Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"


Saturday, October 25, 2008

UPDATES!

Couple updates for all of Caleb's fans:

Immune: Well we will be checking Caleb's immune system next Monday. I just got the go ahead from Dr. Markert to draw his blood on Monday to see how he responded to his second tetanus shot. We are praying really really hard that the blood work shows a response. Unfortunately, the blood results usually take about three very long weeks to come back...so stressful of a wait. We were hoping to maybe have had some results back sooner (as always); so if the results showed function maybe we would have gotten the go ahead to see the grandparents at their homes on Halloween, but maybe next year.

Bathtime: Okay so Caleb was sponge bathed the whole time he was in the hospital and we continued to do that when we first got him home until we figured out a method to try to protect the IV from water. We use Saran Wrap press and seal over his dressing-works pretty good. Anyway, he did not like sponge baths (as all the nurses from Duke and CHP will tell you) or baths in an infant tube. He would cry from the point he got in to the point he got out. At times he would get so upset, he would turn blue, vomit (which makes is a whole other issue with a feeding tube and a Nissan Wrap and I will spare everyone with the specifics). His therapist said it is probably part of a fear of something new and due to his sensory issues. HOWEVER, I decided a couple weeks ago to put him in a regular tub. It definitely took some getting used to, but I am happy to say he loves it now. Now he cries when you take him out. I have pics and I will post them soon.

Therapy: He has not really crawled since the last post. We just signed the releases to get PT and OT in here so hopefully they can work with him and get him a little more active and mobile. Caleb walks with support, therefore, I am wondering if for a little while if it would be beneficial for him to have a child's walker to give him some independence until he is able to walk without support. As far as eating...he a couple times has put a fork or spoon up to his mouth on his own. Once or twice he has managed to get a small bite in his mouth, but he doesn't know what to do with it at that point and starts to gag. We have been told by his speech therapist to only let him feed himself and that we should not feed him as forcing food upon him may make him regress with his process. So when Brian and I sit down for meals we put Caleb in his highchair at the table and let him play with his food and do with it as he wishes. Even if he puts his hands in his plate, this is a huge hurdle for him as he didn't even used to do that. We are still trying to figure out what is the best way to 'communicate' with Caleb. We do sign language, pictures, and oral communication and we are trying to figure which one of these three is the best way to bridge this communication gap. However, I did catch him today holding an index card that has the ASL (American Sign Language) alphabet on it and while holding it he was pretend signing with the other hand and babbling when 'signing'. SOOO maybe he will do okay with ASL. After todays events I have been signing like crazy with him.

Insurance: Caleb's doctor at Duke, wonderful Dr. Markert, filed an appeal on Caleb's behalf (as weird thing is I cannot file an appeal as I am the mother - tell me that is not messed up) to petition for more nursing hours coverage and to make the insurance company cover his Synagis shot. They have denied his Synagis shot (shot that protects him from a very bad respiratory infection, which can be life threatening, called RSV). I also heard back from Governor Manchin and Senator McKenzie and they are both inquiring certain agencies regarding the issues we are having with Unicare. I contacted more individuals but these two responded quickly and are already being proactive in regards to Caleb. The other individuals I have contacted have chosen to ignore my emails, phone calls, etc. So needless to say if they are up for re-election they will not be getting my vote.

Nursing: Well, I know some of you are aware but for those of you who are not, we had to let go of one of our nurses. We just need to have someone who is here for Caleb and Caleb only, without drama, lies, saying/doing questionable things in front of Bri, myself and our parents, etc. We are fortunate enough to have a nurse now that we thought at first was only going to be able to work 1-2 days a week, because she did not want to initially leave her other job. However, we lucked out and this nurse is now on Caleb's case full-time (8 hrs 5 days a week), as she wanted to leave her other job and work with Caleb after spending time with him for the first couple days she was here. (Maxim is in the process of getting more nurses for this case.) She is VERY competent and has experience in the PICU and I feel more comfortable that she will not 'flip' about the smallest things-like we have dealt with. She is also really knowledgeable regarding therapy and is very involved when Caleb's therapists are here. I hope that we can continue to get more competent nurses like the one we have now.

Well, Brian just got home from work so I am going to end this update here. Now that we have a nurse I will definitely be able to update more frequently! So check back soon. Also if you want to be notified when an update is added to this blog, you can become a 'follower' by following the 'follower' link on the left side of this page and signing up to be notified!

Thanks again to all for checking in on us! God Bless you all!!

God Bless Caleb!!

7 comments:

Anonymous said...

I get teary eyed every time I read about his progress. He is a true miracle. I am so proud of him. I love you guys : ) Melissa

Jess Tuschong said...

So happy to hear all those updates...that's amazing that he's trying to walk! I hadn't heard that!! Love you all....

Aunt Jen said...

Go Caleb, GO!!! He is so amazing, as are his parents, whom without none of this would be possible. You are all so amazing! We are praying hard for a functioning immune system, a fast turn around of the results, and progress with the therapies!! God Bless you all!! We miss you so much!!!! Love you!!
Love-
Jen, Andy and Haleigh Rose

Lara Graves said...

Wow. Walking? That's awesome. You know some kids skip the crawling. Caleb might just be one of them. Glad you have the nurses sorted out and are on your way!

Lara

Amy, Mike and Ben Russo said...

Thanks for all the updates. I'm tired just hearing about all you have going on.

Eva Nichole said...

What wonderful news all around!! I hope the insurance thing gets worked out better. I am also so happy you have a nurse now that will really work with him and work hard for you all.
Hugs,
Crystal and Eva

Chris B said...

So glad to hear all that good news!! Can't wait to see new pics when you get a chance - and certainly praying for good results from the recent bloodwork!!

Much love-
Chris XOXO