My Tiny Little Super Hero!

My Friend Catherine found this web site and signed up Alex. Tinysuperheros.blogspot.com  Someone sponsored him and he was sent a cape last week. He is super excited about it. He even took it to horse therapy with him!  Projectride.org .Thank you for the person who sponsored him.

Alex has been doing so well. I just wanted to give you some updated videos! Everyday he is growing stronger!

We went to a Dr. Apt and he said he is healing really well. That come April we can set up an apt to take the pins out o his legs. I am super excited about that.

My daughter Emma just had a birthday. She is now 4. I can't belive how fast they grow. She is so much fun. She loves doing school work with her two brothers...so I give her "Homework"too. She is always playing with Alex. Her favorite thing to do is play pretend. 

She is into Barbie dolls and loves watching the Barbie movies. She is my girly girl and I love it!

Therapies

 

I am so thankful for the Therapist Alex has and has had! The amazing work they do with him and the patience with dealing with me the, anxious parents. They have the knowledge and know how of what needs to be done and to know that it will take some time. As a parent you want the best for your child. You want change to happen for the better fast and when you don't see it, you get discouraged! Alex's therapist have been really encouraging for me. They are real about were he is but they end with...it will take time to get back to were he was before.

This last week I decided to video and try to track his progress. If time allows, I will video at the middle of each month. (having trouble up loading the video's but will be working on it)

I have been really worried about him gaining muscle! I have been working hard at home with the therapy we were given. School is taking a lot out of him but we try to get as much in. He has a smile through all of it.

I have to admit I was somewhat sad this week. Alex has come so far and now it's like he has taken 10 steps backwards. Though I have to keep in mind he had major surgery. Surgery that has helped and will help him in the future. The next hurdle is building muscle and that takes time. It's just hard for me to see. Though his smiling face lifts my mood!

They make it fun! He has a blast and laughs and giggles his way through it! He has horse therapy once a week but we think we need to make it twice a week. Still working on setting that up if possible. They play basket ball, matching games and a whole lot more. He is really weak on the horse but it will get better in time! He started riding the horse with handles and slouching while he rides. Then he worked his way to just the reigns and he could Gallup on the horse. Now he can't really lift one had while riding on the horse and he is back to the handles not the reigns.

He has P.T through C.C.S and that has been amazing. She has him on a bike, and throwing basket balls while standing up and down, she works with him in his walker and so much more. She is so optimistic and encouraging. She even goes as far as sings to him while he marches in his chair. That was so good to see. She is patient and Alex loves going. I bug her about little things I have notices and she check for me with out judgment or a though of "her she goes again." Our communication is great.

I would like to encourage you mom's who are reading my blog , it is really beneficial to go to your child's therapies if you can! You get to know who is working with your child and you get to see first hand the improvements. You can ask questions if you need to, so you can  help your child at home.  It's really hard to go for me sometimes but I try to make it a priority. I have to be honest and I didn't make it a priority in past years. I let the therapist do the work and at home do the best I could. (But I could have done better) But it's different going. I encourage you to go if you can!

His O.T is working so hard with Alex and focusing on strengthening his hands and his upper body. She has been amazing to. Helping me and talking me through and showing me what I can do with Alex at home. She is encouraging and let me feel like he will get stronger.

He has adapt P.E... I don't get to see all that he does but I hear the giggles coming from the class room! I see him riding his bike around the school with a big smile on his face!

With a child who faces challenges... it take a team of people to help them reach their full potential in life! It really does! The Doctors Amaze me with all they do... The therapist amaze me for all the work they give to Alex. Everyone who help him to reach his full potential is so in awed by me!

There is so much to think about with him, All his therapies and all his academics as well as making sure that he isn't sick, and making sure that he feels like any other kid! It can be overwhelming at times!

He is going to improve...It will take time...and I trust the team I have that surrounds my son!


(Having video difficulty again. I will try to fix it as soon as I can!

Things are going back to normal!!

 

 

  Life back at the Taylor has gotten somewhat back to normal. Alex has returned to his mischievous, laughable, fun loving self! He has started Kindergarten and loves it. I am told that he loves to play chase on recess with his wheel chair. He has started his horse therapy and loves it

I find myself having to do a lot of at home therapy and trying to integrate it into every day play which as been a little hard to do with all the daily clean up and cooking. This is going to be a life long routine. For the best result for my Alex I need to be on top of this. Its hard I do have to say but well worth it!

4th of July!

 

 

 
    For the past two years we have gone up to my sister's house in Vancouver, Washington. This kids love it! They get to see fireworks that shoot up in the air. They get to spend time with their Auntie Mindy and Uncle Chad whom they adore! Even the drive up there is a fun event and they do really well on care ride which I am so thankful for! While we are up there they get to watch movies and Eli gets to go on his tradition of Ice-cream with just him and his Aunti. He looks forward to that every year and never forgets to remind Mindy about that! This year we were very blessed to be able to go and hope in the future that this tradition can continue and we can have our yearly trip up to my sisters house who I miss and love very much!

Things are coming along!!!

 

  I am back and I just want to say I am so proud of my little man! He is doing great! The healing is wonderful and he has come such a long way!

Last week, was are first time back with Physical Therapy and Occupational Therapy and I almost cried! She had him stand for the first time. It was for a second but boy did he have a huge smile on his face! He also spend 12 minute in the stander. I was so proud of him.  Another big thing she did was help him to practice walking a little. That's when tears welled up in my eyes. Before his surgery he would doing the hopping (legs together and hopped to get anywhere with his walker), this was due to the strong scissor walking that would happen (were one leg would cross over the other). It was very difficult for him with his braces to take one step. This time his scissor walking was less and he was able to take the steps he needed. Now, he was holding onto bars on both side and the therapist was holding him. The overwhelming joy that filled my heart, I can't put into words.

This surgery was for pain management only and I understand that, however as a mom and my understanding...he is more aligned. There is no telling what the outcome of the surgery will allow Alex to be able to do, but I already see results!

I understand how important it is to do the home therapy as well. The more times we work on strengthening is muscles (if they can be) and the more stretches he can do... the sky is the limit! Yes, it takes a lot of time and effort but I want my child to be as independent as he can! To know that he can do things just like the others with no help.

Alex has a big brother and a little sister and it is amazing to see how much they help him out. I had put him in the stander and made homemade Theraputty and they other two were playing right along side him. Helping him and instructing him. He loved it! It helped pass along the time and it gave him such self esteem. (my brother and sister want to help me)

School starts in two days and I am a little nervous. Alex will be put in a regular class room with a lot of kids. I can't help worry about how its all going to go but I know that God has him in his hands. The more I work with him at home and get him stronger along side the therapist and doctors the more he will be able to focus on his studies.
It's a big team and we are all working for the good of my little man!

Video's I meant to post before It my computer crashed!

After the Surgery!

 
Well it's been 16 weeks since the surgery! Alex is so much better and is scooting along on the floor and playing. I would like to take this opportunity to catch you up to date on what it has been like. We are going to go back to the first month he came home.

I am not going to sugar coat it. It was very very difficult. Difficult for many different reasons. One of the biggest worries as a mother was just moving him from the chair to the bed. I didn't know what was okay or what was going to hurt him. it was only a week since the surgery and we made a bed in the family room on the couch! My husband bless his heart slept out in the family with Alex, while I took care of my 3 year old Emma. Knowing what it was like from helping my sister Rebecca, I knew I had to turn Alex from side to side and on his back to prevent bed sores. He would wake up crying because he was in pain and I had to give him med. He was still on so many heavy medication. I had to find some way to keep track of it all. That was very difficult and overwhelming at first.

One way that helped me was, I had a big wipe board and on the left side I listed all his medications. Then I wrote down next to each medicine what time to administer the medicine. I wrote it out for a 24 hr period. I then crossed it out after I gave him the medication.  This helped me not to have to think about giving him the wrong medication or at the wrong time. Every 24 hrs I wrote it out again. One less thing I really had to worry about.

I call the Dr's team and they were very helpful as to how to wean him off of the medication and they were very supportive if he could not come of them. I finally had my system down and Alex was weaned off the medications at a timely fashion.

This may sound crazy but changing his diaper was a real challenge as well. Due to all the pain medication he was on his bowl movements were all over the place and it took two people to help clean and change his diaper. I often times had to call on my wonderful neighbors to help come over and change his diaper. In time I had to learn to change it myself and let me tell you it was not fun. It was scary and overwhelming but I want to reassure you that it does get better! I promise!

Another worry was his weight. When he got home from the hospital his weigh dropped 5 pounds and for a little guy like Alex you could visibly see the difference. He went in at 35 pounds and came home and dropped to 30 pounds. That has been and still is a worry of mine. He is eating well now but still not gaining a lot of weight. I am hoping that as he is more mobile his appetite will grow as well as his stomach. The nutritionist that I called helped me out on some ideas. One of them was getting Instant Carnation Breakfasts as well as Pedi-assure for kids. I still give this to Alex and it has helped!

When he was feeling a little better near the end of the first month he staying in this wheel chair that we rented. The back would recline up and down. That helped a great deal. If you could rent one I suggest it a very much! This made him feel more independent and he was able to wheel himself around the house.

 The second month he was in the chair he was very happy and even dancing around in the wheel chair.

I have to tell you that it was hard being stuck at home. I could not go anywhere for a very long time and here and there I had to go to the food store but that was at night time. You see Alex was not able to sit in a car seat and he had to lay in the back of the car with a special seat belt we borrowed from Shrines Hospital. I had my oldest child still in school. My friends from school were an amazing help picking him up from school and bringing him home.

Know that at this time in your life you have to depend on family and friends no matter what. They want to help when they can and you need their help. This is something you can't do by yourself no matter how much you want to. I have a 3 year old who was home all the time as well. My neighbor across the street was so kind and brought Emma and Eli a bag of things from Michael's to help keep them entertained. They also let me go out to Starbucks here and there as well. Much needed.

We have seen Dr. Davids twice now since the Surgery and he had us take an x-ray of his hips every time.  It's one thing to know that he is healing it's a whole other things to see the healing process of his hips. As a mother seeing that his hips are healing helps with confidence in moving him in and out of the chair and in the chair to the ground. It is so amazing to me what he has done for Alex. I have such awe and respect for someone who can do such a wonderful thing!

   Along with the recovery time is the Physical Therapy that I have to do to keep him from getting stiff. After my hip surgery when I was 3 years old ...my mom had to do the same stretches. Funny how it has come full circle!

At first I was unsure as to how far I needed to stretch. You see his legs were straight out for so long that I have to try to bend them as well as his hips and his ankles. At first they don't bend very fare at all. He also has problems with his tone in his legs and cl-onus in his feet (shaking). This has given
this task and extra added challenge. But as time goes by... I saw I could bend it more and more. It does take awhile but the more I did it the better for Alex. Now he can bend his knees all the way and his ankles the same. I still do it every day because he is not allowed to put any weigh on his hips yet.\

For those readers out there who are reading my blog and going through this right now, The stretches are really important for the healing process. It's something that you can't be too tired to do. There are some days that it was so hard and I was so tired but I kept at it and the results are there! Don't do these stretches unless the Dr. tell you to!

One last thing I have to mention. Though it seems like your world is you and your child... You do have a husband if your married that also needs to be apart of all of this. They might be working during the day but allow him to pitch in and help. Also you may be so tired from all the things you have had to do during the day but know that they need your attention as well. It does fill you up as well. Often times the husbands don't know what to do and how to help but they are part of the family as well and they need your guidance and encouragement as well in this whole healing process.

There is more to write about and I will soon. I as I remember things I will write and keep you up to date on Alex!

Note: July 3rd, 2013 he was cleared for the car seat and his wheel chair. We ended up driving up to Washington for the 4th of July. It was a fun trip!

You think you are prepared?

I have to apologize for not writing in a while! I have had the misfortune of my computer crashing on me the day before Alex's surgery so this is all on my iPhone. Not fun ! There is so much I want to write about and I will. Right now is a daily struggle to help Alex and get focus on my other two kids. I do want to tell you thought about the amazing Doctors Alex has had.

Dr. Davids and Holly did an amazing Job on his surgery. They also were so amazing in the fact that they checked up on Alex everyday. I could have not asked for a better team. The ICU staff were amazing! So friendly and they really took care of Alex and took care of me as well! Thank you for taking such good care of one of my most precious gift. My child!

These three weeks have been full of ups and downs, tears and sweet, worries and prayers. My life has become a small bubble. This is temporary I know. The emotional ups and downs on a daily bases... You can't prepare for! I thought I was good in preparing for the surgery. The day of the surgery and in the hospital but I was not prepared for when I brought him home.

I want to write more and will try when I can. In the mean time. I ask for prayer for this difficult time. I am thankful for my friends who have taken it upon themselves to take care of me:)