Santi's Eye Checkup

Cranioversary

 One year ago today Santiago had his second major surgery to correct his right coronal craniosynostosis. He was 17 months old and this day was a very difficult day for all of us.  Santiago did way better than I could ever imagine.  Thinking of handing him over to the anethesiologist team, waiting in the waiting room for surgery updates, and seeing him for the first time in recovery brings tears to my eyes and I think it always will.  It's hard to believe that my sweet boy has been through two surgeries, two rounds of helmet therapy, and tons of doctor visits for craniosynostosis.  I count my blessings that Santiago is doing so well.  Cranio can cause all sorts of problems developmentally due to cranial pressure but luckily we were able to correct the main issue with his first surgery at 7 weeks old.  That day was extremely hard as well.  His first surgery was an endoscopic strip procedure where they just took a strip of bone out to release the pressure and allow the skull to grow normally.  His second surgery on July 9th last year was a total reconstruction of the skull and orbital rim.  This was done to ensure that there was no pressure on the brain or eyes and helped achieve more symmetry in his facial features that will in turn help with his development.  It's not a cosmetic surgery at all. 

We had an eye appointment last week because I was a little concerned that I was seeing some lazy eye type behaviors with Santi's left eye but luckily we had a good check up and they said his eyes are developing together and normally.  We saw two doctors that day and the first one specializes in eye problems with kids with craniofacial disorders and she was very complimentary to Santiagos surgeons.   She said that no one is completely symmetrical in their facial features but that it was hard to tell that Santi has even had to have surgery -much less two - because he is pretty symmetrical.  She thinks that some of what I am noticing with his eyes is due to the extra "puffy" skin that kids his age have between their eyes on the top of their nose line.  It causes sort of an optical illusion with his eyes because you can't always see the white of Santi's eyes inside close to his nose when he is looking in different directions.  She says all kids, not just cranio kids, can have this and as they grow and their face develops more, this skin because thinner. She made me feel my nose and compare it to Santi's and it's almost like their is baby fat on his! ha  She made me feel a lot better and even applauded me for being so conscientious when it comes to Santi's health and development.  Geez that made me feel good - in fact, I almost cried! Thanks pregnancy hormones!  The next doctor we saw at the same office did a real simple trick to test his eyes to see if they were developing right and most importantly together.  Santi passed it on his first try which is apparently unusual for a two year old. Go Santi!  He was very impressed!  I left the doctor office feeling much better.  It's nice to know (at this time) cranio is behind us.  I hope it is behind us for good.  Santi will go for a follow up appointment with Dr. T, his surgeon, soon after his little baby brother is born.   I, of course, am going to have Dr. T take a look at the baby as well.  We have a 50% chance of the baby also being a cranio baby and a lot of my prayers have been going toward the health of my baby.  Hopefully, Santi will have a good check up with Dr. T in the near future and his little brother will be cranio free!  If not, thank goodness for great surgeons with the knowledge of fixing craniosynostosis.  I am thankful that it is fixable - things can always be worse! My Santiago is doing wonderful and that means the world to me!

The pictures are from today's lunch at Texas Roadhouse where Santiago got to sit on a saddle and rope like his Poppa and chase some pigeons that were eating peanuts outside.  The last one was right before Santi's afternoon nap - which he slept for 3.5 hours -  he loves to cuddle with Roxie and fall asleep.

21 Months Old

 Santiago turned 21 months on the 4th and will be four months post op on the 9th.  Every day is a new amazing day in the life of Santiago and I feel so blessed to have him in our life.  Besides having a scar on his head that zigzigs from ear to ear, you would never know that he has had two major surgeries on his skull.  He is looking more and more handsome all the time and I don't know how that is possible! I have always thought he was beautiful, but you can really see the amazing results of his second surgery. His two eyes are better aligned and his eyes and forehead and everything are becoming more and more symmetrical all the time. Hector and I want him to wear his scar with pride and never be ashamed of it.  You can barely see it most of the time, but when he has a short hair cut like he does now, it shows a little.  It makes me proud to see it because it reminds me of his strength. He is a very smart boy and I feel very blessed that God has given doctors the knowledge and talent to fix babies with cranio so that they can grow and develop normally.  Without his surgery, his brain would not have grown normally.  We are very blessed.

 Here are some new things that Santiago is up to lately at 21 months old:

• wears 8.5 size shoes, 2T/3T clothes, size 5 diaper
• weighs about 33-34 pounds
• talking in 2 and 3 word phrases
• loves the color yellow - says everything is yellow
• loves to help around the house - if I'm sweeping, he's sweeping with the small broom, if I'm wiping something with wipes, he wants to do the same, etc.
• answers "yes" or "no" to questions which is very helpful because he can voice what he wants a little better now
• loves to dance
• gives the greatest hugs in the world and squeezes
• walks up to you randomly to kiss you on the cheek
• shakes his finger back and forth and says "no no" to things - especially Roxie
• loves to watch Elmo and read "mo mo books"
• likes to read a book and sit on the potty! ha!
• loves to "boom boom" which means to pretend drive the car - we aren't sure why he calls it that
• wants to "wah Yocksuh" (walk Roxie) every day when we get home from work
• doesn't really like to eat meat but loves his fruit still and some veggies
• can open doors by himself
• will open the pantry door and get whatever he wants out for himself
• has a very big vocabulary
• loves to play and learn on the iPad
• really likes tractors
• makes beautiful pictures at Mother's Day Out that he is very proud to show us
• loves to see other kids and play with them especially at our neighborhood park
• is strong-willed
• learning to say "yes ma' am" and "no ma' am" and "thank you"
• full of laughter
• loves to be outside
• licks his finger to turn the pages of a book
• uses his shirt to try to open bottles

These pictures were taken today in Tomball by the Whistle Stop Tea Room.  Santiago and I took Nana Linda to eat lunch there today since "the Hectors" went to Lovelady to hunt for the opening of deer season.  We had a really nice day!

A Visit from Poppa

Last Tuesday, my Dad came to Houston on a little business trip.  He spent the night with us Tuesday night and with my brother Wednesday night.  Tuesday was a pretty busy day for us.  I worked half a day and then took the afternoon off to take Santiago to an appointment with Dr. T.  It was our 3 month post-op appointment and it turned out to be a really great one!  He gave us more good news...he said that he feels that Santiago's surgery was a total success and every time he sees him he feels like the results are getting better and better.  So we are officially helmet free and we don't have to go back to see Dr. T for 6 more months!  I told Dr. T that we would definitely miss him but that I was VERY happy! 

So after the appointment, we went home to a playful evening with Poppa! When Poppa arrived at the house, Santiago ran to him with a huge smile on his face and hugged him tightly! We ate pizza, played at the park and Poppa got to read Santiago several books.

 

 I was not expecting my dad to come down the slide head first...I laughed so hard I cried!

 We thoroughly enjoyed the visit and can't wait to see him again real soon!!  We love you!

The Good and the Bad

Big things have happened for Santiago this last month - some good, some not so good.  He was sick with different things for about a 3 week period.  He had impetigo first, then a nasty viral infection that came with high fevers, and he still is very congested.  With all that bad stuff going on he had to take a break from wearing his helmet.  He had it on for almost 5 straight weeks before he came down with impetigo and Dr. T told us to leave it off until his head cleared up.  I knew deep down inside that this long break from helmet wear was not necessarily a good thing as far as Santiago's recovery goes post-surgery but we sure enjoyed having a regular little boy around the house and not being hit by accidental helmet head bumps.  That thing can really hurt!  So here comes the good stuff...the really good stuff!  I took Santiago to his helmet adjustment appointment on Monday after work to tell them how long we had not been wearing the helmet and waiting for bad news about having it off for 3 solid weeks.  Erin took a scan of Santiago's head using the Star Scanner and instead of sharing bad news with me she did quite the opposite.  She showed me the results and told me that the goal was to get all the different types of measurements to 90%.  I'm not real sure what all the data means but all our numbers were above 90 - the lowest was a 92 and the highest was 98.  There was also one more main area where the two diagonal readings need to have a difference of 2 mm and Santiago's difference was 1.2 mm.  So basically he passed the helmet test with flying colors and as far as remolding goes we could not get more symmetrical with his measurements.  This was music to my ears!! She said the magic words to me "I would like to discontinue the helmet."  Whew!  I asked Erin to go ahead and make some adjustments on Santi's helmet just in case Dr. T wanted us to keep it on for protection purposes still so she made the adjustments and sent us on our way.  I called Dr. T's office on the way home and left a message about our news and also wrote the nurse an email when I got home explaining everything.  On Tuesday, De emailed me back and said Dr. T said we can take the helmet off!! YIPPEE!! We are so excited.  We now have a healthy boy with a beautiful round head : )  I hope this is the end of our cranio journey with Santiago.   We will have to continue check ups with Dr. T until Santi is 7 years old so the journey is not completely over but I think I can finally say the toughest part of this journey is over. 

Two Months Post-Op

(Beware this is a long post - mostly for my memories, but feel free to read)

This last week was jammed pack with doctor visits.  On Monday, Santiago had a helmet appointment where we got news to leave the helmet off a for awhile until the slight fever he had been running since Sunday wore off.  Tuesday we went to see Dr. T for a post-op check up and Wednesday, I had to take Santiago to the pediatrician.  It was three very long days with work and doctor appointments involved and it really made for a long week. 

Last Sunday, Hector and I noticed a bump behind Santiago's left ear and a rash that had started on Santi's forehead and neck after he got his haircut.  We also noticed he was running a very slight fever - 99.3.  He was acting pretty normal so weren't too worried.  Monday I had to leave work just a little early to pick Santiago up and take him to the Woodlands to the Orthotic place for his helmet.  I noticed that the bump behind his ear was bigger and Santi did not want me to touch it.  It was about the size of a nickel.  His helmet is fitting just fine and although he has been hot in it and pushes up on it quite often, Erin did not make any adjustments to it.  She looked at it while he was wearing it and decided the fit was still good.  She did not think the rash on his forehead was from the helmet and when I told her he had a slight temperature, she said we should leave it off until the fever was gone.  She thought I should get more information from Dr. T and let him make the decision about the other things Santi had going on.  She didn't know what the bump was behind his ear.  So although I was a little worried about what this bump could be, we had a very nice evening snuggling with our little boy without a big plastic thing on his head. We had forgotten how wonderful it is to see and feel his sweet head!  Deep down inside I was a little nervous that Dr. T was going to tell me that it was a cyst or something worse and that we might need another surgery because of this so I asked my in-laws to go with me to his appointment to Dr. T on Tuesday for a little moral support. 

On Tuesday, I left work and met Santi and his grandparents close to the freeway so we could ride together to the medical center to Santi's appointment.  When we were called back to the exam room, both the nurse and Dr. T asked if Santi had chicken pox because of the red bumps he had on his forehead!  That hadn't even crossed my mind and I was hoping that wasn't the case.  Dr. T talked to us about Santiago's head and he recommended me taking him to the pediatrician because the big bump behind his ear was a swollen lymph node and he found a few more in the back of his head that were swollen.  He predicted that the lumph nodes were swollen because of whatever was going on with his scalp and head.  He thought the rash and now flaky scalp had to be related.  He told us to leave the helmet off until we got all the skin issues resolved.  He made fun of me in a playful way when I told him why I had brought Hector's parents with me. I explained to him how hard it was for me to be alone last May when we came for a regular checkup and I found out Santi needed a second surgery.  It was a LONG drive back to Spring from his office that day because I was an emotional wreck.  He told me that he now knows that I am scared of him whenever I bring back up! HAHA  I feel blessed to have family here that can support us in these scary situations.  I trust Dr. T and I told him that I do 100% - I've let him take my baby away from me twice before and he has done a wonderful job with him.  Dr. T was very pleased with the way Santiago is looking.  He said that last month when we came in he still wasn't completely happy with the way Santi's orbital rim was looking on the right side but this visit he is much more pleased.  He told us last time that with time, he would continue to improve and he has been right.  Santiago's eye brows are beginning to move together with facial expressions and his eyes are a lot more symmetrical.  He still isn't completely symmetrical but he is getting more and more perfect to me.  I thought he was perfect before he had any surgeries though! His little forehead is very rounded now and I was glad to hear that Dr. T was pleased again. He said it is going to keep improving with the helmet and with his normal brain growth.  The brain helps to form the skull as he grows.  So Dr. T's appointment was a success but we still didn't know what was going on with Santi's skin and scalp and why his lymph nodes were swollen.

Wednesday I took Santiago to the pediatrician after work.  We didn't get to see his normal pedi but we got a very nice one.  She diagnosed him right away with impetigo.  I didn't know much about this but she said it is very common with kids and most kids get it at least once growing up.  Basically it's a skin infection caused by the bacteria we have normally on our skin.  She said he probably had a small break in his skin somewhere on his head which could have been caused by his helmet, a bug bite, or anything really.  The bacteria got in his skin somehow and became infected.  He may have even caught it from someone at Mother's Day Out. Who knows?!?  I was relieved to hear that it was an easy fix with antibiotics for 10 days.  She instructed me to keep his fingernails shorter than normal and to put neosporin under his nails. She also said not to wash his hair more than one time a day and to keep his skin dry.  He should be cleared up real soon but it may take a little while for his lymph nodes to completely go down.  We kept Santiago home from Mother's Day Out just in case he was contagious.  He has been on his meds for a few days now and his rash has already cleared up alot.  It still isn't  completely gone but it's a lot better.  Now his scalp is flaking and that is a little gross but that too will pass. 

By Wednesday I was beat and I still had two more work days to go to get through the week.  Friday was a doozy and I was glad to be able to just hang out at home on the couch and watch a movie after Santiago went to bed.  Only bad thing is that I woke up not feeling the best today.  Stress and exhaustion are not a pretty combo and that always puts me under the weather.  I'm going to try my best to take it easy and not let this get the best of me - it's probably just allergies! 

Good News from the Eye Doctor

Yesterday I had to take Santiago back to the eye doctor to have his eyes re-examined.  We took him in last May because Dr. T recommended us having his eyes checked out by a pediatric opthomolagist because sometimes coronal cranio babies have issues with their eyes.  We went to see the eye doctor a week or so before we went to Dr. T's and found out Santi needed a second surgery.  Santiago HATED the first visit to the eye doctor because they had to dilate his eyes and we were there an extremely long time.  He was a little traumatized and scared of doctors after also because of those darn eye drops.  Long story short, we went yesterday and were in and out in about 25 minutes.  The same doctor we saw last time was there as well as a specialist for amblyopia.  Cranio babies sometimes have eye muscle issues because they favor one eye over the other.  Four months ago they were a little concerned that Santi was going to have this problem and yesterday we got great news that his eyes are just fine!  I was relieved and extremely happy!  God is good!
We will have to go back in 6 months to make sure his eyes are ok and staying strong.  I think one day he will have to wear glasses because they can already tell that his left eye is a little farsighted at this time but not enough to need glasses now.  If he needs glasses one day it will be because both his parents wear glasses and all my side of the family wears them as well.  It won't be because of his cranio.  I was also very pleased to hear that Dr. M can see more symmetry in the shape of Santi's eyes as a result of his second surgery.  He reassured me that with time as he grows more and with the helmet there as a guide, his symmetry will continue to improve.  Dr. T has been telling me that as well, but it was nice to hear it from another doctor.  All in all - we got great news and Santiago is doing great!

The Last Week...

 

We had a very busy last week of summer. Hector and I both started back officially to work yesterday. Santiago has been wearing his helmet for one week as of yesterday also.  Here are some random pictures from our week.  Above Santiago is carrying around a whole cucumber and eating chunks off the top! He grabbed it from the fridge and thought he was quite the comedian running around the house eating this.  He ate about an inch off the top before he wanted to give it back to me!  Below Santiago is blowing on an official

vuvuzela from the World Cup.  Our friends Paul and Jennifer brought it back from Africa for him. 

 We left Spring on Thursday to go to San Antonio for the weekend.  My best friend from college was throwing her son a first birthday party so we had to go celebrate with little Cohen and the family.  On Friday, we took a very HOT trip to Sea World.  We had a blast and I cheated on Santi's helmet wear time this weekend because it was so hot.  It's been over a 100 every day and poor Santi just sweats and sweats.  He didn't wear the helmet at Sea World or at Cohen's birthday party because it was an outdoor swim party.

 Santiago loved all the animals but he really liked the Shamu show.  They got the entire audience to do these hand motions to make the whales splash the audience and Santi was trying his best to do it with them.  He stood up on my lap almost the whole show and enjoyed every minute of it.  He would sign "more" too when they stopped for a minute or two.

 Hector tried to take him to the splash zone to get a little wet but he didn't get down there in time. 

 This next picture is Santi being his goofy self at Shannon's house.  He has a paper towel in his hand and he was cleaning with it but then decided to roll around on her wood floors.  Cohen and Santi got along real well.  They enjoyed pushing eachother around on Cohen's car.

 At Cohen's party, I got to see all my college girlfriends so that was an added bonus!  Yvette helped Santi hit his first pinata.   The giant soccer ball was full of all kinds of toddler friendly treats! Shannon went over the top on Cohen's party! It was great!

We had a wonderful last weekend of summer in San Antonio.  I only wish we would have had more time there to do other things before heading back to work. 

Side note about the helmet - Santiago started off doing really well with the helmet but as the time increased each day and he had to wear it longer and longer, it started to bug him.  He is really hot in it.  His poor little head is soaked with sweat when you take it off and he even gets a ring of sweat around his shirt collars during the day - even when we are inside!  We got it adjusted yesterday but I think we already need to go back because today was not a good day at all for him in his helmet. It's too tight on his left forehead and its leaving pretty big red marks on him.  I just pray for this month to go by quickly and for him to get used to it.  August heat is miserable! Hopefully September will be better for him.

Let the Helmet Therapy Begin

Guess what? It's been exactly one month since I had my second surgery and today I am getting my ha! (hat)

These are the directions that my mom and dad have to follow for my helmet wear.

They took a scan of my head a couple weeks ago and then made this really cool mold of my head so they could make sure my helmet was going to fit right.  I think it's really cool! If you take a close look you can see some areas that are whiter than others.  This is where they added some plaster to make sure a little pressure is applied to my head in these places when I'm wearing the helmet.  The rest is going to be a little loose so my head can continue to be shaped nice and round.

It took about thirty minutes to fix my helmet and I had to wait in this boring exam room.  I looked at the windows alot and talked to my momma.  While we waited, they were cutting my helmet so my ears and eyes won't be covered up when I put it on.

This is Erin.  I liked her.  She put my new hat on me and made sure it fit just right. 

I really liked looking at my head mold.  I didn't want Erin to take it away!

Cheese!

We had a lot of issues with paperwork and insurance while we were at Dynamic Orthotics and Prosthetics so we had to wait over an hour after getting the helmet while they worked everything out.  I was extra sleepy and I fell asleep on the way home.  My helmet doesn't bother me a bit!

I even stayed asleep when momma got me out of the car and slept a whole hour with my helmet and shoes on in my crib!  Guess this helmet thing isn't going to be so bad after all....

Let's hope that it continues to be this easy!!

First Post Op Appointment

We went to see Dr. T on Wednesday afternoon. This was his first check up after surgery. All in all we got a good report. We shared with him that it took about 10 days to get Santi completely off all pain meds and to be eating again normally. He felt his head along the incision line, his forehead, and eye brow bones. He was happy with the results and said Santi is looking real good. He says he is still a little swollen and that the complete swelling won't be gone until 6 weeks post op. Dr. T also explained that we should continue to see the shape and symmetry of his eyes change and improve. I asked about a bump that Santi has in his incision line on the top right of his head that has gone down a bit but is still there. It looks like a knot when you hit your head on something. He explained that it was one of the dissolvable plate or screw and with time the bump will disappear. I also was a little concerned with some reddish areas on the incision, especially right behind Santi's left ear. He said we are going to see more of that as the sutures begin to dissolve. This will take a few more weeks to happen though. Dr. T also explained to us how the bones are going to become "sticky" as the new skull bones grow over the plates and strengthen. We were a little confused with this information because we don't know if the bones really are sticky or if its a sticky situation while new bones are growing and filling in the gaps that were created during his reconstruction. Either way it means that Santi is going to have to wear a helmet for protection. We will pick up his helmet on August 9th for our first fitting and he will have to wear it during the day for 2-3 months. He won't have to sleep in it. We are relieved that he doesn't have to wear it 23 hours a day like last summer. Hopefully he will learn to like his "hat" and it won't bother him too much. We will go back to Dr. T as soon as we get the helmet to make sure it fits correctly.

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2 Weeks Post Op - 1st Helmet Appt

Today we are exactly 2 weeks post op.  Everyone keeps asking how Santiago is doing and all I can really think to say is "great."  He is finally eating, sleeping, pooping (haha) normally : ) I am thrilled he is doing so well!  Besides having to "doctor" his incision twice a day, things are mostly normal.  Santiago will say "doc" when I ask him if we can doctor his head and put his medicine on. He is learning so many new words lately.

Today we went to Dynamics Orthotics and Prosthetics for our first helmet appointment.  Santiago is going to have to wear a helmet again but we aren't real sure of all the details for the helmet this time.  When we go back to see Dr. T next week, we will know more.  He originally said we will need a helmet more for protection this time rather than molding. We got to see the same consultant as we saw the first time we went to Dynamics for our helmet fittings.  His name is Aaron and Santiago really liked him the first time around.  Santi did not remember Aaron and if we probably won't be seeing him for our next helmet appointments because we are hoping to begin going to their office in the Woodlands because it is closer and Aaron no longer works there. 

Santiago was less than thrilled to have the sock thingy stretched over his head.  They have to put this on him to smooth out his hair and to see the shape of the head better.  You can see the machine in the back of the following picture that they use to take the scan of the head.  It's called the STARscanner and its a lot like making a copy of your baby's head.  You simply lay the baby inside and they push a button and a little red laser scans the length of the head in about 2-3 seconds and then you are done.  It would be real simple if the baby can lay still for those 2-3 seconds but sometimes we had to be scanned multiple times to get a good scan.  Luckily, today it only took 2 tries.  Once without Aaron in the room and then the good scan when Aaron came in to help us.  Santiago got really upset when Aaron first put the sock do-rag on his head so he left us in the room alone and told us that we could try if we calmed Santi down while he was out.  So we did, and we tried but I didn't know where Santiago's head needed to be inside the scanner and when I laid him down and pushed the button - it scanned his mouth down to his tummy.  Santiago is a tall boy so he took up the length of the machine now - I didn't know his legs were going to have to hang out so his head could be in the center. 

Overall Santiago did a really good job in there.  Hector and I asked a lot of questions and got some neat printouts that show how his head has changed from April 2009 after his first surgery, during helmet wear, close to the end of helmet wear in June 2009 and then now after his 2nd surgery.  It was cool to see the different views on the computers at Dynamics and I was glad to get a couple printouts for keepsakes. 

Look how my boy has grown! Santiago is touching his head saying "ha" for hat in today's picture and the second picture was taken the beginning of April '09 after our first surgery.  He was about 2.5 months old!

  It's seems just like yesterday he was this tiny....boy time flies! My little man has been through a LOT in his 17 months of life : ) He's so strong!

Day 8 & 9 Post Op

Day 8 - Post op

Every day Santiago is showing more and more of his true colors and we are loving seeing more and more of our little boy come back with each day.  Yesterday was the first day he had his appetite back and ate three meals and snacks and wanted more than just fruit all day long.  During the last week all he has really wanted to eat was fruit and popsicles.  He is sleeping well also. Yesterday he took two really long naps and today he took one long one and then went to bed earlier than normal.  Santi's swelling is still decreasing every day which is good.  He still has a little black eye on the right side but that too will go away with time.  I am having to apply Biacitracin Zinc Ointment to his incision several times a day so that is why his hair looks extra oily. It gets every where - including all over my face and neck when I am holding him. 

Day 9 Post op

This is Santi's right side where the majority of reconstruction took place.  His right coronal suture is what was prematurely closed at birth.  Look how nice his profile is and how round his little forehead is looking! We are so pleased  : )

Home Sweet Home

Today is Day 6 after surgery. I can't believe it has been one week as of tomorrow.  The picture above was taken yesterday (Day 5 Post Op) We were released from the hospital on Tuesday morning which was 4 days after surgery.  Both of Santiago's eyes had opened and he hadn't needed any morphine for over 24 hours so we were able to be discharged.  We were excited to be going home.  As we were waiting in the lobby area for my parents to pick us up and take us home, I got two different reactions as they saw my Santiago. One lady asked if he was in a burn accident and a man asked if he had an allergic reaction to something.  Santi's face was still really swollen and red around his eyes. The purple coloring around his eyelids had turned deep pink/red.  His little eyes were barely peeking out but they were both opened.  I know that I am going to have to prepare myself for the staring and looks that Santiago will recieve in public but these two reactions made me think that maybe his incision isn't that noticeable - at least right now because his face was drawing more attention to him.  We walked up and down the busy hallways waiting and he was pointing at plants and stairs and smiling and talking.  Just his actions bring attention to us and now his appearance will too. That's ok.  I'm going to have to have thick skin (again) and be ready to explain why he has an incision and why he will soon be wearing a helmet again.  All I told these two people who asked about him this time was that Santiago had to have surgery on his skull and his face and head were very swollen and bruised from it.  That's the truth in a nutshell.  I love telling people in detail about craniosynostosis because it raises awareness and teaches people about the condition and I know I will be doing this many many more times in the future and my whole life! 

Well we have been home for two days now and Santiago has been improving every minute - appearance wise and how he is acting.  On Tuesday when we got home, he was so excited to see Roxie and to be able to walk around and see his toys.  I was extremely nervous letting him walk and I think Hector and my parents were too.  His equilibrium was a little off and he was walking a little crazy.  We had to hold both of his hands every where he wanted to go.  He would take a few steps forward and then go to the side or backwards. He almost looked drunk haha!  This got better and better with time as well.  Now he can walk normally but we are still be cautious because we do not want to take any chances with his head.  The picture below was taken today - Day 6 Post Op.   You can see that he is smiling.  The top of his head and forehead are still pretty swollen. His eyes are just a little swollen and his right eye has a little black line under it.  His overall coloring isn't back to normal but I am surprised how fast his purple eyelids disappeared. 

Overall, we are really pleased with the outcome of the surgery.  My parents will be leaving us tomorrow morning since Santiago is doing so well.  He isn't as clingy as we expected and he is already way more active than we expected at this time.  We have our first post-op appointment with Dr. T on July 28th and we will be fitted for a helmet next Thursday or Friday and will get it at the end of the next week.  Again, thank you for all your love and support and especially the prayers! 

PS - If you are interested in seeing more pictures from surgery and post-op - especially cranio families - please don't hesitate to email me - craniomommy@gmail.com  I would be happy to share them with you especially if you are going to have to embark on a similar journey as us. 

Day 3

Hector, Santiago and I all had a really good night last night.  Santi did a lot of sleeping so so did we!  We woke up for Santiago's scheduled blood pressure and temp checks and then at 5 am for his blood draw.  We had the same tech that was successful for drawing blood so she did a good job again with Santi's little veins.  I also woke up once with Dr. B standing over the bed looking at sleeping Santiago.  That kinda surprised me to have him stop by in the middle of the night and he didn't say much.  He just said that he was looking good and he was swollen. 

We woke up and ordered Santiago some breakfast and while we were waiting for it to be delivered, Hector decided to run downstairs and get us our breakfast too.  It was about 8:30 and Dr. T came by to visit us.  I just knew Hec was going to miss him but luckily I sent him a text message and he replied that he was in the elevator so he made it back in time to hear what Dr. T had to say.  He is happy with Santi's progress and said that it looked like his head and face was softening.  The swelling has made him skin look and feel really tight.  His brusing is changing from a bright purple to a lighter purplely pink color.  Looking better!  While we were all talking, Santi was sitting in my lap and he seemed to be seeing a little. Dr. T said that he thought his eyes or at least one would be open today or tomorrow.  Sure enough we saw a little peep in his left eye and he was seeing until he took a long nap until 2ish.  By the way he had his last dose of scheduled tylenol with codine at 6 am this morning so this means he went 8 hours instead of 6 without pain meds.  He woke up with both eyes swollen shut again but this is normal.  We tried to feed him some lunch at this time but he was not interested in his food at all.  We gave him his meds and then took Santi on a walk in a wagon and he loved riding around in it. Hector got the wagon from the Child Life center her at the hospital. They have a neat playroom for the kids also.

My parents came today and pulled Santiago around in the wagon and loved on him some more. They ate lunch with us and left when Santiago fell back asleep. A Child Life worker later knocked on our door and told us that they were making snocones in the "park" and invited us to come outside. I asked how long they expected to be out there because Santi was sleeping but as soon as she shut our door, Santi sat up in the bed and said "bop bop." I tell you, he dreams of popsicles and snocones!! So we took him out there to get him a grape snocone and walk around.  Hector's parents showed up around this time and we noticed that Santi's right eye this time was beginning to open.  It has a whole slit open instead of the little peep hole we saw earlier in the other eye.  Now that he can see a bit, he didn't want to touch the trees he loved touching before.  He wanted to see everything! He tilts his head back so he can see upward or opens his mouth wide so he can see.  I think its like us women opening our mouth when we put mascara on - it really opens your eyes wider and he figured that out! 

He wanted to walk now that he can see so we asked the nurse if we could tape up the IVs in his feet so he wouldn't trip on them.  I was scared he was going to pull them out since he is moving around alot more with his sight coming back. Instead of tape, she brought us some socks that had grippers on them so he wouldn't slip as easily and they also held the IV in place.  We took him to the sunroom/playroom down the hall and let him walk by holding our hands.  He was so excited and so mobile! It was a little scary because he still can't see real well but he wanted to do everything including climbing the little steps and going down a slide.  He also is laughing and mimicking our sounds more and his little personality is coming back.  It is absolutely amazing to see his resilience and strength!  God is good!


I forgot to mention - we were able to dress him in a onesie today, well two different ones because he dirtied the first one with a well waited bowel movement! haha  Hector and I stretched the neck opening as big as we possibly could so we could put the shirt over his head without it touching.  It was nice to see him in clothes rather than a hospital gown or just his diaper that he has been hanging out in. 

Right now it is almost 10 pm and he hasn't had any pain meds since 2 today.  He is running a low grade fever still and I think he feels warmer than he did a few hours ago.  Our new night nurse came on duty at 7 pm and asked if she could test his IVs, both had gone bad and since we are taking all meds by mouth now we don't really need them.  She took them out! It's nice to not have any cords hooked up to my little man anymore.  We took the monitors off earlier today as well. 

THANKS again for all your prayers and support.  I can't express how much it means to me that all of you are praying for my Santiago.  The power of prayer is amazing and it is definitely working. Thanks so much!
We may be sent home tomorrow so say a prayer for that!

Day 2 - Post Op

Last night we slept a little better being in our new room.  We had one scary situation about 2:30 am that brought me to tears.  Santiago woke up screaming and pointing like he was seeing something scary.  I immediately picked him up and held him but he kept pointing in a different directions making a wierd scream cry sound.  I tried to comfort him and after awhile the nurse came in and gave him a dose of morphine to calm him down.  I think he had a bad dream and was also really scared when he couldn't see anything when he work up.  I HATED this episodevery much.  It was scary and sad and it took me a long time to go to sleep again after the morphine started working for Santi and he fell asleep.  I'm so glad that we are in a regular hospital room and that Hector was close by.  Thank God for that. Santi needed to know that mommy and daddy are right here with him. 

Santiago is really swollen now and they have begun to put medicine in his eyes to keep them moist and infection free while they are swollen shut.  Dr. T says today will be the worst as far as swelling and coloring go.  His right eye is a lot more purple than the left.   His nose is beginning to bruise at the top left part by his eye. 

He woke up very irritable and upset at 10:30ish in the morning and was hitting me and kicking his feet.  He also was grabbing and hitting at his head so we requested the nurse again who brought him morphine since we weren't close enough to noon for his tylenol/codine dose.  I think my baby was in a lot of pain and this was making him very upset.

The rest of the day was actually getting better.  Santi is starting to show a little of his happy self when he is awake.  Hector has been wonderful waiting on the two of us and Santi has begun to wake up and say "Dada juice" or "dada wawa" when he is thirsty.  Daddy has become the juice man! 

We got permission to take Santiago's monitors off occasionally so we have gone all quite a few walks in the hallways.  There is a "park" in the middle of the pediatric floor with these really cool fake trees.  Santi will ask for a "wa" so we would have to get up to take him on another walk. 

Day After Surgery

We had a very long almost sleepless night in PICU.  Santi slept a lot but Hector and I did not.  Hec got a room in the Ronald McDonald House and was planning on sleeping in there for a portion of the night but I ended up calling him at 3:30 am because the nigt time nurse needed to draw blood for some tests.  They had to run a blood chemistry test and look at the hemoglobin levels.  They are looking for sodium levels which are signs of dehydration if low and the hemoglobin has to do with red blood cells I think  It took 3 nurses and a full hour to draw just a small tube of blood. They tried in both handsand one foot before getting what they needed.  I was glad I got Hector to come back because it was not fun at all to see Santi crying from all the poking.  After they left and Santi fell back asleep the day nurse who was now on duty informed us that they were going to have to try again because the blood sample they took clotted and would not work. We couldn't believe it!  I was feeling mad and tired and everything in between and I just prayed that they would be successful on the first try this time and it would be over quickly.  And they were and it was!

Dr. T came in and loosened Santi's head bandage a bit and told us that he looked good.  Later Dr. B also came in and loosened the bandage more and told us that it helps keep the swelling down. He also said  Santi was doing well.  Santi has been pulling on the bandage when he is awake and Dr. T said its ok if it comes off. 

Later in the morning they told us that they were going to be moving us out of PICU onto the pediatric floor as soonas they had a room available. We were glad about that because we would have more room for our families to stay and visit and less interruptions.  In PICU, you can only have 2 visitors at a time.  Our day nurse would let us bend that rule a little and have 3 but the night nurse would not. 

They moved us to our new room around lunch time.  Santi is still not eating much but he will drink a little apple juice and gatorade. His pain is being controlled by morphine, tylenol with codine and they are giving him antibiotics and pepcid as well.  He wants me to hold him all the time so I have laid in the bed with him in my arms or on top of me.  Going to the restroom is hard because he knows when I am gone.  His eyes are swollen shut and turning purple but he still knows when I am not there. 

This afternoon we had a pretty scary episode where Santiago was very upset and would not calm down.  Hector's parents and sister were here and Hector had them leave the room for awhile because we werent real sure what was going on and I was getting scared and upset.  I was standing up holding Santi and he was hitting me in the face and on my shoulders and chest.  His body was stiff and he would not let me comfort him.  We had the nurse come in and she gave him some morphine and after about 30 minutes he was relaxed and asleep again.  I also fell asleep with him and the Ornelas' left while we were sleeping.

Later in the afternoon or early evening my parents and brother came by.  Santiago was in much better spirits and even let me mom hold him.  They fed him a popsicle too.  Santi continued to pull on his head bandage and it seemed to be really bothering him.  I was holding him in the bed and I kept telling him to hold my hands and to leave his fancy hat alone but after awhile he managed to get it pushed up and turned sideways on his head.  The ear covering part had moved to in front of his forehead and one behind the head.  I was really nervous about the head covering coming off. Its hard enough seeing my baby's face not looking a think like he normally looks.  His face and eyes are really swollen and his eyelids above and below the eye are bright purple.  I kept saying I wasn't ready to see his incision and what he head looked like.  Eventually he pushed it even farther up on his head and I think my dad pulled it off.  I immediately began to cry.  I wasn't mad that the head bandage was off but the emotions hit me like a brick wall.  He has a beautifully stiched zigzag incision on his head from ear to ear and they shaved a strip of his hair.  He has all his other hair. It really is amazing to see how they stiched his little head back up. It's like artwork.  He looks nothing like himself but I know he will soon.  He will always have this battle wound scar to show for his courageous cranio journey.  I hope that we can make him comfortable with it and that he will always be proud of himself and never embarassed by it.  He has been through so much already and he isn't even a year and half yet.  He is such a strong boy!

PS - I decided not to post any pictures of him for awhile because it is really hard to see.  If you would like to see him, I can send you a picture through email.  There may be other cranio families out there reading this and I know I wanted to see what other babies looked like to prepare myself.  Feel free to email me if you are in that situation.  We need all the support we can get on this journey. 

Thanks again to everyone out there praying for my little man. 

Pre-op Appointment Day

Today we had a day full of pre-op appointments for Santiago's July 9th surgery.  We had to go to the hospital where surgery will take place for a visit to the anethesia clinic.  There we had to fill out some paperwork and then meet with some nurses and a pediatric anethesiologist.  Santiago got a couple stickers and a Snoopy stuffed animal from the lady we did paperwork with.  I told Santi to put his sticker on his pansa thinking he would stick it on his t-shirt on top of his tummy but instead he lifted his shirt and stuck it directly on his pansa! Funny boy!

Walking in this hospital brought back tons of memories and emotions.  Going to the clinic we had to pass buy the children's day surgery waiting room where we sat and prayed while Santi had his first surgery in March of 2009 when he was 7 weeks old.  Then we had to walk past the recovery section as well.  I could feel my stomach and chest getting tight and I thought I would be able to contain the tears but when we went into the actual anethesia clinic and had to talk to the nurses, I couldn't fight the emotions any longer and I cried.  It's just an indescribable feeling being in that place and thinking of what we have been through and what we are about to go through again.  Santi did pretty well except he didn't like to be weighed and measured by people he didn't recognize.  He cheered right up when he got to eat a sucker though.  Seeing his smile makes me feel better too.  During the paperwork process I caught a pretty big mistake on our doctor's orders and I was glad that we got that cleared up.  I know the doctors know what they will be doing to Santiago but the paperwork needed to be corrected.  They had him down as "metopic craniosynostosis" for his surgery.  Santiago is right coronal and his procedure was recorded incorrectly.  They had to call Dr. T's office and have nurse De clear everything up.  We learned the name of his procedure today - Cranioplasty with total forehead reconstruction. 

After Anethesia we had to go to Dr. T's for one last visit with him before our big day.  He explained to us again about recovery and how Santiago is going to swell.  He told us day 2 should be the worst and as soon as Santiago can see out of at least one eye and his pain is being managed, we can take him home.  This could be as early as 4 days post-op.  I'm sure I looked a mess going into Dr. T's office because both De and Dr. T asked me if I was doing ok. My make-up was faded from my crying.   I answered with a yes even though I was feeling all kinds of emotions.  Dr. T also asked us he we wanted him to look at Santi's pictures again as a confirmation of the surgery decision and when I asked him if he thought he needed to and he said no, I said no as well.  He just wanted to make sure I was sure of the decision.  Hector and I both know this is the right thing to do and that we need to do it sooner than later.  As much as we do not want to put our baby through another surgery, we are so ready to get it behind us so we can totally be on the "other side."  This is going to be the hardest thing to go through (again) but I know things could be a lot worse and I'm thankful for that.  We do have a healthy boy - as Dr. T says - this is bone surgery, not brain surgery. 

Santiago got a total of 3 suckers today from all the lovely nurses and he was one happy boy with his "bop bops."  Here is De - his favorite nurse - giving him a lollipop.  He screams and waves and laughs when he sees De.  She has the cutest little voice : )  and Santi likes her!