Busy, Busy, Busy...

One out of office auto reply and and a 'while I am away' statement to write and I am officially on vacation until next Wednesday. So, if I don't reply to your email it's because I don't plan to log in again for at least a few days. I will see your email on my phone though!!

I am looking forward to this break from work, school and our hectic regular routine. It will be nice to wake up early to make a big breakfast tomorrow for our friend Ekwensi who is coming to see us in the morning. It will be great to see Dyan for lunch and even making some exchanges sounds nice...just the boys and me.

There is still wrapping to do and cards to be mailed, but I am looking forward to relaxing while I complete these 'to do' items!

After my last blog update I received a phone call from Theresa Pauca, she is Victor's mom. Victor also has Pitt Hopkins Syndrome (PTHS). It was really wonderful to speak with her and to visit about our sweet boys. I am just blown away by thier similarities. They look alike, the like the same things, they have similar sleep patterns, it is just wild. If you want to read more about it, go to http://www.pitthopkins.org/ and if you go to the bottom left of the screen you can click on Victor's run, from there you can find Victor's blog. Note the shirt Victor is wearing...I just bought that same shirt for Eli! Even the PTHS mother's think alike!

Here is the next excerpt from my May 2007 message:
By 15 months Eli could sit up by himself. Eli’s hearing improved dramatically once tubes were inserted in both ears at about 18 months. By 2 Eli was weight bearing on his legs and could take steps with support. By 2 ½ he started crawling on all fours. He got his first pair of glasses when he was nearly 3 and had surgery in November 2006 to correct his ability to focus with both eyes equally. By 3 1/2 Eli could crawl everywhere, he walked with support and started making verbalizations. Eli is now 4 1/2. He can take over 30 independent steps. His communication skills have increased. He is more aware of his environment and wants to be engaged with our family and his friends. We had a milestone day last month. For the first time ever, Eli and I walked down our long gravel driveway to get the mail. A total thrill!

12-21-10: He can now walk around without support. His receptive language is significantly improved. He communicates with us through gestures (hands me his cup if he wants more to drink), claps for more, laughs a lot, gives unsolicited hugs, blows kisses and often will wave good bye.

In late April, 2005, I was to the breaking point in trying to work full time, take care of my family and do the extras for Eli that would allow me to sleep at night. Balance became a primary objective for me. In June, 2005 I started taking advantage of FMLA (Family Medical Leave Act) on an intermittent basis. I reduced my work week and consequently my pay at an equal percentage, but by having Thursdays off to interact with Eli’s therapists and teachers, and to take him to the other therapies, I became much better able to support his continued development and give him every opportunity at our disposal.

In September 2009, the FMLA policy at Sprint changed. I had to go back to working full time or use my vacation time vs. time without pay. Since I don’t consider doing therapy with my son vacation, nor do I want to miss family vacations, I went back to work full time at Sprint. I still go to Eli’s school each week during his PT/OT or Speech Therapy sessions and it has worked out well. Plus, it was nice to go back to my full salary. Eli is in all day Kindergarten now and doesn’t need mom quite as much as he once did. God’s perfect timing, again!

Eli has transitioned beautifully from the Douglas County program to the Baldwin City Preschool program offered by our school district. He is essentially getting 12 hours of therapy a week at school plus the work we do at daycare, at home, through Hippo Therapy, Interactive Metronome Therapy and Mom facilitated Aqua Therapy. Oh, and we are part of an Augmentative Speech devise research program through the Life Span Institute at KU.

12-21-10: Now that Eli is in school full time he is now getting essentially 30 hours of therapy each week at school plus the work we do at home.

Since April 2005 I have been writing down the lessons the Lord has taught me. Tonight, I am going to share them with you. I believe that the Lord has me here to communicate what I have learned through this experience with all of you. I can honestly tell you that I know God has placed me exactly where He wants me. He gave me the husband he wanted me to have, he personally selected my children for me, and He moved us to the wonderful town onto our little piece of heaven on earth. Our lives are far from perfect from the world’s view, but I know that God’s plan is perfect.

Until next time...may God hold you in the palm of his hand!

At the end of this new day...

In 7.5 years we have not known why Eli is the way he is. We have seen specialist after specialist, changed his diet, filled him with supplements, B12 shots and chelation therapy, but it was all part of a guessing game. This diagnosis is a really big deal. Today is only day 1...I really have no idea what it really means to our family, but I know it is big.

So far today I have decided a two things:

1) This genetic test confirmed that I did nothing wrong...even though I know I didn't and that I did everything right that was within my control, this genetic diagnosis takes it completely out of my hands. It is also confirmation that God created Eli exactly how he was supposed to be and that it is a privilege to have been chosen to be Eli's mother. Not that I didn't already think this...but now I have confirmation.

2) I am grateful to have learned a few years ago that "you can only absorb the information when you can absorb the information". So I don't have to go through the guilt of beating myself up for not having done the genetic test sooner. In fact, I am so glad we didn't. I wouldn't have learned all I have learned over these years. I wouldn't have met the people I have met or become the person I have become.

It's a whole new day!

Last night as I was brushing my teeth before heading to Blake's vocal music program, I received a call from Dr. Hughes.

...Let's back up...a few months ago my mom told me to be sure to watch the episode of Extreme Makeover Home Edition. I was busy and didn't even get the message until it was over. Mom and her friend Diane really wanted me to watch it specifically because of the little boy who was in the family. He had Prader-Willi Syndrome. The next day Scott sent me a link about the syndrome and we both agreed it wasn't Eli. However, it did prompt me to search a bit further. I found a hypotonia center in Maryland at John's Hopkins. I sent that to Scott. It noted that there are over 400 syndromes where hypotonia is a characteristic. Scott read many of the syndrome descriptions and found one that sounded like Eli. 22Q13 was the name. I crafted an email to send to Dr. Hughes and Dr. Brown to ask them to find out more and specifically to direct us regarding the specific tests required to determine if Eli in fact has this syndrome. After a few weeks and a visit to Dr. Hughes (I think this was just after school started in August), we received a call from the genetics department at Children's Mercy. A week or so later we received an official order for a blood draw. The Friday after Thanksgiving we went to Children's Mercy South to have Eli's blood drawn for these tests. Now we are back to last night...

Dr. Hughes told me that the test results were in. They showed that Eli doesn't have 22Q13, but that he has Pitt Hopkins Syndrome. I had to leave after the phone call to get to the music program so though I wanted to head directly to my computer, I didn't. However, while waiting for the program to begin, I looked it up on my phone. There are many sites that talk about the definition of the syndrome, but the one I have found most comprehensive is http://www.pitthopkins.org/ This is a website started by 2 moms of boys with PTHS. It is a family network. I have submitted a membership application and was approved.

I think I will start at today and each time I post I will also write about something I have learned while on this journey. I am pasting in an excerpt from the message I delivered to the ladies of our church in May 2007. I will post a bit each time...no one wants to read my whole 'book' in one blog post.

Lighthouse Baptist Church Mother/Daughter banquet May 2007
In keeping with the theme, I will first confess that I am not an athlete. I do admire those who participate in team sports and exercise regularly with great joy, but I am not part of that group. I can’t tell you, beyond the obvious, what is required to win a race. I don’t know how to break down the elements of a training program to even run a race. However, I can tell you about endurance, strength and victory through Jesus Christ.

-I inserted some updates throughout to bring this to present day -Just before my 40th birthday on July 30, 2010, I started walking more consistently. It is December now and I get up 3 X per week to work out at 6AM. I can now run over 1 mile!!! This is a huge accomplishment for me. Per the above, 3 years ago I knew nothing about running a race. Now I am training for one. My goal is to run 3.25 miles in less than 30 minutes. I am doing what I never even imagined I would want to do and I love it. If I didn’t I would NEVER get up at 6AM to go do it.

My name is Amy Adamson and I am 37 years old (now 40 years old). I am your typical first born, type A personality. I have always set goals and achieved most of them. I graduated high school, went to Kansas State University, graduated in four years, got my first position with Sprint before I graduated, moved to KC, bought a car, bought a house, got married, had a child, built a house in the country, had another child…life was working out just as I had planned! Of course there were some bumps along the way; there were jobs I applied for and didn’t get, my husbands career changed from roofing contractor to computer genius (which was accompanied by a student loan and some serious anxiety), your basic dose of ‘marriage is not quite as easy as I thought it would be’ and oh…my second child has an undiagnosed developmental delay that has changed my world!

I have been married to my husband, Scott, for 11 (14) years. Scott and I both come from middle class Christian homes and we have known each other since high school. We are Missouri kids from Jefferson City. We have two children, Blake, who is 9 (12) and Eli is 4 (7). I have worked for Sprint for nearly 16 (19) years.

Scott and I were married in November of 1996 and in April of 1998 we found out that we were going to have our first child. Although I was a bit nervous, I had an overwhelming since of gratitude. I prayed for my unborn child and thanked God over and over for giving us the opportunity to raise one of His children. I feel compelled to mention that having Blake molded me into a more calm and patient person than I ever imagined possible. He brought a joy to my life that could never have been explained to me in words. All the moms in the room…you know what I mean. My heart grew so much that it often seemed it was beating outside my chest.

Many things transpired over the next few years, including our move to Baldwin City in May 2002 to our new home in the woods. Remember, we are Missouri kids living in Kansas…we NEEDED trees!! A dream had been fulfilled.

In addition to wanting to get out of the city, another motivator for the move was to have more space to bring another child into our home. On June 27th, 2003, Elijah James was born. Aside from the challenges that all new and growing families go through, we knew we were very blessed.

It was at Blake’s 5th birthday party in December 2003 that we realized things weren’t quite right with Eli. He was 6 months old and still wasn’t sitting up on his own. After a few more visits to our family doctor we were referred to two different neurologists, one at KU Med and the other at Children’s Mercy. We saw them both. Ultimately, there only conclusion was that Eli is hypotonic, which means he has low muscle tone.

I had never even heard of Hypotonia. Hypotonia involves decreased muscle tone. Infants with hypotonia seem floppy and feel like a "rag doll". Hypotonic infants rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent in the floppy infant with the head falling to the side, backward, or forward. Infants with normal tone can be lifted with the parent's hands placed under the armpits, while hypotonic infants tend to slip between the hands as the infant's arms rise unresistingly upward.

The doctors couldn’t tell us why Eli was hypotonic or give any diagnosis. I am sure you can understand how news of this nature would impact a parent. There is something wrong with my child, no one can tell me what caused it or what we can expect. They said, “The possibility exists that he will grow out of it, so just keep doing what you are doing.” In addition to enrolling Eli in the Douglas County Infant/Toddler services which allowed us to work with a Physical Therapist, an Occupational Therapist, a Speech Therapist, a dietitian and an Early Childhood development teacher, I think I held my breath for the next 16 months. After much prayer and begging the Lord for a miracle, I decided I had better quit holding my breath. I realized that God did not just choose me to be Eli’s mom, but He chose Eli to be MY son. I realized that there were probably some lessons I should be learning through this experience.


More later...was going to load some pictures...but couldn't get it to work...will try again later