Monday, September 27, 2010

HE WALKS!

Dalton walked without his walker and hands free for the first time Friday Sept. 24, 2010! I am so proud of him! He can initiate his own steps and is heel striking with both feet. He gets so excited and gets off balance, but he is unstopable. God is so good, and my prayers have been answered. I have been looking for a costume for Dalton this year and have decided to go with a cute clown. After all he is always clowing.

Tuesday, June 15, 2010

Getting there slowly but surely!

Dalton's botox procedure went well with no complications. It was not as bad as I had pictured it and I actualy look forward to the next injection and its benefits. Dalton is the big 2 now and in to every thing :)O. He has graduated out of the infant class at school and just in the few weeks he has been with the big boys his development has changed so much. I am having to learn that I can't always protect him and that trial and error is the only way he will learn. His speech has improved and he is trying to mimic sounds and words more than before. He absolutely loves his Maggie Dog (our Yellow Lab), and goes to the door now and yells for her. I am so desperate to talk with other parents who are experienced and educated in Dalton's type of CP. It is difficult to find kido's that are effected the same way, and my urge to understand what life is going to be like for him is growing more and more. This comes with the daily reminder that this is a life-long condition and that the obstacles have just begun for him. We have seen all of the specialists, we have all of the therapy possible, we get the procedures, but the Cerebral Palsy doesn't GO AWAY! I get aggravated by so many questions about "when do they think he will walk on his own?", "Is he walking yet?" People have no idea of how uneducated and insensitive that questions seems to me right now. Are they not happy that he is alive? Is that all they notice about Dalton, is that he can't walk? Do they not realize how far he has come? I do! I remain grateful everyday regardless of the discouragements and pray for his progress..

Tuesday, May 4, 2010

Dalton is doing great. I am able to work full time now and we both love his daycare. He is thriving there and has changed so much, so fast. He has new articulated AFOs and is going for Botox therapy for his ankles on May 11th. Physical Medicine thinks that this is what he needs to get his heels down more. Great part of it is she doesnt want to cast him. He will just have therapy twice per week and ware his braces for 12 hours per day. His second Birthday is just around the corner and I am kinda sad, because he is growing up too soon. We went to a B-Day party and I realized that he is the size of a 4 year old. So strong and stubborn, just like his grandpa. Check out the shades, isn't he cool?

Tuesday, January 26, 2010

Nancy's Poem...its like she took the thoughts right out of my mind.

The preemie experience is the shattering of all your dreams


For a normal, healthy delivery,

Of the ability to carry home a beautiful squirming bundle

After a short stay in the hospital.


It is lying there in your hospital room listening to

The happy sounds of whole families joined

Together by the birth of a grandchild, cousin, niece,

Or nephew, and knowing that your

Child is miles away and may not survive long enough

For you to see or simply touch.


It is that first glimpse of a skinny, scrawny, not much bigger

Than a Barbie doll child

And feeling, fear, awe, and joy for such a fragile soul.



It is sitting by your baby’s “bedside” day after day,

Week after week, month after month,

Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”

And the lows of “I’m sorry, Mrs. Moore. Something has

Shown up in Lauren’s ultrasound,”

Or even “There is nothing we can do…”



It is hearing the alarms go off for the twentieth time in less

Than fifteen minutes because your

Child’s heart rate keeps hitting zero.



It is watching children dying around you, wondering if

Your child will be next.It is hearing your child’s cry of distress as the nurses

Insert yet another IV and do another

Round of daily blood tests.It is meeting other parents of children who are doing far better

And wondering, “Why me?”

And meeting parents of children who have just died,

And praising God for His mercy

To your child and feeling guilty because your child is alive

And someone else is grieving for theirs.

It is days of nightmarish testing and coping with less

Than positive results to the tests.

It is days of joy at seeing the first eyelash appear,

The child gain a whole ounce in one day,

And two bright shiny eyes look at you and into your soul,

And knowing that your child now recognizes you as Mama .

It is that final hurdle before coming home!

It is the sorrow of waiting for the monitor company

Representative to show you what to do

If the alarm sounds when your child is choking,

Gasping for breath, or simply dying.

It is the joy of just being away from all those nurses

And tubes and wires and beeps, and

Walking into the nursery you hastily prepared because, after all,

The child wasn’t due for another four months!


It is thinking the nightmare is over…only to realize it still

Continues in the form of

Such acronyms as PVL, RSV, BPD, CP and numerous others.



It is the final realization that those developmental delays

Have to be dealt with,

That reflux is a normal and unfortunate occurrence in most preemies,

That the constant fight to gain weight is in direct proportion

To a preemie’s ability to do so.



It is the mental images of a child running and playing

And communicating with others in a

Perfectly normal manner that are marred when you face years of therapy

In order to simply get the child to eat by himself or herself,

To talk or walk and then run.


The preemie experience is a journey…

A journey through your soul in order to find the faith and strength to cope,

A journey of the mind when you face the emotional weariness,

A journey of the heart…to accept that, no matter what,
This child is yours,


And you will love this child no matter what.

MY LIL ELF IS GETTING BIG!


Dalton done GREAT!! He had the heart cath. and his PDA is CLOSED. His lungs sound so much better and he barely has a scar. He has developed so much in the past couple of months. He is transitioning now and can change from crawling to sitting. He wants to let go when he cruises but hasn't built up the courage yet. He also has taken up holding his own spoon, and he can feed himself from a sitting position. It is crazy how fast they can change and I am reminded everyday how much my baby is growing up. He called grandma from my cell phone yesterday all by himself and I heard him jabbering away...lol...she said "he said his piece and then hung up".