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.