Friday, October 9, 2009

Some news!

First off... THANK YOU for praying for our little Elliana!

I am happy to report that the full capful of MiraLax has fully kicked in. Things are REALLY working now- maybe a little TOO well! Let's just say that mommy has a lot more laundry to do this week- yikes! I will spare you the lovely details.
She has been eating a ton this week as well and no more blood, so it looks like we are moving in the right direction. Hopefully by her next appt she will have gained at least a few ounces! I am still determined to find the cause of the constipation, so we are not completely through yet- but we are on the right track I think!

Moving on....

On Wednesday, I took Elliana to her evaluation at CVRC (Central Valley Regional Center)and it went very well. Basically we sat in a room on a big mat on the floor and watched her play and interact with people. Well, they weren't just any random people- it was a pediatrition, speech therapist, physical therapist, occupational therapist, and two social workers. I was so nervous that she was going to be real clingy to me and not want to get down and play or look at anyone, but she did wonderful and really she "shined" so much that I was wondering if she would even qualify for services!

They looked at all of her history that we had, asked me a TON of questions and mostly just tried to get her to play and do different things and made notes about what she was doing. There are five main areas of development that they watched and evaluated her in:
Cognitive Development
Social and Emotional Development
Speech and Language Development
Gross Motor Development
Fine Motor Development

These areas of development are broken down even more, but I'll have to wait until I get some more results before I can know what I'm talking about!

Anyway, after about an hour and a half the 6 different people went around and shared their "results" of the evaluation.

Basically because she was born 9 weeks premature, they have to asess her based on her gestational age not chronological age- so she was evaluated as an 11 1/2 month old, not an almost 14 month old which is what her actual age is. At 2 years of age, preemies should be relatively caught up so at that point they base it on chronological age. A child under 2 must be 33% or more delayed in an area in order to qualify for services. They also take into consideration prematurity, alcohol exposure, respitory distress, blood transfusions, or anything else that happened at birth or early on that could have contributed to the delays. ( And Elliana has all of those factors)
While she is definitely delayed in all areas of her development(which is called global delays), she only qualifies for services in two main areas.

One is what they called Self Help and I was told she was at a 5-6 month level in this area. These are things like: does she try to hold the bottle (no), can she feed herself snacks (she actually doesn't put anything in her mouth), can she hold a cup (no), doesn't play by herself or even want to explore things by herself.

The other area of largest delay was receptive language. She is at about a 5-6 month level in this as well. Between 7 and 12 months a baby listens when spoken to, recognizes many words (although obviously not able to say them all) like Mommy, Daddy, bye bye, no,toys, eat etc. A baby learns how to play simple games like peek a boo, patty cake, and is able to look or point to something when you say it.
Elliana cannot do any of these things.
They actually think that she may have a hearing impairment which could cause a lot of the delays. They tried several times to do a hearing test, but she wouldn't cooperate so we will have to do it another time I guess. She is obviously not deaf- we know she can HEAR. But there is quite a big gap between being completely deaf and perfect hearing. It could be more of a processing thing, which is a little scary to think about. Basically to her everything we say may just sound like blah blah blah. This makes sense to me as I have noticed for awhile now that she will turn her head to any name I call- Elliana, Sa-ra, baby, sweet girl, whatever- as long as I use the same tone of voice. She also does not respond when you ask her where's daddy or mama? Or when you say bye bye. I have been working on a lot of different signs with her since the beginning and I have been suprised that she has not picked any of them up yet. Tonight I was encouraged though- because when she saw her bottle she made the sign for Milk. If you say the word she won't do the sign, but if you show her- then she gets it. Hmmmm.
I am very curious to see what they will do to help us in this area. Her expressive language is better as she is babbling and smiling at us- which is great. I just wonder how this other part will affect her speech development if she can't make out the actual words.

In all of the other areas she was about 25-30% delayed (based on 11.5 mo old)so she didn't quite qualify for services to help with some of the motor skills issues and floppiness. Bummer. But the GREAT news is that our case is being sent to the Early Start program in Clovis Unified and the services will be FREE! Thank you Lord!!!
We should hear from them in the next week or two and then probably start intervention sometime after that.

WHEW! That was a lot of details!

There are some who are of the "wait and see" opinion when it comes to things like this, and really if you are one of those- I admire your patience!
If you have read my blog for any length of time, you know that I am most definitely NOT one of those types. I am more of a let's figure out the problem and git R' done- type person. And well- there are certainly plenty of times when the Lord has intervened in order for me to give up that control factor and be forced somewhat to wait upon Him. Most of the time that's the only time I will sit still!

We are choosing to be pro-active rather than re-active in Elliana's situation. Yes- without a shadow of a doubt this little girl is doing AMAZING compared to when we first got her. She couldn't even sit up and now she is crawling! She is social and has come far in 2 months. The attachment is getting better each day- praise the Lord for that as well.
Could we have waited 6 or 8 months to make these appointments and see if she eventually "catches up?" For sure. And a lot of families do and their children turn out just fine. Could I ignore the red flags that we are seeing and just tell myself to quit worrying? Yeah well, I could but we are not going to make the same mistake we made years ago with not getting help early on with one of our sons. Denial is not necessarily a good thing.

Or should I trust my mommy instinct and keep moving forward as the Lord opens the doors and the Holy Spirit guides us through? Uh, I don't think I need to answer that!

So while I am pleased that Elliana will be able to receive services, at the same time I am learning to give all my anxiousness and fears to the Lord. It is such a process and one that I am positve I will be still learning many years from now!
We praise God that even though it seems like she has all these "issues" that we are dealing with right now, she is still a very healthy little girl. She does not have a life-threatening disease, she is not mentally retarded, she is very smart and alert, she is thriving in her new family and each day she is seeing and learning what real LOVE is.

And of course the Lord is teaching us more through this little one than I ever imagined possible. But I'll save all that for another post... :-)

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10 comments:

Rebecca Wolfe said...

Oh Candice!! I am so happy to read this entry! I know it isn't perfect, but I am shouting out PRAISES to God!

Thank you for sharing. I want to write more, but have much to do before leaving tomorrow.

I continue to lift you all up in prayer and thank our Lord that our paths have crossed. You are such a blessing to me!

Noel said...

YEAH!!! I've been prying for you and little Elliana! I'm so glad for the update! I applaud your "pro-activeness!" I'm thrilled she is doing so well and I'm so delighted you get FREEE services! That is wonderful! God is so gracious.

silverjewel said...

Praise God!!!!!!!!!!!

M, A and C too! said...

I'm so thankful to read that things are getting better/"getting figured out"! What a blessing the services will be for you and your sweet girl!
Praise the Lord for HE is GOOD!

Big House Creations said...

I am an early childhood educator and I totally agree that opening up these doors for her will only help her development. The things they will do for her are not going to be invasive or hurtful. They will be fun and playful. She will enjoy her therapies and she'll be benefiting greatly. Praise God for your family and the amazing steps you are taking to get Elliana such great care!

emily hope said...

thanks for the update, Candice! So glad to hear that you're seeing improvements and moving forward :)

Kim said...

So glad to hear the Miralax is working!!! Thanks again for showing us what proactive mamas like you can accomplish!

Can she be any cuter!!!

ehouse said...

Candice...PTL!! that's so great that the meds are working and that you're getting help with some of her other issues. i think it's wonderful that you're starting early and it's FREE! better to be proactive than wish you would have been later on.
-elizabeth

Tina said...

Im happy you are getting some solid answers. ..and also happy for the poops! YIPPY. YOur great people and a wonderful lady. Will continue to pray and watch Elliana grow!

Leah said...

Thanks for sharing your journey and heart! It is always such a hard balance to find the place God wants us-- between being proactive and giving up our control, so God can lead. I struggle with this, too!!! I am in that battle right now. Hearing your heart through the internet has blessed me.

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