Jordan, Lucas and mom went to Jacksonville Tuesday for an early Wed. morning appointment at Hope Haven Down Syndrome Clinic. We map quest a new path for our travel and had recommendations from friends this would be a better way to travel. It went pretty much uneventful other than my doubting myself and stopping more than once to re-map quest. A couple stops for potty and refill drinks and potty and drink and potty were getting a bit old for me; the one who likes to push on to the end no matter what... We arrived at Ronald McDonald house after being on the road 8 hours The boys walked in the front door at 7 pm to be overwhelmed with toys, food and fun! I was beat, we had a check in video and tour to take because it was our first time there. The boys wanted nothing to do with videos or tours..the playroom was found and even Lucas escaped and ran as fast as he could giggling all the way until he reached the playroom.. I was able to keep them in the check in room for a few minutes to pick out a hand made wooden car to BRING HOME, very cool! When we got to our room after the tour showing them endless ice cream, food, drinks, soda machine and TOYS we find little soft stuffed animals on the beds to TAKE HOME, how cool! and the tag said FROM: LUKE....... how cool is that??? we were meant to be there. I questioned the women if it was sent from someone and she said no.. These are put on beds when rooms are made up.... A fluke it says "Luke"
Once the bags were down in the room we headed to the kitchen for dinner. One had left over cheese lasagna and green beans and the other cookies, goldfish crackers, left over pancakes, and cream cheese...and soda, You can figure out which ate what... Jordan is my junk food junkie!
I grabbed the newspaper and went for 30 minutes to play. It was tough to call play time to an end, way past bedtime. We compromised..I pulled them in a double wagon and they each got to bring one toy to the room via wagon ride. Lucas chose a small very manageable noise maker car. Jordan chose this HUGE cement truck made by tonka. We got into the room so I could prepare paperwork for the appointments in the morning, we have 9 appointment; Five for Jordan and four for Lucas . I am excited for them to see Lucas' advancements from July and Jordan hasn't been to clinic for five years!! Even with Melatonin Jordan couldn't sleep until about 10:30pm. The alarm is set for 6:00 am so we can be at Hope Haven by 8.
I get up with the alarm, get myself ready EVEN MAKE UP ...Whooo hoo! Jordan stirs as I strip beds and up he gets quickly getting himself dressed and brushes his teeth. He is worried that Lucas is still sleeping and I am cleaning up the room (required things) I am ready although with the bag of garbage, bag of sheets, new acquired gifts we can not do it in one trip. Jordan is stuck... he is still tired and not in a happy mood... ouch. I get out to the van COLD did I mention COLD IT IS FREEZING 24 degrees and I have a wind breaker (duster) The kids have hooded sweatshirts.... I am a bit worried, We race out and back in. Go back to the room to finish and take toys back and in for breakfast. Of course Jordan wants; eggs, bagel cream cheese OR pancakes..I tell him no, I do not have time to make and clean up so it must be cereal or fruit.. I make inst. oatmeal for Lucas and he is happy happy.. Jordan settles for cereal. I am trying to keep things clean and the kids happy and coffee into me.. I did the best I could; got two sips of coffee into me and off we go.
Hope Haven is so refreshing. I really needed the boost. Laura spent a great deal of time with me; giving me new ideas for Jordan. Many refreshers I had forgotten and she surfaced for me. Laura could not believe Jordan because he has changed so much in 5 years. She saw the love and beauty in him right away. He was charming AND having Jordan moments.. He went to speech, then OT and PT evaluations. Each one I would get briefed on and I stayed mainly with Lucas in his OT, PT and speech. Laura and I got some conversation on his schooling although she was not feeling well and next Monday I return with the older two and will have more time to sit and talk un interrupted. No diapers, no melt down (better not be any) We left for lunch and returned to meet with Dr. Joe. I was impressed on his memory of the kids. Dr. Joe has insight from the volume of children he sees with down syndrome. He was so good with the boys. He spent a couple hours with us which aloud him to see Jordan in action. He had been observing the boys in the center all morning although now one on one with me and the boys. He called Jordan "driven." This may very well be my new expression on Jordan.. We talked openly about my need to get Jordan unattached to mama so much. Time to cut that cord and be a big boy. Time to get the driven Jordan focused and learning. He would remind me Jordan is a physical boy and has his greatest comfort in physical activity. Lucas showed all the signs of understanding, pure quality for learning and positive behaviors. Not to say he didn't try to sneak away; much was curiosity and explore. He also did things big brother got to do, run and touch a door down the hallway and run back. If asked to come back Lucas turned and came back. Everyone can not believe the eye contact almost 100% now with Lucas and adults. The following directions and understanding of the language. He showed four signs (sign language) and put together a animal puzzle identifying Dog every time and did well with most when a choice of two; animal puzzle with animal sounds. We got lots of recommendations. I am as pleased with our new direction as they are on his gains since July. We must work on him playing with purpose and completion. If he has a book he is to look at it; not flip through it and he is to get to the end.. finish and put away. A far cry from just tossing across the room...July.
Jordan... well lots of recommendations and I will blog his later.. I need to contact his teacher with meds change so we want no other changes for 2 weeks so we can get a real feel if we are going in the right direction. I need to contact the local Doctor to alert her of our trial 2 week.
The home front was good, I have appointments tomorrow not sure how to get to both but will manage... I missed 3 appointments on the 20th .rats! Too much shoved into one month!
I go back to Jacksonville Sunday for Monday morning with Steven and Kaitlyn. I am REALLY excited for these two. They went annually as toddlers to this clinic and now it has been five years! Both teenagers now.. "Reading:" and not running like toddlers.
Sorry no photos..no camera ;0( I will get a throw away for Sunday/Monday.
