Was he EVER this small??

I just found these photos in my email that my brother had found on his hard drive...was he this tiny at one time??? It cracks me up...no teeth!

clear breathing...

I thought I would post a positive post for once lately! Sammy is finally breathing clearly! No wheezing...(other than after the bottle...attributed I'm sure to the aspiration). I am going to call the ped. pulmonologist today and see if we can take him off of the nebulizers...he would be so happy! I think he's had it with 2 months of them! I know we have!

g-tube nightmare...

ok, so we went to the sleep study last week and that went ok..we won't get the results for a week or so...

We went to his swallow study this morning and he aspirated everything they gave him. So the GI we saw in the afternoon told us that we are looking at a g-tube. His ped. pulmonolgist also called our ped. this afternoon and told him that Sam would definitely have to get a g-tube. We are holding off on any major decisions until we wean him off of the Baclofen on the chance that that is what is causing his aspirating, from the weak swallowing muscles. We will re-do the swallow study in about 3 weeks and see what it says... can't hurt to see...

We feel like Sam eating food by mouth was the one blessing we had , that we had somehow luckily dodged the g-tube bullet...so much for that..we also have an endoscopy and ph probe test scheduled for the last week in Feb. to see if he needs surgery for reflux as well.

The good news is that the rep came form the comm. device place today and was literally blown away at how great Sam did with the device in terms of being able to navigate it and follow directions we gave him. He even recognized some numbers on dice! I was blown away at that! I knew he was smart, but wow! I didn't realize he knew those numbers by sight! My big guy! We put the order in and will be getting the actual device in 4-8 weeks. We had to have SOMETHING positive from our day!

Please say prayers for my little man...he needs all that he can get..he has been through so much lately and has so much more to go through yet...

R.I.P. Franklin

Ok, so my poor turtle Franklin passed away last night. I realize he is "just a turtle" but I have had him for 9 years now, and he was definitely part of the family. He was getting swollen lately and started not eating so I brought him to the vet and he thought he had sepsis. He gave him a vitamin shot and an antiobio shot but nonetheless, he passed on...i am so sad...no more turtles for me...i seem to not have the best of luck with them... this was turtle #3... life goes on...

Sammy saw the ped. pulmonologist the other day in SPringfield, and he is on new inhaler meds, an antibiotic for a sinus infection we didn't even realize he had until they did an xray, and he will be getting a cough assist machine to help him bring up the junk in his chest. yuck! We have many more tests scheduled including a swallow study and sleep study to find out what's causing the pneumonias.

Good news--- we have an appt. with the comm. device rep. on January 19 to set Sammy up with his new device! YAH! It will be 2-4 weeks from there before he gets it, but it's so exciting to have the wheels in motion! :) I can't wait to "talk" with my little man finally! :)

RIP Frankin--I am hoping you are enjoying some nice squash with the big man upstairs under some really warm sunshine!

and so it is....

So we are all still alive...survived the craziness of the holidays in one piece... had a great time with my sister and her husband visiting for 10 days... great to see them again! :) The boys were very blessed with many gifts and had a great holiday season...

Sammy is still battling the chest crap...he still has rattly junk in the lungs and we have an appt. for January 26 with a pediatric pulmonologist who coincidentally has CP as well. I am excited for Sam to see that someone who has muscle issues like him can become a doctor! I am just so eager for the lungs to clear up...needless to say we are obviously cancelling his Botox appt. on Thursday. Ugh! Will we EVER get it done??!! He also has an appt. for his teeth cleaning and cavity filling under anaesthesia on January 20, which won't happen either if he still has breathing issues! Oy vay!

Luke is currently loving his new ATV, which he was able to get because we sold his old one that was too small for him... He is a big boy now because he has to shift it with a clutch! My little man is growing up! Next thing you know it will be a car! ;)

We just bought curtains for the living area, FINALLY! We were able to get some US made (believe it or not!) curtains from Country Curtains for not that much more than the others we bought at Target for the bedrooms. Worth the extra change to put Americans to work! Brian is very happy about that... Ok, how sad are our lives when I am posting about CURTAINS??!! Ugh! Time to get a life, Ellen! :) We did go out to lunch the day we brought my sister back to the airport, just the 2 of us... it was nice! :)

I am telling everyone I know....not to buy a Tempurpedic bed! They are horrible! Brian and I have been waking up everyday with a horrible back ache! We are exchanging it and getting a new bed tomorrow! I can't wait...I never have back issues, and this is ridiculous! :(