Time flies when you are having fun. We are super busy every day. If we are not doing PT, stretches, water PT, Pin cleaning, play time or sleeping we are trying to relax. Ethan continues to have good nights. We are not getting up in middle of the nights so very thankful for that. He started to complain about knee bar going in. It hurts for the initial 20 minutes that it goes in but once he has his Valium and pain killer he is OUT!!! We are at 60-70 degrees but praying we gain at least tell 80-85 degree in the next few weeks. Overall Ethan is doing great and we hope that we continue at this pace!!! Mommy through her back out and is trying to recover so hope that it will feel better soon.
We are at week seven and we have gained 36 mm. We had our appointment with Paley and since Ethan is super stiff and hard to bend (knee) we will be starting our 3/4 turns instead of 4/4 turns. He wants to see if going slower will help the healing of the muscles and allow the knee to bend 90 degrees. We sure hope that works!
Daddy and Grandma are coming to visit this weekend so we will let you know what we manage to get into.
Please continue to keep us in your prayers. Say special prayers for Ethan to get more flexibility.
Sorry for the short update but Ethan keeps me busy.
E-Rod's Angels
Wednesday, February 29, 2012
Monday, February 13, 2012
Week 5 and 2nd Post-Op
Things have not changed much we are still running on empty most nights. Schedule is still full and we are going full force. After 3 trips to the mall we located a shoe that would work with his AFO. Note to self and to all the parents, Nordstroms are great when it comes to getting two different sizes shoes. I'm not sure if they do it world wide but the do it at West Palm Beach, no other store will allow that. You would be forced to buy two pair of shoes if you needed two different sizes. Ethan was needing a size bigger because he has the AFO. We eventually found the shoes at Sears after hitting every shoe store in the Gardens Mall. He is in a extra wide size 9! On Friday, we dropped it of at Nobles Shoes and Monday morning we got a call that it was ready!!! Very nice shoe lift with 5.5 CM. If you recall, the last shoe lift that we had did not work but it was also a 8 CM lift! In 4 weeks of lengthening we have managed to remove 2.5 CM!!!
This weekend was so much fun. Not only did daddy come in town but Ethan had a great weekend despite the weather. The girl scouts cooked dinner for us on Saturday and danced with Ethan. They gave him so much attention and he loved it. His new friend Kayla was super sweet to him. She played with him and made him the happiest kid! I will post a video later so you guys can check it out!
Today, we had are 2nd post-op appointment and things are going great! He gained 26 mm so far! My lil superman is almost halfway through this procedure. We didn't get to see Dr. Paley because Eddie and I had to rush him to the airport but Dr. Paley told my parents that everything looked excellent!
I met Ashley and her family today! Kayle is super cute and as happy as my little Ethan! It's always nice meeting people that we can relate too.
All the other kids got a great report card today so we are on our way!!! Keep us prayed up as we continue this journey!!!
E-Rod's Angels are having a fundraiser tomorrow in Ennis at Mexicano Grill. Pictures with your sweetheart from 6-10 PM. They will also be selling flowers and giving away candy. Thanks to my family for organizing the event and to Mexicano Grill for their support! Good night!
This weekend was so much fun. Not only did daddy come in town but Ethan had a great weekend despite the weather. The girl scouts cooked dinner for us on Saturday and danced with Ethan. They gave him so much attention and he loved it. His new friend Kayla was super sweet to him. She played with him and made him the happiest kid! I will post a video later so you guys can check it out!
Today, we had are 2nd post-op appointment and things are going great! He gained 26 mm so far! My lil superman is almost halfway through this procedure. We didn't get to see Dr. Paley because Eddie and I had to rush him to the airport but Dr. Paley told my parents that everything looked excellent!
I met Ashley and her family today! Kayle is super cute and as happy as my little Ethan! It's always nice meeting people that we can relate too.
All the other kids got a great report card today so we are on our way!!! Keep us prayed up as we continue this journey!!!
E-Rod's Angels are having a fundraiser tomorrow in Ennis at Mexicano Grill. Pictures with your sweetheart from 6-10 PM. They will also be selling flowers and giving away candy. Thanks to my family for organizing the event and to Mexicano Grill for their support! Good night!
Monday, February 6, 2012
Week 4 of PT and Excellent Week
It's been a very good week. Ethan’s water therapy is really paying off. Not only is he enjoying it but I think it's giving him strength and courage to do other things. We are sure that he will be swimming by the end of this week. He holds his breath under water and swims to the bottom of the pool to retrieve toys and only comes up for air for a second. He is so competitive that he doesn’t give up!! I’m so proud of my little SUPERMAN!!!
My parents have been here for a week now and it’s been really nice. Last week Ethan loved having his uncle Junior here. They raced, watched movies and played Mario. What more could a kid ask for? Every morning he would wake up asking for his uncle Junior.
I don’t think I’ve mentioned it but Ethan has become a MARIO (Wii) lover. I can’t pry him away from that MARIO. My trick has been only allowing him 5 games per day; 2 before water therapy, 2 before dinner and 1 after dinner. I think it’s still a lot but I have to start somewhere. He was normally spending all day long playing MARIO so we are making progress. Ethan was a child that spent 50% of his time running around playing baseball, soccer and playing hiding seek. The other 50% of the time was spent reading books and watching his shows. Mario has taken over his life since we have been here at the QH. He has only picked up a book a hand full of times and mommy doesn’t like that. He doesn’t participate in any other activities nor does he want to play if it’s not MARIO. It’s amazing how things can change over night.
PT has been going well. I hope we either progress or stay at this level. He is reaching 85-90 degrees and now wants to be more active. He is playing the Sports Wii, playing soccer, walking on the treadmill and playing basket ball. He is also walking a lot without his walker and his balance gets better every day. We finally got his AFO today but now the shoe lift needs to be adjusted. UGH!!! Not only do we have to remove layers (LOVE IT) but we need to get a new shoe because the AFO doesn’t work with the shoe we originally got a lift on. A $50 shoe is ruined because they had to cut it to get the AFO in the shoe. We will have to go shopping for a new shoe that has a flat sole, no lights no added features just a flat sole and wide!
Saturday, Abby came over to do stretches with Ethan. Jennifer got some great pictures of them holding hands! It was super cute! I will post them later!
Today, we celebrated Charlie’s (Abby’s older brother) birthday. We had a great cake compliment of our house mom MJ. It was beautiful and yummy!!! Abby, Eyal and Sophia are all doing well. All the kiddos are walking well and doing great. Our little friend Lily had surgery today to relieve the tension of a pinched nerve and during the surgery they got some bad news. They will not lengthen for 8 CM they were trying to gain. The nerve is being constricted to a point were no further lengthening would be possible. They will also have to do 2 land PTs a day. Something no parent wishes on a child not only because it’s painful but because PT is limited in most cases and out of pocket expenses is ridiculous. Please say a special prayer for Lily and her family. That God gives them the comfort they need and that the nerve and muscle lengthening to the planned goal of 8 CM.
My parents have been here for a week now and it’s been really nice. Last week Ethan loved having his uncle Junior here. They raced, watched movies and played Mario. What more could a kid ask for? Every morning he would wake up asking for his uncle Junior.
I don’t think I’ve mentioned it but Ethan has become a MARIO (Wii) lover. I can’t pry him away from that MARIO. My trick has been only allowing him 5 games per day; 2 before water therapy, 2 before dinner and 1 after dinner. I think it’s still a lot but I have to start somewhere. He was normally spending all day long playing MARIO so we are making progress. Ethan was a child that spent 50% of his time running around playing baseball, soccer and playing hiding seek. The other 50% of the time was spent reading books and watching his shows. Mario has taken over his life since we have been here at the QH. He has only picked up a book a hand full of times and mommy doesn’t like that. He doesn’t participate in any other activities nor does he want to play if it’s not MARIO. It’s amazing how things can change over night.
PT has been going well. I hope we either progress or stay at this level. He is reaching 85-90 degrees and now wants to be more active. He is playing the Sports Wii, playing soccer, walking on the treadmill and playing basket ball. He is also walking a lot without his walker and his balance gets better every day. We finally got his AFO today but now the shoe lift needs to be adjusted. UGH!!! Not only do we have to remove layers (LOVE IT) but we need to get a new shoe because the AFO doesn’t work with the shoe we originally got a lift on. A $50 shoe is ruined because they had to cut it to get the AFO in the shoe. We will have to go shopping for a new shoe that has a flat sole, no lights no added features just a flat sole and wide!
Saturday, Abby came over to do stretches with Ethan. Jennifer got some great pictures of them holding hands! It was super cute! I will post them later!
Today, we celebrated Charlie’s (Abby’s older brother) birthday. We had a great cake compliment of our house mom MJ. It was beautiful and yummy!!! Abby, Eyal and Sophia are all doing well. All the kiddos are walking well and doing great. Our little friend Lily had surgery today to relieve the tension of a pinched nerve and during the surgery they got some bad news. They will not lengthen for 8 CM they were trying to gain. The nerve is being constricted to a point were no further lengthening would be possible. They will also have to do 2 land PTs a day. Something no parent wishes on a child not only because it’s painful but because PT is limited in most cases and out of pocket expenses is ridiculous. Please say a special prayer for Lily and her family. That God gives them the comfort they need and that the nerve and muscle lengthening to the planned goal of 8 CM.
Wednesday, February 1, 2012
Week 3 of Pt and Progress Report...
We've had a great week with the exception of daddy going home on Tuesday. Over the last few days we've been to the beach twice. We went to Juno Beach to watch the wind surfers, to Jupiter beach and to Dubios Park. I LOVE it! Can't say the same for Ethan. He screams "don't jump" every time he sees us near the water. I'm not sure why he is so afraid of the water but hope he gets over it soon!!! The weather here has been perfect!!!
Pt is going well with the exception of the last 5 min. I think I've learn to toughen up but I still get choked up every once in awhile. He started his water PT today and LOVES it!!! He will have land therapy in the morning at 10 AM and water therapy at 3:00 PM. I was hoping that with all the PT I would be excused from PT at home but that's not the case. :( Today, he had land PT with Ms. Emily and they played the Wii and basketball before starting the stretches!
Yesterday, we had our first of many 2 week appointment. We got a great report!!! He has 13mm of new bone!!!! Yes, 13mm!!! We are super hyped about our great news. Abby has also gained 13mm. Our friend Eyal as well but he will require another surgery tomorrow. He is having nerve issues that need to be addressed. Sophia is lengthening both her femur and tibia and has gained 22mm. Lily has gained 15mm but she is also having nerve issues. Please continue to pray for all our troops!!!!
I will report back next week!!! Good night!!
Pt is going well with the exception of the last 5 min. I think I've learn to toughen up but I still get choked up every once in awhile. He started his water PT today and LOVES it!!! He will have land therapy in the morning at 10 AM and water therapy at 3:00 PM. I was hoping that with all the PT I would be excused from PT at home but that's not the case. :( Today, he had land PT with Ms. Emily and they played the Wii and basketball before starting the stretches!
Yesterday, we had our first of many 2 week appointment. We got a great report!!! He has 13mm of new bone!!!! Yes, 13mm!!! We are super hyped about our great news. Abby has also gained 13mm. Our friend Eyal as well but he will require another surgery tomorrow. He is having nerve issues that need to be addressed. Sophia is lengthening both her femur and tibia and has gained 22mm. Lily has gained 15mm but she is also having nerve issues. Please continue to pray for all our troops!!!!
I will report back next week!!! Good night!!
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