This Journey Our Life

Cami Update—Prayer Request

CamiRachel

Today at 4:30 p.m. Cami has an appointment with a new pediatrician. It will basically be to evaluate and discuss what further steps need to be taken in the endeavor to seek and receive further care for Cami.

Just to give you a little background...

Last school year her teachers began pointing out some concerning behaviors/symptoms they had noticed (we noticed several of their concerns as well). Their main  concern was more for seizures and after Cami was seen by a neurologist, an in-home EEG was conducted.  Those results came back inconclusive.

They were sure that there were no seizures taking place but it did indicate slight abnormalities. To be honest, I am not even sure what exactly that means.  Unfortunately, we dropped the ball and did not ever go back to that neurologist to get the test results officially examined or to pursue the next step. This was largely due to the fact that we had received a very large bill for that EEG and did not want to schedule any further appointments with that doctor until it was all cleared up.  It was about $5,000! Not only were we unable to pay that amount, we certainly did not want to add to it. What complicated matters was the fact that this was all under a temporary insurance we had during the time Rudy worked at a short-term job he had while transitioning between ministries.

We are so thankful that after disputing it several times, Rudy just found out this past Friday the bill will be re-submitted and we should not have to pay for any of it!  The ironic thing was that it was simply a matter of the claim number being incorrect by one digit. What was supposed to be a letter “S” was written as a “3”! {So make sure you double-check all those bills and dispute them when necessary!}

In the meantime, we continue to see some noticeable things in how Cami relates to certain situations, environments and people. Sometimes she is fine--other times she is not. {I'm sorry if this sounds vague but it really is hard to concisely explain via a post v. face to face. Perhaps one day I will elaborate…}. 

Due to the state of Virginia's definition of and requirements for a developmental delay category in the special education system, Cami aged out at age 7. This implies—just as we were always informed of by therapists—that a child even with such an early, rough start as Cami should be fairly to caught up at this point. {We do realize that testing and opinions even from so-called experts are certainly not always accurate so we try to avoid putting Cami in a box when it comes to her goals, expectations etc.}.

Currently, she still receives special education support (in a general education setting)under a visual impairment category and receives: speech, OT (occupational therapy), Vision (learning Braille etc), O&M (Orientation and Mobility: cane use/instruction); Cami also has a PHTA (Public Health Training Assistant). At the beginning of this school year, Cami was continuing to struggle with some basic concepts all while the academic level kept increasing. Due to this, we made the decision to have her pulled out for one-on-one teaching for up to four hours each day. This is in addition to her established supports

We just want to make sure that in our focus to support Cami 's visual impairment needs and in our efforts to have her reach the necessary goals involved in that, we have not overlooked anything else.  After much prayer and consideration, we have decided to become more aggressive in actively seeking further opinions regarding Cami.  We are not sure if we will ever have a concrete diagnosis, but we are going to do all we can to help her.  We want to make sure we are doing everything that is in our power to do and cover every base in seeking a diagnosis (if there can be a specified one) so that we can then seek the best available options for a therapy/education environment for Cami.

I do want to take a moment to let you all know how thankful we are to each of you for your prayers for Cami and we continue to be so thankful for progress that she has made; we are certainly not trying to diminish that! I also don't want to paint a doom and gloom picture so rest assured that we enjoy very good, fun, happy days! Cami still loves music as she twirls to it! {For those who may not know,Cami is able to twirl for extended periods of time because she never gets dizzy!} She likes to laugh and be silly and seems to feed off the attention she gets from making others laugh at her silliness! =)
 

Today's appointment is more of an initial starting point. Please pray for wisdom for us and that the Lord would clearly direct each step we take in this endeavor. Pray for wisdom and guidance regarding which doctors we should see and what care or help we need to pursue (or should not pursue).  Please also pray for wisdom for the doctors and each of her teachers as well. 
 

Cami has another upcoming appointment with a new neurologist in April (that was the earliest we could be seen when I called in January!). I will keep you updated on that.
 
I apologize for this detailed, lengthy post with few pictures.  I do hope it makes sense as it can be difficult to communicate such details without getting too lengthy. At the same time, I am grateful that I now have a place to share my heart regarding alot of the concerns that both Rudy and I have for Cami’s current needs since it often proves difficult to sum it up in short conversations or encounters with those of you who do ask. 

I appreciate the sincere questions which are asked out of your genuine concern for Cami, the fact that so many of you do care, and most of all—your prayers.
rachsig3