Its in the mail....

...a specialized stroller and a walker has been ordered and we are just waiting for them to arrive.  The stroller will take about 3 months to get here but the walker should be here within the next month or so.  the walker looks like a regular adult walker with the exception that it has little straps for his feet and arms.  It has a saddle, in case he falls, to catch the majority of his weight and it also comes with a chest harness so that he can have the proper upper body position.

Felipe is progressing, he is eager to stand and to walk.  Our exercises go smoother than the stretching.  So far he likes the idea of walking but bc of his feet being in the position they are, he can not do walking or standing without the braces.  otherwise he can injury himself.  So when he is out of the braces he tries to stand up but ironically I have to discourage it bc he doesn't have the booties on.  I only but the booties on to do the standing and walking exercises.  He doesn't seem to mind them too much but the blisters are still red, and haven't really improved since the last photos.  Yesterday, he became intrigued with his feet, he even took off one sock!  that's real progress, bc now he knows he has feet and is beginning to explore them again.

Today we have therapy again, its a work out for both Felipe and Mami.  We have a scheduled appointment for Hospital for Special Surgery on Friday, our last one there since insurance will not cover both HSS and Early intervention.  I've scheduled an appointment with a Ortho, I'm hoping they will give a quick response as to if we need a different set of braces/booties.  The physical therapist seems to think his feet should be in a cast, as if he broke his feet, and kept in a cast for 4 weeks.  Lets see if the doc agrees.  If that happens, I'll send photos, bc the idea of it seems sad and a little funny to me too.  The upside of casting is that he would be able to walk, stand and crawl with no issues of whether he has the braces on or not.

God willing we'll have an answer by next Monday.  We are also going to see his pediatrician.  Again, sometimes the hardest thing is to coordinate the docs to talk to each other.  I just need to update the pediatrician and to check in if he needs any other follow ups.  He will also need to be cleared for sedation taking place on 1/22 and 1/24.  On the 22nd he will have his stent removed and on the 24th he will have an MRI to take a look at the spinal cord progression.  Kinda sucky to have an MRI on his bday but then again, it will make his party all that more memorable-- more to celebrate :) I can't believe he is going to be a year old!, the time definitely flies by.

Pls pray that Felipe returns to a normal sleep schedule-- I'm so tired.  I'm not sure if his sleep disruption is due to the physical therapy, but I suspect his muscles are keeping him up at night, maybe cramping? Idk. Thank you for your continued prayers for his speedy recovery and progress