2013 in photos..

My first day :)

2 months

3 Months

4 months

5 months

6 months

7 months

9 months, After back surgery

11 months, after Kidney surgery

Happy New Year!

Felipe is doing much better!  We had a couple of days of monitoring his fever, water intake and food, but fortunately he is back to normal.  No fever for the last 24 hours :)  he will have to continue on antibiotics, however, at least no more fever!  He had a UTI, we have called and asked the urologist, if he needed to go in sooner to remove the stent given the UTI.  As of now, we don't have an answer.  But overall, Felipe seems to be in his usual playful spirit.

12/30 we had our first session with EI.  It was VIGOROUS!!! Goodness, I left tired and Felipe was pooped! He just passed out for a 2 hour nap afterwards.  Abuelita Luz Elsa suggested video taping the stretches and other techniques, so in future posts I'll put that up.  The Early intervention physical therapist was very good, knowledgeable and caring with Felipe.  His goals are to get him to strengthen his leg muscles through repetitive motion of sitting and standing.  Using his braces, he will work on strengthening his knees and hips.  She asked me to find a pair of pants and sew the legs together so that at night Felipe can pull his hips and legs closer together.  I did it last night, I think I picked the wrong type of pants, it did nothing to improve his hip positing.  I think I need more of a spandex type material.  So that's my next assignment, find him pants to sew the legs together that will pull his hips together.  I also got some info from him his Titi Ivi regarding a swimming lessons close by, that I need to investigate.  Swimming would help him gain muscles, since he is loosing the muscle tone he used to have.  Its  hard to think of swimming when its so cold out!!!!

Have a blessed New Year!

I have 4 teeth in total now!! bring on the steak :)

Fever anyone?!

12/27-28: We were scheduled to see Urologist today to check in about stent removal.  Since his wound was fine, as of last night we were going to cancel the appointment.  Felipe had a different opinion.   He spiked a fever of 105 and off to the emergency room we go.  We had given him Tylenol, he vomited almost every dose.  Then we gave him cool baths, which helped bring down the fever for a little but not by much.  So we ended up at the ER. They determined it was a UTI.  Now normally, a UTI is like one of those things that boys can get easily as babies. But for Felipe it means a little more bc he still has the stent in place.  They sent out for cultures but gave us a type of antibiotic that is best for kids with kidney issues.  If the bacteria generally is immune to this type of antibiotic then we will get a call and a new prescription.  We had to switch to using suppositories, no way he can squirm or vomit away from the medicine anymore.

however, despite getting the antibiotic and suppositories, his fever returned and went all the way up to 105.  We were able to speak with a pediatrician, who informed us that were were under-dosing poor Felipe.  He is weighing 24 lbs and we were giving him medication based on his age.  We should've known!  he is wearing 18 mo clothing, eating like a toddler, of course his medication dosage should've been different.  oh well, you live and you learn.  Now with proper medication, his fever has been under control since 4pm.

So things we learned...1) Felipe will vomit indiscriminately and He will continue to eat right after vomiting, as he loves his food. 2) Felipe w a fever means mami gets no sleep bc of worry and bc of monitoring his temp every hour.  (it came in handy, yesterday he went from 101 to 105 in less than 40 minutes). and frequent cool baths in the tub, burr!  3) since I'm a first time mom I always think I'm overreacting but gotta trust my instincts and keep on advocating.  4) Netflix has sesame street on line streaming!!!!!

pls pray that this UTI is resolved quickly with the medication.  Pls pray that God will give the Urologist wisdom in knowing what to do with the stent.  A fever and a UTI has me guessing that something might have to be done about the stent, but what do I know. And I hope I can get some sleep soon.

Merry Christmas!

I've been delinquent about updating the page, sorry guys, here's a summary of events:

12/19:  Felipe was being held longer than anticipated bc he wouldn't drink or eat anything.  however by 9pm, he started to drink 4 more oz of formula.  His complete appetite wasn't back yet but at least it let us go home.  Why rush home?! you might ask, he just had major surgery?!  He was healthy aside from being a little achy and wanting to sleep, he didn't require any additional medical monitoring.  Also he was in a room w 3 other patients, we didn't want to expose him longer to something else.  We left by 10pm and got home very tired.

12/20: Felipe's sleep schedule was turned upside down. We were able to get the medication very late last night, thank god for Walgreen pharmacy hours.  He was released with 7 days of antibiotics, as needed for pain medication and medication for cramping.  The urologist explained, that now that there is no obstruction, at times the bladder can start cramping more.  He was given the medication in the hospital on a routine but we were asked to wean him off it.  Apparently Felipe agreed, he vomited the morning dose.  Giving medication w a dropper is tricky.  You squirt too quickly and it triggers his gag reflex.  Felipe isn't the most cooperative and doesn't understand its good for him and so its like wrestling him down to do something and then trying to be gentle w the dropper.  So far, he looks ready to go.  just sitting with us and taking small crawls on the rug.

12/21: Felipe is almost complete back to normal.  He crawled all around our apartment looking to play peek-a-boo.  his sleep schedule is still off.  He went to sleep at 1am! I can't hang with that!  Then he got up at 11am.  Glad he slept but we gotta get back to the old schedule, I can't keep my eyes open past 11pm!

12/22: Felipe gaining back his speed and appetite.  We've been trying to give him yogurt to combat the effects of the antibiotics. So far 3 spoonfuls is all he will tolerate, no matter how fascinating Herminio tries to make each spoonful.  We've stopped the cramping/spasm medication and are closely monitoring his diapers.  If too little wet diapers we'll have a problem.  But so far, praise the lord, he is doing well and managing it all.  No painkillers since Friday morning!  He seems like he wants to eat a steak.  I've been him cereal and other mushy stuff in the hopes to ease him to recuperate but its clear he wants more solid food.

12/23:  Officially Felipe is cleared for all physical therapy except for stretching that involves twisting the torso.  Again, he has a stent in between his kidney and the bladder so that the UPJ can be reconstructed.  that stent will be removed 1/22, the last, hopefully, sedated procedure.

12/24: Merry Christmas!!  Eve...I guess depends when you celebrate it, but as most Latino families I know, today is the day of the celebration and tomorrow is the day to recover from the lack of sleep.  We are heading to Abuelita Blanca's house.  Felipe is excited to people watch and crawl for an audience.

12/25:  Merry Christmas!! Felipe had some nice presents, very thoughtful toys from Tio Danny and Tia Nancy.  He got a rolling ball that rolls away from him (and signs and lights up) as he crawls.  Very good to encournage him in trying to re-strengthen his legs.  They also gave him a soft little monkey that plays music.  He went to sleep with it.  too cute.  Abuelita Blanca got him a nice outfit with a cute hoodie.  Abuelita Luz Elsa got him a wonderful snowsuit that will help us get through this cold winter! Brr! We have been rushing around we didn't get him a gift!  thankfully we have been blessed w a great family who provides where we have forgotten

12/26:  I felt hopeless and totally adrift when I couldn't find his braces for 3 hours.  I had not put them on him yesterday, to give him a little break.  And in the moment of not finding them, ran to the car, drove to all my prior locations and searched everyone's home.  no luck.  Got home dejected.  Herminio w more faith than I, went to speak with the shops along the avenue where we live.  Thank goodness!  God's favor was really with us.  He found the sneakers and the splints at the corner grocery store.  A worker had found them on the street and after holding on to them for a day, figured they might be trash and was putting them in the bag when Herminio walked through the door.  God's work.  We didn't find the presents that were in the same bag, but let the gifts be a blessing for whom ever took them, we have the braces!

EI called and said they didn't have consents or medical clearance, despite sending a copy on 12/19.  I resent a fax.  They have received it, so from here on in, EI in the home, starting 12/30.  Praying that the service provider will provide Felipe with extraordinary care that will help him recover quickly.

Day two....

After he had fever, we gave him tynenol.  He was ok for the remainder of the night.  He drank 5 oz of water which is great.  They are lessening his IV, so that he will drink more on his own.  They removed his catherer.  Which wouldve been pain free but in putting on a new diaper there was a little pressure put on his drain and it seemed to hurt him.  We gave him morphine at 6am.  hoping that he doesn't have to get it again and we can just tamper off on some painkiller that isnt so harsh.  He was good, fell asleep until I had to change his diaper at 8am.  When i went to lift his little booty, pressure on the drain, and he started to cry out. It is in such an ackward place.  The drain also looks like a straw, sticking out his left side.  It hits right on the diaper/belt line, so any little brush gets him fussy.  Aside from that he is doing ok.  Herminio went home and returned to find him smiling at hime.  His Abuelita Luz Elsa sang to him some old school spanish love songs and he was quiet till he fell asleep.  He also played a little pee-a-boo w Mami and Abuelita. But seems like when he tries to laught too much it hurts him too.  So we will just settle w smiles and stares.  Mami seems to have caught a cold here, not sure why, its freaking tropically hot in the room.  Sneezing has always made felipe giggle.  So its not my intention to make him giggle, I just gotta sneeze.  Poor felipe, he is between, giggling and then immediately frowning. 

Latest word is, if no fever, then he will be released 5ish.  If there is another fever he will have to remain one more day.  Also if he has more drainage then staying with drain to go home or staying one more day.  He seems content, right now he is sleeping.

Thank you for your continued prayers. :)  God will get us home when Felipe is ready to go. 

Successful Surgery!!

We arrived to the hospital at 7:30am.  We were seen immediately and we changed him into little baby gown.  Surprising they are the most uncomfi gowns ever, not soft at all and very akward.  I walked Felipe over to the operating room. Where they had a team waiting for him.  They put a little gas mask over his face and he was out in a few minutes.  Since this approximately the 5 time they do this type of sedation, I knew what to expect and Felipe also was more resistful.  But went well.

At 12 we got an update that all is going well. And by 1ish the doctor came to the waiting room and explained the surgery.  He was able to enter into thru his side, so there is less trauma to the area.  He was able to fix the obstruction by removing a piece and reconnecting it with a stent.  The stent acts like a straw, keeping the tube from closing over.  There is a drain to make sure that any blood or urine leaks out of the body. And he has a cather in place. 

So as of 1ish, if he has a lot leaking out of the drain, we will go home with the drain and have it removed in his office a few weeks later.  Same with the cather.  I am praying that he will be able to go home with no cather and no drain. 

Doc warned us that usually kids will spike a fever after surgery.  AS of 9pm, he has a fever of 101.  He was given tynenol and is back to sleep.  Overall his pain has been managed well.  But his hunger has not! lol.  He wanted to eat, his stomach was grumbling.  The nurses thought it was a pain cry, and cute little felipe j ust wants to eat!!  He has been cleared to drink formula starting now.  As soon as he wakes up, a nice chill bottle will be waiting for him.

So, tommorow, we'll get final word as to how we get discharged, with cather and drain or without it.  Pls pray for us.  We also will need to get a clearance form for Early intervention.  He will be partially cleared.  He can do any leg exercises but he can't rotate his trunk.

they definately expect to let him go tommorow.  What a difference in level of urgency and care in ICU v regular hospital floor.  we have to share a room w 3 other people.  kids ranging in ages thru months. I rather be home as well.  I'm hoping that there are no issues with neighbors to come home. Plus felipe's older sister is in town, I know he can't wait to see her.

ok...till next update, thank you for your prayers.

Tommorow's surgery time!!

So we got the call from the surgical coordinator, he will be the fourth baby to go in for surgery that day, we get there at 11:30.  If one of the other babies get sick, then we can jump ahead in terms of time.  I'm praying that it goes well and that we arrive on time with no hiccups in the morning.  while we arrive at 11:30, the operating time is at 12:30pm. 

Felipe can't eat after midnight, no formula 4 hours before and no water two hours before.  Its almost like he is a little gremlin...lol (full disclosure: since I don't like scary movies, I've never seen gremlins, just heard it about not feeding these cute creatures water after midnight)

****UPDATE!  Two little babies called out sick, so now we are in the #2 slot.  Arrival time at 7:30am.  Surgery time at 8:30am.  Yea, God making things move in our favor :)

count down begins...

Physical therapy on both Monday and Tuesday.  we don't find out the surgery time until the night before.  A little tough to plan ahead but we are patiently waiting to see in what order his surgery will be.  It is decided by age, urgency of operation.  So given that he is 10 months old, he might be the first one, but then again, last time we went for this operation he was second operation of the day since a 3 month old was ahead of him.  So we'll see how it goes.

Physical therapist thinks that he needs new braces.  We are meeting on Tuesday to decide if the old braces can be modified.  lets hope we can do something before the surgery date so he doesn't loose more flexibility while he is on the hospital bed.

as the time nears, I am probably going to make Felipe some ground turkey with potatoes, his favorite food.  He will not be able to eat after midnight.  He will not be able to drink 4 hours before the surgery time.  Keeping a hungry kid entertained will be a challenged.

Pre-surgery gitters, hence a post at 2am.  Please pray for us.  Hugs to you all.

Felipe's Friday in Fotos....

Felipe crawling towards the Christmas Tree that Daddy decorated.  Its a little tree, up on a table to keep away from Felipe's curious reach.

The aforementioned Christmas tree

Felipe's new toy, a steering wheel and a horn.  he loves to play with it as we drive to HSS.  Honking all the crappy NYC drivers, not me of course, hahaha.  He looks just like Maggie in the intro of the Simpsons.

Early intervention...

12/12:  Praise the lord, Felipe was accepted into Early intervention and will be receiving physical therapy 3x a week.  We left therapy in HSS to rush over to the meeting at the early intervention offices in Brooklyn.  Felipe was asleep for the majority of the meeting.  The persons who evaluated him, all recommended therapy and despite that fact I expected and was prepared to advocate to get him 3x a week, they gave it to him.  His needs are pretty clear.  Thank God.

Due to his pending surgery, the services will begin 12/30.  The physical therapist will come to my house and give him 30 minutes of therapy.  At the same time she will show me some additional stretches and exercises that we can do when the therapist isn't there.  So far, the HSS therapist have shown me some stretches and I've been working on them with Felipe.  Before beginning on 12/30 he will need to get cleared after surgery to make sure that medically he can participate in any stretches, workouts, etc.

12/13: HSS therapist noted that his ankles are very blistered.  The braces really have broken Felipe's skin.  So we haven't used them since Thursday. he bumps against them when he crawls so this will be a process.  The therapist thinks that he will need a "hip helper".  basically a girdle type device that goes around his hips to try to get to him have a more narrow stance.  Right now when he crawls and when he sits up, he keeps his legs very wide.  On one hand, that's great, he found a way to keep himself stable.  On the other hand, it again uses the stronger muscles while the hip muscles remain relaxed.  So by wrapping him up by the hip, he should have a narrower stance and will be forced to use the underutilized muscles.

We have to get a Orthopedic to step in and give an opinion as to the braces.  the PT seem to think that the current brace isn't good for him right now, but in a couple of months after therapy has helped him adjust to shifting his body weight on his foot.  The guy at the clinic to get the equipment seemed to think otherwise.  I spoke with the insurance company and they basically warn that they will not pay for another set of braces, since this set was just recently made.

Another thing to sort out is what will EI pay for and what will the insurance be responsible for.  Apparently EI is supposed to pay for equipment such as stroller, braces and any other devices needed for therapy.  So I gotta call the OSC (ongoing service coordinator) and request clarification of how these things work.  He needs braces and as quick as I want to get them on him, things seem to just keep getting messed up.  Blisters are a real downer bc, you can see an immediate change once he has the braces on.  He was enjoying standing up and bouncing around in place.

On a separate issue all together, the teething saga continues.  His two upper front teeth are coming in.  Which has resulted in a very serious, very sleepy and very thirsty Felipe.  He isn't eating as much solid foods but enjoying a lot of formula.  The teeth are just about to break the gumline.

As promised: photos of Felipe styling his new sneakers:  Low cut sneakers worked best with the brace

The sneakers & the brace

12/11: We got him sneakers, nike red and black.  Photos to come.  He seemed to enjoy them, he quick went and tried to pull himself to stand.  the braces are so hard to put on, especially on the foot that needs it the most.  the instant I think I have it, I go to put on the second portion of it and the foot contracts and I have to start over.  Me getting frustrated is one thing.  Getting felipe to lay down for longer than 5 mins is another thing, he wants to be on the move, which is a good thing, just not when I'm trying to squeeze him into place in his AFO.

today's agenda; physical therapy in HSS; Board of Education meeting

winter is here, bundle up!

 12/10: no physical therapy appointments, no medical appointments, and yet so much to do.  Running errands in 2 boroughs.  sigh.   Need to get Felipe some shoes to fit over the braces but every time we put them on, his ankles are red and on the verge of a blister.  I'm very frustrated. We try to keep his braces on but its not a good position.  Either way, he was bundled up to face the first real snow fall.

Bundled up and ready to go....

...Mami might be going a little overboard in keeping me warm.

And so it begins...

12/9:  Today early intervention called, we have our meeting scheduled for this week. They will mail me the results of the special instructor and physical therapist evaluations. These two people came to see felipe at home and evaluated his needs. According to early intervention("EI"), the child has to be 33% delayed. So if he is 9 months old he would have to be functioning at a 3 month old level. I am seeking physical therapy for 4x a week for 30 mins. Im hopefully optimistic it will be clear to EI that services are needed and the frequency. But working with the department of education is rarely easy or straight forward. On our way back to NY. Cant wait to see little felipe.

Pls pray for the DOE/EI officials on thursday's meeting, let them have a compassionate heart and grant us the services needed for Felipe's recovery.

As requested, throwback Sunday....

 

Felipe was in Blythedale Rehab Center from 10/14 til 11/7.  The following are photos from there.  Unfortunately I couldn't capture the cutest things, which was his school.  In BCH, he had school from about 8-11.  He was one of several children who would sit in a circle w a "teacher" and work on some of his overall physical and occupational therapy goals.  It was very humbling experience bc he was there, working on sitting up and the other children who were hooked up to vents and other machines were working on opening their eyes, making eye contact or just lifting their heads.  During school Felipe would try to go from needed support to sitting up on his own.  Now he is doing it on his own, with occasionally falling from siting position once a day. 

A visit from my Titi Ivi, he missed her so much, he just stayed cuddled with her.  On his back was his bandage that the nurses and I kept trying to reinvent bc if he pooped it would get into his incision.  So thankful that's over, it was difficult to remove the bandages w Felipe's very sensative skin.

Felipe was on steroids immediately after the surgery and so he developed abnormally chubby cheeks.  but still, a cutie!

Felipe with Abuelita Blanca, enjoying a nap in the rocking chair.  After leaving BCH, we decided a rocking chair was a necessity, it helped calm Felipe and it was calming for us too.  Thankfully, Abuelito Herminio gave us the ultimate rocking chair and Felipe is enjoying it!

Felipe's scared face when the Physician Assistant would walk in the door.  Immediately after the surgery, he developed a severe fear of people in white lab coats, strangers and any one who had latex gloves on.  Thankfully he is back to his usual friendly self now, but occasionally gets very cautious around medical professionals.

Felipe is a cheater.  There is no other way to say it.  I had thought this was his first sign of being able to roll over, but its not.  He has learned to use his strengths to circumvent his weak legs and ab muscles.  In the hospital he would grab on to the crib bars and rock back and forth until he was able to pull himself to his side.  sometimes he would over do it and end on his stomach.  not knowing how to undo his position, he was just give into the sleep.  eitherway pretty creative, but now, we have to focus on him using the weaker ab muslces.

After the surgery Felipe didn't feel much on his feet and so didn't really know they were still there.  This photo was the best moment, he grabbed his knee and then pulled up his foot and was curious of his toes.  eating toe jam but still, a great moment.  he knows he has toes and is curious about them.  It was a great sign of progress.

Felipe had so many visitors.   This is him sitting up in his crib, curious about another visitor.

Yes as many suspect, Felipe was naked the majority of the time in the hospital.  He ate naked, he only got dressed for school and therapy.  He was so messy w food, why make an outfit dirty?!

Felipe's first day in his loaner specialized stroller.  He loved it! he gets to see the world while his Mami pushes him.

Felipe posing.  He makes strollers look good :)

Felipe visiting the fish tank.  It was the place to go when we got cabin fever.

Speaking about cabin fever, I was trying to give Felipe a mohawk.  He ended up looking like Elvis.  I was trying to help the time pass...hahaha

Felipe playing after dinner.  Trying to keep him entertained was exhausting.

Felipe happy to see his big bro Alex.  Yummy. 

Felipe eating an orange, making a mess.

Tio David and his family visited and left him a balloon providing hours of entertainment.

The shirt reads "my first halloween" unfortuantely after several photos this is the closest I got to showing off his shirt from his Auntie Yasmin. Halloween 2013

Halloween 2013: Abuelito Armando brought him a monkey suit. 

Halloween 2013: Felipe didn't want to wear it

Halloween 2013: Felipe rejects it, costume not approved.

 LOL

yogurt facial anyone?!!

12/8: Felipe slept well & is eating yummy breakfast of yogurt w pears.  He has been on our minds since leaving him on Friday.  And it seems God reminds us of our little Felipe by having 10 month olds surrounding us at every dinner, plane and walk that we take.  At dinner last night, a family from Montana sat in the booth behind us and the little 9 month old leaned over a smiled a big, 2-tooth smile.  my heart melted.  can't wait to be back soon.  Heard from the neurologist (surprised to hear during the weekend, love it) he doesn't have to undergo a sedated MRI prior to the kidney surgery.  It will wait till he is cleared from the kidney surgery.  One step at a time.  Surgery in less than 10 days away.  Praying for peace of mind, positivity, wisdom, and strength. 

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Phillppians 4:6 NIV

Blisters, damn...

12/6: Felipe went to physical therapy and the therapist noticed a possible blister from wearing the brace.  damn.  they are recommending that we put them on for one hour at a time,(one hour off) until his feet and skin adjust to the heat and pressure from having booties on.  Kinda disappointing to hear this over the phone from my mom, I wished I was there to hug Felipe.  Both Herminio and I miss him tons.

12/7: It was wonderful to have uninterrupted sleep.  I am starting to feel rested after a full night's sleep.  hopefully I can store upon  sleep for when we are in the hospital.  I know all academic studies say you can't store or make up on sleep, but still, its nice to hope.  Felipe is at his Abuelita's house and enjoying himself.  The skin around his ankle is red but hasn't gotten to the point of an actual blister.  whew.  I'm hopeful, no blister.

Its not pajamas its an exercise suit!!...

12/5: Felipe dressed up for his physical therapy, ready in his track suit.  His Abuelita Luz Elsa bought it for him.  Cool points for showing up all decked out, no?!  He was very engaged in therapy.  He got tired of the stretches and tried to crawl away into another patient's therapy space.  He is making small progress.  its hard to tell how much is progress and how much its me trying to be optimistic.  he moved his knee on the right leg, kicking out his leg a bit.  It sorta looked like he did the same from his left leg, the weaker side, but again, both the therapist and I wasn't sure it really happened.  Sometimes, Felipe in his gusto to get things done will actually take his hand, pick up his knee and keep it moving.  Makes me crack up but our little cheater needs to be forced to use the less dormant muscles, despite his insistence on using his more dominant ones.  More therapy scheduled for tomorrow, his Abuelita is taking him since I will be away for the weekend.  I feel like I will be missing out.  One of the blessings of this whole situation is that, while I was working, my babysitter saw all the "firsts"  First real sit up, first real crawl across the carpet, etc.  Felipe had to relearn it all.  So while we were in the rehab center, I got to see the "firsts" all over again.  nothing beats that feeling of seeing his first rolling over again, or crawling.  I feel blessed to be able to be around for it all.  At the same time, its taxing emotionally, spiritually and physically. So I can't wait for some some veggie out time.  Just me and the netflix, lol.

In the afternoon, having missed his nap & so he was cranky as ever, Felipe got his AFO- Ankle Foot O (?).  Or in my more medically appropriate terminology, "booties".  He wasn't really into the booties, mostly bc he wanted to sleep and the guy putting them on wasn't letting him.  He has to wear them as much as possible in order to keep his feet flexible. after a week, we will start to bind his feet at night to a dorsi-flex position--a little more than 90 degrees so that his hamstrings can be stretched over night.  So far, he fell asleep with them on.  Hoping & praying the transition isn't too uncomfi for him

Next things to do: Following up with neurosurgeon's staff regarding post operative MRI for his back surgery.  Or whether that gets scheduled after his kidney surgery.  Also need to find a pediatric orthopedic to do the follow up regarding the booties.  One possibility is that they can inject botox in his muscles if the stiffness gets really bad.  I rather it doesn't get to that point.  And lastly, gotta get this boy some shoes!  I've always had him in socks since shoes didn't stay put bc his foot was arched.  Now we get to go shoe shopping.  I've already vetoed my husband's request for Air Jordans...smh.  

Specialized Strollers.. check out my ride...

Felipe was given a loaner Stroller.  It weights a ton, 30 lbs to be exact, its ugly and it doesn't fold flat.  On the upside, it provides enough back support and foot rests.  The above photo was taken in ICU, he got to ride in a red wagon and was loving his trips to the fish tanks.

12/4: we had an appointment with the equipment clinic in Blythedale Hospital.  Basically checking in to see if he still needs the stroller and if so, beginning to the process of getting the stroller from the insurance company.  He still needs the stroller.  Unfortunately, its a mountain of paperwork to fill out so for now, the estimated wait time for our own stroller is 3-4 months.

The Sting Ray, is the stroller we selected.  it is slick and it swivels 180 degrees, so he can face forward or face towards me.  It isn't ideal, I still rather him be in his own stroller, but the nice stroller makes it more tolerable.  I picked the royal blue color  http://www.snugseat.com/products/seating/stingray/c-23/c-69/p-172/?sku=48539

To do tomorrow 12/5: 11am Physical therapy in HSS; 3pm custom brace fitting in HSS equipment shop.  We are taking public transportation ride....lets pray that the elevators are working!!

Hello and welcome...

Hello.  If you are reading this blog, you are family and friends of Felipe.  Thanks for stopping by.  He has gone through quite a bit the pass couple of months and to make sure that everyone is up to date, I've created this blog to keep everyone informed.  Check regularly, I will update it frequently w photos and health updates.  

Felipe was born with two medical issues.  Intradural lipoma and a hydroenphsis of the left kidney.  Lets keep things simple, this what I know, but feel free to google to your heart's content.  Intradural Lipoma: he has a fatty tumor that grew and pressed against the spinal cord.  We didn't notice any delays in his development.  We fortunately found out very early in the process bc the fatty tumor looked like a large love handle at the top of his booty.  On 10/7 and 10/8 he had surgery to remove 10% of the tumor.  Why not all of it?!  only a part of it had to be removed to get the spinal cord to fall back into place.  And with so many nerves and possibility of nerve damage, the safer course was taken, just to remove enough to make him better.  Why not leave it in?  If the tumor was left in place then as Felipe grew, his spinal cord would become more compressed and he would lose his lower extremity function, causing irreversible damage

Surgery was successful but he did loose his lower extremity sensation and function, temporarily.  Before surgery he could sit on his own, crawl and was starting to try to stand up.  However, after surgery, he barely felt pain, couldn't feel his legs, couldn't sit up, roll over or crawl.  Over a week in the ICU he started to twitch his right leg and regain sensation. The final determination was that he has "spinal shock".  Basically, the spinal cord had been pushed against by the tumor for over 8 months that once it was given space to float back into place, it swelled up.  So once the swelling goes down, he should return back to how he was before the surgery.  In the meantime, we need to work his muscles until the body makes a full recovery. Felipe was in a rehab center with physical therapy 5 times a week.  And  Occupational therapy for 3 times a week.  He was released to home 11/7.

Coming home was great but the physical therapy was not the same when we arrived home.  Visiting nurse service took a while to send out a physical therapist and when she did come, she wasn't specialized in pediatrics or in neurological disorders.  I opted to make the trip to Hospital for Special Surgery for physical therapy.  Additionally, Felipe, having not being able to move his feet, now has, "drop foot".  basically his feet are curving downward since the muscle haven't been moving. He has been measured for a foot brace and we currently have a specialized stroller on loan from the hospital.

Felipe has progressed in many areas.  He is back to crawling, siting on his own and trying to be as active as possible.  While he does crawl and sit, its clear that he favors his stronger side, his right.  His left leg is slower in getting function or sensation.  We were told by the neurologist that it will be a 6 months to 1 year recovery time.  Our doctor assures us that Felipe has all the muscle movement needed to walk, the only thing that needs to be straighten out (forgive the pun) is his feet. 

As for this kidney, Felipe was born with hydronephosis, basically one kidney is dilated.  Picture a balloon, its like when you hold on to a portion of the balloon, the rest of the balloon looks thinned out.  So since the one kidney retains urine longer, despite functioning well, it has kept the tissue of the kidney stretched out and dilated.  eventually this can lead to kidney damage.  Initially Felipe was scheduled for surgery on 7/31.  however, since Felipe does nothing in a simple matter this surgery was cancelled. Felipe was on the operating table under a preoperative scan, when the doctor noticed that he has a duplex kidney.  meaning, instead of having the left kidney function as a whole, it is divided into two sections.  The next thing to figure out was how functional are these segments of the kidney. 

On 11/22 Felipe underwent a scan which showed the doctor that the kidney, both segments are functioning well.  Had any part of the kidney not worked well, the surgeon would have removed it to prevent any damage to the rest of the kidney.  So now the sole focus is on the UPJ obstruction.  The reason why the kidney is dilated is that Felipe's tubing from his kidney to his bladder is not formed properly. This will be repaired on 12/18.  

So Felipe is schedule for surgery December 18, 2013.  As always, we welcome prayer on behalf of Felipe. See you tomorrow for another update.