-co/
In July we attended the annual Austin Family Independence Day Celebration with our church family.
Blake attended Baldwin Jr. High football camp. At the end of the month we headed out for 10 days in Colorado. Met with my parents and A. Susie & U. Buddy on Friday night, stayed in Salina. Made our way to Boulder on Saturday, visited Estes Park and Rocky Mtn Nat'l Park on Sunday. Blake and I climbed the Alluvial Fan (boulders pushed by water down the side of the mountain). Spent 2 nights with the Duanna Matthys family in Castle Rock and celebrated my birthday. Went on to Green Mountain Falls for 3 nights. While there we visited Garden of the Gods, rode the Cog Railway to Pike's Peak, went white water rafting on the AR River, walked across the Royal Gorge and I drove up and over a sky view drive...the scariest thing I have ever done...white knuckles the whole way. This wasn't a mountain, this was over the top of a huge narrow rock...no guard rails. Not doing that again, but feel like I can do anything now!!! We stopped at Prairie Dog Town, spent the night in Hays, then stopped in Wamego for lunch at Toto's Tacoz before kickin' it back into Baldwin. Whew...that was quite a vacation!!!
Back just in time for school to start! BIG E is in 2nd Grade and my sweet Blake is in his last year of Jr. High...every time I think about it I nearly hyperventilate.
At the end of August, Patriot George Clymer "George" the smooth collie moved in. At 8 weeks old he towers over Cooper and is at parity with Mouse the cat. They all became friends and are rarely seen without each other.
September (wow, this is taking more time than I expected!) rolled in. Our sweet Eli is the photographic example on the GeneReviews website of what children with PTHS look like. Darling, happy, snuggly boy! We all have a terrific opportunity to learn many amazing things by knowing Eli. So blessed to have been chosen for the position of being his momma! http://www.ncbi.nlm.nih.gov/books/NBK100240/
Blake and I attended the KSU vs. North Texas game in Manhattan (compliments of the Ekwensi Griffith family). We had a great time at the game. It was a rare mom and son occation as well.
Eli's music program went splendedly. He stood on the risers with his classmates and was smiling the whole time. It was awesome to see him up there with his friends.
Halloween, though a bit uneventful, was a success. Eli dressed as a Karate Kid for his school party, I went as a KSU WildCAT, Scott wore his traditional "this is my costume" t-shirt and Blake spent the evening hangin' out with the teens at church.
November - Trip to Joplin for Doug and Heather's wedding...Congratulations! Enjoyed visiting with family and friends. Made it back to KC for Blake to compete and place 3rd as the youngest in the 14-15 age group of the regional round of the NFL Punt, Pass and Kick competition. Good job son!! Our annual trip to Big Cedar was awesome. 16 year anniversary!
"I love being married to a man who knows what he thinks and why he thinks it! A man who is strong physically, mentally and most important spiritually. He is funny, really funny, with his quick wit and under the breath humor. A man who loves his children; he is fun and kind, but also loves them in such a way that they learn right from wrong and good from bad, they understand boundaries and respect those boundaries. A man who recognizes and desires The Wife of Noble Character (Proverbs 31:10-31) and makes it possible for me to strive to achieve such status. "Her husband has full confidence in her and lacks nothing of value." I am a blessed woman to have found such a man with whom I will spend the rest of my life. Happy Anniversary to My Man O' Destiny, you are my super hero!"
We were joined by the honeymooners: Doug and Heather! Aunt Susie, Uncle Buddy, Micah (and Shultz & Gertie) and my parents (with Shaggy and Magic) all came to our house on Wednesday before Thanksgiving. It was a great visit. We did it all...horderves, traditional drinks, big dinner, big breakfasts, yum-o desserts, shopping, WWI museum, dinner at GoJos Japanese Steak House, a quick drive through the JC Nichols Plaza, shopping at Cabella's, a new underground dog fence, the makings of a fabulous new Pet Tech/Pet Stop website, target practice, played games, watched Christmas shows and a few movies, all while visiting and laughing and enjoying being together! A truly Happy Thanksgiving!
An now the Christmas season is upon us! This means that it is also time to celebrate Blake's 14th birthday...it really can't be that on this day, 14 years ago, we were awaiting the arrival of our treasured gift, our first born son! He has been a joy since the day he arrived. Certainly, like all of us, he has his moments of making his parents crazy, but we could not have dreamed up a more wonderful child to bless our family. As he grows into the man he is to be, we are constantly reminded of his outstanding character and compassion. He is a smart, funny, handsome, athletic kid who is the best big brother anyone could want, he is kind, courteous and knows he is loved, by all of us and by our Savior. Dear Sweet Blake...oh how we adore him!
In case I don't post here again this year! Merry Christmas and Happy New Year to my loyal blog followers...there are only a few of you, but I am so glad you are out there!! Thank YOU!
My 2013 focus: If I incorporate all of these things listed below I will reach my other goals, too!!
Optimizing Your Cholesterol Levels, Naturally
There's really no reason to take statins and suffer the damaging health effects from these dangerous drugs. The fact is that 75 percent of your cholesterol is produced by your liver, which is influenced by your insulin levels. Therefore, if you optimize your insulin level, you will automatically optimize your cholesterol. It follows, then, that my primary recommendations for safely regulating your cholesterol have to do with modifying your diet and lifestyle:
•Optimize your vitamin D levels. Research by Dr. Stephanie Seneff has shed additional light on the extreme importance of appropriate sun exposure for normalizing your cholesterol levels and preventing heart disease. For more information, please see this previous interview.
•Reduce, with the plan of eliminating, grains and sugars in your diet. Ideally, you'll also want to consume a good portion of your food raw.
•Make sure you are getting plenty of high quality, animal-based omega 3 fats, such as krill oil.
•Other heart-healthy foods include olive oil, coconut and coconut oil, organic raw dairy products and eggs, avocados, raw nuts and seeds, and organic grass-fed meats as appropriate for your nutritional type.
•Exercise daily. Make sure you incorporate peak fitness exercises, which also optimizes your human growth hormone (HGH) production.
•Address your emotional challenges. My favorite technique for stress management is the Emotional Freedom Technique (EFT).
•Avoid smoking or drinking alcohol excessively.
•Be sure to get plenty of good, restorative sleep.
Unlike statin drugs, which lower your cholesterol at the expense of your health, these lifestyle strategies represent a holistic approach that will benefit your overall health—which includes a healthy cardiovascular system.
Friday, November 30, 2012
Friday, October 26, 2012
Well, it's October...guess I better get going if I intend to reach my 2012 blogging goal!!
Per the last update I posted moments ago...THANK YOU LORD...MY POST WASN'T LOST AFTER ALL!!!
Hello to anyone who might read my blog -
I read a blog post this morning LLH DESIGNS about perfectionism vs. excellence. My perfectionist tendencies, I think, are what keep me from posting! I feel an overwhelming desire to post here about our family in the chronological order of the events that have occurred in the past months.
Today I have decided to just post. I will back fill later with everything else that has happened since February. Maybe!
I want to chronicle this day by posting a video I found earlier in the week of Eli when he was 3 years old. He has made such huge gains over the last 6 years, but because God's timeline of development for Eli is expanded, we often lose sight of his progress.
Additionally, I want to note what a great time we had with the Skahan family last Sunday afternoon and evening. Lesley and Matt have three boys. Jake, Gage and Mason. Mason turned 3 this summer. Mason has PTHS, like Eli! We were connected with the Skahan family through the genetics clinic at CMH.
We first met with them over the summer and it was a wonderful connection. Lesley and I have so many things in common and we keep finding more...we even both have collections of snowmen! It was so funny when we made this discovery...we just laughed and finished one another sentences about why we collect them. "They represent winter, not just Christmas. You can keep them out longer!"
They traveled to Baldwin for our annual Maple Leaf Festival. We walked the cobblestone streets of Baldwin, gazing upon all the goodies. Of course we had to stop for Caramel Apples which were a big hit! Eli truly enjoyed the company of Jake and Gage and they were having fun making him laugh with a game of 'Tag, you're it!" Mason has made great progress since our last visit; he was a joy to be around. We decided to go out for dinner at El Mezcal in Ottawa (on their way toward home). It was great food with great friends, sharing our knowledge of this path of Pitt Hopkins Syndrome as well as laughter and encouragement.
Yesterday I wrote the following to Lesley:
"The fundamental building blocks of the kingdom are relationships. Not programs, systems or productivity, but inconvenient, time-consuming, intrusive relationships. The kingdom is built on personal involvement that disrupts schedules and drains energy. When I enter into redemptive relationships with others, I lose much of my capacity to produce desired results with a minimum expenditure of energy, time, money or materials. In short, relationships sabotage my efficiency. A part of me dies. Is this perhaps what our Lord meant when He said we must lay down or lives for each other?"
LOVE THAT!!! Relationships are messy and the really good ones take LOTS of time to develop and grow. They are worth every moment! This quote is additional reinforcement that in order to have the abundant life God promises, we must live life as He directs.
May you go through this day acknowledging your blessings!!
A few pictures from 2012:
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Hello to anyone who might read my blog -
I read a blog post this morning LLH DESIGNS about perfectionism vs. excellence. My perfectionist tendencies, I think, are what keep me from posting! I feel an overwhelming desire to post here about our family in the chronological order of the events that have occurred in the past months.
Today I have decided to just post. I will back fill later with everything else that has happened since February. Maybe!
Additionally, I want to note what a great time we had with the Skahan family last Sunday afternoon and evening. Lesley and Matt have three boys. Jake, Gage and Mason. Mason turned 3 this summer. Mason has PTHS, like Eli! We were connected with the Skahan family through the genetics clinic at CMH.
We first met with them over the summer and it was a wonderful connection. Lesley and I have so many things in common and we keep finding more...we even both have collections of snowmen! It was so funny when we made this discovery...we just laughed and finished one another sentences about why we collect them. "They represent winter, not just Christmas. You can keep them out longer!"
They traveled to Baldwin for our annual Maple Leaf Festival. We walked the cobblestone streets of Baldwin, gazing upon all the goodies. Of course we had to stop for Caramel Apples which were a big hit! Eli truly enjoyed the company of Jake and Gage and they were having fun making him laugh with a game of 'Tag, you're it!" Mason has made great progress since our last visit; he was a joy to be around. We decided to go out for dinner at El Mezcal in Ottawa (on their way toward home). It was great food with great friends, sharing our knowledge of this path of Pitt Hopkins Syndrome as well as laughter and encouragement.
Yesterday I wrote the following to Lesley:
I adore my sweet Eli and if I could spare him all pain of this world, I would. If I could keep him sheltered from unkind words and awkward stares, I would and to a certain degree, I do. But the truth is, God sent him exactly how he is with a very specific purpose. God’s plan for Eli is for Eli…not me. The Lord has and will work through Eli to touch the lives of people in a way that no one else could do. This little boy has rocked my world. A paradigm shift has taken place and in order for me to be who God wants me to be, I must embrace this life I am living with great joy and thankfulness. I have good days and some bad days, but when it comes down to it, I know I am blessed beyond my own knowledge and awareness of blessings. I am honored to have been chosen for this work and humbled at the same time.
In the words of my favorite radio evangelist, Adrian Rogers:
"We have the right to choose. We do not have the right to not choose. We do not have the right to choose the consequences for the choices we make."
I posted the above quote to Facebook a few weeks ago...it seems fitting in the political climate of 2012.
I also posted this next quote from the book Theirs is The Kingdome by Robert D. Lupton as it really spoke to me.
"The fundamental building blocks of the kingdom are relationships. Not programs, systems or productivity, but inconvenient, time-consuming, intrusive relationships. The kingdom is built on personal involvement that disrupts schedules and drains energy. When I enter into redemptive relationships with others, I lose much of my capacity to produce desired results with a minimum expenditure of energy, time, money or materials. In short, relationships sabotage my efficiency. A part of me dies. Is this perhaps what our Lord meant when He said we must lay down or lives for each other?"
LOVE THAT!!! Relationships are messy and the really good ones take LOTS of time to develop and grow. They are worth every moment! This quote is additional reinforcement that in order to have the abundant life God promises, we must live life as He directs.
May you go through this day acknowledging your blessings!!
A few pictures from 2012:
A virtual 5K completed in honor of Mallory Werner!
On the beach in Naples, FL for spring break!
B-E-A-Utiful!
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Hunter, Eli and Blake...and to think Blake is even taller now than he was for this picture in June!!
The Baldwin Lion's Club gave Eli a new bike!
Cooper (cause he's a mini) joined our family in May.
George, the gorgeous, joined our family in late July.
Eli and Mason at the Maple Leaf Festival!
This is a video of Eli riding his bike...before he got the new bike...he is a real pro now...I will try to find a more recent video for my next message!
Starting again...again
I created a beautiful post...but neglected to hit save prior to adding one last video...and it crashed. All of what I wrote is gone. So, I am starting again...again. This time hitting save after each paragraph!
Wednesday, February 29, 2012
Leap Day
Can you see that black line across the sky? Weird weather phenomenon. The weather guys at the Fox4 have never seen anything like it. Weird. I have a video too, but can't get it to load.
It's Leap Day, which reminded me that it is the last day of February. So, I am sliding in sideways with my 2nd post of 2012.
Lots of updates in February. I have shared some of them with some people but probably not all of them with anyone:)
Genetics Clinic appointment - I wrote the following the day after the appointment, so I will just paste it in here.
2-13-12
Today was the scheduled day to meet with the CMH Genetics Clinic. I didn’t really want to go, but I had already rescheduled this appointment once. Eli wasn’t feeling well, but seems to be OK for the trip to KC. Scott was available to go and might not be available later as he starts his new job next week. So, we went.
Let’s back up a few years. In 2006, Dr. Hoffman, the developmental pediatrician, was the first to suggest genetic testing. I remember feeling ill just thinking about it. Having our child poked and prodded was not what we wanted to do. We were fairly certain that it wouldn’t change our therapies or treatments. I wasn’t at peace. So, we just put it on the back burner.
Fast forward to 2010, through events outlined in my blog in December 2010, we decided to proceed with the genetic tests. In late November (the day after Thanksgiving) Blake and I took Eli for the blood draw. It was no big deal. By December, we had the results: Pitt Hopkins Syndrome. Now, know that the basic DNA test showed NO ABNORMALITIES. It was the Microarray test that determined Eli’s partial deletion of chromosome 18, specifically section 21.2. Get this…the Microarray test wasn’t developed until 2007. So that ‘lack of peace’…I believe that was God saying, “wait”. We were offered the opportunity to have the same tests done on Scott and I; both of our tests came back as normal.
July 2011, we are scheduled to go to the Genetics Clinic at CMH. It was summer, there was a lot of activities going on, it was a busy time AND I didn’t want to go to the appointment. So, I called to cancel. I asked to be rescheduled for November. They told me that they would have to call me back, that a new geneticist was coming to take new patients, so we would have to wait until they had her schedule. They called me back in December, we scheduled for February 13, 2012.
Now we are back to today!
As mentioned, Eli wasn’t feeling well. We made our way into CMH South, up the elevator to the Genetics Clinic, registered and Eli started watching the big TV with a Disney program showing. I went to the bathroom and I prayed. You see it snowed last night, so with the hurrying out the door and driving in unfavorable conditions and the talk radio program playing, I hadn’t prayed. I prayed that we wouldn’t be wasting our time coming to this appointment. That the Lord knew my heart and my uneasiness about this appointment. To take any worry or anxiety from me. He is SO GOOD to answer our prayers according to our needs!!!
We were called to go back to an exam room. She was going to weigh Eli, but asked us to remove his shoes. Well, Eli has braces, so that isn’t as easy a request as one might think. I asked if we could put our things down to then sit and take his shoes off. Scott sat Eli on a chair and he gagged. Now, Eli has been sick, so we were already on guard. But really, this is Eli’s signal for “I am uncomfortable with this situation.” He was nervously walking around the room, down the hall, etc. We tried to go back to the room a few more times, but he just kept gagging. So, Scott and Eli went back to the waiting area and watched TV.
The first gal came out to see us in the waiting room. Her name is Holly Welsh. She said she could just meet with me while Scott and Eli watch TV. She left for a bit, but then motioned for me to join her in the exam room. We started talking and she asked me to tell her how we ended up in the genetics clinic. I just started giving her the high level overview of our journey with Eli. Along the way I mentioned that I believe things happen for a very specific purpose and that they happen when they should happen. I went on to complete my outline. She asked a few questions, then said, “you know how you said you think things happen for a specific purpose?” I said, “Yes?” She went on to say that Dr. Holly Ardinger is not only a renowned geneticist, but that she was recently asked to write the official documentation for Pitt Hopkins Syndrome on http://www.genereviews.org/. WOW!!!
You see, this is HUGE!! Eli is 1 of 112 officially diagnosed cases of PTHS in the WORLD...so, he is 1 of 112 in 7 BILLION people. The fact that they even have a name for it is a miracle, but that we met with a geneticist who could not only discuss the test results, but who could speak specifically to THIS syndrome. She had only met 2 children with PTHS in her entire career. Meeting Eli at this very moment in time was nothing short of a miracle...really! This is additional confirmation that we are exactly where we are supposed to be!!
SOOOO…THANK YOU JESUS!!! I am so grateful to be part of this great orchestrated work. So grateful to ‘listen’ when you speak…even when I don’t acknowledge that it is you speaking to me. I know Your voice. I hear when you speak. You know it when you know...and I know it!!
And if that wasn't enough, on 2/17/12 we (Scott and I as well as a whole room full of Team Eli folks and Eli) met with Bob and Jane from the KS School for the Blind. They have come to meet with Eli several times and evaluated his vision from a functional and processing perspective. We know Eli can see, though he has no depth perception and is near sighted, but the reason for their involvement is to evaluate to determine if he is eligible from additional services from their organization. He is! Eli is in the 'official' registry as 'legally blind'. I don't think one is normally elated by a title like this, but from my perspective, any additional services provided to Eli that don't require additional capitol outlay from us...that is a good thing!! I really don't know yet what additional services Eli will receive, but the initial support alone has been helpful. Any group whose focus is to help people become as independent as possible, is welcome to join Team Eli!
Let's see...what else?? Oh, Scott started a wonderful new job with a company in Lawrence. Only 15-20 minutes drive and he comes home to have dinner every night...even on rugby practice nights!! He's happy, they are happy, PRAISE GOD!!!
Blake's team finished up basketball season a few weeks ago. It was a rough start, well, rough middle really, but they won 4 of their last 5 games. So, all's well that ends well! He played very well, especially since he hasn't played basketball since he was 6. He loved it and is now going to also run track. Football, Basketball, Track and Swimming (2 more sessions to be qualified to apply to be a lifeguard)...he gets all that from Scott:) When I get the basketball videos off my phone I will post them.
The boys and I are heading to Bonita Springs FL for a fun filled 7 days in the sun and surf...well, with the exception of travel days...so really only 5 days...but who cares, 5 days in the sun and surf!!!! Scott's folks are living there this winter and we get to benefit! Seeing dolphins, collecting shells, eating seafood, going to the zoo and if Blake reaches his goal at school, deep sea fishing, too!
I think I am finally posting my last 'lesson' from the message delivered in May 2007. Here it is:
6) PRAY FIRST!!!! Don’t freak out first. Pray first! This one is the latest addition to the list and I am still learning it. Learn it with me. Pray first! When you do something you shouldn’t do…pray first. When things don’t go as you planned…pray first! When something unexpected happens, good or bad…pray first before you take another step.
This scripture reference has become my mantra. I repeat over and over to myself and to anyone who tells me their worries.
Philippians 4
6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
Do not be anxious about anything (nothing, not one thing!) but in everything (all things, big and small) by prayer (we know about prayer) and petition (over and over) with thanksgiving (oh…this is a big one…we have to be thankful to the Lord even for things we don’t like or want…remember, He wants us closer to HIM) present your requests to God.
Until March...take care! Let it SPRING!!!
Lots of updates in February. I have shared some of them with some people but probably not all of them with anyone:)
Genetics Clinic appointment - I wrote the following the day after the appointment, so I will just paste it in here.
2-13-12
Today was the scheduled day to meet with the CMH Genetics Clinic. I didn’t really want to go, but I had already rescheduled this appointment once. Eli wasn’t feeling well, but seems to be OK for the trip to KC. Scott was available to go and might not be available later as he starts his new job next week. So, we went.
Let’s back up a few years. In 2006, Dr. Hoffman, the developmental pediatrician, was the first to suggest genetic testing. I remember feeling ill just thinking about it. Having our child poked and prodded was not what we wanted to do. We were fairly certain that it wouldn’t change our therapies or treatments. I wasn’t at peace. So, we just put it on the back burner.
Fast forward to 2010, through events outlined in my blog in December 2010, we decided to proceed with the genetic tests. In late November (the day after Thanksgiving) Blake and I took Eli for the blood draw. It was no big deal. By December, we had the results: Pitt Hopkins Syndrome. Now, know that the basic DNA test showed NO ABNORMALITIES. It was the Microarray test that determined Eli’s partial deletion of chromosome 18, specifically section 21.2. Get this…the Microarray test wasn’t developed until 2007. So that ‘lack of peace’…I believe that was God saying, “wait”. We were offered the opportunity to have the same tests done on Scott and I; both of our tests came back as normal.
July 2011, we are scheduled to go to the Genetics Clinic at CMH. It was summer, there was a lot of activities going on, it was a busy time AND I didn’t want to go to the appointment. So, I called to cancel. I asked to be rescheduled for November. They told me that they would have to call me back, that a new geneticist was coming to take new patients, so we would have to wait until they had her schedule. They called me back in December, we scheduled for February 13, 2012.
Now we are back to today!
As mentioned, Eli wasn’t feeling well. We made our way into CMH South, up the elevator to the Genetics Clinic, registered and Eli started watching the big TV with a Disney program showing. I went to the bathroom and I prayed. You see it snowed last night, so with the hurrying out the door and driving in unfavorable conditions and the talk radio program playing, I hadn’t prayed. I prayed that we wouldn’t be wasting our time coming to this appointment. That the Lord knew my heart and my uneasiness about this appointment. To take any worry or anxiety from me. He is SO GOOD to answer our prayers according to our needs!!!
We were called to go back to an exam room. She was going to weigh Eli, but asked us to remove his shoes. Well, Eli has braces, so that isn’t as easy a request as one might think. I asked if we could put our things down to then sit and take his shoes off. Scott sat Eli on a chair and he gagged. Now, Eli has been sick, so we were already on guard. But really, this is Eli’s signal for “I am uncomfortable with this situation.” He was nervously walking around the room, down the hall, etc. We tried to go back to the room a few more times, but he just kept gagging. So, Scott and Eli went back to the waiting area and watched TV.
The first gal came out to see us in the waiting room. Her name is Holly Welsh. She said she could just meet with me while Scott and Eli watch TV. She left for a bit, but then motioned for me to join her in the exam room. We started talking and she asked me to tell her how we ended up in the genetics clinic. I just started giving her the high level overview of our journey with Eli. Along the way I mentioned that I believe things happen for a very specific purpose and that they happen when they should happen. I went on to complete my outline. She asked a few questions, then said, “you know how you said you think things happen for a specific purpose?” I said, “Yes?” She went on to say that Dr. Holly Ardinger is not only a renowned geneticist, but that she was recently asked to write the official documentation for Pitt Hopkins Syndrome on http://www.genereviews.org/. WOW!!!
You see, this is HUGE!! Eli is 1 of 112 officially diagnosed cases of PTHS in the WORLD...so, he is 1 of 112 in 7 BILLION people. The fact that they even have a name for it is a miracle, but that we met with a geneticist who could not only discuss the test results, but who could speak specifically to THIS syndrome. She had only met 2 children with PTHS in her entire career. Meeting Eli at this very moment in time was nothing short of a miracle...really! This is additional confirmation that we are exactly where we are supposed to be!!
SOOOO…THANK YOU JESUS!!! I am so grateful to be part of this great orchestrated work. So grateful to ‘listen’ when you speak…even when I don’t acknowledge that it is you speaking to me. I know Your voice. I hear when you speak. You know it when you know...and I know it!!
And if that wasn't enough, on 2/17/12 we (Scott and I as well as a whole room full of Team Eli folks and Eli) met with Bob and Jane from the KS School for the Blind. They have come to meet with Eli several times and evaluated his vision from a functional and processing perspective. We know Eli can see, though he has no depth perception and is near sighted, but the reason for their involvement is to evaluate to determine if he is eligible from additional services from their organization. He is! Eli is in the 'official' registry as 'legally blind'. I don't think one is normally elated by a title like this, but from my perspective, any additional services provided to Eli that don't require additional capitol outlay from us...that is a good thing!! I really don't know yet what additional services Eli will receive, but the initial support alone has been helpful. Any group whose focus is to help people become as independent as possible, is welcome to join Team Eli!
Let's see...what else?? Oh, Scott started a wonderful new job with a company in Lawrence. Only 15-20 minutes drive and he comes home to have dinner every night...even on rugby practice nights!! He's happy, they are happy, PRAISE GOD!!!
Blake's team finished up basketball season a few weeks ago. It was a rough start, well, rough middle really, but they won 4 of their last 5 games. So, all's well that ends well! He played very well, especially since he hasn't played basketball since he was 6. He loved it and is now going to also run track. Football, Basketball, Track and Swimming (2 more sessions to be qualified to apply to be a lifeguard)...he gets all that from Scott:) When I get the basketball videos off my phone I will post them.
The boys and I are heading to Bonita Springs FL for a fun filled 7 days in the sun and surf...well, with the exception of travel days...so really only 5 days...but who cares, 5 days in the sun and surf!!!! Scott's folks are living there this winter and we get to benefit! Seeing dolphins, collecting shells, eating seafood, going to the zoo and if Blake reaches his goal at school, deep sea fishing, too!
I think I am finally posting my last 'lesson' from the message delivered in May 2007. Here it is:
6) PRAY FIRST!!!! Don’t freak out first. Pray first! This one is the latest addition to the list and I am still learning it. Learn it with me. Pray first! When you do something you shouldn’t do…pray first. When things don’t go as you planned…pray first! When something unexpected happens, good or bad…pray first before you take another step.
This scripture reference has become my mantra. I repeat over and over to myself and to anyone who tells me their worries.
Philippians 4
6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
Do not be anxious about anything (nothing, not one thing!) but in everything (all things, big and small) by prayer (we know about prayer) and petition (over and over) with thanksgiving (oh…this is a big one…we have to be thankful to the Lord even for things we don’t like or want…remember, He wants us closer to HIM) present your requests to God.
Until March...take care! Let it SPRING!!!
Tuesday, January 31, 2012
Blogging again in 2012
The pictures look like they loaded in the reverse order...so most recent to oldest.
Well, 2011 is gone and I only made it to March with my monthly blog updates:) Maybe 2012 will be better...we will see! So, to catch up, here is a list of happenings from 2011. In addition to these things and because this is my blog, I will add that I completed six 5K races last year! Never ever would have guessed that to happen! Planning to do most of the same runs this year and maybe step it up a notch.
Many lessons learned in 2011, I am sure I have MANY more to go. However, I am a woman of strength. I read and then reposted on Facebook, the following:
"A strong woman knows she has strength enough for the journey, but a woman of strength knows it is in the journey where she will become strong."
I KNOW this to be true!! The journey - sometimes joyful, sometimes not, but alway good when I finally get where HE is directing me!
2011
Christmas cards were crossed from the ‘to do’ list in early December, but the Happy New Year’s card made it to you! Hope you reflect on your 2011 blessings and are hopeful for a 2012 of peace and joy! 2011 was a busy year for the Adamson family; the below 2011 Year in Review is for you to know what happened with us, but also to chronicle the year for our family.
January: It snowed. The boys played in the snow; it was Eli’s first experience in the snow. Mouse (our cat…who should have been named Willie ‘cause he’s a WILDcat!) turned 6 months old. Eli’s has his 4th pair of foot braces. Back to school…back to work!
February: Except for one freakishly warm day, it was COLD…a very long month. Rugby season started.
March: SPRING BREAK!! Amy, Blake and Eli flew to Biloxi, MS to join Grandma and Grandpa McManus for a visit with family in Ocean Springs, MS. Good visiting, good food, fun at the beach and a quick visit with our family in Sikeston MO on the drive home. Eli participated in roller skating and Hippo Therapy!
April: Easter!! We hosted the Easter festivities and were joined by Heather, Doug and Amy’s parents for church, dinner and an Easter egg hunt. It is getting warmer…finally!! Scott turns 43!!
May: Amy attended the Lighthouse Baptist Church Mother Daughter banquet accompanied by her Mom and Diane Ecklund. End of school concerts, summer birthday party for Eli at school (A bubble party…the kids LOVED it…especially Eli), rugby playoffs, hired a summer nanny (Catherine Gerstner) and prepared for Myrey Christensen to move in for the summer. Myrey arrived Memorial Day weekend.
June: NASCAR, KSU football camp, Heather & Doug got engaged, Eli’s 8th birthday lunch, CARS 2 and fountain playing party! Swimming lessons. Jasmine, a6 year old champion corgi, joined our family!
July: Visited Grandma and Grandpa McManus for July 1-3, Pastor and Denise’s July 4th picnic, Jr. High football camp, Myrey and Blake go to Youth Camp in Colorado for a week, Amy turns 41!!
August: We went to Denver for several days: visited Duanna’s family, hiked, ate fun foods, and watched BIG rugby…FUN TRIP! Back to school, then rugby and football seasons started. Eli’s new after school nanny, Bailey Smith, started working for us.
September & October: Lots of Jr. High football, Blues rugby and Hippo Therapy. Amy, Blake and Eli went on fall break to Salina, KS, then on to Kannapolis Lake to visit PawPaw and Joe at the rendezvous, then to Grammie and PawPaw’s for a night. That Rolling Hills Animal Adventure Park is much bigger than it appears!
November: The end of Jr. High football season, Blues rugby season and fall Hippo Therapy. We celebrated our 15th anniversary and took our annual anniversary/family trip to Big Cedar Lodge near Branson MO. Grandma and Grandpa McManus joined us. Biggest year yet for Operation Christmas Child at Lighthouse Baptist Church: 190 boxes! Kaytee Clark, a Baker Special Ed major, now helps with Eli a few days each week. BIG THANKSGIVING!! All 17 members of the Howle family were together for the weekend celebration. Amy’s comment, “It was my best Thanksgiving ever!”
December: Go CATS!! Amy traveled to Manhattan KS for the KSU vs. Iowa State game with college roommate, Tamara (aka Tammy) Butler Miller, Ekwensi Griffith and Eric Gallon…”A responsibility-free day!” BLAKE TURNED 13 YEARS OLD!! Amazing how the years have passed so quickly…he is a JOY and we are so proud of the wonderful young man he is! Christmas Eve in Lost Springs at Grammie and PawPaw’s house joined by Matt, Crysta, Isaac, Lily and Emma! Christmas at home. Blake traveled to Tulsa with the Youth Group for the T3 Youth Rally. Grammie visited for a few days. Happy New Year! Spent New Year’s Day with the Griffith family!!
2012
May the New Year be full of peace, laughter, growth and blessings! If you have any plans to be near KC in 2012, please contact us!
Christmas cards were crossed from the ‘to do’ list in early December, but the Happy New Year’s card made it to you! Hope you reflect on your 2011 blessings and are hopeful for a 2012 of peace and joy! 2011 was a busy year for the Adamson family; the below 2011 Year in Review is for you to know what happened with us, but also to chronicle the year for our family.
January: It snowed. The boys played in the snow; it was Eli’s first experience in the snow. Mouse (our cat…who should have been named Willie ‘cause he’s a WILDcat!) turned 6 months old. Eli’s has his 4th pair of foot braces. Back to school…back to work!
February: Except for one freakishly warm day, it was COLD…a very long month. Rugby season started.
March: SPRING BREAK!! Amy, Blake and Eli flew to Biloxi, MS to join Grandma and Grandpa McManus for a visit with family in Ocean Springs, MS. Good visiting, good food, fun at the beach and a quick visit with our family in Sikeston MO on the drive home. Eli participated in roller skating and Hippo Therapy!
April: Easter!! We hosted the Easter festivities and were joined by Heather, Doug and Amy’s parents for church, dinner and an Easter egg hunt. It is getting warmer…finally!! Scott turns 43!!
May: Amy attended the Lighthouse Baptist Church Mother Daughter banquet accompanied by her Mom and Diane Ecklund. End of school concerts, summer birthday party for Eli at school (A bubble party…the kids LOVED it…especially Eli), rugby playoffs, hired a summer nanny (Catherine Gerstner) and prepared for Myrey Christensen to move in for the summer. Myrey arrived Memorial Day weekend.
June: NASCAR, KSU football camp, Heather & Doug got engaged, Eli’s 8th birthday lunch, CARS 2 and fountain playing party! Swimming lessons. Jasmine, a6 year old champion corgi, joined our family!
July: Visited Grandma and Grandpa McManus for July 1-3, Pastor and Denise’s July 4th picnic, Jr. High football camp, Myrey and Blake go to Youth Camp in Colorado for a week, Amy turns 41!!
August: We went to Denver for several days: visited Duanna’s family, hiked, ate fun foods, and watched BIG rugby…FUN TRIP! Back to school, then rugby and football seasons started. Eli’s new after school nanny, Bailey Smith, started working for us.
September & October: Lots of Jr. High football, Blues rugby and Hippo Therapy. Amy, Blake and Eli went on fall break to Salina, KS, then on to Kannapolis Lake to visit PawPaw and Joe at the rendezvous, then to Grammie and PawPaw’s for a night. That Rolling Hills Animal Adventure Park is much bigger than it appears!
November: The end of Jr. High football season, Blues rugby season and fall Hippo Therapy. We celebrated our 15th anniversary and took our annual anniversary/family trip to Big Cedar Lodge near Branson MO. Grandma and Grandpa McManus joined us. Biggest year yet for Operation Christmas Child at Lighthouse Baptist Church: 190 boxes! Kaytee Clark, a Baker Special Ed major, now helps with Eli a few days each week. BIG THANKSGIVING!! All 17 members of the Howle family were together for the weekend celebration. Amy’s comment, “It was my best Thanksgiving ever!”
December: Go CATS!! Amy traveled to Manhattan KS for the KSU vs. Iowa State game with college roommate, Tamara (aka Tammy) Butler Miller, Ekwensi Griffith and Eric Gallon…”A responsibility-free day!” BLAKE TURNED 13 YEARS OLD!! Amazing how the years have passed so quickly…he is a JOY and we are so proud of the wonderful young man he is! Christmas Eve in Lost Springs at Grammie and PawPaw’s house joined by Matt, Crysta, Isaac, Lily and Emma! Christmas at home. Blake traveled to Tulsa with the Youth Group for the T3 Youth Rally. Grammie visited for a few days. Happy New Year! Spent New Year’s Day with the Griffith family!!
2012
May the New Year be full of peace, laughter, growth and blessings! If you have any plans to be near KC in 2012, please contact us!
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