Ty's MAW Pre-trip :) arriving Feb 14, 2010

[cantwaittoseemickey]

They are doing ok right now. I think it will be different when we go to the visitation and on Friday is my nieces birthday that will be another tough day.For Ty it has to be a kind of "in front of him" thing so when he goes and grandpa isnt there then he will understand more. Sierra was doing ok last night. We had tried to prepare them both as much as we could.

 

[alaskanabbott]

I'm so sorry about your loss. Yours was the first PTR I read...and I stayed up all night telling my husband about it. I hope you and your family find some comfort during this.

 

[cantwaittoseemickey]

Thank you. We are having a really tough time right now.I am going to take a break from here but will hopefully be back soon. Too much going on right now.I will try to lurk but I cannot keep up. Hugs to all.

Tonya

 

[kellyw8863]

 

[pnutallergymom]

Hey Tonya,

Just wanted to stop in and give you a . Many thoughts and prayers to you and your loved ones during this most difficult time.

 

[jenb1023]

I know we frequent a lot of the same threads and I have ben subscribed to your PTR for a long time but have not had a chance to read it until today. I am so sorry for your loss, that you had to reschedule your trip and for all of the hardships you guys have been going through. I look forward to your PTR for July when you are ready to start it. to you and your family!

 

[cantwaittoseemickey]

Thank you for reading. We really appreciate those who read our ptr-report.


I am going to wait till after his Complex care team meeting in March before we go full force into it. Just so we knoo if he will needs surgery this summer as we cannot do the suregy and disney both in one summer. But I will definatly get one going soon!!!:

I know we frequent a lot of the same threads and I have ben subscribed to your PTR for a long time but have not had a chance to read it until today. I am so sorry for your loss, that you had to reschedule your trip and for all of the hardships you guys have been going through. I look forward to your PTR for July when you are ready to start it. to you and your family!

 

[cantwaittoseemickey]

Now that I mailed all of the papers and things back to MAW. I kind of feel so bummed out. seriously. Also when I renturned them I asked if the check was right as it was writtn for 3. Instead of 4. She said it was right and I am still confused since there are 4 of us. I trully appreciate everything they have done for us. In every way. I am just a little confused that.s all. and wondered if anyone had this happen to them. The only thng I could think of is b/c Ty is tube fed? But then what happens with the rest of his portion? If you have a gtube fed child and can offer some help please let me know. Shout me out a pm. Thank you

 

[pnutallergymom]

Hi Tonya,

I guess that surprises me that they were only giving you $$ for 3??? Brigge is tube fed and was TPN dependant but does eat PO feeds sometimes. I know that we were getting a stipend for 6...her included.

That seems strange.

I just wanted to check in and see how you guys were all doing?? Hanging in there I hope. I've been thinking of all of you. I hope you continue to keep posting!!!

 

[cantwaittoseemickey]

Thank you for checking on us Shannon. You are so thoughtfulWe are ok. I try to keep up and read and reply here and there.

Tim had his knee surgery today so that was a hurdle down. I was pretty worried about it as it was his first surgery and I was there by myself. He pulled through just fine. He had a torn miniscus, a tattered cartilage to where it was jagged and alot of fluid in his knee.

Ty is doing ok. We are still having problems with the constipation.It is taking so much meds. The last two days have been bad with his swallowing but he goes through those rough patches.

I just found out that I get to stand up at my cousins wedding in April if my husband is off that weekend. We would get to travel to TennI am so excited! Sierra actually has a camp that weekend she looks forward to that trip every year so we will have to see how it all works out. But it is something to look forward to. Now I really need to work on this weight. COME ON warmer temps so I can at least do some bike riding

 

[pacrosby]

Hey Tonya.......

I just read about the loss of your FIL. I'm so sorry. I know you were all 'expecting' it but it doesn't make it any easier. Take care of each other

 

[cantwaittoseemickey]

Please see the link in my siggy for our NEW PTR! THANK YOU FOR FOLLOWING US