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!
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!
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