Don't Judge Me

Someone posted about the Medicaid buy in program on a local message board for our town. I posted some information on it. Someone suggested I try CHIPS for my son(a buy in insurance program) but he doesn't qualify because I have insurance on him. Plus, it isn't the best of insurance as many doctors don't take it. I posted that I really just needed assistance with the meds since Elijah takes so many medications and they can get expensive. Plust the fact, I am only looking for help with copays since we have insurance and medicaid could act as a secondary insurance.

Well, I guess someone took offense, because they posted "so you expect the taxpayers to pay for your medicaitons?" First of all, it is only for Elijah's meds, not mine or Jacob's meds. Secondly, people who have never dealt with a disabled child, especially one with multiples sometimes hidden disablities, should not judge others on their need for asssistance. Oh it just burned me this morning.

I know there are children with much more severe disablities, but his nuerological disability(tourette syndrome, OCD and ADHD) should not be taken lightly either. It interferes with how he functions in the world and how he interacts with people. If he doesn't take his meds, he cannot function in society. I would like nothing better than for him NOT to need these medicaitons, but he cannot function without them. The amount of money I spend on meds is outrageous. I never even applied for medicaid or SSI until my husband left.Plus he is asthmatic and deaf.

I guess some people just don't get it.

Getting Assistance

I applied for Social Security Income(SSI) last year for Elijah. I was really hoping to get medicaid. Everyone told me, "Oh he is deaf, you will be able to get it for him." Well he didn't qualify due to my income and the child support his dad was paying. We then applied for medicaid and again did not qualify. I didn't even like applying in the first place, but I have paid into the system for a long time and any assistance with medical bills would be helpful.

I am now applying again for SSI. The gentleman I spoke to on the phone who took the information was very nice. He told me that Elijah again would not qualify and would send me an informal denial. I have an appointment for April 5th where Elijah will most likely be denied again. This time, however, I did complete a Child Disability Report online and mail in release forms to the Social Security Administration. Someone from work told me that I should appeal once Elijah is formally denied SSI, because they then start to look more closely at his disablities.

Elijah is deaf and wears cochlear implants. He is still language delayed, but has made so much progress and is really doing well. I don't consider this his main disability anymore. Elijah is also asthmatic and can get very sick very quickly. He takes four medications for his asthma. If he gets sick he takes even more meds. Elijah also has tourette syndrome, OCD, ADHD and anxiety. I consider these four to be his main disabilites at this point. They affect his daily life more than anything. He is on six medications for these disorders. His medications is really what gets to be so expensive. It is also the TRYING of new meds for his tics that can get expensive. You try the med, it doesn't help and then you are out the money. There is no easy way to know what medicaiton will help him with his tics. The doctor bills are not too bad. I would keep Elijah on my health insurance and use medicaid as a secondary insurance.

The other expense that we do have is warrantying Elijah's cochlear implant processors. We did get the warrnty for half price last year, but won't be so lucky this year. The warranty is due in October and will cost around $1500. We will also have to decide if we want to warranty his FM system. There is also a new processor, the Nuclues 5, that is out. It is not backwards compatable to his intenral equipment but will be in the next year, if not sooner. I am hoping that our health insurance will pay for the upgrade, and then he gets a new three year warranty on them. We do have his body worn processors we can trade in towards the price of the Nucleus 5, but without insurance paying part of it, we won't be able to afford the new ones. I wouldn't even push for the new ones, except for the warranty and they are considerablly smaller and would fit Elijah's ears better.

I never even applied for SSI for Elijah prior to my divorce and probably wouldn't have even tried if he were just deaf. My other son is also asthmatic and ADHD. He takes several meds for his asthma and one for his ADHD so his medications add to the cost of the household. All SSI looks at is your income. They don't really look at the maintenance of the disabilities are how they affect daily life.

Elijah is doing well now, but it has not been an easy road. In looking back, the deafness has been the easiest thing to deal with. The asthma was a learning curve for me but he is older and we have a handle on it. He has only been diagnosed with Tourettes and OCD since July of 2008 so we are still learning a lot about those two things and how they work with his ADHD.

There is talk of a medicaid buy in program for children that is in the works, but I don't know when it will start. I was told in September of this year, but now it looks more like 2011 before it is put in place.

I hope it doesn't seem like I am looking for a handout, but rather just assistance so I can provide the best treatment for my son.

Cool things about Elijah being Deaf!

I know there are some that may think this is not the best thing to write about, but there are some cool things about Elijah being deaf. Here are a few of them:

1. Eljah can turn off his hearing any time he likes. Not always a good thing for me, because sometimes he will do it when he is mad at me. He doesn't do it too often though.

2. No one ever knows if he is ignoring them or really not hearing them. Comes in handy with his brother and me.

3. He doesn't have to worry about annoying noises at night when he is trying to sleep.

4. Knowing sign language is cool, if you choose to use it! We all know enough sign that we can chat if needed using it.

5. He can choose cool cochlear implant processor colors and/or decorations! Elijah has camouflage eargear and green earmolds.

6. When he came home from the hospital as a baby, Jacob didn't have to worry being loud while Elijah slept. Elijah could have slept through a train horn!

7. Elijah had the most expressive facial expressions as a baby. We used those to communicate until he started picking up signs.

More on Doctors and others in the medical field

I wrote my previous blog about doctors at the doctor's office on my iphone waiting for Jacob to be seen. It was a short post because I was typing on a small keyboard on the iphone. I was that bored, but I did want to post about it.

After posting the blog, I really started thinking about how doctors have played such a part in our lives since Elijah was born. With Jacob we only had to go to the pediatrician for typical check ups and such. Elijah came along in April of 2000 and I learned all about neonatologsits, repiratory therapists, developmental pediatrician and NICU nurses. I am thankful for all of those people who pulled Eijah through those first five weeks in the NICU.

Elijah failed his hearing test at five weeks of age and we then had to find out where we would go for follow up with that as well as find a pediatric pulmanologist because he was coming home on oxygen. We also had to make an appointment to see the developmental pediatrician. I also had an HMO at this point and had to work closely with our pediatrician to get referrals for all of these doctors. I also had to work with my health insurance to get oxygen delivered to the house and all of that set up. It was an overwhelming task to bring him home.

Since then we added new doctors and new diagnosis: a newENT who implanted Elijah, a new audiologist, a neurologist--for Tourettes, a psychiatrist--for Tourettes, ADHD and OCD, a new pediatrician(who we LOVE) and an endochronologist--for growth issues. He also sees a dentist who says he will need braces earlier than most kids because his top pallet is behind his bottom pallet and pushing his bottom teeth out. There are so many -ists in our life! I have to say that I truly do like ALL of these specialists who see Elijah. They take a personal interest and all comment on how well he speaks. They are amazed that a deaf child can utilize his implants as well as he does. He is not a number, he is a child and when he needs to be seen they get him in. As I said in my previous post, I really don't mind waiting. Sometimes we are the ones needing to be worked in.

Jacob developed bronchitis when he was around nine years old. He got it three times so we went into the pulmanologist for him and found out he has silent asthma. He doesn't wheeze, but he does cough when it flares up. He is also ADHD and takes medication for that, but our pediatrician handles him.

I am also thankful to all of the nurses, respiratory therapists and receptionists who we have dealt with.

Many of these specialists we only see once or twice a year. Others we see more frequently or when the kids get sick. I hate that my children NEED all of these doctors, but I am thankful that they are available...and that I have good health insurance!

Doctor's appointments

As I sit here at the pulmaologist's office going on two and a half hours, I have to remind myself how much I like this doctor. He ans his associates are great doctors who always take the exta time with their patients. They will squeeze in a sick kid and one of mine has been that sick kid. Most visits are not like this and we are not here this long or we are here but have been seen. Jacob is also very congested and needs to be seen. We had no big plans for today and I am so glad my kitchen is clean.

I am trying to see the bright side but it is hard. Elijah ha been so good but even he is getting moody and I don't blame him. We see so many doctors and the wait is the hardest part. Ugh!

Spring Cleaning

Well the boys and I are off this week. I decided to check out all of Elijah's clothes since he has been putting on weight and growing a bit taller. I found some size 12 and 14 jeans that were Jacob's and so I am saving those. I found some 10 regular jeans but most of them were too tight. He has a BELLY on him right now. I did find a great deal of size eight and ten shirts so I think he is good for now on shirts. There are some shorts he can wear also. I went through Jacob's clothes too, but there wasn't much that didn't fit him. However a size 16 pair of pants/shorts that I found on clearance are too small. DANG it. I 'll have to save them for Elijah.

I just bought a pair of eight husky jeans for Elijah about a week ago. In a few weeks he can really start wearing shorts to school everyday. He has one more year where he can wear regular clothes to school and then he goes to standardized dress at school. It really does make it easier when they move to that dress code.

I have about seven bags of clothes to donate tomorrow when we go off. I already had two bags of clothes in the garage from some other cleaning I had done.

I'll just have to make sure to have the boys with me if I decide to shop for them. This is especially true with pants and shorts.

I also cleaned out my refrigeator yesterday and cleaned all of the shelving. OH my they were a mess and it is nice now to open the fridge and see how clean it is.

I may have Jacob help me tackle the garage later this week! Don't you know he will love helping me! NOT!

Ice Cream!

We moved to Texas in 1980 when I was 13 years old. One good thing that came out of this move was our discovery of Blue Bell ice cream. It was something we heard about and tried and as they say..."Blue bell..the best ice cream in the country!" and it is! I craved strawberries and cream ice cream when I was pregnant with Jacob. I always figured it gave him his red hair...ha! I ate it with Elijah too!

When Blue Bell is on sale I always call my dad to let him know. Today I saw Blackberry cobbler blue bell ice cream and bought it. I just ate me a small bowl and OH was it ever good.

Elijah has become a lover of ice cream too! He is currently into Neapolitan ice cream. He likes to put gummy bears in iwth his ice cream! A cherry on top doesn't hurt either!

Now that I am back on my weight watchers I'll have to watch the amount of ice cream I eat. I'll have to measure it and savor every bite. Blue Bell is worth it though!