Tyler's SOD Blog

About our group !!!

Mary Patton is in pink eating cake !! She is here with her mom & dad…Joe & Nikki…they are from New Orleans & she is being treated for Battens disease..

The young chinese girl on the sofa is Adel..she is actually 20 & a college student majoring in English & heard one of the parents here in the store speaking english & aksed if she could come over to get lessons !!! so she has been stopping in some to talk with everyone here & spend time with Joelynn & Kameron..Joelynn isnt i the pic but kameron is in the stroller…she is the cutest little girl with the biggest smile youve ever seen !!!  she is 4(if i remeber right) and she is being treated for a drowning accident when she was 22 months old & brought back to life after 25 minutes…they are from Canada ..the lady holding the baby who is named miles is here being treated for CP & they are from Oregon  he is here with his mom Kate & both grandmothers..his dad arrives tomorrow !!!…others not in the pic are Shel & Macie..macie is 15 from Colorado & has ONH like tyler…she is doing great too..& the best kid !!!  Corey who had the birthday is 3 today !! and he is being treated also for CP & he is here with his dad from Queensland Australia…another family we have gotten close with is Melissa & her mom & son Josh who is being treated for SOD also…he is 17 ..a senior in high school & incredibly smart…he is so mild mannered & we will miss them as they go home on tuesday…josh has had 6 treatments while here ..there have already been a few that left last week that were here also for SOD or ONH but i didnt get any pics of them…I know ..bad me…then we have several adults here being treated for various things we have come to know well….& finally Savannah !!! They are from Missouri & savannah is 8 with ONH, she is here with her grandmother whom she lives with fulltime & her aunt & father…she talks a mile a minute & has one heck of an imagination !!! she has barely light perception but goes anywhere she wants pretty much !!!  they have been a great comfort to us while here since we share so many of the same family situations with our kids…we will stay in touch for life also…they are so down to earth & we have had a blast with them !!!  we let savannah push tyler int he halls today in hsi stroller & it was hilarious !!! she did well but the stroller wheels gt turned sometimes even for me to push so he had a few head on collisions with the wall…but she was so excited she got to “babysit”..tyler really likes her too…i know that the day tyler starts talking he will be the male version of savannah…like i said in the earlier blog..these kids have touched all of our hearts in ways that we wont ever forget…on any given day that we sweat the small stuff…think of these kids & let it go….they have huge obstacles to overcome & they dont sweat it…they roll with the punches…we need to take note…well its approaching midnight here & im still up…will post more tomorrow on our updates with treatment when possible !!!  keep those prayers coming…to those of you that have gone home forgive me for not putting you guys in here…i hope to get pics from shel & others so that i can let all my family & friends back home meet all the wonderful people we have lived with for this past month…times we wont ever forget…

Tami & Tyler

Add comment August 10th, 2008

Some of our crew here !!!

Add comment August 10th, 2008

August 10

Today was another lazy day for us.  Tyler, however slept most of the night for the first night since arriving here with some help from everyone keeping him up til 11 pm & benadryl !!!!!!!!!!!!!!!!!!!!

But when i got up today I felt more tired than usual from actually getting some sleep i think.  We layed around most of the day then Ravena & I got a cab & went to the RT Mart to wander around & kill some time.  I needed to get Tylers new favorite drink here which is called Peach Nectar !!  He loves it …it sounds like hummingbird food to me !!  We bought a few groceries and just looked at all the odd products they sale here, many are things we recognize..but with weird names.  Like after shower spray is called something like snake water ???????  i didnt purchase any just by chance…lol….I did get tyler more yogurt, which they consume mass quantities here…but its liquid ???? i have been mixing it in baby rice cereal to thicken it up & he loves it but this afternoon i just poured it in his sippy cup & he drank it up !!  I couldnt find coffee though other than instant, then found a specialty section with a few coffees but it was massively expensive.  So next trip to a mall i will buy some starbucks ground to bring back here.

I did find a certain toy that tyler has latched onto here at the hospital play area, it has a small keyboard & other buttons for various sounds.  One is a little girls head & when pushed plays a chinese childrens song !! He will be bringing that back to school with him to show it off !!!

Tomorrow Shel & Macie head back to Colorado, we will miss them greatly, as they have made our stay here so easy to this point..Shel’s stories & trips out have made our day most times !!!  and Macie is a pure angel…she deserves everything good in life & she will be in my prayers as will all of the children that are here…forever..we have all exchanged emails & I know that we will all be friends for life from what we are all going through with these children.  Joe & Nikki leave as well tomorrow headed back to New Orleans, their daughter Mary Patton is another angel..I cant not describe how much these kids touch your sole being around them & the struggles they are all going through and in the end they are just kids…as i write this with tears in my eyes to see them going through all of these just to have a glimpse at a normal life…so for everyone at home saying prayers for us …add them to your list !!!  I am going to send another post to list who is her with us now & have left…and you will know what amazing people are here !

Tomorrow is stem cell day for Tyler…he should get his treament about 1:30 pm…then be back in the room around 2:30 and then we have to lay flat & still for 4 hrs before we can get up..its hard ..but it has gotten easier…think I will turn in & rest up for tomorrow…

Tonight we also had Corey’s birthday party !! it was so nice with presents & cake..he seemed to have a great time…as did the adults….he turned 3 today !!!

Tami & Tyler

Coreys Birthday !!!

Add comment August 10th, 2008