Enjoying food!

Jace just enjoyed an entire Cheetos puff, which he nearly bit off my finger to finish the last bite! Normally, I give this to him on the sides of his cheeks, about half a puff to give him a taste of something yummy. Well, also to work on his continuous eating skills. Since he is dependent on his calories coming from a gtube, he really does not get to "taste" a variety of foods. Though, we work on it, with the help of an OT that has provided us valuable insight on feeding techniques to keep him interested and progressing. Most of the time he samples foods with rice cereal, pear flavorings, he loves mango and yogurt. He barely consumes more than 1/4 of a cup a day, but I am hoping to increase and raise the bar on what he can tolerate. Recently, he was introduced to the squeeze it bottle, which will help prepare him for drinking from a straw. He seems to prefer water but I am attempting to give him his pediasure through it as well. We also attempted feeding him oatmeal, which I may try again as I can't remember how it went. I do know, that brown rice cereal was spit out quicker than it went in. So, we continue his adventures with food...stay tuned. :)

So much catching up to do!

Over the last two months, there has been so much to report...it's all good!

In October, we learned that Jace is starting to become more vocal, beyond his use of "mom". He has actually mastered the use of the word "no" appropriately...sure, that's the word we're excited about. He has the most amazing team working with him and for him. He has also started to use the word "boo" when engaged in "peek-a-boo" and "more", and recently added "loves", which is what I call his hugs. I have picked up on interaction between certain cartoons, in which he is reacting to the show vocally, as if he was watching a great football game. It's quite entertaining to listen to. He's also really picked up the use of his peripheral vision...which you will notice even in his recent school picture (coming shortly).There is so much more going on with him at school and I am most excited about his newest communication devices. He is using a computer and possibly an ipad to help with communication. His teachers also made for him a yes/no card with vision cues which he purposely hits yes or no when asked a yes or no question. It's all very exciting and his progress is just starting to take off suddenly.

In November, Jace attended his 2nd intensive therapy session. His walking progress was steady and he is getting it. A change for him in his hart walker was being in his therasuit which gave him more input than before. Still, for a 4 year old, he handled a full 5 hours a day, 5 days a week for 3 weeks of intensive therapy and made it all look easy...with more smiles and giggles than you would expect of that kind of workout. His final week brought exciting new things to the table. He walked to me, about 3 feet. The one day I did not have a camcorder and did not expect it. I will never forget giving him the proudest hug for his accomplishment that day and the reassurance that with hard work anything is possible. Afterwards, his PT put him on the treadmill, not an easy thing to do with a floppy four year old. Picture it, me behind Jace, trying to steady his body, while he is connected all over with bungees and trying to maintain his excitement as he indeed decided he should try to jump up and down. It was wonderful to watch him during this, but a lot of work for all involved. After all week of hearing us to tell him "no jumping", we put him in "spider". "Spider" is a cage like cube that he is again strapped in everywhere but allowed to jump and he stood there as if he was not allowed to do anything but stand. I am sure it was confusing after hearing "no" all week long to his inclination to jump on the treadmill.

Other news, we were able to score even more physical therapy. Jace will begin weekly sessions at the same facility where he attends intensive sessions to help him keep up on skills and will also receive 3 intensive sessions next year. This is great, I have wanted more PT for him and I am starting to see gradual progress.

Milestones: Jace has been flipping himself over onto his tummy every chance he gets at home. His goal: more tummy time! He continually flips over his right shoulder so we are working on trying to get the left shoulder to cooperate. Yesterday, he flipped over from tummy to back and over his left shoulder! Two goals with one flip...thrilling to watch! This evening, he also positioned his arm over my shoulder while we sat on the couch. He studies his arm for a good two minutes, and gradually pulled his arm closer and closer until he got his thumb right into his mouth. I am in awe, he sucked on his thumb, purposefully. Evidently, it did not taste too well because after about 30 seconds he pulled it out and looked at it and than put his arm down. He is really starting to calm his body down to focus on things he wants to do...

Scary news: Jace went into a gait trainer, "kidwalk" and was working with me on moving his feet forward, when the bicycle seat came out from beneath him, while he slid through the double body support system. Safe to say that Jace defies any standard safety measures...

Here is info about this product:
http://www.southwestmedical.com/products/KidWalk-Gait-Mobility-System-23365.htmlKid Walk is an innovative pediatric dynamic mobility system that affords freedom of exploration while safely supporting the user. Unlike a gait trainer, the Kid Walk has a large mid-wheel configuration that encourages upper-body rotation over the pelvis while allowing upper-extremity freedom. The dynamic action allows lateral weight shift and simulates a natural gait pattern. KidWalk positioning options provide various levels of support to accommodate maximum freedom in upper extremity movement.

The various wheel configuration and small turning radius allows exceptional maneuverability. This is key in affording a child access not only to their home and school environments, but, encourages exploration that has been proven to enhance their cognitive and social development.

Tool-free adjust ability is quick exact and easy making Kid Walk ideal for schools and institutions. Easy to use, one hand height adjustment mechanism allows quick positive adjustments while the child is in the unit. All positioning options swing away to allow easy placement and positioning of user.

Allows therapeutic adjustment for use in ambulation and therapy oriented activities. Seat and support system move with the client allowing the natural movement of the body while reducing weight and fatigue.

I am thinking that if the adjustments are right, this wouldn't happen again but think he is better supported in the hart walker at this time. 

September's Prayer

This came from a newsletter today from Jace's intensive program, I love it, perfect timing!

In this moment I accept that I have been given care of a very special person.
I accept that I may likely never know why this task has been passed to me.
In this moment, I accept that I need no more than the fact that what I do has value.
With that, I will care for this person to the best of my abilities.
I will forgive myself for the days I could do better, but don't.
I will forgive myself for the days I would do better, but cannot.
I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.
I seek to be supported in whatever ways financial and emotional that will maintain this balance.
I seek to learn how to draw from a well of infinite patience and energy.
I open myself up to the possibility of joy, of fulfillment, and God's grace.
I accept that, in this moment, it is all I can do.

School News and Hart Walker Update

Exciting happenings for Jace at school this year. He is now in his stander 4 days a week at school during classroom time and thanks to having his own one on one assistant, he will be able to be more involved in the classroom this year. His wonderful school team has restructured his schedule so that he is more involved in the classroom than last year. He also has been observing his teachers hands and fingers while she counts and sings the goodbye song. She noticed that he is looking at his hands and trying to do the same. We love this! He wants to participate and is trying to get his body to cooperate, I am excited to see him progress this year.

The unfortunate news is his hart walker was denied by his secondary insurance as they felt he could not functionally propel the hart walker. I will be appealing this decision but he does go back to intensive therapy in just two months...it may take a little longer to get him this equipment than I would like but I am completely optimistic that he will have one within 6 months.

Progress at home

Since our last day at intensive, we have tried to make a schedule at home to keep up Jace's strength and skills. I am happy to say that he just tolerated 45 minutes in his stander this morning, while watching Handy Manny and playing with his zhu zhu pet, Nugget.

In the hart walker, he has not progressed as much as I would like for him. He prefers it when I sing to him and he stomps his feet when we do "if you're happy and you know it". I am going to try and take him in the garage soon and see if that surface is more helpful. We are hoping to hear soon if insurance will approve buying his very own hart walker. Hopefully, we met the criteria, which was consecutive steps without assistance.

As far as sit ups go, we do pretty good on most of them, except on the peanut ball. The difficulty there is getting his arms to stay straight, but equipment to help this is supposed to be on the way!

A big thanks to his Grammy Jan for making us weighted bags, just like at therapy, for him to practice "be still" for 30 minutes. They are wonderful, and even our home therapist has commented on how great they are. We are very lucky to have her do so many wonderful things.

Jace continues to thrive, even impressing us with his reaction to eating solids. He does best in his high chair with dimmed lights and a calm household. His favorites seem to be, anything mango flavored (esp. peach mango yogurt); pears; and sweet potatoes. Everything he is fed is thickened to help him to better manage his foods. I vary it between thick it and wheat and honey cereal. He seems to prefer the foods I warm up. Next on our list, is trying a thick soup.

Week 2 recap of intensive therapy

Last week was incredible for Jace. By Tuesday, he got through an entire day with no tears, continued to hold his head up (a difficult task for him); and Wednesday, Dad got to see him in the hart walker. It was fantastic, the first time his PT got to witness the side of Jace that most of the family witnesses, his giggly goofy side. Friday brought a tremendous surprise: he finally took steps with his left leg, was in a great mood and was honestly quite the trooper for the end of the week workout.

Good news for his future: we snagged our next round of intensive in November and will be continue on a weekly basis in addition to his schedule I will have for him at home. He really loves his hands being "crossed over, straighten them out" and than tucking his knees up to his chin, we do this 10 times and he giggles with every time.

Hopefully, I will get his hair cut this week (a challenge in itself)...he really had the "Edward" look going but when his sister put his hair up in a pony tail with a silver barrette, it was my wake up call to make him look more like a little boy...wish me luck with that!

Our goal this week is to capture on film, reciprocal steps in the hart walker, he is very close to this goal.

To sum it up...

To sum up our first week of intensive, in a word, great!!!! It is such a joy to see Jace loving to be in a standing position and to understand that in cannon ball position helps him to not thrust himself backwards, and after one week it showed! Definitely, his body is seeming to be more calm, less hyper with out of control motions.

Our goal this next week is to see him pick up his left foot in the hart walker. He has successfully picked up and moved his right foot forward, but not at all on Friday. It has been a long week for him, he is not used to this much activity in one week.

Jace has fallen asleep "on the job" on just about every day, something he does at preschool as well. Friday, he was wiped, so we'll probably see an adjustment to an earlier lunch break for him this next week, which will break up more of his mornings and give him a longer afternoon of work.

Day 2 of intensive

Day 2 brought on a much happier boy. We started our morning with heat packs to warm up his muscles. He arrived to intensive in a okay mood, but once in the stander he was quite content. He did not need mommy to hold his hand, it was all about checking out his own.

Next he was on the table, disliking his massage and compression exercises. This surprised me but I think he really wanted to stay standing for a bit longer.

On with the benik and walking in the hart walker, which was a tearful experience. He was fighting doing the work but it's only day 2 and I am still stoked from seeing such a happy boy standing up, with a bit less support than day 1. I swung him on the platform for a bit while his therapist got the therasuit ready for him.

He smiled so big and cute during his strengthening, he loved it today! After his leg and arm strengthening, we made our way to the flat table and he did massive sit ups (90) and used the peanut ball to do some more (another 90 with arms out and behind him)...some rolling and some sitting, he loved sitting but still fell backwards when he brought his head up...but its an amazing start!

He had a good 30 minute lunch break with me, part of which he lent sympathy tears to the girls who were disliking doing their work out...

The last part of our day was more stretching and finally cannon ball position...he fell asleep the entire duration of cannon ball...and after being home for a bit he has not napped a full nap yet, I am hopeful for an early bed time...

Looking forward to tomorrow!

Intensive Therapy

Day one of intensive therapy:

After a good 17 months of a waiting list for intensive therapy, we snuck into another program without much wait at all, I think it was just a lucky timing break on our part with another therapist being hired on.

Completely worth the wait!

He started with the stander, 30 minutes while watching Elmo. He just got his new AFO's (his 2nd pair ever) and he was put in a suit called a Benik. The Benik is a lot like his spio. Love it!

I was thrilled he lasted for 30 minutes, his record is 25, so we are off to a good start. As a reward, we put him on the platform swing...but he was just not having it, unless his feet hit the ground and he could push him self around. I think I have spoiled him with his "mommy swings".

Next, we hit the hart walker, something he is familiar with but wasn't happy about. The hart walker he only went about 20 minutes in, we want him happy in it after all!

Afterwards, he went into a therasuit (I am providing a link that is more expert than I on this):

http://www.suittherapy.com/therasuit%20info.htm

He was in this suit for 2 and half hours, doing all kinds of exercises that will help with strengthening. The last 20 minutes of this he zonked out, out cold, during sit ups. He hit 7 and had 23 more to go. It's amazing how a cold compress will wake you back up!

His 30 minute lunch break resulted in downtime in which I just sang to him and talked softly. Had to keep him from falling asleep.

For his last hour and a half, he was out of his therasuit and being stretched. His final exercise of the day was called "cannon ball". It was, literally! He pretty much could not move during his last 30 minutes but calmed down when he discovered he could not wiggle out.

A long nap of nearly 3 hours resulted after we made it home, can't wait to see what he does tomorrow!

About Jace

Jace was born at 15 weeks early, weighing in at just 1 pound, 11 ounces. We are lucky to have him! He was diagnosed early on at our request with athetoid cerebral palsy. Regardless of diagnosis, he is a very happy boy, he brings joy wherever he goes. He went through 3 laser eye surgeries and is also diagnosed with CVI, or cortical visual impairment. In simpler terms, he has optic nerve damage, images that he sees are distorted. Imagine uploading pictures to your computer, but not having the software for your computer to recognize the images, that is the simplest explanation I received from his eye doctor.

Thankfully, early intervention came into his life just a few months after his release from the NICU. We were blessed with an amazing team of therapists who worked with us weekly, and with Jace that meant, occupational therapy twice a week, physical therapy once a week, speech therapy once every other week and vision therapy once a month.

The easiest way to describe him would be to view this link, it is the best description I have found:
http://www.indianchild.com/CerebralPalsy/athetoid-cerebral-palsy.htm 

What is athetoid cerebral palsy ?

The mind is keen but the body is not! Unlike Spastic CP, the Athetoid CP is marked by a movement disorder of muscles, which are too loose, giving the child no vertical stability. His whole body is affected.

The Athetoid child is probably more intelligent than even an average, normal child, leave alone children with other forms of CP. But, he has difficulty scratching his nose, or holding a toothbrush or a pen. He really needs to concentrate hard on muscle coordination to make them obey his command. His face contorts and grimaces in ugly movements that he has no control over. Drooling is a very typical symptom.

Constant writhing movements of the limbs, especially the legs, gives him the appearance of a ‘dancer’. Unfortunately, it is only an appearance. His feet are unable to bear his weight and he keeps pulling them up. The knees bend inwards, touching each other making it extremely difficult for him to be upright, to sit or to walk. In treating patients with Athetoid CP, the focus is on helping the child to regain his centre of gravity. 

The Basal Ganglia in the midbrain are specialized structures, which help maintain posture and automatic movements like the swing of the arms while walking. In Athetoid CP (also called Dyskinetic CP), it’s these Basal Ganglia, which are damaged causing fluctuations in the muscle tone throughout the body. The muscle tone is a mix of high and low i.e. it is sometimes too tight and sometimes too loose and weak. The changeover from high to low is completely unpredictable, making the movements of the entire body uncontrolled and involuntary.

This makes it very frustrating for both the child and his parents, because his intelligence wants him to do some simple tasks at least, but the body refuses. Some experts attribute this damage to Basal Ganglia, to increased levels of bilirubin in the child from infections and blood incompatibility between the mother and her child.

Athetoid CP gets aggravated when the stress levels are high, but almost disappears when the child is asleep.

The parents need a great deal of patience and determination to cope with their child’s stress when he is unable to touch, feel and learn like any other child. They need to keep up his sagging interest, and encourage him along his slow progress. Such children respond well to stress reducing activities, and to cooler climates as their bodies are forever warmed up because of the constant involuntary movement of their body.

In addition to physical and Speech therapy, Yoga and Martial Arts (with perseverance) have been found to be very effective in improving their muscle tone and coordination.

That being explained...to me, he is just Jace...an incredibly happy boy who I can just look at end any of my worries melt away.