Life as we know it!

 

 It is January 15, 2016. I know I can't write about all that is happened as to much time has passed. In fact, more than a year as gone by with  so much that has happened.

Here are some highlights and when I am not to tired to write on my blog I will fill you in on some other things.

The biggest things that happened. We moved from Sacramento to my parent house in the bay area for a year and now we are in Washington State living with my sister and her husband. Our whole family including my husband. It has been quite different as I started a part time job at a craft store. I have not worked in 10yrs. It's been a very big adjustment but I am slowly getting into a routine. The kids have weathered so much and it's been a big adjustment but they like it here. My sister and her husband have been wonderful with a whole family living here.

I feel like setting everything up has been a challenge and I try to take it one step at a time.

Honestly I feel like I need to go to bed early and wake up early to have some quiet time to myself and to collect my thoughts. There is so much I want to do but find time just slips right by.

The one thing I am sure of is that God has us in his hands. Even through some very difficult times n my life, he has never dropped me or left my side. I wish I could say the same thing for me. I am getting back on track slowly but surly. I am hoping to keep writing. I need to get back into that. I really do enjoy it.

This has become more of a journal for me to go back and see what I have done with my life.

I have been very busy working on another blog as well. One of my joys in my life is making cards for people and the whole process of doing that. You can check out my other blog Cardsandcuddles.blogspot.com . I have been working an aweful lot and have not really been posting. We all go through lulls and this just happened to be one of my.  Have a wonderful night to whom ever is reading this. I shall return!

Smiles, Resa

 

My Family Picture from 2015!

Only the Lord Knows...and in his timing will he revel his will!

There has been a lot going on in my house hold! There are a lot of unsure things that are happening right now with a lot of waiting! For  a parent... sometimes waiting is something you have to endure, even in the everyday little thing. Waiting for your child to get dressed to go to school. Waiting for your 4 year old girl to make her way to the car while she dances and sings before being buckled into her car seat, when you are in a hurry! Things like that are the everyday waiting.

Then there is the anxiously waiting moments in your life! For my life this waiting revolves around my Son Alex. It's almost been a year since his surgery and he is doing great! We have a Dr. Apt in April and they will see when we can schedule surgery to take his pins out of his legs!  I for one, can't wait till they come out! I don't like foreign things in his body! His Dr. is great and I know I have no worries with this surgery!

The most recent has been blood work done,  to test him for a rare disease called Pompe II . "...is a rare inherited neuromuscular disorder that causes progressive muscle weakness in people of all ages." (Pompe.com)
"Pompe disease is caused by a defective gene that results in a deficiency of an enzyme, acid alpha-glucosidase (GAA). The absence of this enzyme results in excessive buildup of a substance called glycogen, a form of sugar that is stored in a specialized compartment of the muscle cells through out  the body." (Pompe.com)
 "The progressive nature of the disease means that it always worsens over time, although the speed of this progression can vary from patient to patient." (pompe.com) The good thing is there is an enzyme replacement treatment... if he has it that he could get. It's not a cure but can slow down the disease progression. There is a movie out talking about this replacement therapy called. " Extraordinary Measures", with Harrison Ford and Brendon Frazure. Very informative movie.

He took his blood work on February 3, 2014 and the CK, vitamin D were taken that following Friday. I have gotten results back from the to other test, but the GAA test was sent to Duke University. We are still waiting for the results. So the best way I know how to wait is by looking up everything I can on this disease so that I can understand it and have the right questions for the dr. and have a little bit of control. I keep in mind that this is a ruling out thing as well for the Doctors. They found somethings in the muscle biopsy that would give them the reason to test Alex. So as I wait... only in his (Gods) timing do I wait. I can't change the results... I just have to know that the Lord is with us and is help guiding us. Some nights are easier that other but most night are good!

Some parents want to find out everything they can and some parents don't want to know anything until it happens. But in any case the Lord will be with you and guide you.. Just look upward not outward. When the time comes... when your heart is prepared for what ever outcome. May the Lord reveal what he wants in his own timing. Prayers are much needed! (Smiles)

Emma is as spunky as ever though  she amazes me with how much she does know! I am excited that she knows her alphabet and knows how to write her upper case letters. She knows 1-10 and learning how to write them. We are working hard. I just signed her up for Transitional Kindergarten. So is so excited and ready to go!

Eli amazes me on how smart he is and how much he cares for his brother and sister! He works hard in school and it shows. I can't believe he is 8 already. He gets to play the "handsome Prince" in his class play this week and he will do great!

Love looking at them and seeing their growth and help them through the struggles. Yes, it's A LOT of work but I know I was born to be a Mother! It truly is a blessing. (I could do with out the  cleaning, and the cooking . Smiles)

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!