UPdate: cold and sleepy.

So much has happened I haven't had a chance to update you all, my apologies.

First, we are moving on March 1st, to a new apartment a few blocks where we are living now.  I am excited to get away from the marijuana concern but packing is a big challenge with a small child and all his demands.  Fortunately very good friends have been helping either watching Felipe while I pack or jumping in and packing my stuff.  The help keeps coming in, so thank the Lord for just good friends and their helpful hearts during these tiring days.

Secondly, we've seen a bunch of doctors and we have appointments to see a bunch more.  met with the Ortho at mt Sinai.  She explained that Felipe does have a hip displacement of about 30% on both hips.  Normally it would require surgical intervention.  She believes it was caused by a gradual pull by the tighten muscles.  Tight muscles bc the of limited lower mobility, again going back to the spinal issues.  Since the spine is still recovering, she doesn't want to repair the hips until the recover of the spine is complete.  in the meantime we will keep monitoring its progression.  The focus of her help will be on his feet until then, he needs to get his feet/leg muscles more relaxed and needs to re-strength and balance his leg muscles.  So Botox is a definite option.  to numb some of his tighter muscles and getting his body to instead to rely on his weakening muscles will help him as he progresses.

We met with the neurosurgeon today.  MRI shows that the spinal cord swelling is diminishing.  The lipoma remains the same size and is not in the way of the spinal cord.  The spinal cord is not as swollen but still has an area where its a little swollen.  While its only been a few months, doctor is hopeful we are in the right direction.  So no more surgical intervention, at this point.  Wants to begin to follow up every 3-4 months.  He wants to touch base with Ortho before setting down a follow up appointment. Setting appointments several months out is a good sign!! progress!

So I'm having a moment of "am I an over-the-top-parent"  The Ortho in Mt. Sinai is "fine" She was very nice, professional, answered questions, read through the medical records, very patient and kind with the baby.  I had only one concern.  I asked her, on behalf of the therapist, if he should get theratogs, and she didn't know what they were.  I asked her about rehabilitation exercises and restructuring or adjusting exercises bc the displaced hips and I got a shrug and, "you can do it all"  Part of me thinks, its just the way she speaks or how she presents, but it bothers me that she isn't well versed on the rehabilitative part of this, especially since we have issues with braces.  I have asked her if he needs new ones and she says, braces aren't to be used.  But I tell her that both PT in HSS and EI use them, she is like, um, ok, but no point in doing so. So?! I'm wasting my time keeping my baby standing for 30 minutes at a time.  Either way, I have a second opinion 2/25 to see if another Ortho would recommend anything different.  The other othro, has the opposite problem, he has been working for over 52 years as a doctor and is no longer taking any surgical patients.  But he is well versed in all things rehab for ortho patients.  I pray that God calms my nerves and help guide me to the right doctor who can really help Felipe.

Talk about frustrating...the department of education rejected the request for equipment bc the fax of the documentation was crumbled on one page and bc supposedly the forms were too generic.  I have to say, it appears that the person rejecting was just trying to clear their desktop bc there was no error and now his application is just lingering.  I need to write a strongly worded email to this person.  once I gather enough strength and stop yawning every 10 minutes.

tomrw we have an appointment with the new neurologist.  They have a questionnaire that seems to be a small novel, I haven't finished it yet and I'm so sleepy.  One thing I notice is that despite trying to be as informed as possible, I still don't really know the final or formal diagnosis is for Felipe.  Some say Spina Bifia.  Some are saying that its a lipoma in the cord.  Now there is a new diagnosis that he might have been born with bad lower nerve development and I just think...will this ever end! in the beginning and end, God has had his hand in it all, and that should give me a sense of relief.  Sometimes, It doesn't but working to remaining positive. (awake and positive)

Traveling in this winter mess in NYC is difficult.  I have a couple of things on my to do list that I regret putting off as long as I have.  #1 applying to assess-a-ride.  Apparently they pick you up and drop you off at medical appointments.  that would have made a big difference today where I got a ride into the city but took 3 hours to get back home.  #2 applying to SSI.  Apparently even if we don't qualify they might be able to direct us to more resources  #3 follow up with order of stroller and walker (strongly worked email)
Oh and yea, #4 continue packing 2 bedroom apartment #5 call uhual, make reservations, #6 call student loans ask for forbearance  #7 look up internet resources for kids with similar diagnosis  #8 figure create ways to cook food currently in pantry and fridge so I don't have to shop til after we move.  #9 skim some book called baby whisperer bc Felipe is getting out of control with biting and pinching.  # 10 stay awake long enough to make a dent in to-do list.