Today was a busy day - Brextin got up at 5:30 a.m. and then we left the house by 7:00 to make our first HBO dive at 8:30. There is a lot of construction in the area and I wanted to make sure we would make it to the appointment on time -
We arrived early so he could get fitted for his special hood - they first measured around his neck and made the hood to only fit around his head - which made me a little nervous because he loves to place his fingers into his mouth - so I then asked if the hood could actually go around his waist so his hands could be inside the hood as well - and they said no problem - this has been wonderful - I am allowed to place a couple of his favorite toys right inside the hood - so he can play with them while inside - he really likes to chew on a blue chew tube - I thought it might help him swallow and to prevent his ears from popping.
The first dive was interesting - because the hood goes around his waist - he didn't want to lie down - since it would have been uncomfortable - so I rested him in my lap the whole time we were in there - I even stood him up for a little while - The time alone with him allowed me to rethink all of my camp songs, nursery rhythms, etc Eventually I had to read from a book I took in there - because I was running out of material - you can only imagine how long 1 hour can be while you are trapped inside a tank with a child who is unable to talk or respond to you -
When our first dive was done - we traveled to our next destination which was intensive therapy - Today was more of a get to know you day - which was good since our little guy decided to sleep for 2 hours during the scheduled sessions - I am going to see if the center is flexiable and would allow us to split up his therapy session instead of trying to do 4 hours straight - I just think 4 hours is too much for him in one given time period - he still needs to find time to eat - as well as sleep -
We have meet wonderful people at both locations - they really have been very helpful at making us feel welcomed - We even met a beautiful 3 year old girl from the Mirco list serve from yahoo groups - she began her dives this Monday.
Our day ended with a second dive - which went fine as well - then we drove home. I arrived home around 6:00 - so basically our days are very similar to our regular routine in regards to leaving and arriving home -
Only 38 more dive sessions - I better get going so I can get some sleep since our day will begin all over again at 5:30 -
I will do my best at keeping the blog up to date - currently no new changes - keep praying!!
Ohh ya - he played with shaving cream and did an art picture - he really liked this activity.
Hang in there Randi. I know it's a long day and can be pretty overwhelming at times, but you'll be so glad that you did this for Brextin. The first day is the hardest, it should get easier from here on out. Keep on taking pictures, you'll be glad to have them. Way to go Brextin playing in the shaving cream (Elijah screamed the first time we tried that with him)! I'm sure there are a lot of people thinking of you and praying for Brextin's success - including Andy, Elijah and me.ReplyDelete