Pockets Singing during nap

During nap today Pockets was singing his little heart out.  Here is a video of it. It's not a very good picture, but at least the audio is good.  Also, he probably wouldn't be crazy about me showing his face anyways since he is camera shy...

He is singing a song that we sing regularly at church called "I Will Follow" by Chris Tomlin. This morning when we started singing he looked up at us and commented about how he knew this song.

Here is a music video of the song if you want to listen to it before so that you can understand what he is signing. 
http://www.youtube.com/watch?v=2ODe4sGCKxc

If I say so myself, he is an AMAZING little boy.

More Therapy Updates

Still doing good with therapy.  Every one is so proud including Little Sister herself.

She is looking up more!!!!

She is willing to spend more time on our belly!!!

She is not screaming at just the sight of the excercise ball anymore!!

And she has mastered one of her first goals of reaching for an object by shifting weight to one side, crossing midline to pick up a toy, and then coming back to a seated position!!!!!!! (please ignore the music in the backgroud. It is courtesy of big brother.)

Thanks be to God for all his continued blessings!!!!

Another Snow Day

It honestly must have been the shortest snow day every but last Sunday we got several inches of snow that started after church on Sunday and kept snowing till late in the evening.  As you can ses Ryan and Pockets went for a walk around sunset and there was tons of snow on the ground (probably close to 4 inches).

First thing the next morning Pockets got up and played in the snow.   We used bottles of colored water to draw pictures in the snow and make an obstacle course. 

Within three hours of this picture though every single snowflake was completely melted.  On Monday the temperature got up to 53 degrees by noon.  It made it really hard then to explain to Pocket's that school was closed the whole day becuase of snow not just in the morning when we actually had snow!

Little Sis's Progress Already!!

Little Sis is already making huge progress just in the three weeks of therapy so I wanted to share some of the really cool things we are seeing.

She now sleep on her side instead of her back.  I know that sounds really strange, but this is something to be excited about, beacuse we use to put her to bed/nap (on her back) and come back to get her in three hours or in the morning and she would not have moved one inch.  Now she is waking herself up at night because she is moving around so much that she gets cramped near the edge. 

Little Sis is tolerating belly time much better.  We have to do her nuerological retraining every few hours which used to really bother her, but now she just lays there while we rub her back without complaining at all.  She still doesn't like the joint compression that follows but we are getting there.  During belly time she has gotten where she can stay up like the picture shows for a minute or so before she falls.  She still can't push herself back up again, but she is working on it.

As you can see she is able to look up when she is sitting now!  She has a whole new perspective of the world with seeing more than just the floor.  I never realized what a difference this would be.  Now I often catch her watching the ceiling fans and watching what I am doing just because she is able to lift her head.

Other things we have seen her do recently are rolling her wrists, reaching for toys that she drops, leaning around people or objects to see what is going on, grabbing everything in site, using her arms to push herself back up when she is sitting and falls forward, playing with toys and banging them together constantly both infront of her and above her head, pulling a blanket off her face for peek a boo, and taking your hand off of hers when we try to hold it down during our practice sessions.

We are so thankful for Pat (Case Manager), Whitney (Physical Therapist) and Cathy (Occupational Therapist) for their amazing support.

Pockets is also huge help!

January update

Little Sis turned 9 months old and can start wearing a few small bows without a headband

Little sis is learning to tackle Pockets and wrestle with him.  Pockets is super nice to her and lets her win everytime

We had Family Movie Night a few weeks ago.  Can you tell by the toys which movie Pockets wanted to watch?  That is right Buzz, Woody, and the Army men sat on the couch while we watch Toy Story 3.

Little Sis was dedicated at church this past month.  We weren't able to do it at IBC because she was in the NICU and then we moved, so now that we have settled on a Church home we are very excited to finally get this done.

Pockets has been helping Little Sis alot to learn to use her arm and reach.

Pockets has been wearing Daddy's boots around the house

Pockets and Little Sis are still best friends thankfully!

Pockets and Momma have still been doing a little school here and there.  This activity was melting colored ice cubes to make new colors.  You know that lesson in primary and secondary colors? 

All in all we are doing well and are healthy.  Be looking for an update though soon about Little Sis's progress and more information on her condition.

Little Sisters Evaluation

Many of you don't even know this yet, but Little Sister had an evaluation with ECI this past week.  ECI is actually who I work for and technically we had been with ECI when we lived in Fort Worth.  Here is a link to find out more about ECI http://www.dars.state.tx.us/ecis/index.shtml

I made a referral to ECI in Fort Worth in September 2011 because I was starting to get concerned about Little Sis' gross motor development (neck strength and arm movements at that point in time).  I knew that the referral process would be take a long time so I wanted to refer early.  It took several weeks to hear from them but eventually I did get an evaluation date in late October.  Unfortunately they did not have a Physical Therapist or Occupation Therapist available that day so they were unable to determine with Little Sis needed any help. They did say that she qualified for some services in the meantime so they assigned a case manager and an Early Intervention Specialist.  We were only able to see them both once though as they were very hard to schedule with.  Also they weren't super helpful anyways.  Neither of them had a background in physical development so mainly we just met to mark my chart and not to work with Little Sis. 

When we moved to Lubbock though I put in to transfer her to the Lubbock district. Since then things have moved VERY quickly, and it has absolutely nothing to do with me working there but with the fact that this ECI office is run so much better.  Well since Little Sis only had the case manager and Early Intervention Specialist in Fort Worth, that is who came to our house the first visit.  Our Case Manager is AWESOME!  She realized right away that we needed more help and heard both Ryan and I say that we wanted a physical development evaluation.  Within 24 hours we had a date scheduled which would be in less than 5 days!

That evaluation was actually on Tuesday this past week. An Occupation Therapist named Cathy came over to the house to do an hour long evaluation of Little Sis' abilities and limitations.  Cathy is an amazing therapist and was great with Little Sis and with talking to us.  We love her!
Now here is where things get a little more hairy.  Ryan and I had both expected some delay with Little Sis being she was in the NICU for so long and we realize that she is technically almost 9 months old, but developmentally she is only 6 1/2 so we were giving her some room to catch up.  Still we both realized that she was not quite up to par with her adjusted age of 6 1/2 months either so we knew that she would probably qualify for therapy, we just weren't really prepared for the results that we got.

Little Sis is "significantly delayed" compared to other full term kids her age and "moderately delayed" compared to children the same age as her adjusted age.  Also she has very atypical gross motor skills that are unusual for any age child.  Specifically,

1. she has very weak core muscles so when she sits she is too hunched and rather sits to far back in her hips. This causes her to spread her arms our wide and have a wide base with her legs to maintain balance.  Also this causes her to be unable to lift her head and look at eye level or above when she is sitting.  She also has poor control of her core muscles when being held at your hip so she also has outstretched legs and arms then too.  Also this posture limits her lung capacity so she is short of breath and breaths faster than she should.
2. She has weak muscles in her arms, legs, and chest so she is unable to lift her arms above her head, push against her arms or her legs.  This means she is not pushing herself up while on her belly, not reaching for toys that are not immediately in front of her, and not bouncing up and down on her legs when you hold her standing up.
3. She has very tight joints and rigid movements when you try and bend her knees, elbows, wrists, ankles.  This means that when you try and pull her arms from her chest she is unable to relax enough to let you move her body freely.  She is very tense and tight in her back and shoulders too causing her difficulty with lift her head and neck for the full range of motion.
4. She is aversive to any and all weight bearing activities on her arms or legs.  She actually just starts crying when we push on her arms to compress them sometimes.

So because of the things I just listed, Little Sis is having problems with what are more notable skills like sitting unassisted and crawling.  Also because of the things listed above, all day long she is working harder than other kids so she is worn out and sleeps more.

This all means that sweet Little Sis is now getting therapy at least once a week and sometimes more for almost an hour.  Plus because therapy is done in the home Ryan or I are always present meaning we can do the therapy all day long!

The activities that we were told to work on this week are as follows.

1. Every three hours we are to put her on her belly and run our hand over her back in a particular pattern in order to train the neurological system in her spine and brain to think in a new way.  It is to help her body realize that she has both an upper and lower half of her body and that she has a right and left side of her body.
2. We are only allowed to present food, toys, or outstretched hands (pick her up) above her head.  This means that if she wants the food or snack she must reach both arms high above her head in a coordinated movement to get the items.  *This is one we have worked on probably 50 times today. 
3. We are to do weight bearing exercises several times a day.  For now though she won't even tolerate ten seconds of being on her belly so instead we push on her arms and legs in a specific manner to make her body receive those same weight bearing messages without actually being on her belly.  The only way I can explain these exercises is if you imagine standing with your back against a wall and putting your arm out to tell someone to stop (with your palm out), now imaging someone coming in front of you and pushing their hand on yours.  While you keep your arms straight, they push you back into the wall. This puts weight on your wrist, elbow, and shoulder.  The same can be done if you sitting on the floor with your legs straight in front of you.
4. We are to monitor Little Sis' posture while she is on the floor and in different chairs around the house to make sure are giving her enough support to sit straight up and down and not hunched over.

So, I don't know if you caught it earlier when I said it, but all this came at quite a shock to both Ryan and I. Little Sis has done so well with catching up in height and weight and her cognitive development seems to be fine for now so I guess we just didn't think she would score so low and have so many problems.  I think too that to the untrained eye she looks great and healthy and happy but when you get someone that comes in who knows what they are doing they can tell right away where there are concerns.  With that I can not say how excited I am to have such an amazing therapist working with us!  Hopefully with her help and with God's grace we will be able to catch Little Sis up with her peers as soon as possible. 

Well, please feel free to call, text, or email any questions or thoughts you have. Thanks though for your prayers in advance!

Update

Our Bows are getting bigger

Little Sis is eating everything....

I mean everything

CHEESE!!!!

Doesn't he just look so cute.