Mourning for a friend....

Normally this blog is about Felipe and his recovery but over the last year a former coworker of mine has been going through a major challenge with her own son.  She has twin boys but at 16 months one of her son's was diagnosed with Nueroblastoma, an aggressive type of cancer.  About two weeks ago, she posted that the doctors noted the disease spread and he only had a week or two.  Today, she announced his death passing away at 26 months, 2 years old.

I am heartbroken.

Her son is one of the main reasons why I cut 15 inches of my hair to donate to kids with cancer.  Seeing updates on her son, the chemo, the reaction to experimental drugs, all trying to get him healthier and out of pain (And photos of a family trying to create a normalcy to a situation that is beyond ordinary) made me feel helpless, watching things deteriorate and not being able to do anything.  Cutting my hair was my attempt to do something aside from sitting and observing.

Pls pray for his surviving family and twin brother to find peace in this difficult time.

Foto Friday

Not quiet understanding that he has a shoe on already and that his shoe doesn't need another shoe...cutie

From the post-lunch bath, straight to the stander, this baby gets no breaks!  

rash he had for 2 days, its started to go away, seems like he is ok, might have been a heat rash since apartment is SO warm

Felipe's Selfie: amazing that at 14 months he can turn on my phone, select camera and take photos.  SMH

Mami has to multitask, took laundry and then taking Felipe to the bank.  

Mami is crazy, no?!

Things to do....things accomplished

- Will go to the brace shop on Friday to get new braces.  his old ones are too small and his little toes are peeking over the edge.  lets hope the new ones are easier to put on and off.

- Dr. Root's secretary called, the botox was approved by the insurance.  We are just waiting on the pharmacy to approve a delivery date and then we can schedule an appointment for botox injects again in June.  follow up with secretary by next Tuesday no pharmacy calls us. She will write script for theratogs, a device used for rehab for kids with sensory issues.

- Called and left a message with the physical therapist at HSS for additional session and for a letter for Early intervention.  Perhaps she can advocate for us too.

- left a message with the Nuerosurgeon's nurse practitioner, awaiting  a response re: letter for EI mediation

- 6pm today, we get the new stroller :)

Ortho and EI Mediation update.

Ortho said Felipe is still very tight and might need another botox injection.  This will most likely happen in June.  The next botox injection will be solely focused on his hamstrings.  The last dosage was spread over 9 shots so maybe a more concentrated dosage will keep him very flexible.  Despite what the doctor says, he is so much more flexible than before.  He has outgrown his braces and he needs new ones.  Hopefully the new ones will be easier to put on and off.  He also provided me with a very short letter saying that he should have therapy 5 times a week.  Lets hope that helps with the mediation.  In regards to the Hips, he wants to keep on monitoring the hip displacement.  His first impression is that its somewhat normal for his age and tightness within his muscles and it should resolve itself with a lot of weight bearing exercises.

I received a call from the director of medicine within the Early Intervention program.  He says he wanted to know more information about Felipe and why I was thinking that he should have therapy five times a week.  I was hoping that he would have an answer during the phone call but instead said he "will think about it and call right back"  No phone call yet.  I have a feeling that they want to extend the time for 60 minutes but that will not be helpful for Felipe who can't stay focused for that long.  Praying that things work out for the best. It seems weird that "opposing" side would contact me over the phone before the mediation date.  IDK, I don't have that much experience in this area but seems like the majority of parents just give up and don't request mediation.  This whole process enrages me for the parents who don't fight back bc these officials use their authority or title to intimate. Its definitely not about the welfare of the child but how to save money and do the least amount possible.  :(

To Do:  1) follow up with Ortho.  Wait about a week to schedule an appointment with Ortho once insurance approves Botox injection from their specialty pharmacy. Assistant said she will call me but to check in within the week in case. 2) organize the papers and letters in support for Felipe's increase and make multiple copies to distribute at Mediation Session.

Therapist told us to only put Felipe in high chair if he has his braces on.  He can not have his feet dangling. So now, at any point, he can have his braces on.  Just not for crawling. Its actually made the transition from eating to doing time in the stander much easier.  He finishes eating and then I pick him up and put him in the stander.  He is pooped from all the exercises.  He is napping longer.

He also has a rash on his face.  Apparently it might be a reaction to the MMR vaccine or something he ate.  Its just on his face and it isn't itchy.  But he seems tired and hasn't wanted to eat as much as he usually does.  He is drinking A LOT.  No fever as of yet, I'm monitoring him and if the rash doesn't get better by tomorrow I will call the pediatrician.  Apparently the MMR vaccine is very common.  :(.

Mediation update...

EI medical director, the person behind the scenes who approves or denies the request for increase in services has contacted the physical therapist and asked her opinion in Felipe's case.  I am thankful that the physical therapist is a great advocate for Felipe's needs and I'm also thankful that my friend in educational litigation had prepared me to hear the various usual responses by the officials.  As expected they would like to increase each session to a full hour, but limiting the sessions to 3 times a week.  So on its face, appearing to have more time but in reality just stretching out the time that the therapist has with him.  This would be a great solution if Felipe wasn't 13 months old.  Even though he is pretty attentive and cooperates with the therapist, asking him to work for an hour is an unrealistic expectation of ANY 13 month old.  They generally have meltdowns after being pushed and is counter productive to an increase in services if he no longer wishes to be pushed for so long.  The therapist voiced this concern as well.  Secondly, he suggested that I should be doing these exercises at home anyway and no need for a physical therapist to do more work.  An insult to the therapist who only spent 12 years of her lift getting a PhD in the treatment of children with neurological disorders to think I as a concerned parent would know the intricate knowledge that goes behind rehabilitating a child.  It constantly amazes me the level of knowledge you really need to have.  I know the thigh muscle is the quad, but I don't know all the ligaments and connectors and how it relates to the level of the spine.  I didn't go to school for that.  There has been days in which I can tell Felipe is in pain or uncomfortable but I don't know why, and I stop.  crying isn't good and I stop, very basic and doesn't yield high results or better results if someone who knows what they are doing, is there feeling how his muscles are moving and how they are reacting to new positions.  He told the physical therapist he will consider what other options are available, but didn't seem convinced as of yet to agree to the increase. Please continue to pray for wisdom  and compassion for all involved, and God willing, we will have an increase of services on April 8th.

I also ask for continued prayers for finding a babysitter.  Its such a hard choice to leave Felipe while he is still recovering (the doctors gave him till 2 years of age).  And yet its hard to remain at home with all the responsibilities piling up.  I've asked for guidance and wisdom and I hope to follow God's path.  I have faith that things can resolve in ways that I have not considered. Thank you friends for your prayers we've been through a lot but have been able to stand up bc of friends, our faith and God's strength.

This weekend...

Friday's appointment w the urologist went well.  The doctor discontinued the antibotics under the theory that all bacteria will eventually flush out of Felipe's system and over medicating doesn't really help the situation.  Only until he develops a high fever should they start treating the UTI. He got on his soap box about how pediatricians should not catheterize but instead use a fine needle aspiration to pull out urine in order to provide the cleanest possible urine.  I guess my facial expression didn't fool him, I was looking at him like "what?! really now you are saying its the pediatrician that took the urine out wrong with catheterizing"  I don't know, sometimes the guy rubs me the wrong way.  And I know I'm super defense of the pediatrician bc I feel she is super professional, caring and very responsible to her patients.  Either way, even assuming that the last infection where he had a fever was a UTI, then getting antibiotics was appropriate.  Getting antibiotics for a second time after testing his urine after the antibiotics, despite having no symptoms, was NOT proper procedure.  (despite the urologist's nurse requesting a test after the antibiotics was done).

So difficult to manage multiple specialist.  They all have their own personalities and all have their own theories of treatment ranging to being most conservative to more risk taking.  The urologist is very risk adverse. And yet he is very "laid back" kinda person so to me most of his medical opinions are "lets wait and see". That the advise of "lets wait and see" kinda annoys the hell out of me especially since given the usual trajectory. Felipe suddenly spikes in fever and we end up the hospital with a kidney infection is not something I want to "wait and see".  As in life, there are times medicine does not provide any comfort.

Update on the babysitter search, Candidate number #3, I met on Friday afternoon.  I really liked her.  She is a young nursing student, that is taking some online courses as she can afford them.  She is originally from Maryland and has family in NJ and PA.  She was sick when she was younger, in her teens.  She had something similar to Felipe, involving her spinal cord and spine.  Turns out she has the same neurosurgeon as Felipe and knows a lot of individuals, nurses and staff at the same hospital.  I found her to be appropriate with Felipe: giving him some time to get used to her, letting him come to her and trying to interact with him w his toys.  She also knows how physical therapy works as she had to undergo a lot of it when she was younger.  She wants to go into pediatric nursing bc of all that she experienced and wants to be there for other kids.  She had answered an ad that I placed in a christian newsletter so it was great to be able to have an open conversation about faith and prayer.  I am calling her references this week.  I have some reservations in that, I'm not sure if I should continue to look for other babysitters to interview or if I stop looking.  I'm hoping to return to work after the mediation session for Early Intervention, after April 14th or so. I will like to have some overlapping time so that she can see the routine that Felipe has with his exercises.  I think it would be great if she could document her progress as well through blog entries and other ways that technology can make it feel like I'm not gone from him for so long during the day.

This Saturday, I went to Rejuvenate ministry held at church for parents with kids with special needs.  I dropped off Felipe with some sisters from Church and they looked after him while I had 2 hours to myself.  It was great.  I walked to a local salon, got my hair cut.  I am donating about 15-16 inches of hair to locks of love.  Its a bit of a shock to have short hair but I also feel at least 2 lb lighter!  My hair is heavy.  I then walked back to church and before picking up Felipe got an orange juice with a muffin. A muffin I didn't have to share and an orange juice I didn't have to quickly drink in order to prevent Felipe from spilling it.  Its just the little things that do help to rejuvenate and help restore some energy for the upcoming week.  I'm very grateful for those 2 hours and I hope to continue to build fellowship w the parents that have children with special needs but also the lovely caring women who offer their time to help Felipe and his mom.

Sunday, Herminio and I went to play tennis.  Oy, I'm very very rusty.  Herminio has the excuse that he is a beginner. I have no excuse, I used to be good at tennis.  In fact when i was 7 months pregnant I played a little tennis and had a good volley with one of Herminio's co workers.  Now, I'm worse than when I was pregnant!  Oh well!

I was able to accomplish some of my to-do list since my mother and aunt came to help watch Felipe as I ran errands.

New added to do's:  Call babysitter references; draw up tentative job description and expectation; print out necessary tax forms for babysitter to fill out; contact employer about start date; go to post office; drop off laundry and sign up to the YMCA!!!

Mediation date scheduled

So Mediation has been set for April 8th.  I have to get all the documentation from medical providers and I also need to create a strategy for this mediation session.  Basically a neutral party will hear the early intervention's reasons for not granting the additional sessions.  And then I get to say all the reasons that should be looked at as well for why the additional sessions should be granted.  Then the neutral party tries to sum up what each party is saying and then encourages an agreement.

If the agreement is something we all agree to, then the ongoing service coordinator will have to add it into the service plan, which will make it a legally binding document.  They would have to comply otherwise can be taken to court for failure to provide services.

So, to do list is getting very long and with short turn around time.  1) must call: Neurologist, Neurosurgeon, orthopedist, and pediatrician requesting a letter in support for increase.  Invite them all to be available by phone April 8th to answer questions if necessary.  2) Speak with Advocate for Kids to find strategy for mediation session. 3) create copies of letters for mediator, DOE, Service provide, PT and for myself for day for mediation. 4) possibly ask HSS PT for letter to DOE as well.

On going list of things to do:
1) set up medical appointments for myself 2) change of address with all credit cards and bills 3) call access a ride 4) search for babysitter 5) call for SSI services 6) enroll in YMCA swimming classes 7) search for pediatric dentist and schedule first dental appointment 8) do taxes and set up payroll for babysitter 9) call HSS ask for additional physical therapy sessions 11) follow up with Urologist about medical records being sent to him before Friday's appointment re: UTI 12) go to pharmacy for ear infection medication, for myself...how does an adult get an ear infection?!?!?!  :( 13) grocery shopping

And at some point: 13) rest.

sigh.

Photos

First attempt at Botox, selfie while waiting in pre-operation area

Mami I have a fever! :(  Released from Pre-operation area bc of fever, Botox cancelled, antibotics ordered again.

Sleeping it off, aw cuties falls alseep anywhere!

Second attempt at Botox, he is waking up from general anesthesia, he is trying to eat the oxygen tube and then uses it to put to his ear like a telephone.  Needless to say he is a little out of it.  9 injection sites, IV drip, a few minutes in recovery and he was sent home the same day.

Cutie Alert, he crawled over to look cute and beg for something, hard to say no to such a cute face.  yes his hair is long but still don't want to cut his hair, the curls are so cute.

Felipe hitting other developmental milestones, feeding himself with a spoon.

Now that his feet have improved with the botox, Felipe can actually wear shoes.  Before his feet were too pointed downward that shoes would not stay own.  These are Felipe's newest pair of shoes that he can wear without the braces.  A soft leather shoe so he can crawl around the house and protect his feet from scrapes.

Denied [Warning: a RANT]

God help me to have more patience...We received notice that Felipe's request for more therapy has been denied bc the physical therapist hasn't worked with him long enough and he can't be expected to meet his goals in such a short period of time.  its been 2 months.  Its been two months and several doctors have said he should have 5 days a week and not just 3, bc in addition to the massages and work out that I give him at home, he should have services every single day.  So apparently, its all a process, but I am in the rage mode where I can't understand why getting things have to be like pulling teeth. 

For example, the ongoing service coordinator wants me to mail everything.  first of, we aren't in the 1920's and the post office isn't the more efficient way of doing things.  Her alternative is to get things faxed in.  Regrettably I do not have a land-line bc in the time to prioritize expenses while I am out of a job and relying on one income, we thought, lets get rid of the additional expense that we hardly ever use.  That aside, I've faxed things from a local staples in which she doesn't pick up for a day or two at a time.  I have to call her to remind her to check her faxes.  And I have to incur the extra cost of sending it to two fax machines in her office bc one of them is "sometimes out of service".  BUT no, no email bc there is a privacy issue.  The first time we spoke in early December, I said, well you know, in the hospitals that I take Felipe, they allow email communication once a parent waives the concerns that the hospitals might have.  Do you have such a waiver?  She said no.  it wasn't just a no, it was an emphatic no.

Guess what?!....After telling her that I will APPEAL in form of a fair hearing Felipe's denial, she tells me there is a series of paperwork that much be filled out first before the fair hearing is requested.  Since the appeal is time sensitive she suggests that she will fax it to me.  Again, don't have a fax.  Then she says, well since you never signed the Email WAIVER, i can't email it to you.  ARGH!!!!  I again said, I would like to sign the waiver.  I have asked about it, you said you didn't have one.  She said, ok well then I'll send you a waiver, sign it, email it it back and I'll send you the paperwork for the fair hearing.

ARGHHHHH!!! It took all my energy just to say "Yes."  Bc there was plenty of other words I wanted to tell her, and none of them were three letters.  So now I got to appeal a decision that is completely arbitrary, before Thursday, in the hopes that they can look up from their mounts of paperwork and "status quo" to give him a chance at making real progress by having what ever medical provider has been saying he needs: physical therapy 5 times a week!

And in other news... Babysitter Candidate #4, a Spanish speaking woman recommended by another coworker didn't work out, she lives in NJ and only travels to Manhattan.  Apparently I live in no-mans land.

Babysitter candidates #1 and #2

Picking a babysitter is tough, what questions to really know if you can trust someone.  The added issue in our case is that the babysitter will have to be on a payroll so that all appropriate taxes can be paid and I'm finding that a lot of people are shying away from that.

Candidate #1: Placed an ad in the Redeemer classified, a christian online newsletter.  She was very nice over email and phone.  We had a scheduled interview for Saturday but she let me know that she was offered a position closer to her home in Manhattan.  It would have been great to find someone who has the same beliefs and is dedicated to sharing her love for God with children...she taught Sunday school at a christian church to kindergardeners. So, that didn't work out.

Candidate #2:  She was recommended from someone from work who used her as their babysitter for their special needs child from birth till she got to school.  The other child needed speech therapy so at least she had an idea of how it was to work with therapist that come to the home.  She was great, I would've hired her but she was clear that she would not provide tax information necessary to be on payroll.  I appreciate her honesty.

....next interview will be on Friday.

Candidate#3: also responded to the ad in the Redeemer.  She is a nursing student and wants to work with children.  I am hopeful that her desire to work with kids and being a nursing student she will be a good match.

I've placed an ad with Care.com, hoping to look over all 20 applicants by the end of the day.  I would like to return to work in April and have the new babysitter shadow me for a week before I return to work.  Pls pray that God will lead us to someone who is compassionate, gentle, caring, honest and punctual.

I was right, too bad.

So the results are in from the bacteria growth, he has Klepcillia.  The Doctor texted me the results and has called in an antibiotic to the pharmacy.  She also contacted infectious diseases, the kidney/renal specialists and they agree he should be on antibiotics for 14 days, return to the doctor after the cycle and have more urine drawn.  Hopefully, the antibiotic will then remove the bacteria from the system without having Felipe endure any high fevers, feeling like Blah, and vomiting.  New appointment with the urologist for this upcoming Friday.

Yea, we caught it early.  Boo for having to give Felipe more medication.  Its like a pro wrestling event to get a 13 month old to take his oral medication.

Off to the pharmacy I go.

oh Boo!!!

Doctor called, Felipe has bacteria growth in his urine.  She sent out urine to "grow" the bacteria to determine which type of antibiotic to use.  If I was a betting person, I bet it will be the same bacteria as it has been for the last several UTI, Klepcillia.  The antibiotics we have been using are all effective with the bacteria its just that the infection is pretty strong.  At least that's what I understand it to be.

I'm on fever watch now, walking around with a thermometer at all times and keeping track to see if he gets warm.  With the prior UTI, he's fever spiked in a matter of minutes from normal to 102-105.  So our plan of action is if he develops a fever to call the urologist to get a prescription for antibiotics and a follow up appointment.  If he's fever is out of control, then go to ER at Presbyterian, the Urologist's hospital in case he needs to order further testing.

Going by Felipe's playfulness, he feels just fine!

Shots, Shots, Shots....

Of course on the day that Felipe needs to get immunization shots he wakes up with a stuffy and yet very runny nose.  He did not have a fever.  I went to the doctor office anyway because I needed to follow up with her about the botox injections, UTI and other issues.  Since he didn't have a fever, we went ahead with the immunizations.  It was a particularly important one bc the measles outbreak that has occurred in NY, especially in The Bronx and in upper Manhattan.  I am glad that we got it, at least one thing less to worry about.

For the follow up to the UTI, the urologist had asked the doctor to get a "clean Catch" for urine sample.  This means they put a catheter to not have any out side contamination on the urine sample.  So basically Felipe had a terrible doctor's visit, catheterized and given 4 shots :(  I wasn't really thinking much of the follow up procedure until I saw the urine come out a little cloudy.  A sign that he might have a UTI.  Oh no!  He just finished his medication this past week, I was hopeful for a break from UTI and vomit duty.  The pediatrician told me "not to get ahead of myself" but I could also tell she was thinking it was that same thing.  Urine was sent to the lab to see if bacteria would grow.  An update later...I would like to go for a couple of weeks of not being vomited on.  for such a small little person he can vomit alot.  sigh.  But the doctor's right, lets not get ahead of ourselves and wait for the results.  So far no fever!

As for the Botox, she can also see the marked improvement in his legs and his flexibility.  So progress in that front!

More explaination on the walker...

...physical therapist came today to give more detailed info on the walker.  Felipe was pretty alert since he did take a nap before she got here.  So he was refreshed and ready to check out the new gear.  The physical therpist has modified the walker by putting all the gear facing the rear.  That way all supports are out in front, prompting him to straight his posture.  This explanation would be easier with photos, God willing, I will have some time the end of the week and update the post with photos.  The saddle right now is in a good position, but when Felipe gets tired, he sort of just plumps down on it, treating the walker more like a chair than a walker.  Felipe took close to 10 steps today.  He was really tired.  He is eager to reach out and stand but I don't think he gets the concept of walking yet. Slowly.

Today, it hit me for the first time while shopping for food at Costco and seeing a little boy run to the bathroom with his father, that given Felipe can't stand on his own, his potty training is going to be delayed.  Not sure why it didn't occur to me now, but it has. Don't have time to get "down" about it just gotta get creative with it.  Something to think about, how to introduce the topic but given the limitations, how to address it. Maybe first just getting him to identify the feeling of having to pee/poo, even though he can't go on his own.

Thursday Felipe has his immunizations.  His first round of measles vaccine and others.  He should have had them close to a month ago but they were postponed bc we didn't want any interference with the botox scheduling. given the outbreak in the Bronx and Washington heights, I admit I'm a little concerned that he is not immunized yet.  Pediatrician is eager to see him after the botox.  His flexibility continues to improve.  Physical therapist noted that his hips are not as rigid/tight as before.  But she also noted that his toes are peeking over his brace, which means he had a huge growth spurt and needs new braces!! I see him everyday, its hard to tell from my perspective.  I start to see how tall he is when he is in the stander.  I think last recorded height was about 3 weeks ago was about 32 inches.

ok, long to-do list not even touched today,  but felt accomplished anyway, went for a walk in the nice weather and Felipe passed out with some sun on his face.  Eh, its the little blessings I gotta focus on.

The equipment arrived....sort of....

The gait pacer/walker has arrived.  As well as the stroller, but that's a longer story.  As for the pacer, its awesome, but Felipe spent a lot of time struggling to stand up on his own (which is expected and understandable).  So for now, I was told to ace bandage his knees together and then have him try to take at least 5 steps.  With the therapist he took 3.  One of his legs, after the botox, seems to be moving a lot at the hips.  It tries to take a step.  The other leg takes awhile to react and doesn't react very strongly.  but its so great to see him willing to be mobile.  the goal is to get him walking up and down the hallway outside of our apartment.  right now, it seems like that distance is like going from crawling to running a marathon! But there is hope! and motivation and faith that things will fall into place.

As for the stroller, it arrived as well but modifications need to be made.  Too many in fact and so they are returning it to the manufacturer and then ordering a size bigger.  its looks great, he seems so propped up and doesn't move from his position.  the regular stroller I have now, he just slumps downward and sideways.  I still have a specialized stroller on loan from Blythedale.  I will return it once our permanent stroller arrives.  I haven't used the specialized stroller in a while bc it was so heavy and impossible to lift in the snow.  now that spring is here I will be making an effort to use it more.  It just gives him so much more back, hip, and knee support.

Felipe did 30 minutes in the stander today, we've been a little off routine since the time change.  But the 30 minutes his feet remained in the braces and he didn't complain of pain...just a little boredom.  So even though the full effects of the botox have been yet to be seen, the little changes are awesome so far.

Felipe is down to taking one nap a day, which isn't great news for mami.  I'm hoping that its just a time adjustment thing and he goes back to taking 2 naps a day.  I need time to clean after him, make something to eat and just try to unwind, or even nap.  He has been drinking from a sippy cup, so finally on track regards to introducing a cup.  He is trying to spoon feed himself rice cereal.  Does a great job the first spoonfuls but then finds it all together entertaining to sprinkle the rice cereal all over the kitchen.  He kinda looks like a catholic priest throwing holy water into the audience...he seems to go for distance.  He is also trying to communicate more.  He still only says "mama" "dada" "byebye" and "hi" but he is enjoying pointing and getting mad when you don't get the true meaning of the point.  Today he crawled over to the kitchen, pointed to the loaf of bread and very happily left with a slice of bread, clapping his hands. maybe the  next word will be "bread"  he seems to like it a lot.

Praying that God willing, things continue to progress. Have a good week!

Botox Week 1

So perhaps its a little too soon to see any results, the doctors say it will be most evident 2 weeks from the date of injection, BUT, Felipe already seems more flexible.  I've been stretching him and he seems to move more easily and not wake up from naps or sleeping so stiffly.  I think there is progress!!

We were able to buy some soft sole shoes from Baby-R-US, thanks Tio David and his wife Tia Patty.  It was tough searching for shoes for Felipe given the angle of his feet.  They are pointed downward so most shoes slip off his feet immediately.  We were really looking to get something on his feet to protect his feet more while he crawls.  We found a pair of shoes that have one set of Velcro on the top band, almost like male version of Mary Jane shoes.  Either way, he wore them all today and they did not fall off his feet more than 2 times.  this is progress!  and he wants to stand more, and these shoes offer a lot of support to his little toes that were exposed to all types of torture without the structure of a shoe.  Praise the lord, we found good shoes for him to wear without his braces.  With his braces we have a pair of sneakers.  But with the current braces, the feet slip out after a few moments of crawling.  we are meeting with the ortho in a few weeks to discuss bracing and what options we should explore for Felipe.  The doctor was thinking of the Hip-knee-ankle braces, kinda of like the ones you see in the movie Forrest Gump--the ones he runs out from.  But depending on how strong we can get his knees in the next few weeks maybe all he will need are Ankle-foot braces that can steady his feet as he learns to balance while he walks.  Felipe is eager to stand, that is large part is the biggest progress and success we can count on.  He is motivated to reach for things, especially anything with wires and my cellphone.  So as long as he has a good attitude about it all, we can only expect more progress.

The equipment arrives on Monday! I am so excited!!! A specialized stroller and a gait pacer--basically a walker with a harness.  Photos to come as soon as the stuff arrives.

Botox

Felipe did well.  he got 9 shots in total.  he got two in each calf and quad.  In his right foot, which is very spastic/contracted, they also botoxed his big toe.  He woke up from anesthesia very hungry and a little cranky but doing well.

we rushed home to get him ready for physical therapy.  During his session, he was more willing to move.  He didn't complain and he was able to move his legs in more flexible way.

So tired.  walking up at 4am not cool.

Good night world.

New Botox date! 3/6

So rescheduled for Botox....Felipe is still on Antibotics but he is doing well and he has not had fever for a while.  Thursday again, 6am again...its so early!!!

Our new place! Our new challenges!

Felipe is slowly exploring every inch of the new apartment.  He seems happy to be back home.  A little of behavioral changes, from being with grandma for the weekend.  My mother doesn't stretch his feet or legs from not feeling very comfortable doing so.  While Felipe had been crawling around her apartment and really getting good crawling time, he was very tight in his thighs.  Physical therapy was spent reviewing massages and exercises to strengthen his muscles.

UTI culture came back, it was the same type of bacteria as last time.  The information was sent to his urologist.  His pediatrician said that he was cleared for surgery on next Thursday as long as he does not have any fever.  This botox seems like it will happen.

Felipe is getting tall quickly!  Maybe a little too quickly....he might need a replacement stand-er.  he is getting too tall for the one he has now.  The stand-er was modified for his new height

Physical therapist agreed that Felipe needs to get more therapy.  She is composing a report to ask for therapy 5 times a week.

Felipe is eager to get up and stand and possibly walk.  He gets up on the opposite part of feet, (not the balls of his feet but the top part of his feet) and will try to stand up in that position.  Its gets me scared and proud to see him like that.  its scary that he might break a bone or tear a muscle doing it.  however, its good to see how much he wants to walk.

And then there were NONE...no one healthy in our family....sigh.

We left Felipe with Abuelita Luz while we pack up the final items and for the duration of the move.  We figure he would be safe and comfi and in a space he can just be sick and recover.  I had plans to be productive with my time without felipe.  Instead, I got very sick.  I was not able to get out of bed or raise my head without triggering a sprint to the bathroom.  Not sure if was food poisoning or that stomach bug that seems to be going around.  All I know is I lost time for packing! My husband was sick too!

I am very thankful to the Brooklyn Tabernacle members that came and helped me pack.  I was loosing my attention span and my ability to focus but sisters came and got things done.  On Saturday, I felt like dead boiled over, and I pushed through as much as I could.  Brothers from Brooklyn tabernacle came and helped move boxes and help w last minute packing.  I've never been so sick on a day that I had to move or travel.  I am so grateful to the help that brothers and sisters provided.  

We are currently trying to clear out the house of boxes and dangerous piles of books so we can introduce felipe to his new space. He returns on Sunday :)