"STRENGTH does not come from physical capacity.
It comes from an indomitable will. "
~ Gandhi


E-Rod's Angels

E-Rod's Angels

Wednesday, January 25, 2012

Week 2 of PT and our 3rd week in Florida

Ethan has been more active this week. He has been racing with Steve and Abby! Good thing he is super competitive because that always gets him on his feet. PT is still horrible but it's only the last 10-15 min. If we could do without the last 2 stretches (bending of the knee) we would be A'sing this. Ms. Ivette is great with Ethan and he doesn't mind seeing her but always very vocal about disliking the knee bending. Pin cleaning has become a breeze. Mommy is still paranoid but over all we are during wonderful with pin cleaning.

Today was our first water PT. Ethan was totally against it when we arrived. He told us how he hated to swim. Yeah right, you know that's not true at all. He put on a fight for about a minute then once in he was swimming like a fish!!! He LOVED water PT!!! I think we will be doing more swimming!

All the kids are doing great! Every day we see progress but of course we all have our bad days. Ethan of course is still waking up at 3 AM and 5 AM because he is either uncomfortable or in pain. I hope he gets to sleeping better soon. He tosses and turns the entire night but good thing he is doing naps everyday.

That's our weekly update. The weekend is almost here and we will have time to go out and catch some vitamin D. I love Florida in January!!! It's beautiful everyday!!

Thank you for the continuance prayers!!! Talk to you soon.

Thursday, January 19, 2012

Physical Therapy Week (AKA - Pure Torture)

This week started out so good. Ethan was actually doing better and then PT started. Did I tell you, I cried the first day before the actual PT started. Well let me tell you again! It's zero fun listening to the kids scream. Not only Ethan but all the other kids prior to Ethan's session. My heart aches for all the kids during PT! It's tough but mandatory! I get it, no PT equals major injuries but why does it have to be such torture? Why?

On a better note, all the kids are doing so good! Peer pressure works like a charm! Today Sophia said "I want to show off that I can walk!" then you hear Ethan say "me too!". He took about 10 sets even though he was aching some. We got his walker today and tomorrow we will get his shoe lift! I hope that with his shoe lift he will gain that needed support and encouragement that he needs to take off and become active.

Pin care is much easier now that he is allowed to shower! I've been a little paranoid about pin cleaning. So much that I texted Servado and attaching 8 or so pictures! Every day one pin worries me more and more but he assure me everything looked fine but I can't help but to worry!

Ethan is eager to start water therapy but probably won't be for at least another week. He loves to get picked up by the bus that takes us to PT. He also enjoys bubbles and picking up pine cones from a tree on our way to or from PT. We had an art teacher come by today and guess what Ethan painted? His pine cone and it's blue his favorite color. He also loves to play the Wii (Mario Bros).

Today, we met Mary and Meriel as we finished up with PT. Meriel did not disappoint me. She is as feisty as I imagined! I didn't get to chat long but look forward to visiting with Mary tomorrow. We are having a pizza party tomorrow and Meriel and Lily will be joining us!


I'm not looking forward to PT tomorrow or even doing it at home this weekend! Please pray that Ethan continues to be strong and that his pain subsides. Also, that I get the strength I need to continue this journey!

Thank you for the continues prayers and support. Good night!

Monday, January 16, 2012

Weekend and First Day of PT

We had a great weekend for the most part. Ethan is more mobile in and out of the wheelchair has been getting easier by the day. He played cars with Charlie on the floor and had lots of play time. The only thing that has not changed is pin site cleaning still sucks but sucks a little less after the shower today!!! He started his PT and it went well. He wasn't crazy about bending the knee but hopefully that will get better. We also started lengthening today so the more we turn the harder it will get in PT. Everyone is doing great. Abby is walking already she even wants to run! Wished I could bottle her spunkiness and give some to Ethan. Ethan refuses to walk and doesn't help that we don't have a walker maybe after we get one it will be easier. Maybe after seeing all the other kids walking he will get encouraged. This is the only time pier pressure is a good thing.

I had to run to the restroom to compose myself after listening to the agonizing cries/screams coming from the PT room or as I call it the torture room. UGH!!! Can't wait tell this is behind us that's for sure!!!! My neck is in knots and I'm super stressed. We were thinking we had an infection and that added additional stress. good thing it was just me being paranoid! Tony was getting the "I'm about to kick your butt" look that some of you have seen on more than one occasion. The funny part was that he knew that! I guess he will know the real me soon!!! All I think about when I see him is "TONY TONY has done it again!" I guess I'm dating myself! LOL

Abby, Sofia, Eyal and Lily are all doing well. We've all started PT today so lets see how the rest of are week goes.

Please keep praying for our little guys and of course all the mommies and daddies. We are praying for a break and better days!

Friday, January 13, 2012

3 Day Post-Op (Discharged Day)

Eddie had a bad night last night not because Ethan was not doing well but because the nurses and techs came in every 2 and 4 hours. The vampires showed up around 4 AM but they only pricked the finger. I think Eddie was relieved because he was so not looking forward to the multiple pricking. Ethan was up and ready to watch his cartoons at that time. When I got to the hospital they had already had breakfast and they were ready to go home.

Dr. Paley and John (PA) came by before noon to tell us we were being discharged. Yes, we were eager for those words!!! The bad thing was that we still needed to get Ethan's fixator fixed. The bar is too high up so high that it was bruising his ribs. John sent over Tony's partner (can't recall his name but I'm sure I will know it in no time) that told us that they will have to get something to solder the excess. He returned later with a new bar and that was the end of that. Good thing because the soldering was making me nervous. Ethan decided to take a nap after lunch so we had to wait on him and on his last round of meds before we could get discharged.

Three of the Fantastic Four got to go home. Abby, Eyal and Ethan were all a home and finding things to do at the QH. Eleanor played with Ethan and told him all about her fixator. She is so cute and her English accent is even cuter! Ethan is so lucky to have a house full of great kids. They are going to be great friends as they grow together. Sophia has one more night in the hospital but hope to get discharged tomorrow. Lily is doing really good and she will more then likely be discharged tomorrow as well.

Abby was the first of the three to get her pin sites cleaned today. It was not fun for her or her parents. Hours later she is still not happy about the cleaning but after a while she was happy and in the playroom with Ethan and Charlie. Eyal was next tonight and he was also a very unhappy and vocal child. It's just plane torture for the parents. I can't wait tell this gets easier for everyone!!!! Including me!!! Ethan was the last one to get his pin sites cleaned but we made a deal that we were going to be strong like Superman. He fought it at first but then ended up being the little Superman he is. All was going well until the last pin site got wrapped. That's when he had enough!!! I think he was talking in tongues! Right after I finished he was fine and ready for his mila (milk)! After the mila he was telling me that I hurt him really bad. I explained to him that I don't do it on purposes. That this is a necessity and that very soon this will all be over. I explained that after all this he will not need to wear his helper leg and that with his fixator he will be able to run like lightening. At that point he decided to name his fixator "Lightning McQueen" because it's going to help him go FAST!

Our first PT is Monday at 9:30 that will also be our first lengthening day. Everyday we will lengthen 1 mm (10 mm equals 1 cm). Ethan has 3.38 cm discrepancy so if you do the math we will need at least 35 days of lengthening given that we don't have any hiccups on the way.

Tomorrow is Saturday, so lets see what we can get into. I want to get him out so he is not bored with being at home. I sure can use a little running. Maybe I will get up and go for a run on the beach trail.

Thank you for all the prayers! Good night!

Thursday, January 12, 2012

Day 2 of Post-Op

After a long 5 hour nap he woke up at midnight complaining that he had pain so they gave him his Valium and that not only helped with pain but woke him up. He was singing "la la la la laaa sing a happy song..." (from Smurfs's Movie) which made me happy!! He was giving me kisses and telling me he loved me. Also, something I love to hear. My happy energetic night owl is at it again! About an hour and half he started to complain that his belly was full and hurting so the nurse had to come in to help with manual extraction of his urine. Around 90oz later he felt relieved. Did you know kids with PFFD sometimes have issues with the urethra? In June, Ethan went to see his pediatrician for his 3 yr exam and we told her that he was a left shooter (when he pees it goes to the left) and she referred him to a urologist that confirmed that he had a small urethra. He will have to have surgery later this year to get his pee hole enlarged. It's a day surgery but still not looking forward to it. I guess it will be his year of surgeries! During our appointment with Dr. Paley, I brought it up to the PA and he told us that it was common with PFFD kids. He said that sometimes it can be a super large hole and many other sorts of birth defects that require surgery that PFFD and Urethra issues went hand in hand.

At some point early this morning we fell asleep but we were waken at least every hour by the nurse. I didn't mind because we have been blessed with some great nurses. At 5:30 AM the vampires showed up. Thankfully, they only pricked him once today! I made a point to tell them about his experience the day before and pleaded that they didn't have a repeat.

At 6:30 AM he started to complain that his belly was hurting and they extracted another 50oz of urine. I hope this catheter gets removed soon! Even though I don't look forward to sitting him on the potty!

I made my rounds today and the "Fantastic Four" are doing as expected. Lily is also doing well and as always as cute as can be. Elenore stopped by to bring Ethan a gift this morning. She is so cute and sweet. She said she is eager to play with Ethan and the other children once they go home (QH).

The catheter and epidural was removed around 2ish. As always he was a super star. The nurses love my son not only because he is so strong and courages but because they see his kind heart.

Around 4ish Tony makes his way to our room to illustrate the pin site care:
1) You remove old gauze (these things were on tight and were very hard to revome)
2) You soak a pack of individual gauze. Pour the saline in the middle of the package. (I counted to 5).
3) You take the gauze and unfold. Then you fold it long ways (12 inches by one inch of width) to work with. You take the gauze in your non dominate hand. Make sure that the gauze is in the inside of your palm.
4) You start to floss or "shoe shine" each pin to remove any and all gunk (blood or drainage that has accumulated). Applying some pressure to the skin to help remove any gunk. Those pin site are really close together that even my skinny fingers are having a hard time manoeuvring through them. You can always use tweezers to help pull the gauze through each pin crevasse.
5) Inspect all areas to make sure nothing is left behind.
6) You take your gauze and make 2-3 inch layers (that will cover one area of pins). You twist the part you will start weaving through pin sites. Under, over around as tight and close to the skin as possible tell all the pins are covered.

During the process of pin site cleaning Ethan was not happy and was crying "it hurts" and saying "Stop...stop!". Ethan has 10 pin sites that we cleaned and had to cover. Some kids have 10 sometimes more. If you calculate just cleaning each pin site is at least a minute per pin site and that doesn't include the removal and the applying of new gauze. I think the entire process was 15-30 minutes or at least it felt like it. By the time we finished everyone (Ethan, Eddie and I) were dripping in sweat. I managed to contained myself even if inside I was full of anxiety.

Wow, how will I manage to do pin care every day??? That was beyond torture for both of us! I was fine up until Tony walked out and then I lost it. I hope this part gets easier! I think my eyes are swollen from all the crying! I don't think any parent is ever ready for this! I have to tell you that I still have a love hate relationship with this fixator and that might not ever change.

After pin care the PT ladies came by and got him to sit off his bed to work his way to the wheelchair. Sitting was not bad but when they asked him to stand up and walk a few steps to the wheelchair that was super tough! He was not happy at all but that only lasted a few minutes. Once, we made it to the playroom he was fine. Singing and playing the bangos! It was karaoke time in the playroom and all courtesy of Ethan. He sang "Take Me Out To The Ball Game" about 3 times, "The Wheels on the Buss" and "ABC's". Later on we went outside to blew some bubbles. He loves bubbles and is getting very good at blowing super large bubbles. We went back to the playroom to play on the Wii before heading to the room to have dinner. We stopped by to check on Abby who was doing great. He did much better tonight with dinner. He actually ate more than he had in the last two days.

Well it's bed time again. Let's hope he lets Eddie sleep tonight and that the vampires only prick him once in the morning! If all goes well we will be discharged tomorrow afternoon.

Good night and thank you once again for all the support and prayers!

Wednesday, January 11, 2012

The Day After

It started at 5 AM when the vampires arrived. As you recall in my superhip updates I named the nurses (drawing blood) vampires. One, because they came before the sunrise and two, because the multiple pricks. He was pricked 7 times before they could find a vein. You think that wouldn't be an issue but 7 times is just ridiculous! Ethan complained about pain for the majority of the day. Before lunch time the PT nurses came by to get Ethan out of bed. They sat him up and put him in wheelchair to take him to playroom and that was super tough.  He cried it hurt and to take the fixator off.  Once settled in the play room he was fine.  He sat and played for 2-3 hours.   We played with the train set, cooked in the play kitchen, played matching games, read a few books and played Operation Silly Game. He loved Operation as much as I did growing up. Sophia was already in the play room when we arrived. She was happy playing the same games. On our way to the room we stopped by to visit Abby girl. She was as happy as the day before. She named her fixator "Princess Girl" and she is going to pretend it's pink. Wished Ethan was on that same happy juice she is on! Maybe we can bottle it and share with the rest of the Fatastic Four because her thee partners are not as happy about the fixator as she is. The nurses brought him to his room and moved him back to his bed. He cried that it hurt as they put him back in bed.  He is not eating much  but is drinking for the both of us. Around 5ish he got to feeling better even allowed me to flex his foot with zero fuss. He has been sleeping since 6ish and its now 9:30. I've seen Lily and she is also not happy about the situation. Hope all the kids have a better day tomorrow. Please pray that tomorrow they only prick him once and PT is not horrible for all the kids! Thanks for the prayers and good night!

Tuesday, January 10, 2012

Surgery Day

We were up and early by 6 AM. Abby was already at the hospital when we arrived at 7 AM. She was playing around with her brother Charlie. We tried to get a pic of the two of them but Ethan was not cooperating. He so not a morning person. Wonder where he gets that from? LOL. Abby got her happy juice around 8ish. Of course, we were still waiting but Ethan was doing fine. He kept telling us he was ready to go home. The nurse brought over daddy's scrubs and Ethan started to write his name on them. I proceeded to write "I love daddy","I love mommy" and "We love Ethan"! He is too funny, played the entire time we waited. We saw Eyal walking in and he also looked very happy. The only thing was he woke up asking for water. Something he had never done. It's like they know something is up.

Our time has arrived and it's 10 AM (EST)! Our little guy did not want to be wheeled or carried back to the surgical room. He wanted to walk and of course no one argued or questioned his decision. He proceeded to walk as the nurses, daddy and the anesthesiologist followed him towards the surgical room. Eddie said when he arrived he stopped dead on his tracks and Eddie had to carry him to his bed. He allowed the mask to be applied and out he was. He is such a brave little guy and we are so proud of him!!!

We went back to the waiting room to join Abby's mommy and daddy. I think having each other gave us comfort and strength because we were all doing very well. You could feel the spirit of God holding us and her pastor praying over us I know made a huge differnce.

At 11 AM Dr. Paley came out strolling in with a full smile! He told Abby's parents that all went well. They will finish her up and you can see her in an hour or two. He gave us the same grin and said Ethan is next. As he walked back he tripped over a backpack. The last thing we need is for him to get hurt. I told him "Be careful, don't get hurt we need you.". As a parent there is nothing better than to see Dr. Paley enter the room with a smile from ear to ear!

We are playing the waiting game Eyal's parents are now waiting with us. Lily and her parents stopped by to check in on us. We also met patient number two Claire that is set for tomorrow. Lily is set for 8 AM but I'm not sure about Claire and Andrea (not sure if it's Andrea or Alexandria) Please keep them in your prayers as well.

It's about 12:30 PM and Abby is out of recovery and headed to her room. Hooray for Abby!!!

At 1 PM our stunning Dr. Paley walked in to tell us he is done and that all went well. They removed his hardware from his hip and installed the fixator. They will finish him up and should be able to see him within the hour or so. Thank God for giving us such wonderful Paley team and thank God for our tough little cookie!!!

At 2:30 PM the waiting period started to make me a little anxious. An hour felt like 5 hours! UGH!!! I'm ready to see my baby is what kept running through my mind.

At 3:15 we are called back and see our sweet angel's face for the first time. He looked good not swollen like he did after superhip. He looked very peaceful. Once they settled him into his room I saw the fixator for the first time. You can say I'm intimidated by it. Not sure how I feel about it just yet. I'm between excited and full of anxiety.

It's 4 PM and he is still sleeping. Abby is up and loving her fixator. I walked into her room and she tells me "Dr. Paley broke my leg and I didn't even hurt." "Look at my fixator it's mine.". I asked her if it hurt and she said "no, not at all." with a big smile on her face. Love that little girl and all her spunky attitude.

At 5:15 he woke up and requested Popsicle and apple juice. He is in denial and not wanting to look at the fixator. Ethan has had 2 Popsicles and 3 juices. I think someone is hungry! I know I am!!! Meanwhile Abby is wanting to stand up and go. Eating and wanting to go home! LOL

It''s 9:30 PM and we just saw Sophia going into the room next door. The "Fantastic Four" are all here and doing well. Let us pray that the vitals stay good over night and our lil troopers are feeling much better in the morning. Our friend Lily is set to star with her lengthening at 8 (EST), Claire and Andrea are set sometime after her. I wanted to ask to keep them and her parents in your prayers. It's tough being a parent at this moment and prayer will be their only calming medicine. Thank you to everyone for all the prayers and support!!! I'm blessed to have such wonderful friends and family!

Good night!

Monday, January 9, 2012

Here we go....

Sunday was great. We got up late but not as late as I would have wanted given that the morning person(Eddie)didn't let us night owls (Ethan and I) sleep longer. We went to the beach and it was great! Ethan didn't care too much for walking in the sand but I loved it!!! Can't wait to be able to run by the sea!! We went back to the QH and the kids were all playing together. Enjoying the last couple of days of normal life.

Monday, we had a 9 AM pre-op appointment. All went well, Dr. Paley's appointment was quick and fast. X-ray looked great and Dr. Paley confirmed that Ethan's discrepancy was about 3.38in. We are hoping to gain all 3in at lengthening. It's going to be amazing come April. Today, we met Lily who is scheduled for lengthening on Wednesday. She is the cutes little girl with curly blonde hair. She is the same age as Ethan but looks a year older. Her mom Jaime and I had been Facebooking each other but it's nice meeting in person. As you can tell our PFFD family keeps growing.

Tomorrow, we have Abby set for 8:00 AM, Ethan at 9:00 AM, Sofia at 10 AM and Eyal at 11 AM. As you can see we are all going to be in major need of prayers and support. It's going to be a tough journey but at the end of the day it's going to be well worth it. To see our babies with out a lift or prosthetic is just going to be beyond amazing.

Thank you for all the continuance love and support!

Good night and hope to update you tomorrow. I promise to post pictures as soon as possible.

Saturday, January 7, 2012

Home Sweet Home

We made it to WPB around 8:30!!! So glad because I don't think I could stand another day in the car. To my right was Ethan playing his games on the i's and in front was Eddie playing some boring music! LOL wished I was riding shot gun but knew Ethan wouldn't have none of that. We stopped in Tallahassee to have lunch at Jalisco's and it was yummy! Eddie was eager to make it to a resting spot and get ready for football but I pressured him to put the metal to the petal and get us to WPB. I was so glad he listened because tomorrow I will sleep in!!!

When we arrived at the QH guess who greeted Ethan with a hug and a kiss? No other than our Abby girl! It was such a Kodak moment too bad I had my hands full. The "old married couple" is reunited again!!! Abby pulled the wagon into the playroom and said "look what surprise we brought for you!" Ethan the gentle man he is pulled Abby in the wagon that her family left him when he had superhip in 2010. After a few spins they decided to crash Charlie (Abby's much older brother) and Susan (Jennifer's friend) Sorry board game. Charlie did not want any part of that game but Susan was a trooper and played by the toddlers rules!! It's funny how the men (blue for Ethan and red for Abby) were in one area about 1-2 squares from each other. After about an hour and a half of fun it was time to say good night and the "OMC" [old married couple] gave each other hugs and kisses. It was super cute!

We have a full house! First, we have Eleanor who had surgery 3-4 weeks ago. Sofia, Abby, Ethan and Enyal who are scheduled for surgery on Tuesday and they are all sharing one house! Ethan keeps saying it's Abby house. LOL

Eleanor is doing great! She was showing me how she can walk and sit and stand up by herself! It's very heart warming to see her doing so well! We are eager to meet Enyal, Lily and Mariel! Tomorrow it's going to be a lot of fun!!!

As you can see the prayer list just grew! Thank you for your continues prayers. Good night!

Friday, January 6, 2012

10 Hour Road Trip

We had a great road trip today! We are so proud of our little guy! At first I was a little worried because we hadn't made it out of Lancaster when Ethan asked if we were there yet. I honestly didn't think we would go 2 hours without having to stop but so glad I was wrong. Ethan played with my IPhone, Eddie's IPhone, Eddie's IPad and we sang "Take me out to the ball game" about 10 times if not more! We played with Mr. Monkey (Marissa's good luck gift) and Max the Doggie (Ms. Dottie's Christmas gift)!

So here is our check list:
Texas - Check
Louisiana - Check
Mississipi - Check
Alabama - ?
Florida - ?

Three down 2 to go!!!

Abby, Charlie and Jennifer made it to WPB after some hiccups but thankfully are enjoying the beautiful beach! Charlie had to make his stop to sink his toes in the sand and ended up waist high in the ocean. You Go Charlie! Live it up!!! I plan on doing the same when I make it to WPB just because that might might be the only chance I get to sink my toes in the sand.

Well it's bed time but will write again tomorrow.

P.S. Please continue to pray for good health, safe trip for all the families traveling to WPB including Toby and Jamie and her family!

Sunday, January 1, 2012

The Clock is ticking!

I want to wish everyone a Happy New Year!!! That God blesses you with an amazing 2012 filled with health, love and prosperity.

Only 8 days tell surgery day. Today we started packing! Ethan's toys and books, check! Now what about the other stuff? Shorts, shirts, jeans, workout clothes, shoes, towels, swim suites, socks, meds, toiletries, ect!!! What's too much? I'm going to be gone for 4 months! Hopefully less but for sure 4 months. I hear, WPB has Target, Wal-Mart and Costco but if I have it why buy it! Good thing I bought some space bags! Love those thing they really do work!!! I can pack a lot more clothes but what about my shoes?!?! I know, I can only pack 4 pair! The running shoes, the flip flops, the pumps and the sandals! Wish me luck with that!!! LOL

I just finished reading Mariel's Blog and all I can say is wow, our time is near! Every mommy I've talked says the same thing! The first two weeks are the worst!!! I get it, the first 2 weeks will be the worst days of our life's but how do we prepare for that? How are we going to get through the tough times? I definitely need to learn to meditate or maybe I just need some meds! I know I will be doing some serious praying that's for sure!!

Abby has been on antibiotics so we hope she is feeling better and is as ready as we are! ;) We will see you guys soon!!!

Thanks again to my family and everyone for the encouraging words and support!!! We are truly blessed to have such wonderful friends and family! Special thanks to our Misa Family!!! You guys are awesome!

Please, Please And Please keep us prayed up!!! We will need it!!!

Good night!!!