Sleeping Felipe

Possibly due to the antibiotics and his body need to heal he has been sleeping a lot.  Last night he went to sleep around 7pm.  Poor little one nodded off during Jeopardy.  He woke up briefly to get his medication and then fell asleep again.  He woke up at 10am!! that's pretty late.  he fell back asleep at 2pm and has been sleeping since.

I have modified his workout since he is asleep or on the verge of falling asleep these past few days.  I'm stretching him more, giving more massages and trying to get him in his braces and ready to stand for all his meals.  So far, limited success on the time in the stander.  He stood only for 60 mins yesterday.  Today, we haven't gotten him in at all!  I have to account for some days will not be as productive but with the sense of urgency that I feel now a days, its hard not to freak out.

Praying for Felipe's healthy recovery!

Never mess with Naptime!

Oh Felipe!

Felipe is now at the phase where he likes to push the limit of when he will fall asleep.  He usually naps around 3-4pm but yesterday he refused to go to sleep.  A friend was over and he couldn't pass up the opportunity to play with someone else aside from mami.  So instead, he played till he passed out, against his will.  Unfortunately, he was awoken a few minutes into his nap by the sound of the door bell.  The physical therapist had arrived and it was time for therapy.

Felipe was not having it.  He cried and cried and cried.  Unfortunately, it was the most unproductive session we have ever had.  The theratogs had arrived and they first need to be measured to fit him perfectly.  The vest portion seems to be about 5 inches too big while the leg portions seem to fit well.  I hesitate from cutting anything especially since its so costly.  I'll leave it to the physical therapist to decide that. Nothing was properly measured bc Felipe was refusing to stand or situp.  He was demonstrating his great imitation of a worm, full body weight to the floor and squirmed away from mami and she tried to redirect him.

Theratogs have to be worn for 30-45 minutes at a time for 2-3 times a week.  The PT said that was the minimal amount but at optimum useage, they can be worn for 30 minutes every day.  The time spent in them can't exceed 30 minutes.  Feeling the material, I'm not sure that Felipe during the summer month can really tolerate it for 30 minutes.  The theratog material is sort of like a wetsuit material or similar to those "loose weight quick" blue sweat producing bands that they sell for the tummy area.  The idea behind it is that one side of the theratog has a material that pulls the skin or sends a sensory response to the skin.  Because there is friction in putting on the material, when Felipe walks or  crawls, the material will pull his skin in the direction it should be.  It start to feel uncomfortable to be in the incorrect sitting or crawling position. Theratogs are similar to the idea of the kinetic tape that was tired with Felipe is HSS. Although no tape to painfully remove--that stuff had some crazy adhesive material.

Today we have the PT at the gym.  I have the suspicion that all of Felipe's recent colds and pink eye are a result of the this gym not cleaning their equipment properly.  there are a lot of kids there with student physical therapist and I don't see them separating out toys that need to be washed after having sessions.  After Wednesday's session, I realize that I have complained about this location more than I have had anything positive to say, so I think its time to just move on to another agency and location. The PT has provided her notice, she told me yesterday that she might want to leave earlier than July to take care of family issues.  While means, the search for a new Physical therapist has to start right now.

 To do: sadly still on my list: SSI application. I just need a block of time to devote to it without Felipe trying to fill out the paperwork with me!

Times Flies when baby is sick

Some updates, in list format bc baby might wake up at anytime

1. Felipe had pink eye last Tuesday.  His eyes were so gooey! ew.  He has drops and the issues has resolved BUT...

2. Felipe now has an ear infection.  We were back in the doc office this tuesday, after just visiting last week.  felipe had a consistent fever of 102.5 and the motrin/tynenol combo wasn't slowing down the progression of the fever.  He has a slight cough and runny nose.  He was prescribed antibotics which he doesn't like but has to take.  He doesn't want to eat much and generally doesn't want to do much but laydown on mami's chest and crawl up into a ball.  Poor little guy is having a hard time.

3. Theratogs have arrived! yea!  its a confusing package, so photos to come once I figure out and get certified on how to put these things on Felipe.  One thought on it all, it seems awfully warm to put on during the summer, lets see how Felipe survives

4. PT that comes to the house has resigned and will be leaving in August.  This makes me sad. She was very skilled, compassionate, and loving with Felipe.  We are trying to make the best of the last weeks she is here, new replacement yet to be reassigned. Praying that God will provide us with an equal or better therapist for Felipe to continue to progress

5. Botox went well on 5/19.  Seems to be taking a way to take into effect, but its really only been one week. I'm just to anxious to see progress and sometimes I don't notice i too much.

6.  Gym PT reports significant difference in strength in Felipe's legs.  She feels that he can adjust himself when standing (and leaning on a bench).  This is great to hear, its often hard to notice the progression when I'm with him and working with him everyday.  Glory to God, as there are some significant changes that are solely attributed to divine intervention.

7. I'm still not loving the GYM or the EI agency, I'm considering a move with agencies. but a new factor just came to mind.  I've wanted to put Felipe into a Montesorri school. I just happen to call one and they said they take kids as early as 2 years old.  So if I put him in a school, then I could a) change agencies to service him at the school at least part of the time b) get a part time job so I can help contribute financially to the family expenses and c) give felipe more kid time, he usually just has me to play with.  A hurdle might be this issue of potty training.

8.  Potty training....


oops he woke up!  bye

Update

Felipe is doing very well with his new braces.  They seem lighter and a little more flexible.  So they move with his feet better which allows him to crawl with them.  This is great bc he can crawl and try to pull himself to stand while he is playing not just when we are doing our exercises.

We had first session with acupuncturist.  He was very kind and gentle with Felipe.  He was very knowledgeable regarding nerve damage and set out a plan for the next 3 weeks.  We will go twice a week for 3 weeks in the hopes to see some additional nerve stimulation.  If there is progress, great, if not, hey, we tried everything available to him.

On Friday we did the EMG/NVG test.  This test measures nerve damage and muscle damage.  We probably should have done this test sooner but the neurologist didn't suggest it until now.  The results were very encouraging.  The EMG test consists of the technician putting two sensors on the baby's foot, and then putting a small needle in his muscle and send a slight electrical current.  The NVG is similar but no needle, just two medal prods the send an electrical current.  The results show if the muscle and contract and release and if the nerves are damages.  The damage is very mild in the L5, S2 area (butt area and ankle area).  While the damage can't be repaired the nerves can learn to travel in different ways to achieve the same result.  In that sense, the neurologist is very optimistic that Felipe's recovery is going well.  Initially she thought the results would be worse bc of her physical exam of Felipe in February.  Again, he has progress since, but she hasn't his attempts at walking.  We are to follow up with her in 6 months to repeat the test but to also make a plan for Felipe's recovery.

Knowing the area that is damaged, the physical therapist are designing the more intense workouts for his damaged area.  I will do the regular exercises to strengthen his legs and to relax his muscles.  We are trying to go to swimming at least 3 to 4 times a week.  Felipe really enjoys his time in the water and I feel that most of the recent progress is due to the swimming.  Today he kicked in the water, he didn't do that last week! Glory to God!!

With our current schedule, Felipe is passing out at 7-8pm.  He can barely hold up his head when we make it back home.  He has skipped dinner, and just drank a bottle of milk, bc he just wants to go to sleep.  I was reminded by the acupuncturist to be more mindful of his food.  I'm trying to give him as much as he wants but he is getting pretty adamant when he wants and how he wants his food.  Its amazing to see a little personality grow.

I'm also tired, in large part bc I carried Felipe into Manhattan. We took the subway and it was just faster if I left the stroller behind.  But all the carrying is starting to take a toll on my back.  We are still waiting on the accessaride application.  However thinking about how close the appointments are, I'm not sure how helpful that service is.  The accessaride says that they will be at the appointment time within 30-45 minutes.  So I can be 45 minutes to a doctors appointment.  Mt Sinai has a 15 minutes late policy, after that, they can't guarantee that they will accommodate you. Not sure the service would be helpful with a crazy, ever changing schedule that I have right now with Felipe.

To do: SSI application!!!! and also find a rehab doctor, as per PT, that is needed right now.  I am going to call Ortho to confirm that I really need rehab doctor or if I do, if they have one in  HSS they can refer me to.

Evaluation by EI: Progress!

Felipe was evaluated yesterday by the physical therapist from early intervention.  He is very strong in his upper body and strong in his abs.  He tried to pull himself a flight of steps, using all his upper body strength.  While this shows progression, the true progress that his legs and his hips are involved in the movements.  there is a little hip movement and he is trying to stand.  He pulls him his legs towards the step but can't plant his feet firmly on the ground.  however, the new braces are slightly lighter and more flexible than the last pair.  They stay on longer while he crawls.  Which is great bc then he can crawl and try to stand up on his own.

The evaluation prompted some inner conflict.  Some progression is good but also can be taken out of context.  For instance, he earns points for crawling up the stairs.  However, he achieved it by only using his upper body.  So does that really earn him the points demonstrating progression?!  I don't think so. Its doesn't show the progression in his legs and hips which are really at issue.

The therapist have ordered the Theratogs, which are like a little girdle that will put him in better posture and keep him in better aligned.  We'll see when it will arrive.

Things still to do: SSI application, reaching out to the office of disabilities, and speaking to a contact regarding transportation for children in specialized strollers.  Need to update resume and start looking for part time jobs that I can do while caring for Felipe.

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