Felipe's mom has a cold

...And everything gets done slower.  Its miserable to have a cold, to have a runny nose, feeling yucky and still have to run errands and follow a routine.  Today we went to the gym, the physical therapist could barely hear me with my scratchy voice.  I am still trying to identify how to make things better.  I think its  large part of my personality to try to "fix it" before calling it quits but really, I can't stand this PT or this gym.  My list of dislikes is getting longer every time I go.

I don't like:
 1) the unprofessional: its a kids place, I get it, but you can have your receptionist say "good morning, how can I help you" instead of glancing over her desk and saying "who are you?".
2) The workers are in the same space with each other all day long and yet they pick my son's 30 minutes of a session to have conversation about other students and other things while the son is being stretched and prepped for exercises.  again, unprofessional
3) the lack of attempt to being kind to my child.  For instance his name is Felipe.  I can't imagine that any one working with a child will not call them by their first name through out 30 minutes.  You need to catch his attention, call his name.  "you" "Hey" "hey now" doesn't cut it.  It shows you can't even bother to learn his name and it shows that you aren't interested efficiently and effectively capturing his attention.
4) what up with all the mats being so close together, I can hear all of the activity of the next child.  There is no boundaries as evident by the fact Felipe almost got pushed over by another therapist who was speaking to a child and didn't see my son on the floor.
5) why does this therapist sit there is silence for 30 minutes and then say, you need to work on this some more?  Work on what? I am not a mind reader, you clearly thought you communicated something that you did not.
6) I gave them at least 30 page copy of his medical record and not one question as when it comes to his recovery or progress.  it shows me that 1) again you don't care and 2) you don't know anything.  its important to know if the fatty tumor was resting on L2 or L3 bc then you can gauge the progress. how is she marking his progression otherwise?! a guestimation?
7) Why show felipe, lover of all things ball related, a huge pit of balls and then tell him not to go there.  like why?!  A huge pit of balls of various colors, he isn't going to easily forget and he will spend all of his 30 minutes aching to get into the balls.  And then you have this impression that he is hard to work with when in reality, you have set him up to fail!!!
8) the entrance has a very small waiting room for parents.  the seats are fold out chairs.  there is no space to get a child ready to go in or to leave.

this list is getting to long which means I just need to change location.


Felipe gets his new braces tomorrow.  So tomorrows to do list is short bc I'm sick.
10am Brace Shop, 11am swimming, afternoon (no time yet) physical therapy. and I have to go the bank, post office and staples.

good night!!

Monday Monday Monday....

Felipe has completed one time in the stander and when I took him out, I tried to see if he would walk a little.  He took 5 steps!!! I was so excited to see his progress.  After about 3 to 4 times in the pool I do notice a little more strength (and increased appetite).

PT had to cancel today bc of of a family emergency, I will have to remind her to schedule a make up session.  Since most of the days he already has physical therapy, the session might end up being on a Sunday.  

The To DO List grows and I'm not feeling great and I just had 2 root canals done.  But here it is:

1) SSI Packet

2) call neurologist re: EMG testing

3) call insurance company re: brace payments

4) call around re: transportation options with wheelchair

5) call to get new swimming schedule for this week

6) call around catchment area EI service providers to see if I can change the agency

soo sleepy

Stay At Home Mom, Esq.

After much debating, praying and seeking counsel from close friends and family, I have decided to NOT return to work in May.  While I can live with the regret of leaving my dream job without guarantees of being able to return with things have settled with Felipe.  I would not be able to live regretting that I didn't do everything possible for Felipe.  I will miss the practice of law, my clients, my coworkers, and the crazy smells of the courtroom.  But on to tackle physical therapy, advocating w insurance company approving medical procedures, and daily house hold chores and Felipe treatment schedule.  So far, after 5 months, I'm slowly in a routine of:

Wake up and clean before Felipe awakes
wake up Felipe
feed Felipe
put Felipe in stander for 30 minutes
take Felipe out, massage
Change Felipe into street clothing
Let Felipe crawl 30 minutes
take felipe to swim
lunch in stander
nap
physical therapy
make phone calls to medical providers for follow up
make phone calls regarding house hold issues
(let Felipe crawl during phone calls)
Put Felipe in stander as I cook dinner
Dinner
Bath
Sleep for Felipe
Check emails for follow up with early intervention/medical providers
Clean up after Felipe
Go to sleep (11pm)

I might consider picking up the habit of drinking coffee, I need all the energy I can muster up!!!

Swimming Felipe!

Today was Felipe's second time in the pool at the local YMCA.  I've also signed him up to swim classes.  The hope is that these outing will help Felipe improve his muscle tone and help increase sensation in his legs.  So far he has loved it! Once I told the physical therapist that he was enrolled in a YMCA with a pool she gave me a list of exercises to do in the water:

1) Side to Side: Alternating on his back or on this stomach sway him left and right, try to get his hips to react by grabbing him under his arms by his rib cage.  Do not let his head go underwater.  Observe to see what his hips do, do they adjust to the opposite side?

2) Splashing with legs:  hold him from the hips, guide his legs to the surface and encourage him to splash with his legs, moving his legs from his knees (in and out of the water surface)

3) After leaving pool Felipe's legs should be more relaxed, massage muscle area and stretch 10 times before leaving changing room.

Today he had fun splashing with his hands and did have significant movement on his hips/ab area.  When I would drag his his torso to his left, he would compensate and turn with his hips to the right.  This is all good!

The not so great news is the gym. I don't like the therapist, I don't like the location and right now I'm not seeing the point of the 20 minute drive to get somewhere where the therapist is pretty clueless.  I'm going to follow the advice of the PT from HSS, I'm going to start looking for a new service provider and try to find a new therapist and center/gym.  I am already displeased with having to accept an orthodox jewish calender which would mean Felipe will not have therapy for 6 days in September bc of all the holydays.  I rather they follow the usual school calender and provide a better gym.  

So starting monday, call up and figuring out where I can transfer Felipe's case.  I don't want to loose an awesome physical therapist but the gym is terrible. 

Hopefully I can take a photo soon of Felipe in the pool!

So much things to do, do little time!

Felipe has started at the gym-center based services this Wednesday 4/23.  The location is fairly close by mass transit and/or by car.  I was kind of tempted to walk over, might be good exercise for mom but baby would fall asleep and the last thing I needed was a sleepy baby before physical therapy.  As usual he get there, smiled and waved and screamed.  Its weird to be in a smaller setting, I feel like I wish I could continue at Hospital for Special Surgery where they have more equipment and things seem brighter, more child friendly and more empowering of parents.  My first impression of this place was that they just took the kid and left.  I was not having that, I want to see the exercises, stretches and what he is doing so i can replicate at home or at the very least, if I'm asked about it I know what is going on.  I hope that things work out, I am not going to let me nervousness about if I made the right decision to cloud or merk the sessions, I'm going to remain neutral and just observe if this place is best for Felipe.

I FINALLY signed up Felipe to the YMCA.  We took him for his first swim on Tuesday.  I'm trying to enroll him in swimming classes that begin next week.  The only thing I find near to impossible is changing him in and out of the swimming stuff.  He gets showered, remove the chlorine, I remove the swimming diaper, put on  fresh clothing. And then what about MAMI?! How do I change with Felipe in the changing room.  Its not an issue of modesty, there is no space to put the baby down for a minute while I shower.  I am doing to have to do some figuring out, maybe bring the stroller into the shower area so I can rinse off the chlorine and not have itchy skin.  At the very least, I can dry off and change without fear he will crawl away.  The ideal is to go with someone.

Felipe's braces are in! yea, we are going tomorrow to pick them up and make any last modifications.  Also going to HSS for last therapy session that is covered by the insurance.  From here on in, it will just be Early intervention at home and in the gym.

I've called the neurologist several times with no results, I'm going to step up my level of harassment/stalking.  The PT wanted me to see if EMG would be a good test to do for Felipe.  I don't really know what EMG is, except that it measures nerve damage and response times.  PT seems to notice that one leg isn't as response as the other.  Its been continuous and she wants to determine if there is nerve damage how to better address the issue.  PT said she might leave in September which I'm sad about, she is great.  What ever she doesn't know she researches articles.  Whatever questions I have she is really insightful and full of encouragement.  I hope we can continue to use her for as long as it takes!!!

Today was Access A Ride assessment interview.  AAR would make traveling to doctor appointments much easier.  I can get to Manhattan without having to walk 1.2 miles to coney island station or fighting w the bus driver to let me on.  Felipe wasn't very happy with the interview.  The rooms were as small as a bathroom stall.

Now that I've tackled the small thing like AAR, next thing, the SSI application.  And also speaking with the Spinal Bifia organization about resources and other locations for additional help for Felipe.  YMCA is costly but really hopeful that swimming with help with Tone.  Hopefully with SSI approval or with SBA, I can get a discount and the swimming classes wouldn't be a financial hardship.

On that note, I have decided to leave my position at work and stay at home full time.  The babysitter candidates were getting more and more expensive.  The money I make would go directly to them and then I would be in debt with student loans.  It was a very difficult decision but ultimately, I do not want to have any regrets about if I did everything possible to ensure that Felipe walks and thrives.  I rather regret leaving the job of my dream.  And in the end God has a plan for me and I have to trust that he will find a way to get me back to my job or find me another better position for me once Felipe has fully recovered.

Hugs from this official, stay at home mom.  I'm not sure how I feel about the title "Stay at home mom" for one, I am never home.  I'm either running errands, taking Felipe to appointments, on phone scheduling appointments,etc.  smh.

A race against time....

...Felipe is doing well. However the botox is clearly a race against time.  We have to work those muscles as much as we can before they get back to where they used to be, very tight and inflexible.  Every morning, I stretch felipe's legs and hips and I feel the tightness trying to creep back into his muscles.  All this week I've placed felipe in the stander for 30 minutes for 3 times a day, every day.  He is tolerating being in his braces for longer periods of time.  This is all due to the botox, thank God for that, however, there are little signs that the botox is wearing off. His right brace, the tighter muscles, have slipped off several times while doing some exercises.  It only serves as a reminder that we gotta do as much as we can, as much as felipe can tolerate in the time we have the botox relaxing the muscles.

Felipe is getting chatter and chatter.  So far he has begun to mimic more of the adult conversation.  I swear he said "mine!" the other day in regards to the swiffer.  He loves that thing, fortunately, he can clean up after the messes he makes :)

we were approved for the 5 times physical therapy but we haven't had a session as of yet.  still waiting and getting annoyed and impatient.  my current service provider follows a Jewish holiday schedule.  I have had some days off when I was in college, but it was not nearly as disruptive as this very orthodox schedule.  Next week, Felipe will only get one day of physical therapy for the week! And apparently in September it gets even worse with the holy days then.  I'm not sure what to do.  A friend of mine, with knowledge in the field, suggested switching agencies.  I like the physical therapist so I would want to keep her as long as I could.  I am praying on guidance on this topic, I just don't know what to do. or what  might be the best strategy.  Sounds like the physical therapist might relocate and might end up leaving the agency anyway, so perhaps I should put in a request to switch agencies.  First thought, I need to pray on it more.

Tomorrow we have physical therapy at HSS, for one of the last sessions of the year.  We have the ability to try out theratogs, which are being recommended by the EI PT.  Theratogs are basically gurdles, or tight fitting cloth that helps with positioning, posture and muscle flow.  Usually discouraged with kids with sensory issues, figured we tried it out before spending the EI money on the item.  Some kids find it very restrictive. And others don't mind it at all.  Personally, I dislike anything that makes me feel like a stuffed sausage.  I'm hoping that Felipe isn't as picky as his mami.

Today during physical therapy Felipe's older brothers walked in during the session.  Felipe was so happy to see them, he was to distracted to continue working.  we had propped up some pillows to get him to lift his legs and work out some hip flexor muscles.  His brothers stood behind the pillows and refocused Felipe to climb up the sofa, and take some steps in the walker.  Felipe was very excited to see them and was eager to please them by completing the tasks.  It was great to have them around and hope in other days, we have have surprise cameo appearances by his bro's to help with physical therapy.  My biggest regret, not being quick with the camera to capture the great brother love moment.

Ok Felipe's mom is super tired.  Felipe has a cold.  :(  Daddy has a cold.  Mami gotta take care of two babies, lol.

Progress is hard to keep in perspective...

As his mom I see him everyday and its hard to keep in perspective his progress so far.  We went to Blyethedale to hand in the stroller that the hospital lent us.  When we arrived his teacher from "infant school" said he looked stronger and leaner but more confident in his crawling.  That he definitely is; so much so that its getting hard to entice him to start walking.  The latest advice I got was to put him in the walker and have him walk towards his food at meal times.  Hmm, tried to do that this morning and well, it didn't go as expected.  I shall try again at dinner, in the hopes that by seeing Daddy at the table he will have two incentives to walk over.

Yesterday, we also had our first session of physical therapy in HSS after missing for a month.  we missed a month bc Felipe was sick, or having the botox, or we were moving.  All of which gave us a new perspective on how things are going.  The therapist we usually saw gave us an overview of where he was at about a month ago and where he is now, and also, the stuff he needs to master for the future.  we only have a limited  number of time we can continue at HSS since we now have been approved for therapy 5 times a week with early intervention.  I was using HSS as a one time a week, additional therapy that the insurance would cover.  I think it was great to have two different perspectives and approaches (and personalities) work with Felipe.  I am grateful that they are so knowledgeable and helpful in trying to help Felipe recover.

as for the aforementioned perspective, the therapist at HSS said that last month, felipe wasn't very strong when he would stand up and learn with two arms.  He would buckle occasionally at the knees after a few seconds of standing.  Now his knees are stronger and he is standing and leaning but only supporting himself with one arm so that he can explore with the other arm.   His hips are stronger, but that could also be the botox.  He is able to lift up his knees/hips to pass obstacles.  So there is progress!

The things he needs to continue to do and improve on, continue to bear weight (on his own and using the stander)and trying to take strides on his own.  The bearing weight is important to getting his hips formed in away that will prevent him from getting hip surgery.  And also is the best and only way to keep his calf muscles from wasting away, or atrophying. That is something I have noticed, his legs are getting so thin, especially after he used to be a chunky little one.

Praying for continued perspective, patience and God willing, progress.  And praying for all the kind medical providers that have helped us along the way.

Yes!

We were given the physical therapy for five times a week!  Glory to God!!!!