Poker Run"Giving to Gabby" August 11, 2012

A couple weeks ago I was approached by a high school friend of mine about doing a poker run for Gabby. She had been reading my blog and had decided that they want to keep the funds from the poker run local from now on. I thought about it, and with Gabby new found vision (She got her contacts, and can see with them in) I had been wanting to get her an ipad. I have been doing lots of research about the positive effects from having an ipad. This was our answer on how to be able to afford one. The Ipad and equipment that goes with one is costly, We know she needs a switch, and an arm to be able to attach it to her wheelchair. Gabby will also be receiving IT services in the home once she turns 3. We have chose not to have anything done with in the actual school due to germs and Gabby being a medically fragile child. This will also help us purchase any more equipment that we will need in our home for her services. I cant say thank you enough Amanda for thinking of Gabby. It means more than you will ever know. So with that said Mike Denning owner of Good Times Saloon is putting on a Poker Run on August 11, 2012."Giving for Gabby" We are still working out the details, and getting posters around. If anyone is able to help donate items for the silent auction, or would like to help in any way please contact Amanda Morehead (419)406-0597. I would like to again say thank you for everything everyone is doing. It means so much to us!

Pumpkin Packs

As a mom of a tubie I am always looking for stylish products for Gabby to use. I don't want other children to fear her. When we got our feeding tube pump we also received the  "black bag" and at first i was just happy to have that. When I would see other parents with it, I knew we all belonged to that "feeding tube club" with a nod and understanding we both knew what that black bag meant. Over time though I wanted something less boring. Something different. Then a friend of mine posted a link to my facebook account about these cute feeding tube bags. I feel in love! They came in so many prints, boys and girls, and now have added a teen line as well.... We had to have one. So with that said we got one. We love it. It has a side pocket on the inside to put a small freezer pack into this way I can keep Gabby's formula cold. That was my biggest problem with the black bag. I just wanted her food not to spoil. We spent 3 months on a controlled 22 hour feed. Then switched to pump feeds 5 times a day with each feed being 30 minutes long. Then did an 8 hour feed at night. I with most parents of special needs children love a full night of sleep. (We don't get to many) I was getting up every 4 hours to refill her bag. Once we got the pumpkin pack in the mail I fell in love. No more waking up every 4 hours. I just threw in a small freezer pack in the small pouch next to her food, and I knew her food would not spoil. It also helped on the hot summer days. I could keep her food cold, while it was feeding her.

I have also found another benefit with the bag, Children are always curious. Adults often tend to be ignorant (We as adults don't mean to be, but its our natural response to something different), but children just want to know. They ask questions, they watch and learn. The pumpkin pack made a new conversation piece for us. We love to educate people on Gabby, I would rather someone ask a question than to stand there and stare. I have even went to the point of asking people if they wanted information because of the staring, most times adults will then start asking questions.. They want to know, but sometimes are afraid to ask fearing they will upset you. The pumpkin pack has taken away an element of fear. Most people don't even know whats in it.

While at our GI's office last month they saw her pumpkin pack for the first time, you could see the love. I handed them information on the brand of bags, and let them play with it.  Now when we go places people ares starting to recognize the pumpkin pack. We have had several people ask if they can look it over and ask our experience with it. We always give good reviews, and give family's the information on how to purchase one them selves.

I as a mom, and doing this review to educate people on special needs products. I do not receive anything for doing this review. Its my personal opinion, and wanting to spread the word on products we love and use on a daily basis. : )

If you don't have a special needs child but would like to help another family in receiving one there is a wish list. We as parents of special needs children have so many expenses and sometimes don't have the extra money to purchase the optional items, and it would make a child's day to receive one! So please consider sponsoring a pack: Here is the link http://www.pumpkinpacks.com/sponsor-a-pack/
If you are looking to purchase one yourself you can  locate Pumpkin Packs here: http://www.pumpkinpacks.com/  or they are also located on Facebook here: http://www.facebook.com/#!/pumpkinpacks

*Pictures to follow. Went to do the photo shoot today and its crazy windy out. With the high wind speeds it tends to take Gabby's breath away and scare her.**

A picture is worth a 1000+ words

 

We have a very large family :) Its not a bad thing, but when I tried to get picture of 16 kids getting 170 eggs, well..hmmmm.... My camera was not large enough to catch it all....but this is how it looked

Kiera got Student of the week!

All Photo's are property of "The Roddy Family Blog"

Kiera got Student of the week!  Kiera's teacher wrote the following:

Mr. Snyder selected Kiera because she has done a good job this year in all her work. She did an excellent job this past week on her Social Studies test. She always does her best and comes to school with a positive attitude. She is a wonderful role model for all the students at Payne. We are excited to have this chance to recognize achievements in and out of the classroom. 

Great Job Princess! I am so proud of you. Love you so much!

Dealing with SSI

Today I was doing some research online and I seen they will be expanding the Compassionate Allowances list! If you are one of the unlucky parents who have had to deal with SSI or have to go thought the process of SSI it can be a real struggle. We decided about 2 months after Gabbys birth it was time to apply. We did get denied right away.(With in two weeks) I put in for an appeal and was waiting for an answer then was informed they were going to put Gabby through on a temporary pass until we got notice of was going to happen next.We got her SSI check for two months due to the amount of time we were in and out of the hospital and the expense (October 2009 and November 2009) Then with out any warning they pulled it back again. Saying her shunt surgery had made her "brain grow back". I just did not understand. If the deciding  people were truly educated on her, and her disease they would know that a brain cant grow back. In January of 2010 I found out they were going to be expanding the Compassionate Allowances list. After some research I found that Walker Warburg Syndrome was on it. I called up our SSI caseworker(At the Local office in Greensburg, PA) and he informed me that since we had applied before they were going to add it that it did not apply to Gabby. Or we the choice we could restart the process again and loose any benefits that we had apply for with the first application. I just did not understand how or why this could be possible.If they are going to be adding it should you not then get it?  Normally a person would go through 4 appeals at the local office level then it would get sent off to be heard by a judge at the main office (ours was in Johnstown PA). Well in Gabby's case they did one denial then sent if off the the main office.(knowing her genetic disorder was on that list it was their easy way out, If we would have had our second hearing at our local office they would have had to accept it) When we received the letter it informed us our wait was around 4 years to get into see the judge. I was devastated. We were a two income family, that was now living off John's unemployment. (John lost his job 7 days before Gabby's birth. At the time we did not see what a blessing it was) Well after many hours of contacting the main office where our hearing was to be, this very nice guy "Mr. Shingles" Not his real name. Told us about pleading finical hardship. He had stated if we did plead finical hardship they have 30 days to get us in for a hearing. Pleading finical hardship means submitting paperwork showing that your gas, electric, water has a shut off notice or paperwork showing you are behind on rent/mortgage payment.With a letter on how this is affecting your life and how you are going to start loosing your home/or the main necessities to run it will be enough to get in front of a judge. That is exactly what we did, Pleaded finical hardship, I sent in a shut off notice for our electric, and gas. Then I also sent in several letters attached with her Genetic report and several letters from our Doctors We also included pictures of Gabby and in in her equipment. Normally if your child's disorder is on the Compassionate Allowances list you will never had the need to be seen in front of the judge. You will get an approval letter with in two weeks (this is how I case worked) We had got approved. It was 3 weeks after her first birthday. So in all we did spent about 9 months getting her SSI. I did it all with out any help from a lawyer. I spent hours preparing paperwork, submitting paper work and several trips getting everything in order with our doctors. Most family spend years waiting to get in front of the judge. If it had not been for "Mr. Shingles" we would have never known to apply for finical hardship and our wait would have been that 4 years. Most family's don't know this exist. Each state is different and we currently live in PA when we did ours. Now we live in Ohio. I hope this information is able to help someone who is going thought the battle, with a medically fragile child. It now provides me with the ability to stay home and raise her. Its cost affective to the insurance company's as well. They don't have to pay for a nurse to come in and take care of her. In the state of Ohio there is also a program called BCMH. This is a program for family's who make to much money to qualify for medicaid with medically fragile children. Its a form of medicaid, but with higher income limits. In many states they offer some form of this. Its just about digging around to find out the correct information. If any other parent lives in another state and can add some information in the comments below please do. The more information that is out there for parents to help them the better!
Here is the link with the new compassionate allowance list:
http://www.ssa.gov/compassionateallowances/conditions.htm
~ Maria Roddy

Meet Gabby's "Team"

Most our Team of Doctors work in Akron. Yes its a far drive but worth every penny of it. Gabby's team of doctors work together in every aspect of her care. They know her on a personal level. Pass one in the hallways on our way to another appointment they will stop talk to her by name, and always ask what is going on with her care. They are personal, they listen to everything that is going on, and use an open mind.When it comes to Gabby sometimes the answers are not so clear. It takes talent and understanding of her Genetic disorder to be able to find the answer! Each one of them view her as a person and not a number. Thus why we have our team. I trust everyone of them. They always have Gabby's best interest at heart. They understand that our choice is to give Gabby the best quality of life, it's not about the quantity of life. We want Gabby's life here on earth to be the best she can have.

Meet our Akron team:

Deborah Holder, MD - NeuroDevelopmental Science Center 

 

Richard Hertle - Director, Pediatric Ophthalmology; Vision Center

Dr. Roger Hudgins, MD

 Director, Division of Neurosurgery

 Director, NeuroDevelopmental Science Center

 Dr. Thaddeus Kurczynski - Genetic Center

Meet Our Toledo Team:

Dr. Ramalinga Reddy - Pediatric Pulmonary Specialist

       

 
                                
 

           Dr Mark Naddaf, M.D. -

     Pediatric Gastroenterologist

       *Photo Not Available*

Debbie Verkin-Siebert

Child Nutrition Specialist

*Photo Not Available*

 
 

Meet Our Cleveland Team:

Dr . Diane Tucker - Ophthalmology- Contact Fittings

  Meet Our Local Team:

Dr. Todd Wiley



Each one of these Doctors play a major role in Gabby's life and care. We could not ask for any better. If you have any questions about any of these Doctors I can tell you they are the best! Else they would not be part of Gabby's story!

Happy Easter!

 

I hope everyone had a Happy Easter and took a moment to remember what Easter is all about. We had a great "Spring Break Week". Kiera went for a visit to Stacy & Nate's, and Dilly came here for a week. During Dillon's week, we did his first photo shoot. I must say as much as he did not want to do it, he LOVED it. We spent time watching movies and shows on Ntflix and Hulu, and just hung out. Dillon made a video with one of his friends, and for the most part had lots of fun. He is growing up so fast. With out any fighting he was willing to help me with about anything I asked (other than taking out Meeko-our dog). He even helped unload the dishwasher (Gasp!) I was gone for 3 of the days (Trip to Akron with Gabby) but did manage to even get some snuggle time with him on Friday night on the couch. I know John was happy to just be able to watch TV and relax with Dill. What once was a fight to get him to come (We still are not sure why?) He now is back to old Dilly. He spent one day "Sleeping till 2-with the answer of come on its my first day of vacation" then was on the go joking around, playing, and just being himself again. I cant wait to have him here over the summer. I miss having him around. The girls even miss him more. Jazmyne and Kirstynn are on refusal to put away his play guns, One is laying at the top of Kirstynn's bed. They keep going though his closet digging out his stuff  .I know Kiera misses him to. She has stole one of his hoodies.
I must say we are very blessed to have our little family. I love almost every minute of it.(Other than the moments of fighting) I count my blessing's everyday. As you will see in our pictures my older brother "Uncle Jesse"  just a litter of baby bunny's (2 weeks old) and had one come visit us at Nana & Papa's house. Gabby was unsure of it, but did let it giver her bunny kisses. We colored eggs later that night and off to be the girls went. Easter morning was a blast. That Easter bunny hid Kiera's eggs extra hard this year, but the funny part was the younger girls found half of the hard ones. The girls all loved what they got, and that Silly Easter Bunny forgot the webkinz in our van till last night. The girls were extra excited to get them (even a couple of days late)! Happy Easter!

EEG~MRI Akron

What a week! I spent last Wednesday, Thursday, and Friday in Akron Children's hospital with Gabby. After last months appointment's with Dr. Debrah Holder (Gabby's Neurologist) we came up with a game plan since her last /only seizure on January 25th. We had decided we would do a 24 hour EEG to compare to her last 1 hour one/ 24 hour EEG. We need to know what was going on and to see if more or less sharp waves are detected. We also meet up with Dr. Hudgins (neurosurgery)and decided it would be best to get some new images of her shunt and then follow up with an MRI after the EEG. I am awaiting the answers of the MRI (Not sure what answers it will give us. We have rejected all MRI's since the day after birth, again as I have stated before unless there will be a medical benefit of giving her a better quality of life we refuse it) But I cant wait to compare her MRI to the first one and the current one. I would like to see how the shunt has affected her scan. We never had one done after her shunt was place at 3 months old. (according to neurosurgery the moment they opened the membrane from around the brain the fluid actually shot out of the tube, so there was a large amount of pressure from to much fluid in her brain-Hydrocephalus)  I was told "off the record by Dr. Brown" that her EEG looked great. There were still sharp waves, but nothing like before. They did not record any seizure activity! (I  did the happy dance with the nurse!) The level of care we receive while there was again perfect as always. I cant say enough about the team of doctors and nurse's we have! They work together in every aspect of Gabby's care! The Easter bunny came to visit us while we where there, and we had lots of time to just play! Gabby's shunt series looked great. They stated it was in place and there is no blockage anywhere! So in all we had a great trip. We did stay at the Ronald McDonald house on Wednesday night. I cant say enough about the lady's who run this house and work here! Everyone is very kind, and welcoming! It's a home away from home. Thank you again for everything you do. If anyone is interested in collecting pop tabs for the Akron Ronald McDonald house please contact me for any information. We currently collect, and so do many others for us. This past trip we were able to take two gallon Ziploc bags full. Last year they collected around $4,000 alone in the Akron house! They use this extra money to purchase TVs and a new Radio system for in the dining room. They are also always in need of travel sized items (such as body wash, shampoo, razors, toothbrush....), house hold products(Ziploc bags, cleaner, hand wash, hand sanitizer) or food products (snack food's something a family can grave and go into the hospital with) If you are interested in donating please feel free to contact me. When we make our trips we make an extra stop at the house to make a donation!


***** Update: We received a phone call from Dr. Holder's office today, nothing new. Her brain still looks the same, but a little larger than before. (With the fluid pressure removed it just expanded) We go in 3 months and will be receive a copy of her MRI's. : )

Photo's

All Photo's are property of "The Roddy Family Blog" and are not to be used with out permission from the blog owner!

*Just needed to put his out there. I have heard that people have been having trouble with photoes being stolen off their blogs, and used. (this is also happened on facebook!) Please dont download or upload any pictures from this blog else I will be forced to close it! :) Happy reading!

 

Gabriella Ellen Roddy
Spring Pictures 2012
"All Picture's are property of the Roddy Family Blog"

 Kiera Lanei Roddy

Spring Pictures 2012

 "All picture's are property of the Roddy Family Blog"

 Dillon Earl Roddy Spring Pictures April 4,2012

Love

Jazmyne Maria Roddy
Spring Picture 2012

Kirstynn Elizabeth Roddy
Spring Pictures 2012

"All pictures are property of the Roddy Family Blog"