SSI Update

I contacted our local Congressmen again and I heard back from Senator Manchin's offiice and they are going to try to help. I signed the release so they can inquire about the Waiver since the local office won't return my calls and the national number keeps giving me the run around. I am really hoping he can help. He always tried to help when he was Governor and now is helping as Senator. Thank you Senator Manchin, we appreciate any help you may be able to provide. I will update more when I hear something, just please pray that they don't expect us to pay two years worth of disability payments back to them and they find out how negligent the local office is!

God Bless you all!!

God Bless Caleb and Camryn!!

Disgusted

So as you all are aware I a appealed the 'overpayment' on Caleb's SSI payments. Well the overpayment was filed on November 2nd and I have got nothing but the run-around from our local office in regards to the Waiver. Also since Caleb's SSI payments are temporarily stopped he has lost his Medicaid insurance which in turn prevents Caleb seeing the Oculoplastic Surgeon regarding his eyes. His Medicaid could be reinstated if the local SSI office would fax, like they told me they were going to do twice, a letter to the Medicaid office stating the Waiver is in process. But why should I count on them to do their jobs?!? It is ridiculous the incorrect information I have been given by them, along with the promises phone call returns. I have contacted the national number when the local office two weeks ago told me they couldn't find the Waiver, however the national number told me they found it right away. The national number then told me they would contact the local office immediately and in that email would tell them to contact me ASAP as this was emergent. Guess what, no phone call back. The national number told me today to go to another local office. I then said 'so since our local office can't get things done I will have to drive my disabled child to another office further away so his case can be taken care of?!?' She said 'yes, and contact your congressman' I think that is ridiculous that the national number needs to suggest that in order for things to be addressed. I have had to contact our Governor and congressmen in the past for things to be taken care of. Absolutely ridiculous. The Waiver appeal has to be decided upon in 90 days. Well lets see, I filed it on November 2nd and as of last week they couldn't find it and today the national number told me there is no progress on the appeal. I wonder if one of the local office personnel had a disabled child would they be sitting on their hands like this?!? What a bunch of incompetent idiots. Sorry for the rambling, I am just so upset and disgusted!

Please pray for Caleb that this gets resolved, so he can see his surgeon and get his eyes fixed and to continue to receive his SSI disability payments and get his insurance reinstated.

God Bless you all!!

God Bless Caleb and Camryn!!

Happy New Year

Sorry all just need to breathe for a little bit and take a break from updating as we have had a rough end to 2010 and new beginning to 2011. Our dog, as stated in the previous post passed away before Christmas and it just has been rough since then. We have had a sewer line issue in our basement (which then flooded us) I have had two sick kiddos for about a week an a half, and Caleb had his g-tube closure surgery and was supposed to get eye stints put in his eyes-which brings me to my next discussion.
So Caleb finally got the hole closed in his stomach that was left from his feeding tube. At the same time they were going to put stints in his eyes to unblock his tear ducts. BUT his surgeon came out after her part and said she has never seen it before but Caleb does not have the parts in the eye to put the stints in. If you pull your bottom lid away slightly from your eye and look towards the inner corner you will see a small hole. That is the puncta. There also one in the top lash line also. So you have a total of four. Well the bottom puncta mainly drain your eye were the top one does a small percentage. Caleb has only 1 puncta out of four so that is why his eye is contantly watering. So Caleb now has to see an Oculoplastic surgeon who will evaluate what is going on. His current doctor seems to believe that they will probably have to create the puncta holes and then create a drainage system. So we will be seeing that doctor next Friday. In addition, Caleb had a horrible time with the anesthesia this surgery he was really sick. They actually kept the outpatient recovery area open for him. Around 7 that evening they called the anesthesiologist and told them that he was very nauseous but was not actually vomiting. In addition he was very upset. While he was in recovery they gave him a lot of fluids so the doctors then asked us if we felt comfortable taking him home. It is kind of odd that we felt more comfortable taking him home then keeping him there. We know what to do and we know what warning signs of concern to look for. I was happy though that they asked us to make the call as to whether to have him admitted or not. We got him in the car and he slept the whole ride home, about an hour and fifteen minutes. For a kiddo that never naps we knew he felt crummy but figured he needed to sleep it off. When we got home my parents were babysitting Camryn (who I am so proud of because she ate for her grandparents) and when Caleb saw them he smiled. He slept well that night and the nausea seemed to be gone the next morning. But the next week and a half was very nervewracking as his incision opened up and we were concerned about infection and I am happy to report that in the last few days it has finally scabbed up. Phew! Very nervewracking. He has been having some GI issues since the closure, that we have been trying to manage here along with some medicines that will hopefully help.
So next step is to see the oculoplastic surgeon and then coordinate with craniofacial to see if they want to do his nose repair at the same time. Also, pray that his GI issues resolves and the kids get rid of these nasty colds.
So that is where we are for now. Sorry again for the delay it has been REALLY hectic with everything going on. I promise to be better at updating this year. I thank you all for following and checking in and I wish you all a fantastic New Year!

God Bless you all!!

God Bless Caleb and Camryn!!
So he

Sweet Saba

Our sweet dog, Saba, passed away early this morning here at home. She had been having problems the past few months but did not seem to be in pain until lastnight as she was not able to walk really well at all. We were going to take her to the vet this morning to put her down, but Saba as courageous as she always was, decided to do it on her own terms. We found her early this morning in our hallway. Saba was our first child. She was an amazing dog, very loyal and wonderful and protective of the family. We loved her very much. We will miss you so much Saba we love you. Rest in peace Saba dog! We love you pretty girl!

Just this side of heaven is a place called Rainbow Bridge.
When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge.
There are meadows and hills for all of our special friends so they can run and play together.
There is plenty of food, water and sunshine, and our friends are warm and comfortable.
All the animals that had been ill and old are restored to health and vigor.
Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.
They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent.
His eager body quivers.
Suddenly he begins to run from the group, flying over the green
grass, his legs carrying him faster and faster.
You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.
Then you cross Rainbow Bridge together....

See at Rainbow Bridge someday Saba dog. Thank you for being such a wonderful dog. I love you!

God Bless Saba!!



God Bless you all!!



God Bless Caleb and Camryn!!

A lot Going on and A family in Need UPDATED

Hello all, well I did have some updates but I think I really need to tell you about a local family in need. I went to school with the father of this family and he is a wonderful man and his family really needs our help. I know all of you that read this blog are wonderful people so please spread the word about the loss this family has suffered.
Jason Koegler and his family (wife Sarah and two sons Will and Campbell) house burned down lastnight and they lost pretty much everything including their Christmas gifts. A website has been set up where they are collecting clothes and toys for the family. I am not sure on the sizes for the parents but I do know the boys wear 4T and 5T and size 12 and 10 shoes. Here is the website were they will be adding more info. But I do know that like some of you, if you live far away they are accepting monetary gifts too. Please visit this website and help this family.
http://koeglerfund.wordpress.com/
God Bless the Koegler Family!!
UPDATE
So the family needs gift cards more than anything. Places like Old Navy, Target, and Walmart. Please follow this link to send gift cards. http://koeglerfund.com/
God Bless you all!!

God Bless Caleb and Camryn!!

Still Waiting

Well we are still waiting on a decision to our appeal for Caleb's social security disability payments. I have called several times, and they do not have any updates regarding the decision.

Caleb continues to do well in school and with his therapists. He is talking and walking more. I am hoping he continues to improve in both areas! If we could really get him talking OR signing more that would be great. I have been really urging him to talk or sign more and he is picking it up very quickly, and sometimes uses signs or words on his own without prompting. He has also started back to his outpatient therapy as well and his therapists have noticed a difference in him since his start of school. They think he seems like a different kiddo, music to my ears that they think he is growing socially.

He is going to need another surgery, I think this around surgery number thirty something. The hole left from his g-tube did not heal so he is going to require surgery to close it. Caleb has always had the hardest time recovering from stomach surgeries, he even recovered from his open heart better than when his t-tube was placed. I am really hoping that this surgery recovery is not hard on him. I am so nervous about another surgery. I don't understand, now looking back on it, how we mentally handled Caleb have so many surgeries close together. He is so tough and I am so proud of him. We have also found out that his tear duct in his right eye is blocked and will need a stint placed surgically after the duct is blown out. After three months they will remove the stint in the office, YIKES. So the surgeons have been so wonderful to agree to share the OR to get these to surgeries done under one GA (general anesthesia) exposure. Thank goodness, he has had so many surgeries (somewhere in the thirties) that one less exposure to general anesthesia is good!

Caleb is really beginning to try to interact with his sister, Camryn. He shows her his toys and I even got him to give her a kiss. We have been blessed with two wonderful children.

I also have to say how proud of my husband, Brian, I am. He has worked hard at AT&T for the last couple years and recently interviewed for a sales position with Lamar and was hired. We are so proud of you Brian! Congratulations.

Also, a special prayer for a friend of ours who passed away three years ago from Leukemia. Samantha Welch was a strong and beautiful 17 year old that fought so hard. We met her and her mother while we were at Duke Hospital for Caleb's transplant. We became very close with the both of them. Samantha always drew pictures for Caleb that we hung all over his room, and when she would do her 'laps' around the floor. Should would always knock on the door and talk through the glass door to Caybay as she couldn't come into his room because of his isolation issues. We visited her room often though and became very close with her and her momma Faith. We all believe Sam is one of Caleb's guardian angels. Sam we love you and miss you so very much. Faith we think of you often and miss you too! God Bless you Sam and Faith!

Thank you all for stopping by and checking in on us!

God Bless you all!!

God Bless Caleb and Camryn!!

Pumpkin Patch (UPDATED)

Hi all, I hope everyone is enjoying this month's festivities. We were able to go to a pumpkin patch recently,first time for Caleb. We had to move quick though as a storm was moving in.

Caleb started smiling when he saw all the pumpkins. He eventually walked around a little bit holding my hand and he did great. We picked out two pumpkins, which we later carved. He was in shock at that whole process too. He was so cute watching Brian and I when we carved the pumpkins.

Well, Caleb is still fighting his nasty cold. He is on another round of antibiotics. Poor guy. Hoping he can shake this cold soon! He is supposed to get his next round of shots/immunizations next week, but I am not sure if he will if he is still sick!

Caleb got to dress up for school for Halloween this year, he is spiderman! He won't wear the hood as Caleb is really averted to any type of hat, which will make dressing this winter difficult. But he kept his costume on all day and he looked very cute! I only got pictures of him at school with my phone, so I will take more Halloween night with my camera to post on the blog. He looks so cute as Spidey!

A couple of our friends are going trick or treating at our local zoo tonight. I would love to take Caleb but I am not sure if it is the best idea. One, he hates to wear hats and unless I can figure out some way to keep a hat on his head (even the ones that have the Velcro strap he manages to take off) it is a definite 'no go' as he has to stay warm especially with still having his cold. Two, I am not sure how he will react to that many people and the 'fright' aspect. So it looks like I am leaning towards a 'no go' as of right now. :(

As far as social security, I have contacted many local politicians and only two responded and were not a great deal of help. So needless to say I don't feel a strong urge to hit the polls this Tuesday to vote. Such a change for me as I used to be so big into politics. Anyway, we are filling out the paperwork to file the appeal. Praying they approve our appeal and don't make us pay the money back.

UPDATE: Got a letter of response in the mail today from Senator Rockefeller in regards to Caleb's SSI. I have to sign a form to allow him to look at the info, per the Privacy Act. WOOHOO I hope he can help us! He has helped or tried to help in any way every time I have asked! Thank you Senator Rockefeller!

I also wanted to say a quick thank you. I often wonder if I thank everyone enough. You all have been so wonderful to our family through the past four years. We are truly grateful for the emotional and physical support you all have provided for our family. It has meant so much and continues to mean so much to us. I thank you all for understanding our situation and our special circumstances. Thank you so much!

Well all, I have an itty bit waking up wanting to be fed. I will post Halloween pics as soon as I can!

God Bless you all!!

God Bless Caleb and Camryn!!

One of those tearful days

So I was going through the mail and received a letter from our wonderful government regarding Caleb's disability payments. The letter indicated that they want to be repaid back all of Caleb's monthly disability payments back to October '08 yes that is right of 2008. So I called the national number and the only explanation the lady could give me there was that we owe the amount specified in the letter, no explanation of why. So then I called our local office and the explanation I got was they just got through all of our information we supplied which makes no sense at all. You supply information every couple months along with pay stubs. BUT NOW TWO YEARS LATER they want everything back. What is wrong with this scenario? It takes them that long to go through everything? Are you kidding me? Nonetheless, I FULL well know that the months that we submitted pay stubs for Caleb should have gotten disability payments based upon the criteria set by our wonderful government. So the lady at the local office was of no help, all I can do is file an appeal while our government wants a lot of money back. I am disgusted. I am disgusted at the fact that we all know and have seen individuals out there that totally abuse the system and get help when they shouldn't and then there is an individual such as Caleb, who was initially told by the SSI 'he wasn't disabled enough' to get disability, who finally was approved for disability but now they want all their money back. Our government is ridiculous. I have been in the past a pretty active participant in supporting our local politicians and government, why? so they can do stuff like this to my son? I will not vote or partake in any elections anymore. They are all corrupt. They worry about themselves and not about how THE SYSTEM is failing people such as my son. I am sorry to have such a bitter post. But why do I continually have to fight with our government to get him disability. It took over a year to get him a state disability medical card. It shouldn't be this hard. Our government is getting worse and worse by the day. How can they do this?!?

Please say a prayer that Caleb get the help he deserves!

God Bless you all!!

God Bless Caleb and Camryn!!

Another infection?

So Caleb has had about three colds since the start of the school year. Unfortunately, this last one seems like it is a little harder for him to kick. This cold started about a couple weeks ago after we had a trip to the ER after he had a reaction to a vaccine. Which, I would love to note is the first ER trip that did not result in a life-flight! How about that for a milestone?!? Back to the cold..we were hoping to attend a Family Fun Night this evening at Caleb's school as Bri and I were so excited to attend something like this and see how Caleb plays with other kiddos and just to be able to go to something like that is a big deal to us as not to long ago we weren't sure we would be able to do something like this due to Caleb's medical condition. Well needless to say, Caleb has been running a fever off and on and we just got back from the hospital to get some chest x-rays and we will see the doctor this evening to try to figure out what is causing the fevers (as he still can't tell us where he doesn't feel well) and to try to get him some help to get rid of this cold. Looks like we will have to wait until the next family fun night.

Also, Caleb's school pictures came back. His teacher was so excited to show me the picture when I dropped Caleb off at school on Monday. I couldn't believe my eyes the pictures were perfect.

He didn't hide his face and he smiled, of course I did hear from a little birdie that his teacher and aide worked very hard to get him to smile like he did and not to hide. Thanks ladies! There is still a little evidence of his black eye that he got from a fall in school, but we don't mind. He looks great! So I held it together and then when I got back to the car from dropping him off I started crying. I remember praying for things such as this when Caleb was so sick in the hospital. Thank you Caleb for fighting so hard when you were sick. We love you and are so proud of all of your accomplishments. Keep it up lil man! We love you!

Thanks for checking in on Caybay!

God Bless you all!!

God Bless Caleb and Camryn!!

Bumps and Bruises

So school is going well, however, since Caleb is new at walking he takes things too fast and has fallen a couple times in school. He actually gave himself a black eye when he fell and cracked his temple on a chair. His teacher is wondering if he would be safer wearing a helmet while in school so he can be independent yet safe. We okayed the idea so we are looking into helmets. I also asked the school and his physical therapist if she could go evaluate him at school to see if she could make any suggestions. She will be visiting his classroom this week to see if maybe some sort of brace could help him be more stable.

Caleb has been very adamant at not wanting to wear his hearing aid and we aren't sure why. We are taking him to his audiologist this week to get a program put on his hearing aid that will allow him to hook up to the FM system at school.
Here is a little bit about how an FM system works:
Personal frequency modulation (FM) systems are like miniature radio stations operating on special frequencies assigned by the Federal Communications Commission. The personal FM system consists of a transmitter microphone used by the speaker and a receiver used by the listener. The receiver transmits the sound to your hearing aid either through direct audio input or through a looped cord worn around the listener's neck.

Personal FM systems are useful in a variety of situations such as listening to a travel guide or book review, in a classroom lecture, in a restaurant, in a sales meeting, or in a nursing homes or senior center.

FM systems are also used in theaters, places of worship, museums, public meeting places, corporate conference rooms, convention centers, and other large areas for gathering. In this situation, the microphone/transmitter is built into the overall sound system. You are provided with an FM receiver that can connect to your hearing aid (or to a headset if you don't wear a hearing aid)

I am hoping he will get over this aversion to the hearing aid, as I think the FM system for him would be great. Crossing our fingers that he gets used to his hearing aid again very soon. I have also asked the audiologist if we can fit Caleb for a piece that goes on the hearing aid to help it not flop on his earlobe as this is the earlobe that folds over a little bit.

Well I just wanted to post a quick update to let you know where we are!

God Bless you all!!

God Bless Caleb and Camryn!!